Inclusion, Equity and Access for Individuals with Disabilities: Insights from Educators across World [1st ed.] 978-981-13-5961-3, 978-981-13-5962-0

Table of contents :
Front Matter ....Pages i-lxxii
Introductory Chapter: Disability Within Contemporary Inclusion Dynamics: A Global Point of View (Vassilios Argyropoulos, Santoshi Halder)....Pages 1-15
Front Matter ....Pages 17-17
The Differently Abled: Exploring the Rights and Legislation in India (Shruti Bedi)....Pages 19-40
Understanding Negative Attitudes Toward Disability to Foster Social Inclusion: An Australian Case Study (Boon Siong Tan, Erin Wilson, Robert Campain, Kevin Murfitt, Nick Hagiliassis)....Pages 41-65
The School-to-Prison Pipeline: The Plight of African American Males in Special Education (Lia Sacks)....Pages 67-87
Disability and Ukrainian Urban Space (Galyna Korniyenko, Inna Kovalyshena, Dmytro Schebetyuk)....Pages 89-107
School Interventions for the Social Inclusion of School-Age Learners on the Autism Spectrum: Review of the Evidence and Future Areas of Inquiry (Sofia Mavropoulou)....Pages 109-124
The Role of Non-formal Learning Environments in Education and Socialization of Children with Visual Disability: The Case of Museums (Vassilios Argyropoulos, Charikleia Kanari)....Pages 125-151
A Comparison of Special Education Teachers’ Attitudes Toward Various Augmentative and Alternative Communication Systems (Shakila Dada)....Pages 153-178
The Continuing Need for Child-Led Approaches Within Inclusive Systems: A Focus on Transition Across 8 European Countries (John Ravenscroft, John M. Davis, Lynn J. McNair)....Pages 179-200
Improving Inclusion and Access for People with Disability in the Causasus: The Case of Azerbaijan (Mike Titterton, Helen Smart)....Pages 201-222
Inclusive Technical Capital in the Twenty-First Century (Simon Hayhoe)....Pages 223-241
Examining the Inclusion of People with Visual Disabilities in Workplace: A Greek Case Study (Vassilios Argyropoulos, Vassilios Papadimitriou)....Pages 243-262
Training Experts in Inclusive Practices for an Equity on Access to Culture in Europe (Anna Matamala, Pilar Orero)....Pages 263-280
Inclusive Employment Plight of Youth with Complex Communication Needs (Maximus Monaheng Sefotho)....Pages 281-296
Kicking a Goal for Inclusion in Sports Clubs and Stadia (Kate L. Anderson, Susan Balandin)....Pages 297-316
Breaking Down Silos: Women with Disabilities Issues, Voices, and Concerns in Family (Pratima Gurung)....Pages 317-344
Front Matter ....Pages 345-345
An Ethnographic Research on Inclusive Education in Colombia: Lessons Learned from Two School Visits (Leda Kamenopoulou)....Pages 347-363
Toward Inclusive Education in Singapore (Vasilis Strogilos, Levan Lim)....Pages 365-381
The Role of Self-Advocacy in Academic Access for Students Who Are Deaf or Hard of Hearing in Higher Education (Magda Nikolaraizi, Christina Kofidou, Merv Hyde)....Pages 383-408
Identification of Specific Learning Disorders and Specific Language Impairment: Issues and Experience in India (Pritha Mukhopadhyay, Lipica Bhattacharya, Prasanta Kumar Roy)....Pages 409-426
Developing Inclusive Education Policy in Sierra Leone: A Research Informed Approach (Richard Rose, Philip Garner, Brenna Farrow)....Pages 427-444
Inclusive Education in Japan: Current Trends and Teachers’ View (Hiroko Furuta)....Pages 445-460
Positive Behavior Support Model for Inclusion of Children with Autism Spectrum Disorder (Santoshi Halder)....Pages 461-477
Inclusive Practice Through Layers of Learning Intervention (Lorraine Graham, Jeanette Berman)....Pages 479-495
Inclusion in Home, Social, and Educational Settings for Children with Autism in India—Enablers and Challenges (Sridhar Aravamudhan, Smita Awasthi)....Pages 497-523
Barriers and Enablers to Inclusion of University Students with Disabilities in India and Australia (Poulomee Datta, Santoshi Halder, Joy Talukdar, Tania Aspland)....Pages 525-553
Providing for the Needs of Young People with Disability in Lebanon (Phil Doecke)....Pages 555-579
Empowerment of Students with Disabilities in University Setting (Krisztina Kovács)....Pages 581-601
Facilitating Factors and Barriers in Implementing Inclusive Education in Romania (Andrea Hathazi, Adrian Roşan)....Pages 603-618
Educational Support Teams’ Perspectives on Inclusion of Learners Who Use Augmentative and Alternative Communication in South African Mainstream Schools (Juan Bornman, Amy Hackeman)....Pages 619-646
Strength-Based Instruction (SBI): A Systematic Instructional Training Model with a Primary Focus on a Child’s Strength (Sumita Chakraborti-Ghosh)....Pages 647-663
Concluding Chapter: Challenges and Strategic Pathways to Participation, Equity, and Access (Santoshi Halder, Vassilios Argyropoulos)....Pages 665-688

Citation preview

Inclusion, Equity and Access for Individuals with Disabilities

Insights from Educators across World Edited by Santoshi Halder · Vassilios Argyropoulos

Inclusion, Equity and Access for Individuals with Disabilities

Santoshi Halder · Vassilios Argyropoulos Editors

Inclusion, Equity and Access for Individuals with Disabilities Insights from Educators across World

Editors Santoshi Halder Department of Education University of Calcutta, Alipore Campus Kolkata, India

Vassilios Argyropoulos Department of Special Education University of Thessaly Volos, Greece

ISBN 978-981-13-5961-3 ISBN 978-981-13-5962-0  (eBook) https://doi.org/10.1007/978-981-13-5962-0 Library of Congress Control Number: 2018966688 © The Editor(s) (if applicable) and The Author(s) 2019 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover credit: YAY Media AS/Alamy Stock Vector This Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

Accepting, respecting and celebrating diversity is the ultimate answer to most unsolved global challenges. —Santoshi Halder Inclusion offers marvelous, multi-dimensional journeys with many variations of discovery about human nature in the space-time continuum; it is up to us to create Ithakas or wastelands. —Vassilios Argyropoulos

Foreword

The experience of disability impacts all people around the world, whether one is him- or herself a person born with a disability, a person who has a family member or close friend with a disability, or as we age, as someone who incurs disabilities or the limitations imposed by health issues in the natural process of getting older. Because of its pervasive impact, it provides both a challenge across cultures and country boundaries as a common concern, but also can afford us an opportunity to align our efforts, set common goals, and make greater impact to address the well-being and quality of life of individuals with disabilities globally. This book offers a unique opportunity to contribute to this path of shared vision for disability inclusion across country-specific contexts, affording a rich array of material from which to identify areas of collective concern and promising practices that we can all learn from to improve our respective efforts. With almost four dozen contributors and over 30 chapters, this volume is an excellent collection of research, perspectives, and ideas across close to 20 countries. The volume focuses heavily on the educational experience and inclusion issues for youth with disabilities, laced with a broader discussion that includes commentary on disability rights, vii

viii     Foreword

accessibility, and technology. Since educational access opportunities form the basis of future opportunities for employment, economic independence, and community participation, this is a most appropriate focus. The disability groups focused on in the respective chapters, afford an opportunity to reflect on how issues of rights and inclusion run throughout the experience of individuals with hearing, vision, cognitive, intellectual, learning, physical, and other disabilities. The emphasis of each chapter, even those all focusing on special or inclusive education, is quite distinct. Examples include discussion around such diverse topics as: the disproportionate number of young African-American males who move from special education to the prison system in the USA; use of different layers of learning intervention to improve student learning in inclusive classrooms in Australia; the need for qualified teachers of special needs students in Lebanon; the criticality of media accessibility in education in Spain; and the strong desire for employment, articulated through a mediated dialogue with youth in South Africa with complex communication needs. Across these chapters, common themes emerge pointing to critical elements that provide a fundamental framework for consideration for worldwide change in improving the status of individuals with disabilities, including: the importance of a global and country-specific public policy environment that protects the rights of individuals with disabilities to equal participation in society; the criticality of equitable access to education, preferably in an increasingly mainstream environment; the importance of trained staff for schools serving youth with disabilities, as well as broader community service systems; how accessibility considerations are continually broadening and must now include attention to technology platforms and tech-intensive organizational infrastructures; and the significance of education for self-advocacy and self-awareness of personal worth which must be a fundamental part of all we do, to truly liberate individuals with disabilities to direct their own future destinies. With the multiplicity of perspectives and endeavors represented in this book, we are making strides toward this desired outcome. Ithaca, NY, USA

Susanne M. Bruyère Ph.D., CRC

Foreword     ix

usanne M. Bruyère, Ph.D., CRC is currently a S Professor of Disability Studies and Director of the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability, Cornell University ILR (Industrial and Labor Relations) School, Ithaca, N.Y. The Yang-Tan Institute is a research, training, and technical assistance center focusing on disability inclusion in employment, education, and community. Dr. Bruyère serves as institute administrative and strategic lead, and also as the PI/Co-PI of numerous research, dissemination, and technical assistance efforts focused on employment and disability policy and effective workplace practices for people with disabilities. She is the author/co-author of three books and over 120 peer-reviewed articles and book chapters on workplace disability inclusion and related topics. Susanne holds a doctoral degree in Rehabilitation Counseling Psychology from the University of Wisconsin-Madison and is a Fellow in the American Psychological Association. Dr. Bruyère is a past president of the Division of Rehabilitation Psychology (22) of the American Psychological Association, the American Rehabilitation Counseling Association (ARCA), the National Council on Rehabilitation Education (NCRE), and past Board Chair of the Executive Board of the Global Applied Disability Research and Information Network on Employment and Training (GLADNET), and the Commission on Accreditation of Rehabilitation Facilities (CARF).

Preface

Human resource is surely the most significant natural resources the world can have which is increasing with leaps and bounds. Living a quality life and enjoying every moment of human existence is perhaps the right of each and every individual. However, we all are not born having the same attributes personal or social/context driven. Differences and diversity is a natural phenomenon which is to be accepted, respected, celebrated, and rejoiced. More than a billion people (10–15% of the world population) live with some form of disability or differential needs. Unfortunately many of these people with disabilities are the most marginalized and vulnerable population worldwide. In spite of the abilities and unique traits, focus is mostly on the “disabilities” rather than the “abilities.” The UNCRPD (2008) has been a catalyst in making a significant stir nationally and globally by emphasizing on the rights of people with disabilities (CRPD) clearly marking a paradigm shift from the medical model to the “social model of disability” as an evolving concept resulting from the interaction between persons with disabilities and the attitudinal and environmental barriers existing in society. Inclusion is the slogan currently worldwide but this is not enough without implementation. Changes have already taken place all over but the pace is xi

xii     Preface

very slow. Strategic movements and actions needs to be undertaken at every tier and hierarchy for a visible notable difference to take place. Significant and effective inclusive practices and conceptual transformations are being felt in many regions and these need to be brought forward and extended and made accessible to as many as possible worldwide. This book is an attempt to capture perspectives of the experienced faculty members or researchers and practitioners belonging to some of the most reputed universities, institutes, and organizations worldwide. All the authors have years of experience of working in close proximity with the people with disabilities and are contributing consistently to provide an accessible and inclusive community. Authors are invited based on consistent, continuous, and significant contribution in a specific area nationally and internationally in the area of inclusion. Authors present various inclusive practices related to equity and access of persons with disabilities across the world in many countries like India, USA, Australia, UK, Greece, Singapore, Azerbaijan, South Africa, Lebanon, Nepal, Japan, Nepal, Ukraine including many EU countries, etc. Authors present cross-cultural perspectives within and across a variety of countries provoking symptomatic and critical analysis of the respective country and issue. Most of the authors have firsthand experience of working across countries on the area of disability studies. The proposed book brings together so many distinguished faculties who are experts and specialized in their respective focus areas and contributing significantly. Studies from around the world provide crucial new aspects of inclusion, equity, and access in one edited volume. This book provides mixed method research from experts in the disability field that may help all readers (scholars, teachers, parents, and community members) develop a deeper awareness of the importance of infusing an inclusive attitude around the world bringing together various cutting-edge inclusive practices in action. The book is categorized into two parts: Part I: Inclusion and Disability: Social Realms and Conceptual Underpinnings Across the World Part II: Identifying Enablers, Barriers and Challenges in Inclusive Education

Preface     xiii

The book is designed to be of use to a wide range of professionals; researchers, practitioners, advocates, special educators, users with disabilities, museum professionals, NGO representatives, and parents providing information and discussions on educational needs, healthcare provisions, and social services which may be beneficial to all irrespective of country and culture who are working or are associated with the field of disability in various ways. Kolkata, India Volos, Greece

Santoshi Halder Vassilios Argyropoulos

Acknowledgements

The idea of bringing out this book volume crystallized and shaped while exploring for inclusive model when visiting various special and inclusive schools, discussing with various stakeholders including researchers, practitioners, teachers, educators, and specialists worldwide. It appeared that in spite of international mandates and legislations which are ratified by many countries there is significant wide differences that need specific focus to address. Significant thoughts created a stir for proposing a book which captures the perspective of various stakeholders from various cultures and countries. The concept and understanding for the proposed book got shaped and influenced by the discussions and discourses with many such significant peoples worldwide during the academic visits, personal visits, conferences, collaborative research projects, etc. and it would be extremely difficult and rather impossible to name so many as consciously or unconsciously they might have evolved the making of the book. I’m extremely thankful to University of Calcutta for providing me the platform and support to flourish my research and academic endeavor. I would like to thank United States India Education Foundation (USIEF) which provided the opportunity and scope as a Fulbright xv

xvi     Acknowledgements

Nehru Senior Research Scholar (2011–2012) to get connected with so many academicians and researchers of the world. In fact, the whole idea of compiling this book initiated during the interviews, meetings, and discussions with so many dedicated, versatile, and amazing people throughout my career until now whom I met for academic or research. My sincere thanks go to the whole team of United States India Education Foundation (USIEF) and Council for International Exchange of Scholars (CIES) for their constant support. I would like to acknowledge the Australian Government, Department of Education and Training for providing the scope again to get connected to the world of scholars in various universities in Australia as an Endeavour Australia India Council Research Fellow (2015–2016). Sincere thanks go to Australian High Commission to provide me the responsibility to represent Australia–India academic exchange as an Endeavour Award Australia (2018) which provided me additional scope for interexchange of thoughts in various top institutes and universities in India. My sincere acknowledgment goes to Indian Council of Social Science Research (ICSSR), National Institute for Humanities and Social Sciences (NIHSS), and University Grants Commission (UGC) for continuously supporting me financially to carry out multiple research projects on the various aspects of disability. I would also like to thank all my research scholars, students who are my constant source of enthusiasm, energy, and passion directly or indirectly driving and energizing me toward significant and contributory work for the society and community. My sincere thanks to the Autism center, Kolkata which has given me enormous support to enhance my understanding toward the needs of the people with Autism spectrum disorder. In order to transform all the transcripts in the form of a book was only possible due to the publishing team at Palgrave Macmillan, who provided the scope and guided us through their step-by-step process in making this book in the current form. My sincere thanks to my research colleague and friend Dr. Vassilios Argyropoulos University of Thessaly, Greece, the Co-editor

Acknowledgements     xvii

of this book to be with me with all his assistance, valuable suggestions, and contribution in all phases and stages of this book. Finally I would also like to thank my husband Dr. Arindam Talukdar, Senior Scientist, Indian Institute of Chemical Biology, my daughter Mihika, my son Kiaan and my mother for providing me the inspiration and throughout support and blessings without which the book would not have been possible. The book is the product of the cumulative efforts of so many people around the world in various countries who trusted to share their own experience and stories and agreed to extend their experiences of abilities and challenges to the world as a book chapter. Special thanks are due to all those people whom I may have missed out. Finally I can’t resist conveying that this is just the beginning of a long amazing journey which will be incomplete without inclusion of all. —Santoshi Halder I dreamed that children with and without disabilities all over the world wanted to prepare a great celebration. In this feast, the parents would accompany the kids and the program included a huge orchestra consisting of students and teachers. I was so moved and anxious at the same time waiting to know my position in the orchestra and the instrument, which I was supposed to play. It was said that the music would be something very new, never heard before. There were countless violins, millions of pianos, harps, and wind instruments. The conductor called me by name and gave me my instrument and a part. The instrument was a single metal triangle and the part was only one single line, two notes in total. I left very sad, went home and I was looking at this funny, miserable triangle. I got very angry and then I tried to forget it. However, the time for the performance came and I did not go to any of the rehearsals but the conductor insisted that I should play these two notes with the triangle. So I did go to this great and unique night. Colors, happiness, and smiles were everywhere. When everybody sat, the conductor gave the sign to start. The melody was angelic, and the children’s faces were shining like the sun. My turn was coming closer and closer and I was feeling my heart beating so loudly. My hand became very heavy and I felt that

xviii     Acknowledgements

I couldn’t use the striker to play the two notes. After some time, the conductor gave me the sign to play my part but I couldn’t. The whole orchestra stopped and everybody was looking at me and waiting. –  I can’t… –  [conductor] But this is your part –  I feel that this is beyond my strength –   [conductor] We cannot carry on if you don’t play. You have to play, otherwise we cannot continue the music and the music has to be continued I exerted all my strength and I felt that it was the most difficult thing I have ever done in my whole life. When the two single notes rang out the whole orchestra carried on totally surrendered to joy and happiness. This volume represents this kind of music. A piece of music, which encompasses “inclusive spirit,” “inclusive thinking,” “inclusive motive.” A piece of music played by all. A great number of scholars, colleagues, practitioners, stakeholders decided to collaborate and share knowledge and experience regarding underpinnings of “inclusion in theory and in action.” This type of work reflects a global unwavering faith in the power and value of inclusive practices, equity, participation and all possible forms of access and accessibility. The book in question is the end of a long “journey” among discussions, meetings, projects, networking, interactions, strong will, and fun. Put it shortly, this piece of work constitutes a synthesis of many facets of a prismatic global view about inclusion and it is quite interesting to find out same and different issues at a local and global level. The global–local duality in inclusive education is very intensive in this book and I strongly believe that it provides at least “excellent food for thought.” I want to thank the generous cooperation of all authors, their trust and constant support and concern in this effort. Many thanks to the members of the publishing team at Palgrave Macmillan for guiding us with their great experience and professionalism focusing on our needs. Special thanks goes to my “fellow traveler,” friend, and excellent researcher Dr. Santoshi Halder, who invited me in this fascinating journey of sharing and creating platforms of contribution and collaboration. Finally, many thanks must go to our families for their unconditional love and unending patience.

Acknowledgements     xix

Last but not least I thank with all my heart all children, youth, and adults with disabilities because their presence and unique “melody” enrich and strengthen social norms that are compatible with the notion of equity, dignity, and participation improving quality of life and social justice. —Vassilios Argyropoulos

Contents

1

Introductory Chapter: Disability Within Contemporary Inclusion Dynamics: A Global Point of View 1 Vassilios Argyropoulos and Santoshi Halder

Part I Inclusion and Disability: Social Realms and Conceptual Underpinnings Across the World 2

The Differently Abled: Exploring the Rights and Legislation in India 19 Shruti Bedi

3

Understanding Negative Attitudes Toward Disability to Foster Social Inclusion: An Australian Case Study 41 Boon Siong Tan, Erin Wilson, Robert Campain, Kevin Murfitt and Nick Hagiliassis

4

The School-to-Prison Pipeline: The Plight of African American Males in Special Education 67 Lia Sacks xxi

xxii     Contents

5

Disability and Ukrainian Urban Space 89 Galyna Korniyenko, Inna Kovalyshena and Dmytro Schebetyuk

6

School Interventions for the Social Inclusion of School-Age Learners on the Autism Spectrum: Review of the Evidence and Future Areas of Inquiry 109 Sofia Mavropoulou

7

The Role of Non-formal Learning Environments in Education and Socialization of Children with Visual Disability: The Case of Museums 125 Vassilios Argyropoulos and Charikleia Kanari

8

A Comparison of Special Education Teachers’ Attitudes Toward Various Augmentative and Alternative Communication Systems 153 Shakila Dada

9

The Continuing Need for Child-Led Approaches Within Inclusive Systems: A Focus on Transition Across 8 European Countries 179 John Ravenscroft, John M. Davis and Lynn J. McNair

10 Improving Inclusion and Access for People with Disability in the Causasus: The Case of Azerbaijan 201 Mike Titterton and Helen Smart 11 Inclusive Technical Capital in the Twenty-First Century 223 Simon Hayhoe 12 Examining the Inclusion of People with Visual Disabilities in Workplace: A Greek Case Study 243 Vassilios Argyropoulos and Vassilios Papadimitriou

Contents     xxiii

13 Training Experts in Inclusive Practices for an Equity on Access to Culture in Europe 263 Anna Matamala and Pilar Orero 14 Inclusive Employment Plight of Youth with Complex Communication Needs 281 Maximus Monaheng Sefotho 15 Kicking a Goal for Inclusion in Sports Clubs and Stadia 297 Kate L. Anderson and Susan Balandin 16 Breaking Down Silos: Women with Disabilities Issues, Voices, and Concerns in Family 317 Pratima Gurung Part II Identifying Enablers, Barriers and Challenges in Inclusive Education 17 An Ethnographic Research on Inclusive Education in Colombia: Lessons Learned from Two School Visits 347 Leda Kamenopoulou 18 Toward Inclusive Education in Singapore 365 Vasilis Strogilos and Levan Lim 19 The Role of Self-Advocacy in Academic Access for Students Who Are Deaf or Hard of Hearing in Higher Education 383 Magda Nikolaraizi, Christina Kofidou and Merv Hyde 20 Identification of Specific Learning Disorders and Specific Language Impairment: Issues and Experience in India 409 Pritha Mukhopadhyay, Lipica Bhattacharya and Prasanta Kumar Roy

xxiv     Contents

21 Developing Inclusive Education Policy in Sierra Leone: A Research Informed Approach 427 Richard Rose, Philip Garner and Brenna Farrow 22 Inclusive Education in Japan: Current Trends and Teachers’ View 445 Hiroko Furuta 23 Positive Behavior Support Model for Inclusion of Children with Autism Spectrum Disorder 461 Santoshi Halder 24 Inclusive Practice Through Layers of Learning Intervention 479 Lorraine Graham and Jeanette Berman 25 Inclusion in Home, Social, and Educational Settings for Children with Autism in India—Enablers and Challenges 497 Sridhar Aravamudhan and Smita Awasthi 26 Barriers and Enablers to Inclusion of University Students with Disabilities in India and Australia 525 Poulomee Datta, Santoshi Halder, Joy Talukdar and Tania Aspland 27 Providing for the Needs of Young People with Disability in Lebanon 555 Phil Doecke 28 Empowerment of Students with Disabilities in University Setting 581 Krisztina Kovács 29 Facilitating Factors and Barriers in Implementing Inclusive Education in Romania 603 Andrea Hathazi and Adrian Roşan

Contents     xxv

30 Educational Support Teams’ Perspectives on Inclusion of Learners Who Use Augmentative and Alternative Communication in South African Mainstream Schools 619 Juan Bornman and Amy Hackeman 31 Strength-Based Instruction (SBI): A Systematic Instructional Training Model with a Primary Focus on a Child’s Strength 647 Sumita Chakraborti-Ghosh 32 Concluding Chapter: Challenges and Strategic Pathways to Participation, Equity, and Access 665 Santoshi Halder and Vassilios Argyropoulos

Notes on Contributors

 r. Kate L. Anderson is a lecturer and D researcher at Deakin University, Australia. Kate initially trained as a speech pathologist, working for six years as a specialist in the areas of cerebral palsy, autism, and augmentative and alternative communication (AAC). Her research interests focus around information access and capacity building for people with disability, their family members, and their professional support networks. Kate has also researched in the areas of friendship, social inclusion, and inclusive recreation for children and adults with disability. As a lecturer Kate teaches health science students about equity, diversity, and universally accessible design.

xxvii

xxviii     Notes on Contributors

ridhar Aravamudhan, B.E., PGDM, M.A, S BCBA (Board Certified Behavior Analyst)  is a mechanical engineering graduate and holds a postgraduate degree in management from the prestigious Indian Institute of Management, Ahmedabad. After working in business development and operations management roles with leading transnational corporations like Pepsico, British Petroleum and Tech Mahindra for 22 years, to help his daughter on the autism spectrum, 8 years ago, he started learning Behavior Analysis. Mentored by the second author, he started as a therapist working with other children with autism, went on to complete a Masters program in Applied Behavior Analysis with Autism Emphasis from Ball State University, Muncie, Indiana, United States and became a BCBA (Board Certified Behavior Analyst, Certificant number 1–12–12008) in 2012. He works with Behavior Momentum India (www.behaviormomentum.com) as a Consultant and Research Associate. He trains therapists and parents and believes that research drives practice excellence. He helps children on the autism spectrum acquire new skills, shapes socially appropriate behaviors and finds effective methods to address challenging behaviors. He teaches Applied Behavior Analysis as a faculty in the Board approved course sequence in India to national and international students. His research interests include teaching conditional discriminations, Precision Teaching and articulation training and he has presented many research papers and posters in international and national conferences. He is also a past president of the Association for Behavior Analysis India.

Notes on Contributors     xxix

 assilios Argyropoulos, Ph.D. is an associV ate professor in the Department of Special Education, University of Thessaly (Volos) in Greece. He holds B.Sc. in Mathematics (Greece) and a Ph.D. in Special Education from the University of Birmingham (UK). His main research field concerns the area of the vision impairment and he teaches in the university since 2003. Previously, he had been teaching in the Center of Education and Rehabilitation for the Blind in Athens for ten consecutive years. He has participated in many national, Erasmus+ and Horizon projects in the areas of special education and he has also coordinated (principal investigator) a great number of national and European projects. He serves the International Council for Education of People with Visual Impairments (ICEVI-Europe) as the national representative and contact person in Balkan Countries (http://icevi-europe.org/greece.php). He is also member of the Committee of the Disability Centre at the University of Thessaly, which supports students who have disabilities and special educational needs during their studies. He has published around 90 national and international publications in peer-reviewed international and national journals including proceedings and has presented many works as invited or keynote speaker in Europe and in the USA. Recently he has been involved in the RIDBC Renwick Center for research and Professional Education (https:// shortcourses.ridbc.org.au/people-type/presenter/), and he is a member of many editorial boards of peer-reviewed international and

xxx     Notes on Contributors

national journals (such as: British Journal of Visual Impairment, Education and Information Technologies, Educational Research and Reviews, The Inclusive Museum, The International Journal of Special Needs Education, Journal of Special Education and Rehabilitation, International Journal of Technology and Inclusive Education). He is active in research on aspects such as haptic apprehension, assistive technology, braille literacy skills, multiple disabilities and vision impairment, and issues of access and inclusion of individuals with vision impairments in formal and non-formal learning and cultural environments. For more information: http://www. sed.uth.gr/images/melh_dep/cv_argiropoulos_ eng.pdf. Tania Aspland  is a Professor in Teacher Education at the Australian Catholic University in Sydney and Dean, Education Policy and Strategy. She provides high-level advice on teacher education, governance and policy. She has been a leader in teacher education for many years particularly in relation to professional standards and evidence-based assessment. She has also instigated new models of professional development within schools and universities, to support the process of curriculum development and leadership. Her teaching career has been committed to building socially inclusive and culturally responsive orientations to learning so as to ensure ­successful outcomes for all students.

Notes on Contributors     xxxi

 r. Smita Awasthi, Ph.D., BCBA  holds a D Doctorate in Behavior Analysis and has 34 years of clinical experience, consulting and training more than 6000 people affected by autism and their families across India, Bangladesh, UK, Oman, UAE and Nepal. She is the Founder and Clinical Director of Behavior Momentum India (www.behaviormomentum.com) established in 2010 to provide behavioral interventions. She has worked on capacity building, skilling therapists and mentoring students in latest technologies in autism intervention. She authored several paper and poster presentations in international scientific conferences in the last 14 years and has been an invited speaker at various conferences including ones by Queen’s University Belfast and the Panteion University of Athens, Greece. She is the first Board Certified Behavior Analyst (BCBA) from India and has completed large research studies on inducing first instances of speech in children with autism as part of her Ph.D. dissertation. She is focused on parent empowerment and provides telehealth services to families in remote parts of India. She is the Program Director of the only BACB approved course in behavior analysis in India and has been recognized for her advocacy on evidence-based services. Among other awards, she also received the Governor’s award for dissemination of autism in the State of U.P. in India in 2005 and the SABA award from the Association of Behavior Analysis International, USA.

xxxii     Notes on Contributors

Susan Balandin  is a Professor and holds the Inaugural Chair in Disability and Inclusion at Deakin University, Australia. A speech pathologist by background, her research centers on the inclusion of adolescents and adults with lifelong disability in the communities of their choice, with a particular focus on people with little or no functional speech and their health and social interactions. She is widely published and holds honorary positions at Edith Cowan University, the University of Helsinki, and NTNU, Norway.  r. Shruti Bedi  is Associate Professor of Law D at the University Institute of Legal Studies, Panjab University and the Coordinator of the IAS Centre, Panjab University. Her areas of specialization are Indian Constitutional Law, Counter Terrorism Law, Internal Security Laws, and Organized Crime. She has also taught at the Centre for Police Administration, Panjab University. A gold medalist for 8 consecutive years in her B.Com (Hons), LL.B, and LL.M, she secured the highest marks ever in her Masters in Law. She is the author of 2 books: Terrorism: Our World and Our Laws, published by a German publisher and Indian Counter Terrorism Law has been published by the international publisher, Lexis Nexis. She is also the editor of the recently published book, Law and Media. She is the Vice President of the Centre for Constitution and Public Policy (CCPP), UILS; and the Chairman of the UILS Alternate Dispute Resolution and Client Counseling Board, UILS, PU. She is a visiting

Notes on Contributors     xxxiii

faculty at the Nottingham Trent University, UK and the Centre for Conflict, Security and Terrorism, Nottingham University, UK. She has also delivered a TEDx Talk on Justice: The First Promise. Jeanette Berman, Ph.D.  is Associate Professor of Inclusive Education at the University of New England, Armidale, New South Wales. Jeanette graduated from the University of New England (UNE) in 1980, started her career in education as a teacher, and soon moved into school psychology. After executive positions in the NSW Department of Education School Counseling Service, she joined the Faculty of Education at UNE in 1999, as a psychologist in the team of teacher educators teaching special and inclusive education. Jeanette continues her practice in psychology using contemporary assessment practices to better understand learners, with a particular interest in learning difficulties. Before returning to UNE in 2017, Jeanette was a member of the Learning Intervention Team at the Melbourne Graduate School of Education for two years. She worked for the previous three years as Director of Educational Psychology at Massey University in Aotearoa New Zealand. There she instigated the reworking of the program using the local indigenous lens to frame and filter Western psychological knowledge for ­culturally aligned and responsive educational psychology practice. Lipica Bhattacharya  is a special educator with a keen interest in special academic needs, training in context of mental health. She is the consultant special educator at Apollo Gleneagles Hospitals—Child Development Center, Mon Psychiatric Nursing Home and Mental Health Foundation. She provides services to the community-developing curriculum for children at Government Delinquent home and training teachers of rural schools for dropout prevention. She has been faculty at the M. Phil. in Clinical Psychology program at Calcutta University. Her own research

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is in the field of identifying learning disability in vernacular schools of Kolkata. She was JRF in a project on “Piagetian tasks among primary school children” and co-investigator in the project entitled “Development of a Diagnostic tool for Clinical Assessment of Specific Learning Disability and Prevalence of Specific Learning Disability in Bengali, Hindi and English medium primary school going children in West Bengal.” J uan Bornman, Ph.D.  is a registered speech-language therapist and audiologist. She also holds the position of professor and director of the Centre for Augmentative and Alternative Communication, at the University of Pretoria in South Africa. For the past 28 years, she has been actively involved in the disability field as trainer, researcher, and activist for one of the most vulnerable groups within the disability spectrum: those who are unable to speak. She has a specific interest in increasing classroom participation in learners with special needs in an inclusive education setting and has published more than 65 papers in peer-reviewed journals, book ­chapters, and books. Dr. Robert Campain’s, Ph.D.  in sociology led him to the disability field where he has been involved in numerous disability-related projects with the Victorian disability service provider, Scope, and Deakin University. The focus of his research has been on social inclusion for people with disability involving participatory research methods. He has collaborated with a variety of organizations both in Australia and internationally. His most recent work focuses on personal choice and control relating to individualized funding models under the National Disability Insurance Scheme in Australia.

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 umita Chakraborti-Ghosh  a Professor of S Special education, and Coordinator of Gifted Endorsement at Tennessee State University, dedicated her entire life to improve the life of others. She has received numerous awards and honors which includes Bilingual Doctoral Fellowship from New Mexico State University, Ministry of foreign affairs (MOFA) fellowship from Taiwan. She was working as an Assistant Professor at Brescia University in Western Kentucky. Her model “Strengths Based Instruction” added a new dimension of instructional strategies, which exemplifies her passion for strengths based teaching to all. She has been presenting on her model all over the world including Australia, Vienna, India and at upcoming conference in Cape Town, SA. She is also serving as the Executive Director of their private foundation (www.soumitsworldfoundation.org) managing funds to fulfill the dreams of underprivileged children around the world including India, Africa, Nepal, Haiti, Honduras, and more. Shakila Dada  is a speech-language pathologist and a Professor at the Centre for Augmentative and Alternative Communication at the University of Pretoria. She has many years of experience in training and implementing AAC in the South African context. Her research and publications concern augmentative and alternative communication interventions with a particular focus on the role of graphic symbols in language learning in classrooms.

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oulomee Datta, Ph.D. is working as a P Lecturer in Special and Inclusive Education in the School of Education, Australian Catholic University (ACU). She has been involved in teacher education and teacher training in special and inclusive education both at the University of Adelaide and Australian Catholic University. Poulomee has worked in several research projects designed to improve the self-concept, test anxiety, and the educational outcomes for children and adolescents with disabilities in Australia and internationally. She was the recipient of four prestigious awards that shaped her career, “Dr. Nellu Singhvi Sancheti Memorial Gold Medal” for excellence in academics at the University of Calcutta, India, “The Outstanding Student Publication Award” at the University of Adelaide, Australia, “The Graduate Scholar Award” at the University of California, USA and the “Research Capacity Building Award” at the Australian Catholic University, Australia. John M. Davis, Ph.D. was appointed as Professor of Education at the University of Strathclyde in 2018. He was previously Professor of Childhood Inclusion, Director of the B.A. in Childhood Studies, and Head of Department of Educational Studies at the University of Edinburgh. His research has examined participatory childhood research methods and children and young people’s perspectives of inclusion, social justice, and integrated working. His knowledge exchange projects have supported children, families,

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and professionals to collaboratively develop contemporary, innovative, and inclusive children’s services. His work has also examined international approaches to multi-professional working and increased our understanding of the factors that foster creative pedagogy and innovative learning.  hil Doecke, Ph.D. retired in 2017 from P full-time teaching and research at RMIT University. His immediate past position (2006–2017) was Coordinator, B Education (Primary Education & Disability Studies) in the School of Education; he was previously Director of the Education/Applied Science (Disability) specialization. He was Head of Physical Education at the University of Papua New Guinea, and Chair of Kinesiology, Health & Physical Education at Biola University, Los Angeles. He focused on teaching inclusive practices and accessibility especially in movement classes such as physical education and school sport. His research interests center on teacher education in disability and special education, and advocacy for inclusive teacher education programs. His presentations and writing have addressed challenges facing teacher education in disability and special education across global societies and cultures; political, social, and cultural impacts upon the development of authentic curriculum in disability and special education; and cultural views of disability and spirituality.

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 renna Farrow, Ed.D.  is a senior lecturer at the B University of Northampton in the department for Special Educational Needs, Disability and Inclusion (SENDI). She is program leader for the Master’s degree program in SENDI. Brenna’s research interests are leadership for inclusive education, pedagogy for enhancing social communication and interaction, and pedagogy for children with ASD. Brenna has extensive international experience having lived overseas for over 16 years in addition to research in Hong Kong, Czech Republic, Sweden, and Oman.  iroko Furuta, Ph.D. is a Professor at the H Special Needs Education Department, Faculty of Education, Kumamoto University, Japan. She obtained her Ph.D. in Disability Sciences from the University of Tsukuba in Japan. She has previously worked as an early intervention specialist/ speech pathologist for children with hearing impairments in Japan and as a development specialist for JICA (Japan International Cooperation Agency) in Sri Lanka. Her research interests include inclusive education in Asian countries such as Sri Lanka, India, and Japan, as well as gender and education of people with disabilities. Philip Garner  is a Professor of Education at the University of Northampton. He taught in mainstream and special schools for 17 years, including 5 years as head of a specialist setting for young people who present challenging behavior. Philip has published widely on issues relating to special education and was editor of The Handbook of Emotional and Behavioural Difficulties (2005, Sage). He is the editor of the journal Support for Learning

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and has acted as consultant to government education departments in Malaysia, Ireland, Croatia, Australia, FYR Macedonia, and Hong Kong. He has researched extensively in both the UK and internationally, including work for research councils, the European Union and UNICEF. orraine Graham, Ph.D. is foundation L Professor of Learning Intervention at the Melbourne Graduate School of Education. During her career, Lorraine has contributed over 90 published academic works, including five books and extensive educational resource materials. She is a Fellow of the International Academy of Research in Learning Disabilities and was commended as an outstanding researcher during the 2015 University of Southern Queensland’s Alumnus of the Year Awards. Lorraine’s career is focused on school inclusion, literacy strategies, basic academic skill intervention and the effective teaching of all students. Pratima Gurung  is a Lecturer in Padma Kanya College, at Tribhuvan University in Nepal. She has completed her M.Phil. including disability in her research and she is currently a Ph.D. student in Tribhuvan University of Nepal. Her work focuses on research and advocacy on gender, disability, and indigenous issues. She has contributed knowledge working on intersectionality of disability, gender, and indigenous issues globally advocating with government, relevant stakeholders, United Nations including United Nations agencies.

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Dr. Nick Hagiliassis, Ph.D. is a senior psychologist and researcher with Scope (a disability service provider in Victoria, Australia) and an Honorary Fellow at the University of Melbourne. Nick has an interest in research that aims to improve the lives of people with disability through influencing practice and policy. His special interests include mental health and disability, measuring outcomes associated with disability services, and tracking and improving social inclusion.  antoshi Halder, Ph.D.  is an associate proS fessor in the Department of Education, University of Calcutta, India. She completed postgraduate studies in education with specialization in special education and educational technology and Ph.D. in applied psychology from University of Calcutta. She is recipient of the prestigious Rockefeller Fellowship, Italy (2018–2019), FulbrightNehru Senior Research Fellowship, United States (2011–2012), Endeavour Australia-India Education Council Research Fellowship, Australia (2015–2016), and Indian Council of Social Science Research (ICSSR)—National Institute of Humanities and Social Sciences (NIHSS) grant (2016–2018) for conducting research in USA, Australia, South Africa, Italy, and India. Dr. Halder has been awarded Endeavour Award Ambassador (2018) by the Australian High Commission and Department of Education and training, Australian Government for promoting Australia-India research and collaboration. She has been recently selected for the prestigious invitational fellowship (2019) by Japan Society for Promotion of Science (JSPS) for exploring the technology-based intervention for children and students with special needs.

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Her research interest includes special education, educational technology, educational psychology, gender studies, comparative studies, cultural studies, etc. She has more than 16 years of teaching and research experience working with people with various categories of disabilities especially people with locomotor disabilities, visual impairment, hearing impairment, intellectual disabilities, and autism spectrum disorder. The importance of her work is evident with more than 70 international publications in peer-reviewed international and national journals and more than 60 paper presentations or invited talks in national and international universities in the USA, Australia, South Africa, Malaysia, Singapore, Indonesia, Austria, Japan, Italy, India, etc. Dr. Halder has been awarded various national and international funding to carry on independent projects by the University Grants Commission (UGC), ICSSR, and NIHSS grants. She is also consultant and co-investigators for various international projects. She received the Governor’s Medal (West Bengal) in 2001 for her contribution toward the community and people as a National Cadet Corps (N.C.C) 2001. Four Ph.D.’s and 12 M.Phil. Dissertations have been awarded under her supervision. She has been an Honorary Visiting Fellow at Olga Tennison Autism Research Centre (OTARC), La Trobe University, Australia. She hails from an army family background, thus following a strict disciplinarian way of life since childhood midst exploring various geographical corners of India together with

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its culture, adventure, and challenge. Being a regular in scout and guide activities during school years and as an N.C.C cadet during college and university years has taught her the basic goal of human existence—“life for all.” She has been formally trained in Basic and Advance Mountaineering from Western Himalayan Mountaineering Institute (WHMI), Manali and National Institute of Mountaineering (NIM), Uttarkashi, India and also been selected for the All India Women Mountaineering expedition, West Bengal. Rather than being called a typical Indian, she would love to function as a Global citizen in the Global world. She is trying in her capacity for working toward inclusion, equity, and access for all. For more information click on official Web site: http://www.caluniv.ac.in/academic/ department/Education/SantoshiHalder.pdf. ndrea Hathazi, Ph.D. is an Associate A Professor at the Special Education Department, Faculty of Psychology and Educational Sciences, Babeş-Bolyai University in Cluj-Napoca, Romania. Her domains of interest are education and rehabilitation of people with multiple disabilities, education and rehabilitation of people with visual impairments, assessment, and intervention programs in Down Syndrome and support programs and resources in inclusive education. She has published in the domain of multiple disabilities Development of communication skills in deafblindness (Presa Universitară Clujeană, 2014), she is the coordinator of the volume Communication in the

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context of multiple disabilities, and she is responsible for the collection Education of people with multiple disabilities at Presa Universitară Clujeană publishing house. She is the coordinator of three Summer Schools regarding Multiple Disabilities that were organized at Babeş-Bolyai University. She has participated to numerous international conferences such as the 6th European Conference on Psychology and Visual Impairment, Budapest, Hungary, 2016 or the 9th ICEVI European Conference in Bruges, Belgium, 2017. Andrea Hathazi is Vice-President and member of the Board of ICEVI-Europe, representing the Balkan Countries. Simon Hayhoe  is a reader in education at the University of Bath and center research associate in the Centre for the Philosophy of Natural & Social Science, London School of Economics. Before moving to Bath, he taught for almost two decades in secondary and higher education in England and the United Arab Emirates. Between 2001 and 2004, Simon was also a research officer at the University of London and a research associate at the University of Toronto. Simon’s Ph.D. is from Birmingham University and his M.Ed. is from Leicester University—he received university scholarships for both postgraduate degrees. Simon also won a number of postdoctoral academic awards, including a Fulbright AllDisciplines Scholar’s Award and fellowships of the British Computer Society, Royal Society of Arts, and the Metropolitan Museum of Art— Simon is the first teacher to win an All Disciplines Scholar’s Award from the US-UK

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Fulbright Commission. Simon is currently working as part of a research team investigating and developing museum apps for people with disabilities in Spain, the UK, and Austria. This project is funded by a €3.8 million Horizon 2020 grant from the European Union. Simon’s work on blindness and disability is recognized internationally, and as a school teacher he delivered guest lectures and presentations at Harvard University, the London School of Economics, MIT, Berkeley, and the Free University in Brussels, among others. As a full-time academic Simon also delivered guest lectures and keynote addresses for Great Ormond Street Hospital, University of Toronto, Central St Martins School of Art and the Royal National Institute for the Blind. In addition, his writing was featured on BBC Radio 4, syndicated Internet radio in the USA, the Atlantic Magazine, The Conversation, Yahoo! and the Metro, among others. Simon’s first book also became part of a theatrical installation project at Battersea Arts Centre in London by Extant.  my Hackeman  is a qualified speech-lanA guage therapist (Stellenbosch University, South Africa), with a master’s degree in augmentative and alternative communication (University of Pretoria, South Africa). Amy has worked in a variety of clinical settings including a rehabilitation center, hospitals, rural clinics, and schools. Her roots are now planted in a special needs school, servicing learners with severe intellectual disabilities from low-income communities. She is also a clinical supervisor to undergraduate SLT students, a facilitator for parent support groups and does outreach in her local community.

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Merv Hyde  is Professor Emeritus of Griffith University and has worked as an educator and as a child development specialist in many countries. He was Director the Griffith Centre for Deafness Studies and Research and worked in research in the fields of deafness for over 40 years. His research focuses on the use of cochlear implants, communication development, learning and educational achievement among deaf and hard of hearing children has been well documented in the international literature. He is Member of the Order of Australia (AM) in Australia and developing countries. He is currently Professor of Education at the University of the Sunshine Coast, in Queensland Australia. eda Kamenopoulou, Ph.D. is a Senior L Lecturer in Special and Inclusive Education at the University of Roehampton, London, and Fellow of the UK Higher Education Academy. She has published widely on Special Educational Needs and Inclusive Education, and she is the editor of a book on Inclusive Education and Disability in the Global South recently published by Palgrave Macmillan.  harikleia Kanari  holds two Bachelors, in C Special Education and in Museum Education with honors degree, as well as a M.Ed. in “Modern Learning Environments and Didactic Material Development” from the University of Thessaly. She also holds a Ph.D. on museums and people with visual impairments (University of Thessaly) with scholarship from the Ph.D. Scholarship Programme “Heraclitus II” (NSRF, Co-financed by the EU and Greece). She has

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worked as special education teacher in different educational settings. She has also participated in national and international projects and conferences. She has published papers in international peer-reviewed journals and conference proceedings. Her research interests include issues of access and inclusion in formal and non-formal learning and cultural environments. She is currently a postdoctoral researcher at the Department of Special Education of the University of Thessaly. Christina Kofidou  is a Ph.D. student at the University of Thessaly, Department of Special Education and a student at the postgraduate program “Special (Inclusive) Education” at the European University of Cyprus. She holds a master degree in “Cognitive and Motor Development” from the Department of Early Childhood, University of Western Macedonia and the Department of Physical Education and Sport, Aristotle University of Thessaloniki. She also holds a master degree in the field of Systematic Philosophy, from the Department of Philosophy and Pedagogy, Aristotle University of Thessaloniki. She received her Bachelor Degree of Philosophy and Pedagogy from the Aristotle University of Thessaloniki and a Bachelor Degree in Classical Philology from the Aristotle University of Thessaloniki as well. She knows Greek Sign Language, English, French and Italian. She has worked in the field of adult and special education since 2006. Her research interests involve issues of access of students with disabilities and specifically deaf and hard of hearing students, inclusive education, differentiated instruction and universal design for learning.

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alyna Korniyenko, MUP (Master of G Urban Planning) is a doctorate student in City and Regional Planning at the Ohio State University. She was a Fulbright Scholar at the University of Kansas where she holds a Master of Urban Planning. Gala is also an administrator of the American Planning Association’s Planning for Underserved Populations Interest Group and a member of World ENABLED, an educational non-profit organization that promotes the rights and dignities of persons with disabilities (http://worldenabled.org/tag/ gala-korniyenko/). Krisztina Kovács  is the head of the Disability Centre, previously a lecturer on visual impairment at the Faculty of Special Education of ELTE University. She has participated in a number of national and international projects in the area of supporting students with disability in higher education with writing special information on Web sites, like on the United Information on Disability Portal. She has worked out a special training course for disability coordinators. She has participated in Exchange Ability Project https://exchangeability.eu/ and conducted research in the field of Accessibility of Exchange Programs for Blind and Partially Sighted Students. She used to serve the International Council for Education of People with Visual Impairments-Europe (ICEVI-Europe) as the secretary and the regional representative of the CentralEuropean countries between 1995–2002 and 2013–2017. She holds B.A. in Special Education and Teaching English as a Foreign Language and M.A. in Special Education.

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Inna Kovalyshena, M.A. lives in Vinnitsa, Ukraine. She has a Master’s degree in History from the Vinnitsa State Pedagogical University. Inna is interested in cultural anthropology. She contributed the historical overview of treating disability in the Ukrainian society of late nineteenth and early twentieth century. Inna also writes fantasies and volunteers for the Ukrainian weblog “The World of Fantasy.” Recently they covered the topic of heroes with disabilities in fantasies. Levan Lim  is an Associate Professor and Head of the Early Childhood and Special Needs Education Academic Group at the National Institute of Education, Nanyang Technological University, Singapore. He obtained his Ph.D. in Special Education from Lehigh University, Pennsylvania, USA, and has been a faculty member at Charles Sturt University at Bathurst, New South Wales and the University of Queensland, Brisbane, Australia before his current position in Singapore. His teaching and research interests include severe disabilities, intentional communities, school to post-school transitions, ­disability studies, and inclusive education.  nna Matamala, B.A.  in Translation (UAB) A and Ph.D. in Applied Linguistics (UPF, Barcelona) is since 2009 a senior tenured lecturer at the Universitat Autònoma de Barcelona. Anna Matamala leads the research group TransMedia Catalonia and has participated in funded projects on audiovisual translation and media accessibility. She is currently leading the national project NEA and is involved in the European projects ACT,

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ADLAB PRO, UMAQ, ImAc, and EasyTV. She has taken an active role in the organization of scientific events such as the Media for All conference or the Advanced Research Seminar on Audio Description (ARSAD) and has published extensively in international refereed journals such as Meta, The Translator, Perspectives, Babel, Translation Studies, among others. She is the author of a book on interjections and lexicography (IEC, 2005), co-author (with Eliana Franco and Pilar Orero) of a book on voice-over (Peter Lang, 2010), and co-editor of various volumes on audiovisual translation and media accessibility. Joan Coromines Prize in 2005, and APOSTA Award to Young Researchers in 2011. Her research interests are audiovisual translation, media accessibility, and applied linguistics. She is currently involved in standardisation work at ISO. Website: gent.uab.cat/amatamala. Sofia Mavropoulou  is a Senior Lecturer in the School of Early Childhood & Inclusive Education and Study Area Coordinator for the area of Inclusive Education (Master of Education) in the Faculty of Education at the Queensland University of Technology in Australia. Sofia has extensive experience teaching in pre-service, in-service, and postgraduate teacher training courses in universities in Europe and Australia. With funding from the Greek Government and the European Union, she has participated (as chief investigator and associate researcher) in research projects focused on the educational support of students with autism and the study of social inequalities in the experience of mothers raising children with

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autism in Greece. She has published and presented her research in refereed journals and international conferences. In collaboration with colleagues from Australia and the USA, Sofia is currently involved in research (funded by QUT’s HEPP Program, the Autism CRC, and the Australian Association of Special Education) aimed to support students with autism in inclusive schools and in tertiary education. ynn J. McNair, Ph.D. is the Head of L Cowgate Under 5s Centre in Edinburgh and is a Senior Teaching Fellow at the University of Edinburgh. Lynn has extensive experience working in Early Education and was awarded an OBE for services to Early Education in 2009. Lynn has trained many early years practitioners/teachers in Froebelian philosophy. Lynn is passionate about children’s rights, egalitarianism, and democracy. Lynn is an award-winning author. Her research interests focus on Froebelian pedagogy, children’s rights, social justice, children’s geographies, transition, leadership, and management. Her most recent work challenges the “testing” of young children and the school starting age. Pritha Mukhopadhyay  is a Professor at the Department of Psychology, University of Calcutta and the Coordinator of the UGC Funded Centre with Potential for Excellence in Particular Area (CPEPA), University of Calcutta. She is carrying out research with quantitative EEG and brain-train programs at CPEPA. She is a gold medalist of University of Calcutta and also a Fulbrighter. Her research interests lie in the areas of

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Psychophysiology and Neuropsychology. She has more than sixty journal publications, at national and international levels, and has authored ten book chapters published by SAGE, Springer and Pentium Press among others. She is recipient of several research projects awarded by UGC, ICSSR, AICTE and DIPR and DST. Dr. Kevin Murfitt, Ph.D.  Member of the Order of Australia (AM), is a lecturer in Disability and Inclusion, School of Health, and Social Development, Deakin University. He has significant research experience in disability, human rights, advocacy, and workforce diversity. Kevin’s Ph.D. thesis confirmed negative attitudes towards employment of people with disability as the major barrier to the employment and independence of people with disability.  agda Nikolaraizi, Ph.D. is an Associate M Professor in Inclusive Education-Education of the deaf at the Department of Special Education, at the University of Thessaly, Greece. Also, she is the director of the accessibility center for students and staff with disabilities at the University of Thessaly. Dr. Magda Nikolaraizi has participated in 6 research projects as a research fellow and has been principal investigator in 3 research projects. She has published 60 papers in international peer-reviewed journals and conferences proceedings and 27 papers in Greek peerreviewed journals and conferences proceedings. Her work has received more than 300 citations. She is the reviewer in many international peer-reviewed journals. Her research interests lie within the area of inclusion and access of individuals with disabilities with a special interest in the access of individuals who are deaf or hard of hearing to informal and formal learning.

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 ilar Orero, Ph.D. (UMIST, UK) teaches P at Universitat Autònoma de Barcelona (Spain) in the Faculty of Political Science and Sociology. Recent publications: Anna Maszerowska, Anna Matamala and Pilar Orero (eds) (2014) Audio Description. New Perspectives Illustrated and with Anna Matamala Researching Audio Description. She has acted as leader of numerous research projects funded by the Spanish and Catalan Gov. Lead the research group TransMedia Catalonia http://grupsderecerca.uab.cat/ transmedia/. Expert at ITU IRG-AVA— Intersector Rapporteur Group Audiovisual Media Accessibility http://www.itu.int/en/ irg/ava/Pages/default.aspx and also at ISO/ IEC JTC 1/SC 35 WG6 User Interfaces. She holds the INDRA Accessible Technologies Chair since 2012. She participated in DTV4ALL, lead HBB4ALL (2013–2016) and is now leading KA2 ACT (2015–2018). She participates in the KA2 Trieste University led ADLAB PRO. She also enjoys the Marie Curie Scholarship COMM/MAD 2017–2019 “Understanding Media Accessibility Quality” with Gian Maria Greco. In the next three years, she will be working in two new H2020 funded projects: Easy TV (2017–2020) and ImAc (2017– 2020). She is working at present on Easy to Read applied to all accessible services to produce Easy to Listen Audio Description, or Easy to Read Subtitles.

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assilios Papadimitriou, Ph.D. has been V working the last ten years in typical and special secondary schools as a special education teacher. He has also worked at the University of Thessaly and the Hellenic Open University (Greece). He has participated in the project “Handedness and Braille Literacy in Individuals with Severe Visual Impairments,” which was implemented under the “ARISTEIA” Action of the “Operational Programme Education and Lifelong Learning.” He has fifteen publications in journal papers and proceedings of national and international conferences, while he has written a book in Greek regarding the braille literacy skills. He holds a bachelor degree in Greek Philology (2004) from the University of Athens. In 2008, he obtained a postgraduate diploma in Special Education and Psychology from the University of Athens and in 2016 received his Ph.D. degree from the University of Thessaly. His thesis examined the effect of handedness on braille reading and spelling accuracy of students with severe visual impairments. He now holds a post-doc position in the Department of Special Education in the University of Thessaly. John Ravenscroft (Chair of Childhood Visual Impairment)  is a Professor, Psychologist, Educationalist and dabbles a little in Philosophy. He has vast experience of inclusive education and has advised various governments, locally, nationally, and internationally on promoting successful inclusive education. Professor Ravenscroft is also head of the Scottish Sensory Centre, which is a national center that provides Career Long

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Professional Development for Teachers of Children with Sensory Impairment including those with CVI. Prof Ravenscroft is also the current Editor in Chief of the British Journal of Visual Impairment and lectures on inclusive education, visual impairment, as well as on areas of virtue epistemology and ontology.  drian Roşan, Ph.D. is a Professor at the A Special Education Department, Faculty of Psychology and Educational Sciences, BabeşBolyai University in Cluj-Napoca, Romania. His research experience refers to the screening, assessment of cognitive processes and CU traits and their relationship with specific abilities at different ages. He is consultant editor for the Journal of Evidence-Based Psychotherapies http:// jebp.psychotherapy.ro/journals-board/. He elaborated a screening procedure for psychopathy for the adolescents in juvenile detention facilities in Romania and he carried out for the first time in Romania a study referring to callousunemotional traits and the development of an evidence-based screening procedure with well-known international and transcultural measurements for adolescents in all juvenile detention facilities in Romania. Adrian Roşan translated and adapted for Romanian population the evidence-based measurements of callousunemotional traits and aggression (Inventory of Callous-Unemotional traits, Frick, 2004 Peer Conflict Scale, Marsee & Frick, 2007, Antisocial Process Screen Device, Massachusetts Youth Screening Device- MAYSY-2, Grisso & Barnum, 2000), as well as of a series of measurements for the evaluation of nonverbal accuracy (The Diagnostic Analysis of Nonverbal

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Behavior—DANVA 2). He was visiting scholar and researcher in the Developmental Psychopathology Laboratory, University of New Orleans, New Orleans, USA. He is the author of 7 books as main author, 19 book chapters and numerous articles. Richard Rose  is a Professor of Inclusive Education in the Centre for International Inclusive Pedagogy and Research at the University of Northampton UK. Having completed his doctorate at the University of Leicester, Richard has worked on a number of research projects in the UK, Malta, India, Singapore, Sierra Leone, Bhutan, and Georgia. He was the principal investigator on Project IRIS a four-year longitudinal study of special educational needs provision in the Republic of Ireland and has conducted investigations for governments, non-government agencies, including UNICEF and Sightsavers and for research councils. Richard’s work has been published in a wide range of academic journals and he is the author/co-author of 16 books in the area of inclusive and special education. Richard has worked regularly in India for the past twenty years as a teacher, researcher, and consultant.  rasanta Kumar Roy is a clinical psychologist P Assistant Professor of Clinical Psychology at Institute of Psychiatry—Centre of Excellence, Kolkata. His professional training is from Central Institute of Psychiatry, Ranchi, India. He has guided over 25 M.Phil. dissertations and is having 20 research publications in international and national journals. He is also in the editorial and reviewer boards of many international and

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national journals. His areas of interest are developmental disorders, health psychology, behavior therapy, psychological assessment, and adventure sports. Lia Sacks  grew up in Chicago, Illinois in the USA, and she received her bachelor’s degree in severe disabilities special education and high-incidence disabilities special education in May 2016 from Vanderbilt University, located in Nashville, Tennessee. As an undergraduate student, Lia served as a teaching assistant in an undergraduate educational psychology course, played clarinet in the Vanderbilt Marching Band, and served as a tutor for young adults with developmental disabilities. In addition, she was sponsored by the university to engage in international volunteer experiences where she provided classroom instruction to orphaned children and adolescents in Rwanda, Cambodia, and Vietnam. From June 2016 to April 2017, Lia served as an English Teaching Assistant (ETA) in Kolkata, India as part of Fulbright, a 9-month merit-based cultural educational exchange program sponsored by the US government. As an ETA, Lia taught special education and middle school English at Akshar School in Kolkata. She completed a master’s degree in severe and multiple disabilities special education at Columbia University Teachers College in New York City in May 2018. Lia is currently completing her second master’s degree in Elementary Education and English for Speakers of Other Languages (English as a Second Language (ESL)) at the University of Michigan in Ann Arbor,

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Michigan. After graduation from Michigan, Lia plans to return to New York City to ­continue her career as a special educator in the the NYC public school system. Dmytro Schebetyuk  is a Co-founder at Urban Space 500 and Co-Founder at Доступно. UA (Accessible Ukraine). Dmytro is a disability rights activist and a blogger (https://www.kyivpost.com/tiger-conference/ ukraines-top-30-under-30/dmytro-schebetyuk-activist-fights-improve-accessibility-businesses-disabilities.html).

 aximus Monaheng Sefotho is a senior M lecturer at the University of Pretoria. His ­ research focuses on inclusive employment. He authored a chapter on Disability and inclusive employment through the lens of educational psychology. In Eloff and Swart (2018). (Eds.). Understanding educational psychology. Cape Town, Juta and Company (PTY) Ltd.

 elen Smart, B.Sc., M.Sc. was formerly H Programme Manager of Health & Life for Everyone. She is now a Senior Health Promotion Specialist with Lothian Health. Her interests include promoting health, welfare, and education for socially excluded groups as well as gender-based violence in the UK and in worldwide settings.

lviii     Notes on Contributors

Vasilis Strogilos  is an Associate Professor at the Southampton Education School, University of Southampton (UK). He obtained his Ph.D. in special education from the University of Birmingham (UK). He has previously worked at the University of the Aegean and the University of Thessaly (Greece), the Roehampton London Online University (UK) and the National Institute of Education, Nanyang Technological University (Singapore). His research interests include co-teaching, differentiated instruction and multidisciplinary collaboration as means to the development of inclusive pedagogy and curricula for all students with a specific focus on students with disabilities. Joy Talukdar, Ph.D.  Research Executive Officer at the Institute for Positive Psychology and Education, Australian Catholic University, manages and oversees grant applications amidst other administrative functions for the Institute. His research spans teaching and teacher education, in particular aspects that address teacher quality. He has worked in the capacity of a consultant to the Australian Institute for Teaching and School Leadership (AITSL) in the domain of teaching professional experience. He has also worked on two research projects: one with the Australian Research Council (ARC)—Discovery Project entitled “Enhancing numeracy learning and teaching across the curriculum” and a second with the Learning Sciences Institute Australia (LSIA) on “a meta-analysis on reading to

Notes on Contributors     lix

write.” He has had 15 publications to date that evince pressing concerns in pre-service teacher education and circumnavigating but not limited to curriculum policies and inclusivity. Boon Siong Tan  completed an Honors degree (2013) from Deakin University in Health Sciences with majors in Disability and Inclusion, and Psychology. His work drew on a major national research project (“The 1 in 4 Poll”). His thesis explored people with disability’s experience of negative attitudes on which this chapter is based. Recently, he has completed a Masters in Medical Radiation (2017) from Monash University and is currently working as a Radiation Therapist where he continues to be informed by his knowledge of disability.  ike Titterton, M.A., M.Phil., Ph.D.  is an M honorary Knowledge Exchange Fellow with the University of Edinburgh and is also a freelance international expert working worldwide with donors, governments, NGOs, and community groups. He was formerly Director of Health & Life for Everyone, an international social enterprise that assisted children and adults at risk of harm in the UK and internationally. His interests include improving outcomes for socially excluded people and the transfer of knowledge for the improving of policy and practice, both in the UK and in developing countries worldwide. Erin Wilson, Ph.D. and Associate Professor at Deakin University, is a researcher in the field of participatory social change. She has worked extensively in the areas of disability and inclusion and, prior to this, indigenous community management, and development. Her work has focused on the design of inclusive and participatory methods that enable a full diversity of participation, including children and adults with diverse

lx     Notes on Contributors

disabilities encompassing research in Australia, Papua New Guinea, and Vanuatu. Her current interests include outcomes measurement and capacity building for social inclusion, and a significant focus is now on research related to Australia’s National Disability Insurance Scheme.

List of Contributors

Kate L. Anderson, Ph.D.  Senior Lecturer in Disability and Inclusion, School of Health & Social Development, Faculty of Health, Deakin University, Australia Sridhar Aravamudhan, B.E., PGDM., M.A., BCBA Research Associate, Behavior Momentum, India, Professor, BACB Verified Course Sequence, India Vassilios Argyropoulos, Ph.D. Associate Professor, Department of Special Education, University of Thessaly, Greece Tania Aspland, Ph.D. Professor and Dean of Education Policy and Strategy, Government Policy and Strategy, Australian Catholic University, Australia Smita Awasthi, Ph.D., BCBA Founder Clinical Director, Behavior Momentum India and Program Director & Professor BACB Verified Course Sequence, India Susan Balandin, Ph.D.  Inaugural Chair in Disability and Inclusion, School of Health & Social Development, Faculty of Health, Deakin University, Australia lxi

lxii     List of Contributors

Shruti Bedi, Ph.D. Associate Professor, University Institute of Legal Studies, Vice President, Centre for Constitution and Public Policy (CCPP), Panjab University, India Jeanette Berman, Ph.D. Associate Professor, Inclusive Education, School of Education, University of New England, Armidale, New South Wales, Australia Lipica Bhattacharya Consultant special educator, Apollo Gleneagles Hospitals, Child Development Center, Mon Psychiatric Nursing Home and Mental Health Foundation, Kolkata, India Juan Bornman, Ph.D.  Professor and Director, Centre for Augmentative and Alternative Communication (CAAC), University of Pretoria, South Africa Susanne M. Bruyère, Ph.D.  Professor of Disability Studies, Director, K. Lisa Yang and Hock E. Tan Institute on Employment and Disability, Cornell University ILR, School, Ithaca, NY, USA Robert Campain, Ph.D.  Research Fellow, School of Health and Social Development, Deakin University, Australia Sumita Chakraborti-Ghosh, Ph.D. Professor, Special Education, Coordinator Gifted Endorsement, Department of Teaching and Learning, College of Education, Tennessee State University, USA Shakila Dada, Ph.D. Professor, Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa Poulomee Datta, Ph.D. Lecturer, Australian Catholic University, Faculty of Education and Arts, National School of Education, Australia John M. Davis, Ph.D.  Professor of Education, School of Education, University of Strathclyde, Glasgow, Scotland, UK Phil Doecke, Ph.D.  Former program manager B Education/B Applied Science (Disability), School of Education, RMIT University, Australia Brenna Farrow, Ed.D. Senior lecturer, Special Educational Needs, Disability and inclusion Department, University of Northampton, UK

List of Contributors     lxiii

Hiroko Furuta, Ph.D. Professor, Department of Special Needs Education, Faculty of Education, Kumamoto University, Japan Philip Garner, Ph.D.  Professor, University of Northampton, UK Lorraine Graham, Ph.D. Professor of Learning Intervention, Melbourne Graduate School of Education, University of Melbourne, Australia Pratima Gurung, M.Phil.  Lecturer, Padma Kanya College, Ph.D. student, Tribhuvan University, Nepal Nick Hagiliassis, Ph.D. Senior Psychologist and Researcher, Scope, Melbourne, Australia Amy Hackeman, M.Sc. Speech-language therapist, Stellenbosch University, South Africa, Centre for Augmentative and Alternative Communication (CAAC), University of Pretoria, South Africa Santoshi Halder, M.A (Ed.), Ph.D. (App. Psych.)  Associate Professor, Department of Education, University of Calcutta, India Andrea Hathazi, Ph.D. Associate Professor, Special Education Department, Faculty of Psychology and Educational Sciences, BabeşBolyai University in Cluj-Napoca, Romania Simon Hayhoe, Ph.D. Reader, University of Bath and Centre Research Associate, Centre for the Philosophy of Natural and Social Science, London School of Economics, UK Merv Hyde, Ph.D. Professor Emeritus, Faculty of Science, Health, Engineering and Education University of the Sunshine Coast, Australia Leda Kamenopoulou, Ph.D.  Senior Lecturer in Special and Inclusive Education, School of Education, University of Roehampton, UK Charikleia Kanari, Ph.D. Post-doctoral researcher, Department of Special Education, University of Thessaly, Greece Christina Kofidou, M.A. Doctoral student, Department of Special Education, University of Thessaly, Greece

lxiv     List of Contributors

Galyna Korniyenko, M.Sc. Doctoral student of City and Regional Planning Program, Knowlton School of Architecture, Ohio State University, USA Krisztina Kovács, M.A. ELTE University Service Center, Office for Supporting Students’ Special Needs, Eötvös Loránd University, Budapest, Hungary Inna Kovalyshena, M.A. student of Vinnitsa State Pedagogical University, Department of History, Ethnology and Law, Ukraine Levan Lim, Ph.D. Associate Professor, Early Childhood and Special Education, Academic Group, National Institute of Education, Nanyang Technological University, Singapore Anna Matamala, Ph.D. Senior lecturer, TransMedia Catalonia Research Group, Department of Translation, Interpreting and East Asian Studies, Universitat Autònoma de Barcelona, Spain Sofia Mavropoulou, Ph.D. Senior Lecturer, School of Early Childhood and Inclusive Education, Faculty of Education, Queensland University of Technology, Australia Lynn J. McNair, Ph.D. Head of Cowgate Under 5s Centre, Senior Teaching Fellow at the University of Edinburgh, UK Pritha Mukhopadhyay, Ph.D. Founder and former president and Clinical Director, Behaviour Momentum, India Kevin Murfitt, Ph.D. Senior Lecturer, Disability and Inclusion, School of Health and Social Development, Faculty of Health, Deakin University, Australia Magda Nikolaraizi, Ph.D.  Associate Professor, Department of Special Education, Director of the Accessibility Centre for students with disabilities, University of Thessaly, Greece Pilar Orero, Ph.D.  TransMedia Catalonia Research Group, Department of Translation, Interpreting and East Asian Studies, Universitat Autònoma de Barcelona, Spain

List of Contributors     lxv

Vassilios Papadimitriou, Ph.D.  Post-doctoral researcher, Department of Special Education, University of Thessaly, Greece John Ravenscroft, Ph.D. Professor, Chair of Childhood Visual Impairment, Head and Director of the Scottish Sensory Centre, Moray House School of Education, University of Edinburgh, UK Adrian Roşan, Ph.D. Professor, Special Education Department, Faculty of Psychology and Educational Sciences, Babeş-Bolyai University in Cluj-Napoca, Romania Richard Rose, Ph.D. Professor, Centre for International Inclusive Pedagogy and Research, University of Northampton, UK Prasanta Kumar Roy Clinical Psychologist, Assistant Professor of Clinical Psychology, Institute of Psychiatry, Centre of Excellence, Kolkata Lia Sacks, Masters, M.A.  Columbia University, New York, USA Fulbright English Teaching Assistant, India (2016–2017) Dmytro Schebetyuk  Disability Rights Activist, Co-founder Dostupno, Ukraine Maximus Monaheng Sefotho, Ph.D.  Associate Professor, Department of Educational Psychology, University of Johannesburg, Johannesburg, South Africa Helen Smart, B.Sc., M.Sc. Senior Health Promotion Specialist with Lothian Health, Former Programme Manager of Health & Life for Everyone, UK Vasilis Strogilos, Ph.D. Assistant Professor, Early Childhood and Special Education Academic Group, National Institute of Education, Nanyang Technological University, Singapore Associate Professor, Centre for Research in Inclusion, Southampton Education School, University of Southampton, UK Joy Talukdar, Ph.D.  Research Executive Officer, Australian Catholic University, Institute for Positive Psychology & Education, Australia

lxvi     List of Contributors

Boon Siong Tan, B.A. (Hons) Honours Student (2013), School of Health and Social Development, Deakin University, Australia Mike Titterton, Ph.D. Director, Health & Life for Everyone and Honorary Knowledge Exchange Fellow, University of Edinburgh, UK Erin Wilson, Ph.D. Associate Professor, Disability and Inclusion, School of Health and Social Development, Faculty of Health, Deakin University, Australia

List of Figures

Fig. 21.1 The consultation process Fig. 22.1 The school cluster model in each middle school area (Note Figure created by Furuta and Ohsugi (2016) based on Yamaga Education Board (2015)) Fig. 23.1 Percentage of trials during control and test conditions of trial-based FA Fig. 23.2 Responses an hour of problem behavior and alternative responses during baseline for the participant. FCT-functional communication training; EXT-extinction Fig. 24.1 Responsive teaching and educational casework (Berman and Graham 2018) Fig. 24.2 Tiers of evidence-based intervention (Berman and Graham 2018) Fig. 24.3 Layers of learning intervention (Berman and Graham 2018) Fig. 24.4 Flexible use of individual and small group teaching connected to the classroom program Fig. 25.1 Teaching Bheem to wait for preferred items and activities (Note Dashed line represents criterion duration targeted in those sessions)

440 450 471 472 481 483 484 493 503 lxvii

lxviii     List of Figures

Fig. 25.2 Teaching Bheem to wait for cake (Note Dashed line represents criterion duration targeted in those sessions) 504 Fig. 25.3 Intervention with a terminal goal of having Tiara eat her lunch with peers at the table without crying (Note 16 pieces equaled 2 rotis—The full meal target; Training was done daily—probes were conducted to confirm achievement at different stages) 506 Fig. 25.4 Jhulon—Illustrative set of skills and number of targets achieved along with days to acquisition 508 Fig. 25.5 Jassi’s cumulative acquisition of learning units across domains 513 Fig. 25.6 Illustrative examples of improvement in speed and accuracy in component academic skills—labeling instructor actions, writing 1–20, labeling phonic sounds 514 Fig. 25.7 Acquisition of speech sounds for communication by KS, 12-year-old non-vocal child with autism with manual sign (request) training, and paired vocals 515 Fig. 28.1 The number of students with disabilities in the Hungarian higher education between 2002 and 2016 (Source unpublished presentation of the Education Authority at Coordinators’ Conference in 2016) 589 Fig. 28.2 The number of students with disabilities, classified according to types of disability, at Eötvös Loránd University (ELTE) in the academic year of 2017/2018 (Source Data gathered by the disability coordinator of ELTE) 591 Fig. 31.1 Theoretical Framework 653 Photo 5.1 Inna at the entrance to the bank Photo by Inna Kovalyshena 96 Photo 5.2 Ramp and stairs at “Khreschatyk City” Mall in Cherkasy Photo by Galyna Korniyenko 97 Photo 5.3 Dmytro Schebetyuk testing accessibility in Kyiv Photo provided by Dmytro Schebetyuk 99 Photo 5.4 Example of a good ramp entrance in Kyiv Photo provided by D. Dmytro Schebetyuk 100

List of Figures     lxix

Photo 5.5 A small tactile copy of Palace for Marriage in Cherkasy with Braille for blind citizens Photo provided by Alyona Gordienko 102 Photo 5.6 Photo of Anatoly running with a guide in Kyiv Photo by Anna Gorelova via Facebook 105 Photo 5.7 Photo of Anatoly and the Guide Runner team Photo provided by Anatoly 106

List of Tables

Table 3.1 Table 3.2 Table 3.3

Respondent distribution by disability type 48 Negative attitudes experienced in last 12 months 50 Knowledge: negative attitudes experienced by disability type 52 Table 3.4 Competency: negative attitudes experienced by disability type 53 Table 3.5 Hostility: negative attitudes experienced by disability type 53 Table 3.6 Negative attitudes experienced by disability type and settings (14 items) 55 Table 3.7 Respondents (1 in 4 poll) suggestions for improving attitudes (top 4) 58 Table 7.1 SET’ perceptions about social skills which can be developed within museums by children with visual disability 137 Table 7.2 SET’ perceptions about the conditions for the development of social skills for children with visual disability in museums 139 Table 8.1 Mean age of each group 159 Table 8.2 Group descriptions 162 Table 8.3 Comparison for differences between two videos 163 Table 14.1 Table of Fofa participants 289 lxxi

lxxii     List of Tables

Table 21.1 Four regions from which data were collected 434 Table 21.2 Key issues within the four themes 436 Table 21.3 Categorisation of respondents in interviews and focus groups 437 Table 22.1 Members included in the SNE coordination committee 449 Table 22.2 Providing reasonable accommodations: incremental support 451 Table 22.3 Incremental case meeting 451 Table 28.1 The proportion of students with disabilities in some countries 589 Table 30.1 Biographical questionnaire description and justification for inclusion 628 Table 30.2 Focus group interview schedule 630 Table 30.3 Themes identified from questions 1–4 634 Table 31.1 Identification of strengths 659 Table 31.2 Activities 660

1 Introductory Chapter: Disability Within Contemporary Inclusion Dynamics: A Global Point of View Vassilios Argyropoulos and Santoshi Halder

Notions, Challenges, and Goals The ultimate target of this collaborative work is to present how universities, institutions, associations, educators, practitioners, and ­ policy makers assume central roles not only in advancing the frontier of knowledge in disability and inclusion but also in pioneering new means for diffusing and exploiting this knowledge. During the past years, aspects of disability have been put under the microscope of the social model, which supports that disability is not an individual difficulty, but a problem caused by barriers in society (Nind and Seale 2009). Currently, inclusion is the prevalent educational policy for the instruction of students with disabilities or special educational needs in many countries (Ferguson 2008) established in the argument that all V. Argyropoulos (*)  Department of Special Education, University of Thessaly, Volos, Greece e-mail: [email protected] S. Halder  Department of Education, University of Calcutta, Kolkata, India © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_1

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2     V. Argyropoulos and S. Halder

students should have equal learning opportunities with the rest of the students in a “school for all” (Keil 2012). The notion of inclusion and its multi-level structure is high in the educational agendas and has led to many educational reformations. Clifton (2004) argues that “inclusion, and thereby participation, in the educational system, is more than simply access to education” (p. 77). Since inclusion refers to a wider community which embodies a number of cultural and linguistic diversities, educators have to strive to highlight the complexity of inclusion and encourage the development of an “inclusive ethos” accompanied with a flexible curriculum and classroom management (Clifton 2004). This perspective has led to the necessity of changing classic techniques and strategies and reflect on collaborative networks conducted by teachers, pupils, and researchers which seek to advance an agenda for inclusion bringing or conveying changes to institutional cultures and practices (Ainscow et al. 2003; Argyropoulos and Stamouli 2006; Langerock 2000; Lloyd 2002; Schoen and Nolen 2004). At the same time, inclusive education challenges issues of classic pedagogy lead to conflicts between different set of values and goals (Armstrong and Moore 2004). According to Rodney (2003), inclusive education is not just a matter of inaugurating a new term in the educational terminology rather is a shift from one set of beliefs to another. Principles which are underpinned by notions such as empowerment, emancipation, and equity are embedded in the context of inclusion, and many times practitioners and their co-researchers confront dilemmas and difficulties (Armstrong and Moore 2004; Thompson 2004). It seems that inclusion has two basic goals. The first one aims at the removal of all barriers that prevent participation and learning for students with disabilities and special educational needs, and the second one focuses on the detailed development of cultures, policies, and methods in the educational settings in order to equip those students with skills that can be utilized inside and outside school (e.g., social skills) (Booth and Ainscow 2002). However, it is crucial to mention that inclusion is not addressed exclusively to students with disabilities; on the contrary, all students, with or without disabilities, learn together in a flexible child-centered environment (Nutbrown and Clough 2004; Wedell 2005). In such a school framework, students are taught that all

1  Introductory Chapter: Disability Within Contemporary …     3

individuals are different, but they can co-exist harmoniously from an early age since they belong to the same community (Wexler 2009). Broadly speaking, there are three main models adopted for the inclusion of students in primary and secondary regular schools. The first model refers to the simple placement of the students with disabilities or/and special educational needs in the general classrooms without a particular kind of support. The second model refers to the usage of resource rooms which are located in general schools, and a special education teacher is responsible for the students with disabilities or/and special educational needs who are enrolled in the resource rooms. The third one describes a context, which consists of two teachers in the same classroom, the general teacher and the special education teacher who is normally qualified in issues pertinent to special education. The theoretical perspectives of the latter model are underpinned by the notion of co-teaching or team-teaching, a teaching model that occurs when two or more professionals collaborate to plan, decide, and deliver instruction to a certain number of students in the same physical place (Argyropoulos and Nikolaraizi 2009; Luckner 1999). A co-teaching model allows general and special education teachers to share their skills and knowledge, to face difficulties and solve problems together enabling them in such a way to respond more effectively to the diverse needs of their students (Luckner 1999), facilitate their access to learning (Jiménez-Sánchez and Antia 1999; Kirchner 1994), and as such promote “inclusive thinking.” Inclusion concerns the notion of belonging, the right to have access, and equal opportunities to get involved in all school activities. The basic requirements for a successful inclusion process are the quality advice, the advanced planning, the good teamwork, and the preparation, which demand effective communication, team feedback, and acceptance when things do not work well (Roe et al. 2014). Other factors that contribute to the inclusion of students with disabilities and special ­educational needs are the healthy social-emotional factors which lead to the social development (Aviles et al. 2006), a sense of well-being, good social competence with peers, good school performance (de Verdier 2016) as well as the legislative framework (Appelhans 1993). In turn, the underestimation of the psychological consequences of the notion of disability,

4     V. Argyropoulos and S. Halder

the lack of accessibility in the school area and activities, negative attitudes, or lack of appropriate feedback from teachers and peers should be avoided (Hess 2010; Roe 2008). Apart from the relevant services and specialists, parents play an important role, since they convey information about their children, and provide continuous support and incentives, which motivate them to improve or not to improve (Sacks et al. 2011). For example, Ajuwon and Oyinlade (2008), based on their research, concluded that most parents enrolled their children with visual impairments to typical schools for reasons related to the needs of parents themselves, while the rest preferred special schools taking into account the well-being of children and the quality of education provided. However, some parents refuse to cooperate with the school services because they have not yet accepted their children’s impairment (Kitsiou 2015), or they are critical of the social situation in the schools (de Verdier 2016).

Inclusive Qualities in Contemporary Learning Environments Inclusion relates to a dynamic process by which the diversity of the students is respected and acknowledged during their education in their locality (Booth and Ainscow 2002). On the other hand, many school systems are poor examples of inclusive education because they implement programs without using a thorough and considerate planning process (Walther-Thomas et al. 2000). In our view, these contradictory notions of “what is inclusive and what is not” result in confusion about how to interpret inclusive qualities regarding the everyday school practice. For this, it is argued that in order to promote inclusive thinking, a specific methodological umbrella is needed every time in order to bridge the teaching role and the researching role aiming at “opening up possibilities through a re-examination of taken-for-granted ideas and perspectives” (Phillips and Carr 2006). Inclusive action research, for example, may consist of a promising avenue for practical interpretations and implementation of inclusive practices because it encompasses a political element (Armstrong and Moore 2004).

1  Introductory Chapter: Disability Within Contemporary …     5

In the past, inclusion was identified simply by the access to the school building, yet the most recent trend concerns the access of students with disabilities to the curriculum (McLinden et al. 2016; Soukup et al. 2007). Designed educational programs are very important, and as a result, educators and educationalists have to respond to the diversity among learners in ways that are more inclusive. The development of collaborations and partnerships between schools as institutions and school teachers is considered to be crucial for the evaluation and improvement of relative activities, the diffusion of good practices toward inclusion, and the equal opportunities to learning experience. For this, it may be argued that the underpinning of all effective types of intervention have to be based on the concept of differentiated instruction, according to which instruction is planned in such a way to meet the needs of all learners and maximizing their capacity (Subban and Round 2015; Van Gardener and Whittaker 2006). All the above can be incorporated in a broader concept and that is the notion of the universal design. The implementation of the principles of the universal design is in line with the users’ real needs irrespective of the environment (e.g., learning, technical, cultural, entertaining). The general policy of universal design was planned to respond to the widest possible audience with the minimum possible adaptations and the highest possible access (Stephanidis et al. 1998; Tokar 2004). In addition, the implementation of the concept of the universal design in terms of learning environment and learning procedures led to the notion of the “Universal Design for Learning - UDL” (Heacox 2009). According to Heacox, the Universal Design for Learning incorporates trainees’ (or students’) readiness, interest, or learning profile and also accommodates a variety of formal and informal assessments. By using the principles of UDL, educators and trainers can plan a “Differentiated Learning Programme” consisting of stages differentiating content, process, and product as well as learning environment. The more organized in terms of UDL a teaching process is, the more effective can be considering the differences in terms of participants’ readiness, interest, and learning profile (Broderick et al. 2005; Voltz et al. 2005). Otherwise, all “ex post” interventions will hardly succeed because of the absence of universal design elements (Hart 1992).

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Finally, many researchers have conducted studies linking UDL to assistive technology and self-esteem which is worth taking into account in syllabus framework and educational interventions as well (Murray et al. 2004; Terwel 2005). Exemplary actions regarding differentiation and universal design may be considered the moves and actions of the museums during the last few years. It seems that over the last few years, museum access ­movements struggle to find the balance between the treasures that are entitled to protect and the right of people with visual impairments to have access to works of arts by touch. On this ground, many steps were done to the direction of orientation and mobility inside the museums, such as embossed floors, audible warning systems, and guide dogs, as well as to the direction of blind individuals’ accessibility to works of art, such as touch collections, touch exhibitions, touch tours, audio guides, verbal descriptions, handling sessions, three-dimensional models, replicas, relief sculptures, information in braille, large print, tactile diagrams, and workshops (Argyropoulos and Kanari 2015; Axel and Levent 2003; Boussaid 2004). Another influence which occupies chief role in the contemporary “inclusive evolution” is the influence of modern technology on society. Technology has influenced tremendously traditional schemes of instructional practices, curricula, and workplaces. These findings have contributed to modifications of instructional methods and teaching strategies and as consequence teachers primarily and, students in return, have to be well versed in the growing body of this “new knowledge.” In our information-based society, this is a tremendous capability and provides unprecedented educational and vocational opportunities for students and people with disabilities and special educational needs (see, e.g., Kelly 2016). For example, Groff underlines the influential role of technology in school learning environments by stating: Successfully preparing all learners with the skills and capacities for 21st century citizenship—global awareness, creativity, collaborative problem-solving, self-directed learning—is no small order, and many educational leaders are finding that the traditional forms of education that have evolved through the end of the last century are simply inadequate for achieving these goals. At the same time, while our outer world was

1  Introductory Chapter: Disability Within Contemporary …     7

transforming, considerable advances have been made in the learning sciences, forcing educators to reconsider how they approach learning, instruction, and the environments created to foster these…. (Groff 2013)

Because of the invading character of technology in formal and nonformal learning environments, it is vital that all implementations should be incorporated in the notion of the universal design. A representative example constitutes a very recent study which has reported that digital barriers concerning the accessibility of university students with visual impairments seem to affect negatively their quality of university studies (Vojtech 2016). A good practice would be to build the electronic environment in compliance with the universal design requirements—as mentioned above—adjusted to the specific needs of all students, indiscriminately (Vojtech 2016).

The Roadmap of the Present Project The purpose of “Inclusive Practices, Equity and Access for Individuals with disabilities: Insights from Educators across World is to provide an overview of issues in hands-on inclusion, ” combining theory and practice. It draws together current information about the nature and contemporary educational needs of individuals with disabilities and details regarding best practices in their education from a global point of view. The authors of the chapters are researchers specialized in their respective fields, draw on current political, social, and cultural underpinnings inferences and comment regarding the educational contemporary act, which is embedded in a global inclusive context. The content of the present work is based and developed around two main dimensions which in most chapters are effectively interwoven into a social, economic, and political interactive network. The first one refers to inclusive practices, equity, and access for individuals with disabilities from a global point of view and the second one from a local or regional point of view (countries from all over the world). ‘Inclusive Practices, Equity and Access for Individuals with disabilities: Insights from Educators across World ’ has brought together scientists

8     V. Argyropoulos and S. Halder

and scholars from different disciplines to share their ideas, diffuse their experience, and create this book. It sheds light on the pedagogical act of inclusion through a global network considering inclusive practices as the different facets of a prism. In brief, all themes in this book are bound up with attitudes and concepts toward disability and inclusion through the lens of: • World Health Organization (WHO) and International Classification of Functioning, Disability and Health (ICF). • environmental factors that can contribute to the experience of disability. • inclusive practice of “learning intervention”—how it is formalized in educational settings, and how it needs to be flexible and adaptable in order to respond to the variability of the learning needs of individuals and groups of learners. • responsive teaching and educational casework practice and different “layers” of intervention. • contemporary frameworks, models, and approaches, such as Response to Intervention (RtI) models, mainstream e-learning Substitution, Augmentation, Manipulation, and Reproduction (SAMR) model and child-led approaches participatory approaches. • assessing barriers with respect to issues of empowerment and the enforcement of rights in education, labor, and culture. • voice of people with disabilities, which needs to be strengthened through advocacy and empowerment initiatives to encourage more active participation. • heterogeneity embedded in individuals with disabilities and models which deal with this heterogeneity such as deficit models or models of shared responsibility. • new trends of cultural diversity which have created many challenges and controversies in many education systems, including the disproportionately high allocation of racial minority students in special education programs. • empowerment movements in higher education and the famous persons and activists with disability.

1  Introductory Chapter: Disability Within Contemporary …     9

• development of an inclusive society in which values such as “social acceptance,” “social participation,” “social harmony,” and “social cohesion” are strongly featured in the political discourse. • barriers of access which are considered as multidimensional— physical, sensory, communication and language barriers, intellectual, emotional/attitudinal, financial, cultural, educational, etc.—and thus educators and policy makers have to develop a systematic policy for the improvement of access giving great emphasis on people with disabilities and establishing accessibility as a must-carry requirement in all types of cultural content. • critical issues about education in inclusive settings and inclusive systems that still encounter implementation difficulties in building and maintaining social relationships in schools contributing to detrimental educational outcomes, which in turn may lead to their transfer in more segregated environments. • Initial Teacher Training toward the preparation of the teachersof-tomorrow with leading pedagogical insight, effective lesson design, methods of assessment stressing the importance of, and need for, inclusive practice within the classroom for children with special educational needs, with the notion of inclusion becoming a popular political agenda item.

Inclusion and Inclusive Practices The adoption of an inclusive educational policy in most countries created at the same time a fertile ground for the devaluation of special schools. Additionally, the environment in special schools is regarded as restrictive and seems not to promote sufficiently their students’ social and communication skills (Mithout 2016). For instance, special high schools in Japan have been defamed that they provided inadequate education to students with visual impairments, which resulted in a very low enrolment rate in higher education graduates (Mithout 2016). However, this “image” was different two decades ago. For instance, Corn et al. (1995) administered a questionnaire to a great number of families who had a child with visual impairments asking to describe the

10     V. Argyropoulos and S. Halder

advantages—if any—of special schools for the blind. Families praised the services, the exceeding resources and opportunities provided to their children, the qualitative instruction, and the most skilled staff compared to local schools. Families also expected their children to make more progress and have more opportunities in adult life through special schools. On the other side, it has also been stressed that in typical schools, children with disabilities do not receive appropriate instruction in order to (a) actively participate in learning, (b) have full access to the general core curriculum, and (c) acquire social skills (Hatlen 2004). Despite the progress achieved in the name of inclusion, the shift in perceptions is rather slow (Hyder and Tissot 2013). Even nowadays, equal opportunities are refuted and students quite often face discrimination and exclusion, because of an amplified gap between theory and practice (Dyson 2001). To sum up, the inclusion of students with disabilities needs more targeted research data, which will correspond to students’ needs and potential. There is no more space for theories and idealistic policies. In contrast, pluralistic evidence-based research is essential so as to embody valuable knowledge to the entire spectrum of the education of students and eventually provide them qualitative instruction. Of course, this presupposes significant raise in the funding for education (e.g., accessible facilities, educational material) as well as the recruitment of specialized personnel of various specialties, who will be trained appropriately and regularly in order to implement teaching strategies which will promote inclusion and benefit for all students. An equally significant challenge concerns the social inclusion. It is a very demanding process, which is established by working social relations in class intensively from the beginning (de Verdier 2016). Finally, researchers and teachers should draw more attention to the opinions and the wills of the students, in order to enrich their understanding in terms of intervention, inclusion (Ajuwon et al. 2012; Artiles and Kozleski 2010; Barnes and Harlacher 2008; Khadka et al. 2012), and differentiation (Thomsen 2012; Strogilos et al. 2017), and comprehend different aspects of inclusion in all sectors of life (Whitburn 2014).

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References Ainscow, M., Howes, A., Farrelll, P., & Frankham, J. (2003). Making Sense of the Development of Inclusive Practices. European Journal of Special Needs Education, 18(2), 227–242. Ajuwon, P. M., Lechtenberger, D., Griffin-Shirley, N., Sokolosky, S., Zhou, L., & Mullins, F. E. (2012). General Education Pre-service Teachers Perceptions of Including Students with Disabilities in Their Classrooms. International Journal of Special Education, 27(3), 100–107. Ajuwon, P. M., & Oyinlade, A. O. (2008). Educational Placement of Children Who Are Blind or Have Low Vision in Residential and Public Schools: A National Study of Parents’ Perspectives. Journal of Visual Impairment and Blindness, 102(6), 325–339. Appelhans, P. (1993). Integration of Visually Impaired Students. European Journal of Special Needs Education, 8(3), 221–239. Argyropoulos, V., & Nikolaraizi, M. (2009). Developing Inclusive Practices Through Collaborative Action Research. European Journal of Special Needs Education, 24(2), 139–153. Argyropoulos, V., & Stamouli, M. (2006). A Collaborative Action Research Project in an Inclusive Setting: Assisting a Blind Student. Journal of Visual Impairment and Blindness, 24(3), 128–134. Argyropoulos, V. S., & Kanari, C. (2015). Re-imagining the Museum Through “Touch”: Reflections of Individuals with Visual Disability on Their Experience of Museum-Visiting in Greece. ALTER-European Journal of Disability Research/ Revue Européenne de Recherche sur le Handicap, 9(2), 130–143. Armstrong, F., & Moore, M. (2004). Action Research. Developing Inclusive Practice and Transforming Cultures. In F. Armstrong & M. Moore (Eds.), Action Research for Inclusive Education: Changing Places, Changing Practice, Changing Minds (pp. 1–16). London: Routledge Falmer. Artiles, J. A., & Kozleski, B. E. (2010). What Counts as Response and Intervention in RTI? A Sociocultural Analysis. Psicothema, 22(4), 949–954. Aviles, A. M., Anderson, T. R., & Davila, E. R. (2006). Child and Adolescent Social-Emotional Development Within the Context of School. Child and Adolescent Mental Health, 11(1), 32–39. Axel, S. E., & Levent, S. N. (2003). Art Beyond Sight. A Resource Guide to Art, Creativity and Visual Impairment. New York: AFB Press. Barnes, A. C., & Harlacher, J. E. (2008). Clearing the Confusion: Responseto-Intervention as a Set of Principles. Education and Treatment of Children, 31(3), 417–431.

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Booth, T., & Ainscow, M. (2002). Index for Inclusion: Developing Learning and Participation in Schools. Bristol: CSIE. Broderick, A., Mehta-Parekh, H., & Reid, D. K. (2005). Differentiating Instruction for Disabled Students in Inclusive Classrooms. Theory into Practice, 44(3), 194–202. Bussaid, M. (2004). Access of Individuals with Severe Visual Impairments to Museums. In Α. Tsitouri (Ed.), Access of Individuals with Disabilities in Areas of Sports and Culture (pp. 55–59). Athens: Ministry of Culture. Clifton, M. (2004). We Like to Talk and We Like Someone to Listen: Cultural Difference and Minority Voices as Agents of Change. In F. Armstrong & M. Moore (Eds.), Action Research for Inclusive Education: Changing Places, Changing Practice, Changing Minds (pp. 77–91). London: Routledge Falmer. Corn, A. L., Bina, M. J., & DePriest, L. B. (1995). The Parent Perspective on Schools for Students Who Are Blind and Visually Impaired: National Study. Alexandria, VA: Association for Education and Rehabilitation of the Blind and Visually Impaired. de Verdier, K. (2016). Inclusion In and Out of the Classroom: A Longitudinal Study of Students with Visual Impairments in Inclusive Education. British Journal of Visual Impairment, 34(2), 130–140. Dyson, A. (2001). Special Needs Education as the Way to Equity: An Alternative Approach? Support for Learning, 16(3), 99–104. Ferguson, D. L. (2008). International Trends in Inclusive Education: The Continuing Challenge to Teach Each One and Everyone. European Journal of Special Needs Education, 23(2), 109–120. Groff, J. (2013). Technology-Rich Innovative Rich Environment. Retrieved by https://www.oecd.org/edu/ceri/Technology-Rich%20Innovative%20Learning %20Environments%20by%20Jennifer%20Groff.pdf. Hart, S. (1992). Differentiation—Way Forward or Retreat? British Journal of Special Education, 19(1), 10–12. Hatlen, P. (2004). Is Social Isolation a Predictable Outcome of Inclusive Education? Journal of Visual Impairment & Blindness, 98, 676–678. Heacox, D. (2009). Making Differentiation a Habit: How to Ensure Success in Academically Diverse Classrooms. Minneapolis: Free Spirit Publishing. Hess, I. (2010). Visually Impaired Pupils in Mainstream Schools in Israel: Quality of Life and Other Associated Factors. British Journal of Visual Impairment, 28(1), 19–33. Hyder, E., & Tissot, C. (2013). ‘That’s Definite Discrimination’: Practice Under the Umbrella of Inclusion. Disability and Society, 28(1), 1–13. ISSN 1360-0508. https://doi.org/10.1080/09687599.2012.695579.

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Jiménez-Sánchez, C., & Antia, S. (1999). Team-Teaching in an Integrated Classroom: Perceptions of Deaf and Hearing Teachers. Journal of Deaf Studies and Deaf Education, 4(3), 215–224. Keil, S. (2012). RNIB Survey of VI Services in England and Wales 2012: Report for England. London. Kelly, S. M. (2016). Inclusion and Students with Visual Impairments. In General and Special Education Inclusion in an Age of Change: Impact on Students with Disabilities (pp. 95–111). Bingley, UK: Emerald Group Publishing Limited. Khadka, J., Ryan, B., Margrain, T. H., Woodhouse, J. M., & Davies, N. (2012). Listening to Voices of Children with a Visual Impairment: A Focus Group Study. British Journal of Visual Impairment, 30(3), 182–196. Kirchner, C. (1994). Co-enrolment as an Inclusion Model. American Annals of the Deaf, 139, 152–156. Kitsiou, M. (2015). Children of a Lesser School: An Interdisciplinary Study on Disability in the Greek Educational Reality. Master Thesis Gender Studies, Department of Thematic Studies, Linköping University. Langerock, N. L. (2000). A Passion for Action Research. Teaching Exceptional Children, 33(2), 26–32. Lloyd, C. (2002). Developing and Changing Practice in Special Educational Needs Through Critically Reflective Action Research: A Case Study. European Journal of Special Needs Education, 17(2), 109–127. Luckner, J. (1999). An Examination of Two Co-teaching Classrooms. American Annals of the Deaf, 144(1), 24–34. McLinden, M., Douglas, G., Cobb, R., Hewett, R., & Ravenscroft, J. (2016). ‘Access to Learning’ and ‘Learning to Access’: Analysing the Distinctive Role of Specialist Teachers of Children and Young People with Vision Impairments in Facilitating Curriculum Access Through an Ecological Systems Theory. British Journal of Visual Impairment, 34(2), 177–195. Mithout, A. L. (2016). Children with Disabilities in the Japanese School System: A Path Toward Social Integration? Contemporary Japan, 28(2), 165–184. Murray, R., Shea, M., Shea, B., & Harlin, R. (2004). Issues in Education: Avoiding the One-Size-Fits-All Curriculum: Textsets, Inquiry, and Differentiating Instruction. Childhood Education, 81(1), 33–35. Nind, M., & Seale, J. (2009). Concepts of Access for People with Learning Difficulties: Towards a Shared Understanding. Disability & Society, 24(3), 273–287. Nutbrown, C., & Clough, P. (2004). Inclusion and Exclusion in the Early Years: Conversations with European Educators. European Journal of Special Needs Education, 19(3), 301–315.

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Phillips, D. K., & Carr, K. (2006). Becoming a Teacher Through Action Research: Process, Context and Self-Study. London: Routledge. Rodney, P. (2003). The Psychological Aspect of Visual Impairment as a Central Understanding in the Development of Inclusion. The British Journal of Visual Impairment, 21(1), 19–24. Roe, J. (2008). Social Inclusion: Meeting the Socio-emotional Needs of Children with Vision Needs. British Journal of Visual Impairment, 26(2), 147–158. Roe, J., Rogers, S., Donaldson, M., Gordon, C., & Meager, N. (2014). Teaching Literacy Through Braille in Mainstream Settings Whilst Promoting Inclusion: Reflections on Our Practice. International Journal of Disability, Development and Education, 61(2), 165–177. Sacks, S. Z., Hannan, C. K., & Erin, J. N. (2011). Children’s Perceptions of Learning Braille: Qualitative and Quantitative Findings of the ABC Braille Study. Journal of Visual Impairment & Blindness, 105(5), 266–275. Schoen S. F., & Nolen, J. (2004). Action Research. Decreasing Acting-Out Behavior and Increasing Learning. Teaching Exceptional Children, 37(1), 26–29. Soukup, J. H., Wehmeyer, M. L., Bashinski, S. M., & Bovaird, J. A. (2007). Classroom Variables and Access to the General Curriculum for Students with Disabilities. Exceptional Children, 74(1), 101–120. Stephanidis, C., Salvendy, G., Akoumianakis, D., Bevan, N., Brewer, J., Emiliani, P. L., et al. (1998). Toward an Information Society for All: An International Research and Development Agenda. International Journal of Human-Computer Interaction, 10(2), 107–134. Strogilos, V., Tragoulia, E., Avramidis, E., Voulagka, A., & Papanikolaou, V. (2017). Understanding the Development of Differentiated Instruction for Students with and Without Disabilities in Co-taught Classrooms. Disability & Society, 32(8), 1216–1238. Subban, P. K., & Round, P. N. (2015). Differentiated Instruction at Work. Reinforcing the Art of Classroom Observation Through the Creation of a Checklist for Beginning and Pre-service Teachers. Australian Journal of Teacher Education, 40(5), 117–131. Terwel, J. (2005). Curriculum Differentiation: Multiple Perspectives and Developments in Education. Journal of Curriculum Studies, 37(6), 653–670. Thompson, V. (2004). Disability and Empowerment. In F. Armstrong & M. Moore (Eds.), Action Research for Inclusive Education: Changing Places, Changing Practice, Changing Minds (pp. 17–31). London: Routledge Falmer.

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Thomsen, J. P. (2012). Exploring the Heterogeneity of Class in Higher Education: Social and Cultural Differentiation in Danish University Programmes. British Journal of Sociology of Education, 33(4), 565–585. Tokar, S. (2004). Universal Design in North American Museums with Hands-on Science Exhibits: A Survey. Visitor Studies Today, 7(3), 6–10. Van Garderen, D., & Whittaker, C. (2006). Planning Differentiated, Multicultural Instruction for Secondary Inclusive Classrooms. Teaching Exceptional Children, 38(3), 12–20. Vojtech, R. (2016). Digital Barriers in Educating Students with Visual Impairment. Procedia-Social and Behavioral Sciences, 217, 935–940. Voltz, D. L., Sims, M. J., Nelson, B., & Bivens, C. (2005). A Framework for Inclusion in the Context of Standards-Based Reform. Teaching Exceptional Children, 37(5), 14–19. Walther-Thomas, C., Korinek, L., McLaughlin, V., & Williams, B. (2000). Collaboration for Inclusive Education. Boston: Allyn & Bacon. Wedell, K. (2005). Dilemmas in the Quest for Inclusion. British Journal of Educational Studies, 50(4), 3–11. Wexler, A. J. (2009). Art and Disability. New York: Palgrave Macmillan. Whitburn, B. (2014). The “Inclusion” of Students with Vision Impairments: Generational Perspectives in Australia. International Journal of Whole Schooling, 10(1), 1–18.

Part I Inclusion and Disability: Social Realms and Conceptual Underpinnings Across the World

2 The Differently Abled: Exploring the Rights and Legislation in India Shruti Bedi

There is a class of people who live on the sidelines, almost as the invisibles. Not only are they the physically disabled but rather the ­ socially and economically disabled. The society is yet to learn the virtues of tact and courtesy while dealing with them. By not accepting them as a part of the mainstream, we hurt and violate their human rights at every step. These are the disabled or rather the differently abled who have been suffering not only because of their physical conditions but also due to the emotional harassment that they are subjected to. Usually, people with disabilities do not constitute an ordinary part of the regular society due to numerous preconceived notions existing among the people. They are marginalized in areas like education, employment, etc. resulting in a further inability to fend for themselves. In India and most of South Asia, the disability is viewed as an outcome of cultural and structural impediments. The beliefs existing among the people and the stereotypes act as barriers along with the additional inhibitions resulting from factors such as poverty, lack of development, caste, gender, unemployment, and other features (Mehrotra 2011: 66). S. Bedi (*)  University Institute of Legal Studies, Panjab University, Chandigarh, India © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_2

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The Constitutional Status The Preamble to the Constitution of India is based on the ­principles of securing to its citizens justice, liberty, equality, and fraternity. These values embody the philosophy of constitutional permanence. The Preamble which is reflective of the values enshrined in the Indian Constitution speaks of securing liberty of thought, expression, belief, faith, and worship. The concept of fraternity is to be promoted with a view to assure the dignity of the individual.1 Conclusively, the individual is the focus of the Constitution, and these ideals are illustrative of the intention of securing a dignified existence to the individual. The ultimate aim and objective of these provisions are to secure a just social order wherein the fundamental values are regarded as vital to the quest for happiness. India as a democracy symbolizes a way of life which is based on Rule of Law.2 The objectives of the state can only be realized through the people whose rights and liberty must be protected. These rights in turn rest on the edifice of the dignity of the person. Working toward these aims it becomes imperative that the differently abled persons or persons with disability are treated with respect and dignity and made a part of the mainstream. The social barriers which act as impediments prevent them from leading a life to the best of their ability. In such situations, while upholding the constitutional ideals, the state needs to take proactive steps to reform the condition of the persons with disability and bring about a change in the mindset of the society.

Dignity of the Individual Dignity is a constitutional value enshrined in the Preamble. The constitutional values and ethics perceive a humane and compassionate society.

1The Preamble to the Constitution of India expressly lays down the objectives which reflect the philosophy of the Constitution. 2The Preamble to the Constitution of India as interpreted in the famous case of Kesavananda Bharati v. State of Kerala (1973) 4 SCC 225.

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The entire structure of the Constitution rests on the focal point of the dignity of the individual. Justice Dr. D.Y. Chandrachud in the recent decision in the Right to Privacy case3 (K.S. Puttaswamy v. Union of India 2017: 403) stated in his judgment: The individual is the focal point of the Constitution because it is in the realisation of individual rights that the collective well-being of the community is determined. Human dignity is an integral part of the Constitution. Reflections of dignity are found in the guarantee against arbitrariness (Article 14), the lamps of freedom (Article 19) and in the right to life and personal liberty (Article 21).

It therefore becomes relevant to interpret the right to life under Article 21 expansively. Right to life must be invested with the significance of the dignity of the individual and the human worth. Life is not mere animal existence. It is something much more than that. Therefore, any act which violates human dignity constitutes a violation of the right to live. Human dignity as construed in (M. Nagaraj v. Union of India 2006: 243) by a Constitution Bench of the Supreme Court was fundamental to and inseparable from human existence. It was held that dignity cannot be conferred or taken away, as it is inalienable: 26. … The rights, liberties and freedoms of the individual are not only to be protected against the State, they should be facilitated by it. … It is the duty of the State not only to protect the human dignity but to facilitate it by taking positive steps in that direction. No exact definition of human dignity exists. It refers to the intrinsic value of every human being, which is to be respected. It cannot be taken away. It cannot give (sic be given). It simply is. Every human being has dignity by virtue of his existence. …

3A

constitution bench of 9 judges gave a historical judgment in the K.S. Puttaswamy v. Union of India (2017) 10 SCC 1. They interpreted the hitherto unrecognized right to privacy as a fundamental right of the people of India under Article 21 of the Constitution. Article 21 which guarantees the most fundamental of all rights is the right to life and personal liberty. Right to privacy is now recognized as a fundamental right under Article 21.

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If the human dignity of the person is infringed, it results in the impairment of his physical and mental welfare. A society which perceives the differently abled as outcasts and as persons, who are incomplete, causes torture and humiliation to them. Resultantly, it violates his/her right to dignity as a human being. Human dignity is not only a constitutional value but also a constitutional goal (Jeeja Ghosh v. Union of India 2016). Aharon (Barak 2015), the former Chief Justice of the Supreme Court of Israel has beautifully enumerated the concept of dignity: The constitutional value of human dignity has a central normative role. Human dignity as a constitutional value is the factor that unites the human rights into one whole. It ensures the normative unity of human rights. This normative unity is expressed in the three ways: first, the value of human dignity serves as a normative basis for constitutional rights set out in the constitution; second, it serves as an interpretative principle for determining the scope of constitutional rights, including the right to human dignity; third, the value of human dignity has an important role in determining the proportionality of a statute limiting a constitutional right.

The ability of an individual defined by his/her physical limitations to live in freedom enables a realization of the meaning of life and liberty. A person, who may be suffering from certain limitations, is still an individual and his/her individualism cannot be characterized as a stigma. The society openly and in some ways, insidiously discriminates against persons suffering from certain disabilities, thereby instilling fear and apprehension in them, disabling them further. This systemic conservative approach impinges on the free growth of personality and cripples the expression of the inborn freedom, resulting in violation of their rights under Article 19(1)(a) of the Constitution.4 Such individuals need extra protection to enable them to realize their potential and to live freely.

4Article 19(1)(a), Indian Constitution guarantees the fundamental right to freedom of speech and expression to all the citizens. This freedom is available to all persons regardless of their abilities, status, and other disabling factors.

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The Constitution provides the basic framework for the realization of the right to live with dignity and liberty for all individuals. The law further needs to be developed, so as to sensitize the people in the society toward their plight and eliminate the prevalence of victimization.5 Estrangement and alienation faced by the persons with disability at the hands of the society is a direct violation of the right to personal liberty and dignity as protected by the Constitution. One of the areas where the discrimination primarily exists against the differently abled is employment. The disabled are not able to find jobs, not because of their disability but because of the social and practical barriers that exist, impairing their right to work. Consequently, persons with disability live in poverty and dearth of amenities (Union of India v. National Federation of the Blind 2013). Both the central and the state governments have been placed under a constitutional obligation fortified by the international treaties concerning human rights in general and for persons with disability, specifically, to protect the rights and civil liberties of such persons. However, it seems that the disabled people have failed to get required benefit until today (National Federation of the Blind 2013: 799).

Equality and Equal Protection of the Law Human dignity and equality are two concepts which are deeply imbedded in the philosophy of the Indian Constitution. Articles 14, 15, and 16 provide for equality and non-discrimination. In an effort to do away with social disparities and differences, the Constitution provides for affirmative action. The objective is to remove the social and economic inequalities. The courts in India have repeatedly interpreted the right to equality to include aspects of protective discrimination. 5See

the recent judgment of the Supreme Court upholding the rights of the LGBT community and striking down Section 377, IPC in Navtej Singh Johar v. Union of India Writ Petition (criminal) No. 76 of 2016, delivered on September 6, 2018. The transgenders among such others with different sexual orientation have been held to be a part of the society, and their rights and feelings cannot be ignored as it would result in the denial of their right to dignity and personal liberty under the Indian Constitution.

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On account of social and economic handicaps, a class of people does not get to avail the equality of opportunity as provided in the Constitution. Therefore, the courts have interpreted the necessity of affirmative action under the right to equality which empowers the state to apply positive discrimination as a form of doctrine of reasonable classification till the time unequals remain unequal (Ashok Kumar Thakur v. Union of India 2008).6 In this manner, the weaker sections of our society are given an opportunity to be treated equally with the rest of the people and are in the process uplifted from their backwardness.7 The Supreme Court in the case of (Ashok Kumar Gupta v. State of U.P. 1997: 228) has stated: 29. Existence of equality of opportunity depends not merely on the absence of disabilities but on presence of abilities. It is not simply a matter of legal equality. De jure equality must ultimately find its raison d’être in de facto equality…. It is necessary to take into account de facto inequalities which exist in the society and to take affirmative action by way of giving preference and reservation to the socially and economically disadvantaged persons…. Such affirmative action though apparently discriminatory is calculated to produce equality on a broader basis by eliminating de facto inequalities and placing the weaker sections of the community on a footing of equality with the stronger and more powerful sections so that each member of the community, whatsoever is his birth, occupation or social position may enjoy equal opportunity of using to the full his natural endowments of physique, of character and of intelligence.

Therefore, there is a necessary obligation on the state to not only make laws to remove inequality but also to undertake affirmative action to eliminate inequality based on social, economic status, gender, caste,

6Ashok

Kumar Thakur v. Union of India (2008) 6 SCC 1., para 49. As stated in the case in para 6.5, the objective of Article 15(5) is positive discrimination which is based on the valid classification to meet the objective of social justice, i.e., to provide opportunities to the weaker sections of the society. 7The Constitution of India under the concept of equality provides for equal status, social and economic justice, and the dignity of the person. These objectives are mentioned in the Preamble to the Constitution.

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disability, etc. The public authorities are thereby under an obligation under the Constitution to ensure the treatment of all persons equally at every level. Discrimination between people can accrue on account of failure to take positive steps (M. Nagraj v. Union of India 2006). This is a recognition of the development of the widely accepted human rights jurisprudence. Absence of required and necessary action to improve the condition of persons with disability would result in further inequality and discrimination. Social equality can only be realized through opportunities given to the disadvantaged and the disabled to live with dignity and equality of status. To strive for excellence is one of our fundamental duties. This is only possible when people are empowered in different ways to improve themselves. Article 51 A(e) enjoins the citizens of India to promote harmony and the spirit of common brotherhood, among all the people of India and consequently overcoming religious, linguistic, and regional, or sectional diversities.8 Failure to follow such constitutional mandates would deny persons with disability the equal benefit of law. Under Articles 15 and 16 of the Constitution, discrimination among people is specifically prohibited on the grounds of religion, race, caste, sex, place of birth, etc. Even though disability is not specifically mentioned as a prohibited ground of discrimination under Articles 15 and 16, nevertheless, the reason behind interpreting it similarly is the same as the other grounds. The objective of prohibiting discrimination on the specified grounds is the removal of social and economic inequalities, thereby, bringing the disadvantaged people up to the same level as the rest of the society. Hence, the same perception can be applied to persons with disabilities. In a matter before the Supreme Court, a pregnant, mentally retarded woman expressed her wish to continue with her pregnancy, whereas the

8Article

51-A(e), Constitution of India is one of the eleven fundamental duties of the Indian citizens. Although these duties have not been made mandatory by the Constitution, it is imperative to observe these in letter and spirit as these duties reflect the culture and identity of the nation. Non-observance of some of the duties has been made punishable under laws enacted by the Parliament for the purpose. Also see State of U.P. v. Dina Nath Shukla (Dr) (1997) 9 SCC 662 at page 666.

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Chandigarh administration wanted her to terminate it in her interests. The Supreme Court agreed to her demand and allowed her to continue her pregnancy and held that even for a mentally retarded person, the personal wishes must be respected like the others. She had the personal liberty to decide whether or not to give birth to a child (Suchita Srivastava v. Chandigarh Admn. 2009: 15). On the issue of personal liberty as interpreted under Article 21, the court held: There is no doubt that a woman’s right to make reproductive choices is also a dimension of ‘personal liberty’ as understood under Article 21 of the Constitution of India. It is important to recognise that reproductive choices can be exercised to procreate as well as to abstain from procreating.

Mental retardation is one of the disabilities mentioned under the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Protection) Act, 1995 and the new legislation, Rights of Persons with Disabilities Act, 2016. The courts in this manner have tried to give the same status of equality to persons with disability and have equated them with the others. This is how the concept of “formal equality” will be raised to the level of “real equality.” Persons with disabilities cannot be denied their rights and the most important one is the right to human dignity. An important judgment by the Supreme Court was the one in (Suresh Kumar Koushal v. Naz Foundation 2014) which stated the objective of social transformation under the Constitution by giving a new vision to Article 14 that “the State shall not deny to any person equality before the law or the equal protection of law.” In this matter, the judiciary moved a step further from the traditional equality jurisprudence to an alternative jurisprudence founded in ideas of inclusion, dignity, independence, and curing structural shortcomings (Bhatia 2017). The principles of equality and equal protection are imperative in the realization of the full potential and well-being of an individual, whether or not he suffers from some disability. It, therefore, follows that equality means equal access to all facilities and amenities for everyone.

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Further, the 73rd and 74th Amendment of the Indian Constitution makes it a constitutional obligation to make provisions for safeguarding the interest of the weaker section of the society, including “handicapped and mentally retarded.” Article 41 of the Constitution which is a directive principle, imposes a duty on the state to make an effective provision, inter alia, for public assistance to disabled persons. This is imperative for securing a social order and the advancement of the welfare of the people. The importance of Article 41 in the constitutional scheme has been highlighted by this Court’s judgment in  (Jacob M. Puthuparambil v. Kerala Water Authority 1991) wherein it was held that the courts should interpret an Act so as to advance Article 41.

The Indian Disability Law The disability law is based on the premise that the dimensions of ­persons with disabilities are impeded on account of the barriers and impediments created by our society. A person may be extremely capable in one field and incapable in another. Some may possess lesser abilities as compared with others. However, they all need a level playing field to understand and realize the threshold of their capabilities. This objective can be achieved when the society is sensitized toward their special needs and also when persons with disability are treated at par with the others. To ensure this, they must be provided facilities to educate themselves in full measure. Since the ultimate aim remains to equip them with adequate means to earn a living, the state must guarantee the right to access to education and employment opportunities. Since its enactment in 1995, the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Protection) (PWD) Act began to lead the debate on the disability law in India. It was indeed a momentous occasion as this legislation was the first footstep toward realizing and establishing that people with disabilities are equal citizens who are entitled to a normal life. This law recognized an important fact that persons with disability can be made a part of the usual social, economic, and political life. The PWD Act has made life easier for myriad of differently abled people in India and has made a

28     S. Bedi

comprehensive statement with respect to removing the stigma of disability from their lives (Bagenstos 2004).9 The year 1981 had been declared as the International Year of Disabled Persons. India had adopted a Constitution which provided a mandate of equal treatment of all persons. With this objective in mind, a working group was set up and it presented the draft of the Disabled Persons (Security and Rehabilitation) Bill, 1981 (Dawn 2011). One of the issues confronting the enactment of a legislation on this issue by the Parliament was that relief and rehabilitation of persons with disability is a state subject. Therefore, the Parliament did not possess the power to enact a law on this.10 However, soon thereafter India signed the Proclamation of Equality and Full Participation of People with Disabilities in the Asian and Pacific Region in 1992. India’s participation in this proclamation made it possible for the Parliament to enact a law in favor of persons with disability.11 Consequently, India enacted the Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act 1995,12 which was passed unanimously in both houses of the Parliament on December 22, 1995. It received the assent of the President of India on January 1, 1996. Though the Act had a laudable objective and it did succeed in somewhat bringing about a change in the mindset of the people as to how they viewed the differently abled, it failed to raise awareness among all sections of the society. This is one area where it faltered. The Act relied upon the governmental authorities to look after the life and dignity of 9Bagenstos, S. R. (2004). The Future of Disability Law. The Yale Law Journal, 114(1), 1–83. Similar arguments have been advanced in this article regarding the Americans with Disability Act (ADA), 1990. 10As per Article 246 and the Seventh Schedule of the Indian Constitution, the Parliament has the power to make laws on matter mentioned in the Union List and the Concurrent List. The State Legislatures make laws on matters in the State List and Concurrent List. Since rehabilitation of the disabled is a matter in the State List, The Parliament cannot make a law on the same. 11As per Article 253, Constitution of India, the Parliament has the power to enact laws on matters in the State List to give effect to international agreements. The PWD Act, 1995 was enacted as a consequence of the signing of the Proclamation which was an international treaty. 12Act 1 of 1996. The Act is available online at: http://www.ccdisabilities.nic.in/page. php?s=&t=pb&p=pwd_act (downloaded on 6.9.18).

2  The Differently Abled: Exploring the Rights …     29

persons with disability. However, the authorities failed to sensitize the public which included the family and society about the desired respect for the esteem of these people. A three-judge bench of the Supreme Court in the context of the implementation of the 1995 disability law, stated that the valuable provisions of the Act cannot be allowed to continue only on paper for years, thereby defeating the very purpose of such law and legislative policy. The governments are under a commitment to effectively implement it. They stressed on the proactive role supplemented by a liberal and relief-oriented approach, instead of being obstructive or lethargic. This kind of assistance could change the life of the differently abled and provide them the means to earn a decent standard of living (Justice Sunanda Bhandare Foundation v. Union of India 2014). India being a welfare state is under a mandate to look after the well-being of the differently abled. In furtherance of this aim and in exercise of the powers conferred by sub-section (2) of Section 1 of the Rights of Persons with Disabilities Act, 2016 (49 of 2016), the Act came into force with effect from 19.4.2017.13 The PWD Act, 1995 now stands repealed and is replaced by the Rights of Persons with Disabilities Act, 2016 (hereinafter referred to as the “Disabilities Act, 2016”). This Act, unhesitatingly, stresses upon an important feature, i.e., the creation of a barrier-free built environment. The Preamble to the Disabilities Act declares that the Act was enacted by the legislature to fulfill its international obligation to enact a national disability law. The statement of objects and reasons lays down the objectives: (i ) To spell out the responsibility of the State towards the prevention of disabilities (ii ) To create a barrier-free environment for persons with disabilities.

The earlier approach to disability was to treat it as a health and welfare issues. Persons with disability were thought of as abnormal beings

13As

per the Gazette Notification issued by the Ministry of Social Justice and Empowerment dated 19.4.2017.

30     S. Bedi

who deserved sympathy. They were not viewed as individuals who were entitled to equal rights and opportunities in every sphere of life. This charitable outlook resulted in the marginalization of persons with disability and their exclusion from the mainstream. It further impaired their rights and freedoms. These factors lead to severe isolation of the persons with disability and their families. However, there has occurred a marked shift in the thinking and the present focus of the disability law is to treat them as equals deserving of equal opportunities and rights. They are now provided adequate facilities which help them in realizing their full potential. This in turn will lead to the augmentation of resources and the consequential progress of the nation.14 This research work on the disability law in India focuses on three important issues with respect to the differently abled. First and foremost, the disabled must be educated. Secondly, this can be achieved only if there is proper accessibility to the structures where the educational institutions are situated. Thirdly, education would be meaningless if there are no job opportunities for the disabled. Since the scope of this work is limited, it is not possible to deal with all aspects of the rights of the disabled envisaged under the disability law.

Right to Education It is a well-recognized fact that everyone can learn and that everyone is educable. Accordingly, in India, there is a constitutional mandate of the fundamental right to education under Article 21A. Moreover, equality as stated under the Constitution demands a recognition of and a response to the diversity present in our society (Kothari 2012: 75). Consequently, even the differently abled persons, whatever be the disability they suffer from, have a right to be educated. The education required is of the level which will equip them to earn a living. Denial of such educational facilities would amount to discrimination. Educating

14This

shift in thinking was addressed by Justice Dr. A.K. Sikri in Rajive Raturi v. Union of India (2018) 2 SCC 413.

2  The Differently Abled: Exploring the Rights …     31

persons with disability would prepare them to be self-sufficient and ­economically productive and independent. This rights-based approach as discussed in the (Rajive Raturi v. Union of India 2018) judgment envisages the participation of every citizen, including the disadvantaged, in the development of the country. These measures will lead to the strengthening of the rights of the differently abled and encourage their participation. Deliberating upon this approach, Justice Dr. A.K. Sikri held (Disabled Rights Group v. Union of India 2018: 403): A disability is only actually a disability when it prevents someone from doing what they want or need to do. A lawyer can be just as effective in a wheelchair, as long as she has access to the courtroom and the legal library, as well as to whatever other places and material or equipment that are necessary for her to do her job well. A person who cannot hear can be a master carpenter or the head of a chemistry lab, if he can communicate with clients and assistants. A person with mental illness can nonetheless be a brilliant scholar or theorist [We have celebrated examples of John Nash, a noted mathematician who earned laurels by getting noble prize and Stephen Hawkins].

A disability can be turned into an ability with the correct approach and with access to educational facilities for the disabled. To promote the objective of equality in education and social justice, the Rights of Children to Free and Compulsory Education Act or the Right to Education Act (RTE), 2009 was enacted.15 Unfortunately, the differently abled children have not yet been made a part of this reserved group under the RTE Act. However, the present disability law, i.e., the Disabilities Act, 2016 provides for exhaustive provisions for educational facilities to the disabled. Section 31 confers right to free education upon children with benchmark disabilities who are between the age of 6 and 18 years.

15The

Right to Education Act, 2009 puts a mandate on all schools including the private schools to reserve 25% seats for the children from the economically weaker section of the society. The objective it to reduce the inequality and follow a policy of inclusiveness.

32     S. Bedi

This provision is irrespective of anything contained in the Right to Education Act, 2009. Further, Section 32 makes provisions for reservation in higher educational institutions as under: 32. Reservation in higher educational institutions- (1) All government institutions of higher education and other higher education institutions receiving aid from the government shall reserve not less than five per cent seats for persons with benchmark disabilities. (2) The persons with benchmark disabilities shall be given an upper age relaxation of five years for admission in institutions of higher education.

As per the provision, the educational institutions included under the Act are the government institutions as well as private educational institutions receiving aid from the government. Moreover, the extent of reservation stands increased from 3% under the PWD Act, 1995 to 5% under the Disabilities Act, 2016. Another important improvement under the Disabilities Act, 2016 over the earlier Act is that these provisions are made for “persons with benchmark disabilities.”16 Equality in the dispensation of education cannot be achieved till the time the educational institution is not equipped to provide facilities for the students with disability. Children with disability face difficulties in schools, etc., on account of architectural barriers, transportation, and recreation facilities. The Disabilities Act, 2016 provides for making the educational institutions, disabled friendly by removing such barriers. Section 16 of the Act mandates that all educational institutions will provide for inclusive education for children with disability. The concept of inclusive education is necessary to promote equality and overcome the existing segregation among the students belonging to the disadvantaged groups. Segregated educational environments are not appropriate for students with disability, nor in their best interest (Kothari 2012: 76).

16Section 2(r ) “person with benchmark disability” means “a person with not less than forty per cent of a specified disability where specified disability has not been defined in measurable terms and includes a person with disability where specified disability has been defined in measurable terms, as certified by the certifying authority.”

2  The Differently Abled: Exploring the Rights …     33

A judgment of far-reaching implications was given by the Bombay High Court in VincyD’Silva v. St. Mary’s School (2006). St. Mary’s School had detained a student suffering from dyslexia in his class without notice. In a public interest litigation filed by the parents, the High Court not only gave recognition to learning disabilities as a disability under the PWD Act, 1995 but also directed the government of Maharashtra to formulate a scheme to provide addition facilities to the students with learning disabilities of dyslexia, dysgraphia, and dyscalculia such as the modified system of curriculum and examination. The Disabilities Act, 2016 mandates the access to education to all children with disabilities till the age of 18 years. Despite the fact that the disability law provides for proactive measures with respect to persons with disability and their right to education, the Supreme Court has observed that the implementation is lacking. They have accordingly directed the strict observance of the provisions of Section 32 of the Disabilities Act, 2016, with a warning that non-compliance by the defaulters would be dealt with appropriate consequential action (Disabled Rights Group v. Union of India 2018: 400). The children with disabilities are a part of our society, and we must ensure that they are not forgotten.

Accessibility Without adequate facilities for accessibility to different places and transport for persons with disability, the movement gets impaired which is a direct violation of their right to free movement under Article 19(1)(c) of the Constitution. It is the responsibility of the government to ensure the right of movement to the disabled. Therefore, the public authorities must lay down proper rules and regulations with respect to buildings, public amenities like roads, bathrooms, public transport, etc. This vulnerable section of the society needs more care and protection, and state needs to guarantee the services (Rajive Raturi v. Union of India 2018: 425).

34     S. Bedi

On the issue of accessibility for persons with disability, the fundamental right to life under Article 21 is relevant. The Supreme Court in State of H.P. v. Umed Ram Sharma (1986) has held that right to life under Article 21 is wide enough to include within its ambit the right to accessibility. It was stated that every person has the right under Article 19(1)(d) to move freely throughout the territory of India. This case dealt with right to access to roads for residents of hilly areas. Accordingly, the court declared that Article 21 includes not only the physical existence of life but also a certain quality of life. Without adequate access to roads, the residents of hilly areas were being denied access to life itself. It concluded, “denial of that right would be denial of the life as understood in its richness and fullness by the ambit of the Constitution” (State of H.P. v. Umed Ram Sharma 1986: 71). Further, as stated earlier, right to dignity which has its roots in Article 21 applies with more fervor in cases of the differently abled persons. Therefore, it becomes imperative for the authorities to provide an environment to such persons wherein they are able to live their lives in a meaningful manner and also contribute to the progress of the nation (Jeeja Ghosh v. Union of India 2016: 791). Persons with disability should not be viewed as a liability but as an asset. The government has been made responsible under the Disabilities Act, 2016 to provide a non-handicapping environment of accessibility for the persons with disability. This is to provide them with equal opportunities and full participation in all aspects of life, including social, economic, political, and cultural, at par with other ­ citizens. The Central government has been authorized to formulate rules in consultation with the Chief Commissioner for laying down standards of accessibility for the infrastructure, conveyance, information, and communications, including appropriate technologies, etc., in urban and rural areas under Section 40 of the Disabilities Act, 2016. The government under Section 41 of the Act is required to take suitable measures to provide facilities for persons with disabilities at bus stops, railway stations, and airports conforming to the accessibility

2  The Differently Abled: Exploring the Rights …     35

standards.17 Under Section 42, the government is further required to provide access to information and communication technology.18 The disability law as seen works on the objective of creating a barrier-free environment and deals squarely with the issue of non­ discrimination in transport and built environment. The Disability Act, 2016 is an improvement on the PWD Act, 1995. The 1995 Act provided that the duty of the state to provide these facilities is subject to adequate economic resources to bear the expenditure involved in making these facilities disabled friendly. However, the Disabilities Act, 2016 is devoid of any such condition. On the contrary, Section 45 of the Act provides for a time limit of five years for making existing infrastructure and premises accessible from the date of notification of the rules and this provision is not subject to any requirement of economic resources. The Supreme Court in the Rajive Raturi judgment while deciding a public interest litigation filed on behalf of the visually impaired for their rights and proper, adequate and safe access to public places, etc., directed that 50% of the government buildings in the national capital and the state capitals should be made fully accessible by December 2018 (Rajive Raturi v. Union of India 2018: 469).

17Section 41.

(1) The appropriate government shall take suitable measures to provide—(a) facilities for persons with disabilities at bus stops, railway stations, and airports conforming to the accessibility standards relating to parking spaces, toilets, ticketing counters, and ticketing machines; (b) access to all modes of transport that conform the design standards, including retrofitting old modes of transport, wherever technically feasible and safe for persons with disabilities, economically viable and without entailing major structural changes in design; and (c) accessible roads to address mobility necessary for persons with disabilities. (2) The appropriate government shall develop schemes programmes to promote the personal mobility of persons with disabilities at affordable cost to provide for—(a) incentives and concessions; (b) retrofitting of vehicles; and (c) personal mobility assistance. 18Section 42. The appropriate government shall take measures to ensure that—(i) all contents available in audio, print, and electronic media are in accessible format; (ii) persons with disabilities have access to electronic media by providing audio description, sign language interpretation and close captioning; and (iii) electronic goods and equipment which are meant for everyday use are available in universal design.

36     S. Bedi

Employment and Empowerment Employment, undoubtedly, is a key factor in empowering the persons with disability. Unfortunately, it has been observed that persons with disability do not have jobs not because of their disability, but due to the social barriers they encounter, which prevents them from working. Resultantly, the persons with disability live in poverty and indigence and are unable to provide not only for their families but also for themselves (Union of India v. National Federation of the Blind 2013: 799). The Union of India, the State governments, as well as the union territories have a defined obligation under the Constitution of India and the disability law to provide for adequate employment opportunities for persons with disability (Justice Sunanda Bhandare Foundation v. Union of India 2014). The Disabilities Act, 2016 provides for provisions of affirmative action and non-discrimination in matters of employment. It imposes several obligations on the state for ensuring equal opportunities in employment for the differently abled. These provisions will help empower the persons with disability, economically and place them on an equal footing. Section 33 of the Disability Act, 2016 imposes an obligation on the relevant government to identify posts in different establishments that can be held persons with benchmark disabilities.19 An expert committee is required to be constituted for the identification and for a periodic review of such posts. However, we have seen that adequate reservation is not provided to the differently abled despite the clear mandate of the 2016 law as well as the earlier PWD ACT, 1995. The problem in such

19Section 33.

Identification of posts for reservation—The appropriate government shall— (i) identify posts in the establishments which can be held by respective category of persons with benchmark disabilities in respect of the vacancies reserved in accordance with the provisions of Section 34; (ii) constitute an expert committee with representation of persons with benchmark disabilities for identification of such posts; and (iii) undertake periodic review of the identified posts at an interval not exceeding three years.

2  The Differently Abled: Exploring the Rights …     37

cases is that the posts in the relevant jobs are not identified. Moreover, this list is often restrictive and arbitrary. This is so as it is left to the discretion of the government to identify the posts and the identification occurs on the basis of certain stereotypical notions (NCPED). Further, in most cases, the identification of the posts for persons with disability is done by committees in which there is no representation of persons with disability themselves (Sinha 2005). Even under the PWD Act, 1995, in a similar provision (Section 32), the identification of posts did not take place in a just manner. In a case (LIC of India v. Chief Commr. for Disabilities 2002), the Life Insurance Corporation was of the view that a person with 45% disability was incapable of performing the duties of a peon. However, the Delhi High Court rejected the decision of the chief commissioner in an appeal and ordered the LIC to employ the petitioner. Section 34 provides for reservation of 4% of the total vacancies in each group of posts, to be filled up by persons with benchmark disabilities. Out of these, 1% will be reserved for people suffering from disabilities of blindness and low vision; deaf and hard of hearing; locomotor disability including cerebral palsy, leprosy cured, dwarfism, acid attack victims, and muscular dystrophy. Another 1% is reserved for people with autism, intellectual disability, specific learning disability, and mental illness; and multiple disabilities.20 The provision further clarifies that 20Section 34. Reservation-(1) Every appropriate government shall appoint in every government establishment, not less than four per cent of the total number of vacancies in the cadre strength in each group of posts meant to be filled with persons with benchmark disabilities of which, one per cent each shall be reserved for persons with benchmark disabilities under clauses (a ), (b ) and (c ) and one per cent for persons with benchmark disabilities under clauses (d ) and (e ), namely:(a ) blindness and low vision; (b ) deaf and hard of hearing; (c ) locomotor disability including cerebral palsy, leprosy cured, dwarfism, acid attack victims and muscular dystrophy; (d ) autism, intellectual disability, specific learning disability and mental illness; (e ) multiple disabilities from amongst persons under clauses (a ) to (d ) including deaf-blindness in the posts identified for each disability: Provided that the reservation in promotion shall be in accordance with such instructions as are issued by the appropriate government from time to time: Provided further that the appropriate government, in consultation with the Chief Commissioner or the State Commissioner, as the case may be, may, having regard to the type of work carried out in any government establishment, by notification and subject to such conditions, if any, as may be specified in such notifications exempt any government establishment from the provisions of this section.

38     S. Bedi

in the eventuality of the reserved posts not being filled in that year, they must be carried forward to the next year. In the government sector, it has been made mandatory to reserve posts for persons with disability so as to open more avenues for them and changing the existing mindset about the employability of such people. Once the persons with disability have been educated, it becomes imperative to engage them in lucrative professions, so as to be able to provide them an opportunity to help them lead a regular life wherein they can earn to support themselves and their families. This further increases their acceptability in the society and provides them with a level playing field. Section 35 provides for incentives to employers in private sector to ensure that about five percent of the workforce is composed of persons with benchmark disability.21 Therefore, the reservation policy for the differently abled is not just limited to the posts in the public sector but the private sector is also being engaged. By offering incentives instead of making it mandatory for the private sector, the law tries to involve all participants by following a policy of spreading awareness. This is a commendable measure which not only provides opportunities for persons with disability but also helps to increase the responsiveness among the masses as to the condition and plight of the persons with disability. ***

 (2) Where in any recruitment year any vacancy cannot be filled up due to non-availability of a suitable person with benchmark disability or for any other sufficient reasons, such vacancy shall be carried forward in the succeeding recruitment year and if in the succeeding recruitment year also suitable person with benchmark disability is not available, it may first be filled by interchange among the five categories and only when there is no person with disability available for the post in that year, the employer shall fill up the vacancy by appointment of a person, other than a person with disability: Provided that if the nature of vacancies in an establishment is such that a given category of person cannot be employed, the vacancies may be interchanged among the five categories with the prior approval of the appropriate government. (3) The appropriate government may, by notification, provide for such relaxation of upper age limit for employment of persons with benchmark disability, as it thinks fit. 21Section 35. Incentives to employers in private sector—The appropriate government and the local authorities shall, within the limit of their economic capacity and development, provide incentives to employer in private sector to ensure that at least five percent of their work force is composed of persons with “benchmark disability.”

2  The Differently Abled: Exploring the Rights …     39

The Indian legal framework on the disability law comprising of the previous PWD Act, 1995, and the present Disabilities Act, 2016 lays down goals for ensuring disability rights. However, previous experience illustrates our inability to give effect to these provisions. This is due to the still existing misconceptions and notions about the inabilities of persons with disability and a charitable attitude as opposed to proactive action to improve their condition in society. Laws assist in bringing about a positive change in the outlook and the attitude of people in the society wherein the conservative and stereotypical perceptions can be altered into an optimistic attitude. To make the disability law a true instrument of social empowerment, it has to be implemented with the inclusiveness which is actually envisaged by the law. The Disabilities Act, 2016 does not restrict and categorize the number of disabilities, thereby giving recognition to all kinds of disabilities. This is an enormous improvement on the previous PWD Act, 1995. Such progressive developments need to be incorporated into all the existing laws so as to give meaningful effect to the objective of protecting the rights and interests of the differently abled. With such efforts, undoubtedly, persons with disability can be made an effective part of the mainstream in the society. A strong law providing for equality and non-discrimination for the persons with disability creates a permanent place for disabilities in the human rights framework.

References Ashok Kumar Gupta v. State of U.P. (1997). 5 SCC 201. Ashok Kumar Thakur v. Union of India. (2008). 6 SCC 1. Bagenstos, S. R. (2004). The Future of Disability Law. The Yale Law Journal, 114(1), 1–83. Barak, A. (2015). Human Dignity—The Constitutional Value and the Constitutional Right. Cambridge: Cambridge University Press. Bhatia, G. (2017). Equal Moral Membership: Naz Foundation and the Refashioning of Equality Under a Transformative Constitution. Indian Law Review, 1(2), 115–144.

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Davar, B. V. (2015). Legal Capacity and Civil Political Rights for People with Psychological Disabilities. In A. Hans (Ed.), Disability, Gender and the Trajectories of Power. New Delhi: Sage. Dawn, R. (2011). Psycho-Social Dynamics of Blind Students (p. 71). New Delhi: Concept Publishing Co. Disabled Rights Group v. Union of India. (2018). 2 SCC 397. Employment. National Centre for Promotion of Employment for Disabled People (NCPED). Available online at: http://www.ncpedp.org/Employment. Downloaded on 15 November 2018. Jacob M. Puthuparambil v. Kerala Water Authority. (1991). 1 SCC 28. Jeeja Ghosh v. Union of India. (2016). 7 SCC 761. Justice Sunanda Bhandare Foundation v. Union of India. (2014). 14 SCC 383, p. 387, para 9. Kesavananda Bharati v. State of Kerala. (1973). 4 SCC 225. Kothari, J. (2012). The Future of Disability Law in India. New Delhi: Oxford University Press. K.S. Puttaswamy v. Union of India. (2017). 10 SCC 1. LIC of India v. Chief Commr. for Disabilities. (2002). 101 DLT 434. Mehrotra, N. (2011). Disability Rights Movements in India: Politics and Practice. Economic and Political Weekly, 46(6), 65–72. M. Nagaraj v. Union of India. (2006). 8 SCC 212. Navtej Singh Johar v. Union of India Writ Petition (criminal) No. 76 of 2016, decided on 6th September 2018. Rajive Raturi v. Union of India. (2018). 2 SCC 413. Sinha, S. B. (2005). Disability Law vis-à-vis Human Rights. Supreme Court Cases Journal, 3, 1. State of H.P. v. Umed Ram Sharma. (1986). 2 SCC 68. State of U.P. v. Dina Nath Shukla (Dr). (1997). 9 SCC 662. Suchita Srivastava v. Chandigarh Admn. (2009). 9 SCC 1. Suresh Kumar Koushal v. Naz Foundation. (2014). 1 SCC 1. Union of India v. National Federation of the Blind. (2013). 10 SCC 772. Vincy D’Silva v. St. Mary’s School, W.P. No. 1744/2005, (Bombay HC). Order dated 20 July 2006.

3 Understanding Negative Attitudes Toward Disability to Foster Social Inclusion: An Australian Case Study Boon Siong Tan, Erin Wilson, Robert Campain, Kevin Murfitt and Nick Hagiliassis

Introduction Negative attitudes toward disability remain prevalent despite decades of inclusion policy and practice. In order to address negative attitudes within society, there is a need for a more sophisticated understanding of the types of negative attitudes that are experienced by people with disability, and the settings they are experienced in (Fisher and Purcal 2017; Murfitt et al. 2018). This chapter will draw on data from the Australian B. S. Tan · E. Wilson (*) · R. Campain · K. Murfitt  Deakin University, Burwood, VIC, Australia e-mail: [email protected] R. Campain e-mail: [email protected] K. Murfitt e-mail: [email protected] N. Hagiliassis  Scope, Hawthorn, VIC, Australia e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_3

41

42     B. S. Tan et al.

“1 in 4 Poll Attitudes Survey,” that surveyed adults with a disability throughout Australia about their experience of negative attitudes toward disability, in order to identify new directions for attitude change activity to enhance the social inclusion of people with disability.

Negative Attitudes Toward Disability Research in Western countries has shown that attitudes toward people with disability have been predominantly negative. Studies of attitudes in Canada (Oullette-Kuntz et al. 2010; Morin et al. 2013), Britain (Grewal et al. 2002; Staniland 2011; Aiden and McCarthy 2014), Republic of Ireland (National Disability Authority 2011), and USA (Goreczny et al. 2011) have all found that negative attitudes still persist within their communities. In Australia, this is equally true and has been a noted target of disability policy. Australia’s National Disability Strategy 2010–2020 (Commonwealth of Australia 2011), the Commonwealth Government’s overarching disability policy, was informed by a national consultation in 2009 involving 3250 individual participants and organisations (Deane 2009). The consultation found that, People with disabilities and their families, friends and carers reported daily instances of being segregated, excluded, marginalised and ignored. At best they reported being treated as different. At worst they reported experiencing exclusion and abuse, and being the subject of fear, ignorance and prejudice. People with disabilities believe little progress has been made in challenging prevailing attitudes towards disability. Submissions suggested that there are still widespread misconceptions and stereotypes informing the attitudes and behaviour of service providers, businesses, community groups, governments and individuals. (Deane 2009, p. 3)

A range of causes has been identified for these negative attitudes in Australia. These include lack of knowledge and understanding of people with disability (Deane 2009; Yazbeck et al. 2004), with some informants suggesting that this represents a “lack of skills and confidence

3  Understanding Negative Attitudes Toward Disability …     43

in interaction rather than ‘bad intent’” (Family and Community Development Committee 2014, p. 398). In addition, feelings of discomfort (Yazbeck et al. 2004) have been repeatedly identified by people without disability concerning people with disability, with respondents viewing people with disability as helpless, dependent, and tragic, among other negative perceptions (Daruwalla and Darcy 2005). In turn, these negative perceptions on the part of community members, particularly accompanied by feelings of confusion and uncertainty, can lead to avoidance of people with disability (Family and Community Development Committee 2014, p. 399). As Bigby notes in the Victorian Parliamentary Inquiry into Social Inclusion and Victorians with Disability: …people in the community generally have a lack of confidence about how to behave, a fear of non-standard behaviours and a fear of being engaged in a conversation or an interaction that they would not quite know how to handle because it was ‘not quite the norm’. (Bigby paraphrased in Family and Community Development Committee 2014, pp. 8–15)

Similarly, studies in the UK have identified prejudice, ignorance, lack of awareness, and fear of difference as the primary causes of negative attitudes in society (Grewal et al. 2002), along with feelings of discomfort and awkwardness when interacting with people with disability, though levels of discomfort varied in relation to different disabilities (Staniland 2011). Segregation of people with disability has also been routinely identified as a root cause of negative attitudes (Deane 2009).

Disability Type Whilst negative attitudes toward disability persist in many countries, research evidences varying degrees of negative attitudes across different disability types (Moore and Nettelbeck 2013). Echoing earlier commentators and ideas about a hierarchy of disability (Tringo 1970; Harasymiw and Horne 1976), evidence from a number of studies has

44     B. S. Tan et al.

found that people with an intellectual disability or mental illness are more negatively viewed compared to people with a physical disability (Scior 2011; Staniland 2011; Thompson et al. 2011; Tur-Kaspa et al. 2000; White and Clark 2010). Similar findings have also been identified within various professional cohorts and settings, such as within the workplace (National Disability Authority 2007; Ju et al. 2013), education settings (Nowicki and Sandieson 2002; Wiener et al. 1988) and among healthcare personnel (Taylor 1998; Klooster et al. 2009). Despite this evidence that attitudes are linked to disability type, the majority of research has investigated attitude differences between physical and intellectual disabilities (Tur-Kaspa et al. 2000; Staniland 2011).

Settings for the Experience of Negative Attitudes As identified above, some studies have contained their investigations to single settings or professions. Two studies in the UK have also investigated the experience of negative attitudes across a wide range of community contexts or settings. Scope UK (ComRes 2011) commissioned a survey of 505 respondents (including people with disability, parents, and carers) and found that people with disability experience negative attitudes differently across settings. Previously, a study conducted by Grewal et al. (2002) noted similar findings as people with disability had difficulties in accessing goods and services including support and care services, health care, as well as difficulties within education and employment settings. However, research on negative attitudes and different settings has been limited, despite the likely value of identifying settings in which negative attitudes prevail and targeting change strategies to these environments.

Australian Responses The need to address negative attitudes has been codified into policy in Australia in both national and state jurisdictions. The National Disability Strategy 2010–2020 “recognises that attitudes, practices

3  Understanding Negative Attitudes Toward Disability …     45

and structures are disabling and can prevent people from enjoying economic participation, social inclusion and equality” (Commonwealth of Australia 2011, p. 16) and identifies the need to “increase awareness and acceptance of the rights of people with disability” as a policy direction of the strategy (p. 37). Similarly, the Victorian State Disability Plan 2017–2020 (Victorian Government 2016)—as one example of a State jurisdiction—identifies attitude change as one of its five “Key Approaches” and priorities for action. However, neither offer detail as to how this is to occur. Australia has engaged in attitude change strategies in an ad hoc fashion encompassing broad media campaigns (at national and state levels), education and training targeting specific organizations, and community building activities that foster inclusion (Family and Community Development Committee 2014, p. 402). Arguably, the recent evolution of the National Disability Insurance Scheme (NDIS)1 offers significant potential for a more national and programmatic approach to attitude change. As described by the government commission that proposed its development, “influencing attitudes and practices in society may be one of the most significant roles of the NDIS, outside of its role of directly providing much needed supports” (Productivity Commission 2011, p. 208). More recently, the second of the three tiers of NDIS program architecture—the Information, Linkages, and Capacity Building (ILC) component—has focused part of its activity in the area of capacity building related to attitudes. As described in the ILC policy: ILC also includes capacity building across communities, organisations, and mainstream service delivery, to influence attitudes and practices in a way that can lead to greater inclusion and engagement of people with disability. (NDIA, n.d., p. 5)

1The

NDIS is an Australian national scheme that was launched across trial sites in 2013. The scheme seeks to assist people with disability through the provision of individualized funding, plans, and support. The stated aim is to provide individuals with more choice and control over their supports, with a shift in funding provision from service providers to individuals.

46     B. S. Tan et al.

As the ILC is in its infancy, it is not yet clear how or if it will foster attitude change, though it has commenced a granting program to fund a broad range of capacity building initiatives nationally.

Methods The research and policy development discussed above spans the last ­fifteen years but, despite the recurring issue, there has been little focus on building evidence regarding the prevalence of negative attitudes toward disability nationally within Australia. In 2013, the “1 in 4 Poll Attitudes Survey” was conducted across Australia by Deakin University in partnership with Scope. The project sought to survey adults with a range of disabilities in Australia about their experiences of negative attitudes toward disability2 through an accessible survey method.

Research Design The challenge in designing an accessible data collection approach was to overcome communication, physical, and cognitive barriers to participation in data collection via creating a method whereby respondents could understand the questions, answer according to their preferred method and access the data collection instrument with minimum inconvenience (Wilson et al. 2013). The “1 in 4 Poll” used three key strategies to overcome the barriers to self-report for people with disability: the option of using an accessible Internet-based survey or hard copy version; use of a “Standard English” and “Easy English” versions of the survey; and the option of independent self-completion, assisted-completion, or proxy report (Wilson et al. 2013).

2The poll followed a first poll, conducted in 2010/2011, that sought the experiences of adult Australians with disability in relation to social inclusion. One finding from this first poll was that negative attitudes were identified by respondents to be the main barrier to social inclusion. This led to the following survey focusing on negative attitudes to further explore them in greater detail.

3  Understanding Negative Attitudes Toward Disability …     47

Research Instrument and Scoring The survey instrument comprised 20 question items examining different aspects of negative attitudes. Negative attitude items represented a collation and adaptation of items from a review of a wide literature set. Twelve studies and instruments3 were utilized to identify and develop attitude themes which comprised 36 possible items overall (i.e., specific attitude descriptors were collated and thematized). The final 20 negative attitude items (see Table 3.2 in the Results section) were adapted or developed and selected by the research team as representative of the array of items across the identified literature and instruments. Respondents were asked whether they had experienced specific instances of negative attitudes over the last 12 months and, if so, they were asked to rate the degree of difficulty it caused them on an 11-point Likert Scale (0 = no difficulty, 10 = extreme difficulty). Additionally, the survey incorporated 14 items addressing various settings in which negative attitudes might be experienced (see Table 3.6 in the Results section). These settings drew on the Scope UK survey (ComRes 2011) along with researcher-generated items based on literature on social inclusion. Respondents were asked whether they had experienced negative attitudes within each specific setting over the last 12 months (“yes,” “no” or “not applicable”) and, if so, they were asked to rate the degree of difficulty it caused them on a 11-point Likert Scale (0 = no difficulty, 10 = extreme difficulty). Surveys were completed anonymously, with information about mode of completion (independent, assisted, proxy) collected, along with basic demographic information, and a short evaluation of the survey’s accessibility.

3Goreczny

et al. (2011), Godan et al. (2008), Vilchinsky et al. (2010), Gething and Wheeler (1992), Celik et al. (2010), Yuker et al. (1970), Yuker and Hurley (1987), Staniland (2011), Gething (1994), ComRes (2011), Findler et al. (2007), Grewal et al. (2002).

48     B. S. Tan et al.

Participants and Recruitment A total of 539 participants responded to the survey which was advertised through disability agencies throughout Australia, and various mediums including Web sites, newsletters, newspapers, and flyers. Sixty-seven (67) respondents were identified as having a chronic illness rather than a disability. Their data were removed for analysis as a separate data set. This left 472 respondents with disability included in the sample reported here. A wide range of disabilities were identified by participants who were asked to state their main disability (Table 3.1). People with physical/diverse disability represented just under half (46.2%, N: 218) of respondents, and people with intellectual/learning disability accounted for just under a third of respondents (29.4%). Female respondents comprised 58% and males 42%. Ages ranged from 18 to over 65, with a relatively even spread of respondents across the age groupings. 86.7% of respondents completed the Standard English version of the survey (N: 409), while 13.3% of respondents completed the Easy English version (N: 63). The majority of respondents completed the survey independently 63.6% (N: 300), 10.8% completed it with assistance (N: 51), and 23.5% were carers completing the survey from the viewpoint of a person they cared for (N: 111).

Data Analyses Three primary statistical analyses were conducted using Statistical Package for the Social Sciences (SPSS). The dependent variables analysed were the 20 item negative attitudes and 14 item settings, with data Table 3.1  Respondent distribution by disability type Disability type

N

Percentage

Physical/diverse Intellectual/learning Sensory/speech Psychiatric Total

218 139 80 35 472

46.2 29.4 16.9 7.4

3  Understanding Negative Attitudes Toward Disability …     49

analyses comparing the independent variable disability types against the negative attitudes and settings as reported by people with disability. A further factor analysis of the 20 item negative attitude set was conducted to identify attitude “clusters” and explore the comparative frequency of these for each disability type.

Results The results presented below explore the kinds of negative attitudes experienced by adults with disability in Australia and the level of difficulty caused; the attitudes experienced by different disability types; and the prevalence of negative attitudes across different settings.

Negative Attitudes Experienced by People with Disability Table 3.2 presents data in relation to the proportion of respondents who identified experiencing each negative attitude item, and the mean score of difficulty this caused them. Higher mean scores translate to greater difficulty that the particular negative attitude has caused the person with disability. The most commonly experienced negative attitude by people with disability was a lack of knowledge and understanding about disability, with 84.1% (n: 397) of respondents reportedly having experienced this within the past year. This also caused the highest level of difficulty of all attitudes experienced, with a mean score (M ) of 6.55 (on a scale of 0–10). The second most frequent negative attitude experienced was that people with disability felt that they were not respected, with 74.4% (n: 351) experiencing this in the previous 12 months. A lack of respect also caused a relatively high degree of difficulty for people with disability (M: 5.70). 71.2% (n: 336) of respondents felt that people didn’t believe the extent of their disability. This caused the second greatest difficulty to people with disability (M: 6.30).

50     B. S. Tan et al. Table 3.2  Negative attitudes experienced in last 12 months Negative attitudes

Number experiencing Na %a

Level of difficulty Nb Meanb

(18) People lacked knowledge and understanding about my disability (5) People didn’t show me respect (8) People didn’t believe the extent of my disability (4) People treated me as though I was less intelligent than non disabled people (1) People treated me as not capable of making decisions (20) People didn’t listen to me or ignored me (17) People didn’t know how to behave around me (7) People treated me more like a child than an adult (11) People thought it was unfair or unreasonable to make adjustments or do things differently for me (6) People thought I didn’t contribute much to society (3) People assumed that I couldn’t talk or think for myself (15) People rejected or avoided me (13) People wrongly assumed that I was dependent on someone or needed to be cared for (12) People used unkind words about me (14) People were not willing to spend time with me and talk with me (2) People thought I was not capable of forming close relationships with others (10) People thought I should not have a say in major decisions affecting my life (9) I was not welcomed in public places (19) People bullied me (16) People acted in violent ways towards me

397

84.1

392

6.55

351 336

74.4 71.2

350 335

5.70 6.30

329

69.7

328

5.85

328

69.5

326

5.21

326 325

69.1 68.9

325 320

5.90 5.45

313

66.3

311

5.50

306

64.8

302

5.52

304

64.4

302

5.60

303

64.2

301

5.32

295 292

62.5 61.9

293 290

5.53 4.92

294 293

62.3 62.1

291 290

5.27 5.62

269

56.0

268

5.05

244

51.7

242

4.65

235 231 164

49.8 48.9 34.7

234 228 163

4.51 4.89 3.53

Note Arranged from most to least frequent. Total responses for each category N = 472 aNumbers and percentage of people with disability experiencing negative attitudes in the past 12 months, as a subset of total sample of 472 bNumbers of people reporting degree of difficulty, as a subset of total sample of 472, and the mean scores for degree of difficulty caused by the negative attitude

3  Understanding Negative Attitudes Toward Disability …     51

Over two-thirds of respondents also reported negative attitudes in relation to the following: being treated as though less intelligent than those without disability; treated as not capable of making decisions; not being listened to or being ignored (which rendered the third highest degree of difficulty for people); people not knowing how to behave around the person with disability; and being treated more like a child than an adult. On the other hand, negative attitudes in relation to bullying and violence were the least experienced attitudes, with 48.9% (n: 231) and 34.7% (n: 164) of respondents having experienced bullying and violent behaviors, respectively. The mean level of difficulty experienced due to bullying (M: 4.89) was slightly lower than for other negative attitudes experienced, while violent behavior (M: 3.53) was rated the lowest in terms of the level of difficulty caused. Apart from “people acted in violent ways towards me,” the negative attitude items had a frequency percentage of 48% or higher, meaning that at least 1 in 2 people had experienced all but one of these negative attitudes within the past year.

Negative Attitudes According to  Type of Disability To explore the experience of attitudes across different disability types, a factor analysis was conducted of attitude items. The factor analysis allowed us to explore the factor (or cluster of negative attitudes) most commonly experienced by people with disability, as well as the degree of difficulty, across each disability type. The factor analysis identified three factors or clusters of attitude items, discussed below. These factors utilized all items with the exception of four which were excluded due to low factor loadings (of less than 0.5). The three factors were thematized and comprised the following items: Competency (Factor 1): The items in this factor are all statements regarding competency of people with disability performing activities in everyday life and related to lowered expectations from the public. This factor included attitude items 1, 2, 3, 4, 7, and 10.

52     B. S. Tan et al.

Knowledge (Factor 2): Consisted mainly of items in relation to limited knowledge of disability and the lack of awareness of disability and included items 8, 14, 15, 17, 18, and 20. Hostility (Factor 3): consisted of items in relation to violent and bullying behaviors. This factor included negative attitude items 9, 12, 16, and 19. Analyses related to different disability types are summarized below (Tables 3.3, 3.4, and 3.5). Overall, the frequency level of negative attitudes experienced by people with disability was highest in the factor group of “knowledge” (72.8%), followed by “competency” (64.25%) and “hostility” (50.1%). People with psychiatric disability (83.3%) most commonly experienced negative attitudes related to the factor of “knowledge” (Table 3.3), followed by people with sensory/speech disability (74.0%). Within the knowledge cluster, across all disability types, the most commonly experienced negative attitude item was associated with “people lacked knowledge and understanding about my Table 3.3  Knowledge: negative attitudes experienced by disability type Knowledge

Intellectual/ Physical/ Sensory/ Psychiatric Total learning diverse speech no.

(18) People lacked knowledge and understanding about my disability (8) People didn’t believe the extent of my disability (20) People didn’t listen to me or ignored me (17) People didn’t know how to behave around me (15) People rejected or avoided me (14) People were not willing to spend time with me and talk with me Overall knowledge factor (%)

72.7% (101)

88.5% (193)

86.3% (69)

97.1% (34)

397

64.0% (89)

69.7% (152)

77.5% (62)

94.3% (33)

336

66.9% (93) 64.0% (89)

67.0% (146) 67.9% (148)

72.5% (58) 75.0% (60)

82.9% (29) 80% (28)

326

59.7% (83) 63.31% (88)

60.1% (131) 59.17% (129)

67.5% (54) 65.0% (52)

77.1% (27) 68.6% (24)

65.1

68.7

74.0

83.3

325 295 293 72.8

3  Understanding Negative Attitudes Toward Disability …     53 Table 3.4  Competency: negative attitudes experienced by disability type Competency

Intellectual/ learning

Physical/ diverse

Sensory/ speech

Psychiatric Total no.

(4) People treated me as though I was less intelligent than non disabled people (1) People treated me as not capable of making decisions (7) People treated me more like a child than an adult (3) People assumed that I couldn’t talk or think for myself (2) People thought I was not capable of forming close relationships with others (10) People thought I should not have a say in major decisions affecting my life Overall competency factor (%)

68.3% (95)

67.0% (146)

78.8% (63)

71.4% (25)

329

74.1% (103)

65.1% (142)

70.0% (56)

77.1% (27)

328

66.9% (93)

63.8% (139)

68.8% (55)

74.3% (26)

313

65.5% (91)

61.9% (135)

71.3% (57)

57.1% (20)

303

60.4% (84)

55.0% (120)

51.3% (41)

68.6% (24)

269

60.4% (84)

48.6% (106)

45.0% (36)

51.4% (18)

244

65.9

60.2

64.2

66.7

64.25

Table 3.5  Hostility: negative attitudes experienced by disability type Hostility

Intellectual/ learning

Physical/ diverse

Sensory/ speech

Psychiatric

Total no.

(12) People used unkind words about me (9) I was not welcomed in public places (19) People bullied me (16) People acted in violent ways towards me Overall hostility factor (%)

62.6% (87)

60.6% (132)

58.8% (47)

80.0% (28)

294

50.4% (70)

50.5% (110)

51.3% (41)

40.0% (14)

235

50.4% (70) 35.3% (49)

45.9% (100) 33.0% (72)

51.3% (41) 38.8% (31)

57.1% (20) 34.3% (12)

231

49.7

47.5

50.1

52.9

164 50.1

54     B. S. Tan et al.

disability” (397 respondents). This was particularly so for people with psychiatric disability (97.1%), physical/diverse (88.5%), and sensory/ speech (86.3%) disabilities. The second most dominant attitude experienced was that of “people didn’t believe the extent of my disability” (336 respondents). This was especially so for those with psychiatric disability (94.3%). Competency was the next most frequently experienced cluster of attitudes. People with a psychiatric disability (66.7%) and intellectual/learning disability (65.9%) recorded the highest levels of negative attitudes associated with competency (Table 3.4). The most prevalent attitude experienced within this cluster was “People treated me as though I was less intelligent than non disabled people” (329 respondents), especially for people with sensory/speech disability (78.8%). The other prevalent attitude was “People treated me as not capable of making decisions” (328 respondents). This was especially so for people with psychiatric (77.1%) and intellectual/learning disabilities (74.1%). People with psychiatric disability (52.9%) were the group most likely to have experienced negative attitudes related to the factor of “hostility” (Table 3.5). Within the hostility cluster, across all disability types, the most commonly experienced negative attitude item was associated with “people used unkind words about me” (294 respondents). This was particularly so for people with psychiatric disability (80.0%). The second most dominant attitude experienced was “I was not welcomed in public places” (235 respondents). Half of all respondents experienced this with the exception of those with psychiatric disability (40%).

Negative Attitudes and Settings Respondents were asked as to whether they had experienced negative attitudes in a variety of settings over the past twelve months (Table 3.6). Respondents could answer “yes,” “no,” or that it was not relevant to them (Table 3.6 excludes “not relevant” responses so as to report data only about the experiences of respondents who used each setting).

3  Understanding Negative Attitudes Toward Disability …     55 Table 3.6  Negative attitudes experienced by disability type and settings (14 items) Settings

Intellectual/ learning (%)

Physical/ diverse (%)

Sensory/ Psychiatric Average speech (%) (%) (%)

Going to shops, pubs, and restaurants Receiving health services Using public transport In the media In the workplace At TAFE, University or other learning Receiving disability services In community groups At Centrelink In religious and spiritual groups Receiving services at banks, financial institutions, and insurers Dealing with utilities and communications services Housing services Dealing with police and legal services

58.3

69.6

66.2

53.6

61.9

49.6

60.8

46.5

82.1

59.8

55.9

70.6

60.9

47.6

58.8

51.2 56.3

48.4 51.4

55 62.1

76.9 61.1

57.9 57.7

54.2

46.5

63

50

53.4

46.5

53.5

44.4

56.3

50.2

50.9

53

48.5

42.9

48.8

42.5 38.6

40.1 46.2

41.8 36.4

56.3 57.1

45.2 44.6

41.2

46.2

50

26.1

40.9

41.8

41

46.3

27.3

39.1

33.3 28

43.7 32.8

22.9 25.5

42.1 50

35.5 34.1

Overall, the setting in which people had most frequently experienced negative attitudes was “shops, pubs and restaurants” (61.9%). This was the most frequently identified setting of negative attitudes for people with intellectual/learning disability (58.3%) and those with a sensory/ speech disability (66.2%).

56     B. S. Tan et al.

“Health services” (59.8%) were the second most frequent setting for experiencing negative attitudes and were the setting rated highest for those with psychiatric disability (82.1%). The third highest setting for experiencing negative attitudes was “public transport” (58.8%) which was the highest setting for those with physical diverse disabilities (70.6%) and was scored highly by people with sensory/speech (60.9%) and intellectual/learning (55.9%) disabilities. “The media” was rated highly for the experience of negative attitudes (57.9%), especially by those with psychiatric disability (76.9%). “The workplace” (57.7%) was also a prevalent setting for negative attitudes, particularly for those with sensory/speech (62.1%) and psychiatric (61.1%) disabilities. Negative attitudes were frequently experienced at “TAFE, University or other learning” by those with sensory/speech disability (63%), while half (50.2%) of all respondents using disability services reported experiencing negative attitudes toward disability in this setting. It should be noted that responses of “not relevant” were relatively high in the following settings: religious and spiritual groups (54.15%); at TAFE, University or other learning (51.63%); dealing with police and legal services (48.53%); housing services (44.78%); and the workplace (41.55%). This may reflect the underlying social exclusion of people with disability from these important social settings.

Summary of Results Overall, the data presented above demonstrate that the experience of negative attitudes is a complex one. Despite the way, they are discussed in society and policy (and sometimes in the literature); negative attitudes are shown here to be comprised of clusters of attitudes, rather than being a singular or homogenous concept. These clusters of attitudes (and attitudes separately) are experienced diversely by people with different disabilities. In Australia, perhaps due to the longevity of inclusion legislation, policy, and programs, the experience of negative attitudes related to hostility is one that is a minority (though even a minority experience is unacceptable). The attitudinal barrier for the majority of Australian adults with disability is that related to the

3  Understanding Negative Attitudes Toward Disability …     57

“knowledge” cluster. Most prevalent overall of attitudes in this cluster was that of “people lacked knowledge and understanding about my disability.” The “knowledge” cluster speaks to a set of attitudes about disbelief of extent of disability, social rejection and avoidance, and lack of knowledge about how to behave around a person with disability, leading to exclusion in basic interactions. These findings are consistent with a recent UK study that found people not believing a person was disabled was the most prevalent attitude, followed by being talked to in a patronizing manner, while aggressive and hostile behavior toward people with disability was relatively low (Aiden and McCarthy 2014). In general, people with psychiatric disability and those with intellectual/learning disability reported variably higher levels of negative attitudes than those with speech/sensory and physical/diverse disabilities. This is in line with a raft of previous literature documenting heightened negative attitudes held toward these groups, and with the National Disability Authority’s (2007) observation that attitudes tend to be more negative to those disabilities perceived to be unpredictable or more hidden. A good example of this is the experience of people with psychiatric disability in this study, who reported a 94% frequency of people not believing the extent of their disability, compared to other groups (ranging from 64 to 77.5%). Our study identifies that specific attitudes are experienced more frequently by some groups than others. For example, within the “competence” cluster, people with physical/diverse disability reported less frequent experience of these attitude types than did those with all other disabilities, highlighting a need to shift public assumptions about competence and capability specifically for people with intellectual, sensory/speech and psychiatric disabilities. This story of the disability type-related experience of negative attitudes continues into the setting where these attitudes are experienced. Settings that reported the highest levels of negative attitudes were “shops, pubs and restaurants” (especially so for those with intellectual/learning and speech/ sensory disabilities), health services (particularly for people with psychiatric disability), public transport (particularly for people with physical/diverse and sensory/speech disabilities), the media, and the workplace.

58     B. S. Tan et al.

Actions to Address Negative Attitudes to Foster Social Inclusion There is consistent evidence that negative attitudes are a major barrier to social inclusion for people with disability, and that this remains a factor even in countries, such as Australia, that have experienced decades of inclusion policy and practice. While Australian government policy recognizes the need for attitude change and overcoming stigma as priority actions within a social inclusion agenda, there is little nuanced discussion of the nature of attitudes, the settings in which they are experienced and the different effects on different disability types. Additionally, there is almost no discussion at the policy level of strategies or interventions (beyond legislation) that could be implemented to bring about changed attitudes. Respondents to the “1 in 4 Poll” were asked to consider how attitudes to disability could be improved. Ninety-five (95) respondents chose to answer this question providing numerous ideas, classified into 11 themes. The most prevalent four (Table 3.7) focused on educating people, being open to communication, getting to know people with disability, and the role of the media in ensuring positive messages regarding disability. These key suggestions reflect the focus of attitude change interventions used to date as explored in a number of studies which cautiously highlight potential for attitude change. A key finding and recommendation in the literature is that attitude change is a multi-dimensional phenomenon that requires concurrent Table 3.7  Respondents (1 in 4 poll) suggestions for improving attitudes (top 4) Suggestions

Percentage of suggestions (%)

Better understanding of disability through education Communication, open-mindedness, and patience Getting to know people with disability (including accepting and respecting people with disability) Positive role of advertising and media

32 17 15 14

3  Understanding Negative Attitudes Toward Disability …     59

strategies at the personal, community or organizational, and government levels. Fisher and Purcal (2017) reviewed studies of interventions addressing attitudes to disability and concluded that: “Multi-level interventions are more likely to be effective because they can address the diversity of disability experience, reinforce positive attitudes and replace negative attitudes through repeated information, emotional engagement and mandated change” (Fisher and Purcal 2017, pp. 170–171). At the personal level, research suggests that multipronged, long-term public education campaigns, that directly involved people with disabil­ ity, contributed to positive change (Fisher and Purcal 2017). There is also strong evidence that prolonged direct contact with people with disability improved people’s attitudes but that the quality of contact was an important variable (McManus et al. 2011; Fisher and Purcal 2017; Murfitt 2006; Keith et al. 2015). To be most effective, direct contact needed to occur in a “supportive environment, and involve positive interactions and additional information” (Fisher and Purcal 2017, p. 167). Murfitt (2006), in an examination of workplaces, found that contact between people with and without disability should be based around working together toward a common goal where each party holds equal status. Positive shared experience working on a common goal can enable people to understand that disability is most often irrelevant to a person’s identity and skills, and is crucial in addressing stereotypes and the resultant conscious and unconscious bias. As summarized by Keith et al. (2015), contact needs to be “equal, cooperative, and pleasant” (p. 24). At the organizational level, Fisher and Purcal (2017) concluded that there is credible evidence that organizational-level policies in the employment sector can be effective in changing attitudes. This was also evident in education, where the combination of inclusive school education, inclusion training for teachers and student awareness programs, have been shown to improve attitudes, especially when they are well resourced and operate over prolonged time periods (Fisher and Purcal 2017). Similarly, educational and contact-based strategies were found to significantly improve attitudes and behavioral intentions toward people with mental illness (Corrigan et al. 2012; Dalky 2012). However, the available evidence from the health sector is not as positive and indicates

60     B. S. Tan et al.

that training and contact are insufficient to change attitudes (Fisher and Purcal 2017). Overall, studies show that disability awareness interventions can be used to positively influence knowledge about people with disability—a finding relevant to this study given the importance of the “knowledge” cluster of attitudes—where these have multiple components, interactive activities, social contact with people with disability, and several sessions over a longer period of time rather than a brief oneoff session (Lindsay and Edwards 2013). However, an evaluation of 13 disability awareness and education programs in the Australian State of Victoria (Kleeman and Wilson 2007) found that most of these focused only on general aspects of knowledge about disability; making the disability “visible” rather than “invisible” to participants; and building knowledge of the lived experience of disability. It is likely that few, if any, community education programs directly address the range of negative attitudes identified above. At the government level, laws and policy rely on interrelationships with the personal and organizational-level policy interventions, such as disability awareness and training programs. The successful example of inclusive education demonstrates how government-level policies can contribute to changing attitudes when they are supported by personal and organizational-level policies and adequate resources (Fisher and Purcal 2017). The use of media has been proposed as a further population level strategy, in response to the argument that “while direct contact is highly valuable, it can be difficult to secure on a large scale and in positive way” (Walker and Scior 2013, p. 2201). A range of studies identify positive attitude change through viewing specific media involving personal accounts of people with disability, such as person centered videos which focused on real-life experiences of people with disability and/or their perspectives toward disability (Lu et al. 2018), or footage of Paralympics (Ferrara et al. 2015). However, while potentially positive in outcome, mass media such as television is recognized as offering opportunities to both positively and negatively affect attitudes toward disability (Ferrara et al. 2015). The findings from the “1 in 4 Poll” offer a more detailed analysis of specific, as well as clusters of, attitudes needing to be changed, the settings they are experienced in and the differential experience of

3  Understanding Negative Attitudes Toward Disability …     61

people with different disabilities. These data help us better target attitude change interventions, such as by selecting and presenting personal accounts about people with disability that challenge specific attitudes held about that group—for example, that address issues of competence for people with psychiatric disability. In addition, it provides data to inform the design of education and awareness programs, identifying the knowledge components necessary to overcome exclusion such as the lack of knowledge about, and ways to interact with, people with different disabilities. Finally, settings and segments of the community, such as shops; pubs and restaurants; health services; public transport; and the workplace, can be targeted for specific interventions based on what we now know about the frequency of negative attitudes for different disability types in these settings.

Conclusion The lack of planned and concrete action about attitude change in Australia has allowed negative attitudes to disability to remain a frequent experience by people with disability and a significant barrier to inclusion. The findings from literature on attitude change interventions to date, suggest that interventions do work, but need to be operationalized at the personal, organizational and societal levels. Educational, awareness raising programs, direct contact with people with disability that involves shared goals and positive experiences, the sharing of personal accounts of people with disability, the use of media in a variety of formats (including positive portrayals of people with disability in mainstream media), can all play a significant part in educating people about disability and challenging what are often commonly held stereotypes. Government policy and legislation need to underpin all such interventions to ensure the human rights of people with disability are upheld and reinforced. What is needed is planned and coordinated action informed by the evidence. The “1 in 4 Poll” shows that the level of experience of negative attitudes by people with disability is too frequent across society as a whole. Even where the statistics are lower (e.g., “people acted in

62     B. S. Tan et al.

violent ways towards me”), it should be emphasized that any incident in any setting is unacceptable. The “1 in 4 Poll” provides findings to focus intervention so that policies and government strategies can be concretized into change actions.

References Aiden, H., & McCarthy, A. (2014). Current Attitudes Towards Disabled People. London, UK: Scope. Celik, S. S., Kapucu, S., Tuna, Z., & Akkus, Y. (2010). Views and Attitudes of Nursing Students Towards Ageing and Older Patients. Australian Journal of Advanced Nursing, 27(4), 24–30. Commonwealth of Australia. (2011). National Disability Strategy 2010–2020. Canberra: Council of Australian Governments. ComRes. (2011). Scope Tracker Survey of Disabled People: A Survey of Disabled People Conducted on Behalf of Scope. Retrieved from http://www.comresglobal.com/polls/scope-tracker-survey-of-disabled-people/. Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D., & Rüsch, N. (2012). Challenging the Public Stigma of Mental Illness: A Meta-Analysis of Outcome Studies. Psychiatric Services, 63(10), 963–973. Dalky, H. F. (2012). Mental Illness Stigma Reduction Interventions: Review of Intervention Trials. Western Journal of Nursing Research, 34(4), 520–547. Daruwalla, P., & Darcy, S. (2005). Personal and Societal Attitudes to Disability. Annals of Tourism Research, 32(3), 549–570. Deane, K. (2009). Shut Out: The Experience of People with Disabilities and Their Families in Australia. Canberra: Australian Government. Family and Community Development Committee. (2014). Inquiry into Social Inclusion and Victorians with Disability. East Melbourne: Parliament of Victoria. Ferrara, K., Burns, J., & Mills, H. (2015). Public Attitudes Toward People with Intellectual Disabilities After Viewing Olympic or Paralympic Performance. Adapted Physical Activity Quarterly, 32, 19–33. Findler, L., Vilchinsky, N., & Werner, S. (2007). The Multidimensional Attitudes Scale Toward Persons with Disabilities (MAS): Construction and Validation. Rehabilitation Counseling Bulletin, 50(3), 166–176. Fisher, K. R., & Purcal, C. (2017). Policies to Change Attitudes to People with Disabilities. Scandinavian Journal of Disability Research, 19(2), 161–174. Gething, L. (1994). The Interaction with Disabled Person’s Scale. Journal of Social Behaviour and Personality, 9, 23–42.

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Gething, L., & Wheeler, B. (1992). The Interaction with Disabled Person Scale: A New Australian Instrument to Measure Attitudes Towards People with Disabilities. Australian Journal of Psychology, 44(2), 75–82. Godan, A., Brajkovic, L., Fortuna, V., & Godan, L. (2008). The Attitudes and Stereotypes of Supporting Fields Towards the Persons with Disabilities. Collegium Antropologicum, 32(3), 783–791. Goreczny, A. J., Bender, E., Caruso, G., & Feinstein, C. S. (2011). Attitudes Toward Individuals with Disabilities: Results of a Recent Survey and Implications of Those Results. Research in Developmental Disabilities, 32(5), 1596–1609. Grewal, I., Joy, S., Lewis, J., Swales, K., & Woodfield, K. (2002). ‘Disabled for Life?’ Attitudes Towards, and Experiences of, Disability in Britain: A Report of Research Carried Out by the National Centre for Social Research on Behalf of the Department for Work and Pensions. London, UK: Department for Work and Pensions. Harasymiw, S., & Horne, M. (1976). Teacher Attitudes Toward Handicapped Children and Regular Class Integration. Journal of Special Education, 10(4), 303–344. Ju, S., Roberts, E., & Zhang, E. (2013). Employer Attitudes Toward Workers with Disabilities: A Review of Research in the Past Decade. Journal of Vocational Rehabilitation, 38(2), 113–123. Keith, J. M., Bennetto, L., & Rogge, R. D. (2015). The Relationship Between Contact and Attitudes: Reducing Prejudice Toward Individuals with Intellectual and Developmental Disabilities. Research in Developmental Disabilities, 47, 14–26. Kleeman, J., & Wilson, E. (2007). Seeing Is Believing: Changing Attitudes to Disability. A Review of Disability Awareness Programs in Victoria and Ways to Progress Outcome Measurement for Attitude Change. Melbourne, VIC: Scope. Klooster, P. M., Dannenberg, J. W., Taal, E., Burger, G., & Rasker, J. J. (2009). Attitudes Towards People with Physical or Intellectual Disabilities: Nursing Students and Non-nursing Peers. Journal of Advanced Nursing, 65(2), 2562–2573. Lindsay, S., & Edwards, A. (2013). A Systematic Review of Disability Awareness Interventions for Children and Youth. Disability & Rehabilitation, 35(8), 623–646. Lu, J., Webber, W. B., Romero, D., & Chirino, C. (2018). Changing Attitudes Toward People with Disabilities Using Public Media: An Experimental Study. Rehabilitation Counselling Bulletin, 61(3), 175–186. McManus, J. L., Feyes, K. J., & Saucier, D. A. (2011). Contact and Knowledge as Predictors of Attitudes Toward Individuals with Intellectual Disabilities. Journal of Social & Personal Relationships, 28(5), 579–590.

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Moore, D., & Nettelbeck, T. (2013). Effects of Short-Term Disability Awareness Training on Attitudes of Adolescent Schoolboys Toward Persons with a Disability. Journal of Intellectual & Developmental Disability, 38(3), 223–231. Morin, D., Rivard, M., Crocker, A. G., Boursier, C. P., & Caron, J. (2013). Public Attitudes Towards Intellectual Disability: A Multidimensional Perspective. Journal of Intellectual Disability Research, 57(3), 279–292. Murfitt, K. F. (2006). Attitude Change in Employment of People Who Have a Disability. Melbourne, Australia: Deakin University, School of Psychology. Murfitt, K. F., Crosbie, J., Zammit, J., & Williams, G. (2018). Employer Engagement in Disability Employment: A Missing Link for Small to Medium Organizations. A Review of the Literature. Journal of Vocational Rehabilitation, 48(3), 417–431. National Disability Authority. (2007). Literature Review on Attitudes Towards Disability. Retrieved from http://nda.ie/nda-files/Literature-Review-ofInternational-Evidence-on-Attitudes-to-Disability-2007.pdf. National Disability Authority. (2011). A National Survey of Public Attitudes to Disability in Ireland. Retrieved from http://nda.ie/Publications/Attitudes/ Public-Attitudes-to-Disability-in-Ireland-Surveys/Public-Attitudes-toDisability-in-Ireland-Survey-2011.html. National Disability Insurance Agency (NDIA). (n.d.). ILC Policy Framework. Retrieved from https://www.ndis.gov.au/communities/ilc-home/ilc-policy-framework.html. Nowicki, E. A., & Sandieson, R. (2002). A Meta-Analysis of SchoolAge Children’s Attitudes Towards Persons with Physical or Intellectual Disabilities. International Journal of Disability, Development & Education, 49(3), 243–265. Ouellette-Kuntz, H., Burge, P., Brown, H. K., & Arsenault, E. (2010). Public Attitudes Towards Individuals with Intellectual Disabilities as Measured by the Concept of Social Distance. Journal of Applied Research in Intellectual Disabilities, 23(2), 132–142. Productivity Commission. (2011). Disability Care and Support. Report No. 54. Canberra. Scior, K. (2011). Public Awareness, Attitudes and Beliefs Regarding Intellectual Disability: A Systematic Review. Research in Developmental Disabilities, 32(6), 2164–2182. Staniland, L. (2011). Public Perceptions of Disabled People: Evidence from the British Social Attitudes Survey 2009. London, UK: Office of Disability Issues.

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Taylor, C. J. (1998). Factors Affecting Behavior Toward People with Disabilities. The Journal of Social Psychology, 138(6), 766–771. Thompson, D., Fisher, K., Purcal, C., Deeming, C., & Sawrikar, P. (2011). Community Attitudes to People with Disability: Scoping Project. Canberra: Australian Government Department of Families, Community Services and Indigenous Affairs. Tringo, J. (1970). The Hierarchy of Preference Toward Disability Groups. Journal of Special Education, 4, 295–306. Tur-Kaspa, H., Weisel, A., & Most, T. (2000). A Multidimensional Study of Special Education Students’ Attitudes Towards People with Disabilities: A Focus on Deafness. European Journal of Special Needs Education, 15(1), 13–23. Victorian Government. (2016). Absolutely Everyone, State Disability Plan 2017–2020. Retrieved from http://statedisabilityplan.vic.gov.au/application/files/2314/8062/9382/1610033_Victorian_state_disability_ plan_2017-2020_Text_WEB.pdf. Vilchinsky, N., Werner, S., & Findler, L. (2010). Gender and Attitudes Towards People Using Wheelchairs: A Multidimensional Perspective. Rehabilitation Counselling Bulletin, 53(3), 163–174. Walker, J., & Scior, K. (2013). Tackling Stigma Associated with Intellectual Disability Among the General Public: A Study of Two Indirect Contact Interventions. Research in Developmental Disabilities, 34, 2200–2210. Weiner, B., Perry, R., & Magnusson, J. (1988). An Attributional Analysis to Stigmas. Journal of Personality and Social Psychology, 55, 738–748. White, A. E., & Clark, L. L. (2010). Overcoming Ignorance and Stigma Relating to Intellectual Disability in Healthcare: A Potential Solution. Journal of Nursing Management, 18(2), 166–172. Wilson, E., Campain, R., Moore, M., Hagiliassis, N., Gottliebson, D., Bink, M., et al. (2013). An Accessible Survey Method: Increasing the Participation of People with a Disability in Large Sample Social Research. Telecommunications Journal of Australia, 63(2), 1–14. Yazbeck, M., McVilly, K., & Parmenter, T. R. (2004). Attitudes Toward People with Intellectual Disabilities: An Australian Perspective. Journal of Disability Policy Studies, 15(2), 97–111. Yuker, H. E., Block, J. R., & Younng, J. H. (1970). The Measurement of Attitudes Toward Disabled Persons. Albertson, NY: Human Resources Center. Yuker, H. E., & Hurley, M. K. (1987). Contact with and Attitudes Toward Persons with Disabilities: The Measurement of Intergroup Contact. Rehabilitation Psychology, 32(3), 145–154.

4 The School-to-Prison Pipeline: The Plight of African American Males in Special Education Lia Sacks

Introduction Approximately 15% of the world’s population, or one billion people, has sensory, physical, mental, and/or intellectual disabilities (World Health Organization [WHO] 2016). Compared to typically developing citizens, people with special needs experience greater obstacles when they try to access education, employment, community engagement opportunities, housing, and leisure and recreational activities. As a result, individuals with disabilities experience substandard health outcomes, limited educational access and educational achievement, deficient employment and earning potential, and a high prevalence of poverty. Despite the universality of disabilities, the manner in which they are interpreted and addressed, including individuals’ health, educational, rehabilitative, social, and support needs, deviates across contexts

L. Sacks (*)  Teachers College, Columbia University, New York, NY, USA e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_4

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and areas of the world. The relationships between diverse cultural and religious beliefs and customs, classification of disabilities, availability of resources, and social practices within specific countries, regions, and environments contribute to the intricacy of this challenging social issue. In recent decades, various laws and programs have been established around the world as part of a vigorous international movement to foster the dignity and equitable rights of individuals with disabilities (Antony 2013). One major mission of the global disability advocacy effort is to provide greater access to high-quality schooling. Historically, individuals with special needs were educated in environments that were separate from their typically developing peers. However, inclusive education is gaining popularity, whereby students with disabilities and typically developing students are taught in the same schools and classrooms. The inclusive education model benefits students with disabilities in many ways, “Inclusive education produces people who are better educated and better able to participate and contribute as members of their communities and society than segregated education” (Vinodrao 2016).

United States Special Education System In the United States of America, special education is defined as individually designed instruction for students with disabilities (“Q & A on IDEA 2004” 2009). Special education includes the adaptation and modification of content, presentation of information, and assessment methods. Its overarching goal is to address the extensive and unique educational needs that result from students’ disabilities as well as to promote their access to general education as often as deemed appropriate. Special education services may be implemented in the school, home, hospital, and other locations. American special education has a comprehensive focus that extends beyond academic performance in order to incorporate related services, such as physical therapy, occupation therapy, speech-language therapy, psychological/counseling, and orientation and mobility training. Approximately 13% of students in American public schools—6.5 million children—receive special education services (“Q & A on IDEA 2004” 2009).

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Individuals with Disabilities Education Act The American special education system is guided by the Individuals with Disabilities Education Act (IDEA), the flagship special education law, which was originally enacted in 1975 (and includes amendments written as recently as 2004) (Hardman et al. 2014). According to IDEA, all students with disabilities, ages 3–21 years, are legally entitled to free special education services that meet their individualized needs (Institute of Education Sciences: National Center for Education Statistics 2016). The IDEA law includes several elements, including Free and Appropriate Public Education (FAPE), Least Restrictive Environment (LRE), zero exclusion, appropriate evaluation, Individualized Education Plan (IEP), and parent rights and involvement. According to the FAPE requirement, all special education services, as well as private and residential programs (if deemed the most appropriate placement for the student), must be cost-free to the parents/guardians of the students who receive special education services (U.S. Department of Education, n.d.; U.S. Department of Education 2010). “Appropriate” educational programs are those that meet students’ individual needs and goals and offer equitable opportunities as their general education peers. For example, if general education students are provided with physical education, school programs (art, music, etc.), and extracurricular activities, then students with disabilities must be offered the same school services. Special education programs are considered to be public because they are supported by governmental monies and supervised by public schools, which are a division of the government’s Department of Education. “Education” indicates general education, special education, and related services. Tax money that is allotted for public education must include special education. As a result, the infrastructure and funding to provide resources such as physical therapy, speech-language therapy, medical equipment, and alternative and augmentative communication devices are considered a function of most American public schools (Griffith 2015). The least LRE clause indicates that students with disabilities must be educated—to the maximum extent appropriate—in the same setting as general education peers (“Information on Least Restrictive Environment,” n.d.). Students with disabilities should not be removed from general education classes unless satisfactory education cannot be

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provided, even with supplementary aids and services. In order to ensure that students are placed in their LRE, school districts must provide a full continuum of alternate placements. These disparate settings include fulltime general education, part-time general education/special education, full-time special education in inclusive schools, full-time special education in special schools, homebound, and hospital or institution (U.S. Department of Education, n.d.; U.S. Department of Education 2010). Approximately 95% of American students with disabilities are educated in regular schools with general education peers. In 2008–2009, approximately 58% of students with disabilities spent 80% or more of their day in the general education setting (Aron and Loprest 2012). The zero exclusion provision denotes that every student with a disability must be provided with FAPE and that no child can be excluded from receiving special education services, even children with the most severe disabilities.

Individualized Education Plan After an at-risk student is referred for special education, an appropriate evaluation must occur, whereby a battery of diverse examinations, including parent feedback, observations, and formal assessments, is conducted to ascertain the student’s eligibility for special education (“IDEA and the Special Education Process” 2011; “What’s the Big Idea #2,” n.d.). The assessment results are analyzed in order to determine if the student’s present levels of performance are compatible with the criteria of one or more of the disability categories established by IDEA. If a student qualifies for special education, the evaluation results are used to design an IEP. An IEP is an educational tool that guides the instruction, assessment, and progress monitoring of students with disabilities in their LRE (UNICEF 2014). IEPs were first introduced in the USA as part of the 1975 Education for All Handicapped Children Act (Mitchell et al. 2010). An IEP is a legal document that: (a) outlines the student’s “appropriate” education, (b) indicates the manner in which the student’s disability impacts participation in general education courses, (c) details the services that the student will receive (service provider, location, and number of minutes per week), (d) states measurable academic and functional goals, and how they will be measured (includes post-secondary goals

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after age 16), (e) outlines necessary accommodations and modifications, and (f ) establishes the least restrictive environment in which the student will be placed (“What’s the Big Idea #2,” n.d.; Mitchell et al. 2010). The IEP goals determine the student’s educational programming, and IDEA mandates that annual meetings must occur in order to further review, design, and/or amend the IEP. A group of people, known as the “IEP team,” including the student, the student’s parents/guardians, general education teacher, special education teacher, administrator, psychologist, and related service providers, collaborate to create the document. After all IEP team members sign the IEP, it is considered contractual, and the school district must provide all of the outlined services (Siegel 2009). Although an IEP meeting is obligatory on an annual basis, parents/guardians or educators may request additional meetings at any time (Siegel 2009). All students, ages 3–21 years, who qualify for special education are required to have IEPs, and the IEP must address all disabilities with which the student has been diagnosed (Mitchell et al. 2010; Siegel 2009). IDEA emphasizes that parents and guardians should be actively involved in their children’s IEPs, and it is crucial that school representatives make deliberate efforts to ensure families’ involvement (“What’s the Big Idea #2,” n.d.). In fact, no aspect of the IEP document can be implemented without parental consent (Siegel 2009). Although all American IEPs must address the same topics, different states and school districts within the USA may utilize an array of IEP templates (U.S. Department of Education 2007). Because the free and appropriate education of students with disabilities, which includes the creation and implementation of IEPs, is legally mandated in the USA, the IEP system is executed in every public school that serves children with disabilities. As a result, the IEP methodology is well developed in the USA.

Cultural Diversity in American Public Schools When reporting data related to the race and ethnicity of Americans, people are classified as one of the following racial categories: White, Black, Hispanic, Asian, Pacific Islander, American Indian/Alaskan Native, or two or more races (“Percentage of Total Enrollment” 2016).

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In 2013, public students were represented by the following racial groups: 50% White, 16% Black, 25% Hispanic, 5% Asian/Pacific Islander, 1% American Indian/Alaskan Native, and 3% two or more races (“Percentage of Total Enrollment” 2016). During the 2013–2014 school year, 13% of public school students received special education services (“Percentage Distribution of Students Enrolled in Public Elementary and Secondary Schools, by Race/Ethnicity: Fall 2003” 2016). Of this group of students, 13% were White, 15% Black, 12% Hispanic, 7% Asian, 12% Pacific Islander, 17% American Indian/ Alaskan Native, and 13% two or more races (“Percentage Distribution of Children Ages 3–21” 2016). In recent decades, the demographic makeup of American public school students has drastically changed as demonstrated by a major increase in racial and ethnic diversity (Carr 2016). For the first time in history, starting in 2014, the majority of the public school student population belongs to the minority, rather than the White, demographic. In 2014, 50.2% of public school students in pre-kindergarten through grade 12 represented minority groups while 49.8% of students were White (Carr 2016; Klein 2015). In comparison, in 2002, 59% of public students were White and 41% were other races (“Percentage Distribution of Students Enrolled in Public Elementary and Secondary Schools, By Race/Ethnicity” 2016). Many urgent and unique educational issues, such as inadequate academic achievement and lack of resources due to impoverishment, are prevalent among specific racial demographic groups.

Homogenous Teacher Workforce The demographic makeup of public school educators does not match the growing diversity of the students they serve (Carr 2016). Currently, 75% of public school educators are female, and 82% are White (Carr 2016). Most teachers lack diversity training to prepare them to serve minority and low-income student populations (LadsonBillings 2004). Furthermore, there is an imbalanced distribution of diverse educators, whereby non-White teachers are more likely

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than Caucasian instructors to work in urban, low-income schools with high populations of minority students (U.S. Department of Education 2016).

Imbalanced Distribution of Resources African American students receive fewer services and lower quality resources than their White peers (Bailey and Dziko 2008). In addition, Black students are more likely than White students to have l­ow-quality instructors. Teachers who are assigned to work in schools with large African American student populations are frequently inexperienced, lack cultural competence, and do not possess the appropriate certifications in the subjects they teach (Bailey and Dziko 2008). Among high schools with student populations that have greater than 50% African American pupils, 25% of teachers do not possess a college degree or certification in the subject they teach. Among high schools with at least a 50% White student population, 8% of teachers lack a certification or degree in the subject they instruct (Coley 2011). Teachers’ lowered expectations of African American students result in the implementation of academic programs that lack adequate academic rigor (Bailey and Dziko 2008). Instruction over multiple and consecutive years by inexperienced educators causes students to academically lag behind their peers (Bailey and Dziko 2008). A significant racial disparity exists regarding high school graduation rates, whereby 81% of White students and 62% of Black students (52% of Black males) complete high school (“Black Male Graduation Rates” 2012; Coley 2011).

“Poverty” and “Low Income” Defined In the USA, “poverty” is defined as an annual income of $24,036 United States Dollars (USD) or less for a family of four (two adults and two children) (University of Wisconsin-Madison, n.d.). This yearly salary figure is modified based on the construct of family members and children. Twenty-two percent of American children

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under age 18 live in families in which the household total income is under the poverty threshold (“United States Demographics of LowIncome Children,” n.d.). In the USA, “low income” is defined as an annual salary of $48,016 USD or below for a family of four (two adults and two children) (“United States Demographics of LowIncome Children,” n.d.). “Low income” is approximately double the poverty rate. Approximately 51% of all public school students are low income (Bidwell 2016). Low-income students are more likely to attend schools where the majority of other students are also low income (Reed 2015). Schools are also categorized by their students’ poverty classification. In order to determine if schools are high, middle, middle-low, or low-poverty institutions, the percentage of students eligible for free or reduced-price lunch (FRPL) under the National School Lunch Program is considered (Institute of Education Sciences: National Center for Educational Statistics 2017). According to the Institute of Education Sciences’ National Center for Educational Statistics, “Highpoverty schools are defined as public schools where more than 75.0% of the students are eligible for FRPL, and mid-high poverty schools as those where 50.1 to 75.0% of the students are eligible for FRPL. Low-poverty schools are defined as public schools where 25.0% or less of the students are eligible for FRPL, and mid-low poverty schools as those where 25.1 to 50.0% of the students are eligible for FRPL” (2017). During the 2014–2015 school year, 24% of public students attended high-poverty schools and 20% attended low-poverty schools (Institute of Education Sciences: National Center for Educational Statistics 2017). Economic and racial segregation are closely connected. Black students are more likely to attend high-poverty schools than White students (Reed 2015). In the 2014–2015 school year, 29% of White and 7% of Black students attended low-poverty schools, whereas 8% of White students and 45% of Black students attended highpoverty schools (Institute of Education Sciences: National Center for Educational Statistics 2017).

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Impact of the Overrepresentation of African American Males in Special Education on the School-to-Prison Pipeline Background Although the USA is considered to be a world leader in the field of ­special education, many challenges persist in its equitable and consistent implementation (Rotatori et al. 2014). Racial, ethnic, and socioeconomic diversity is a unique challenge that many American schools face, and it has resulted in disparities in the resources and quality of special education services for various students. American public schools have a disproportionate number of Black males in special education, particularly those diagnosed with emotional behavior disorders and intellectual disabilities (Codrington and Fairchild 2012). Inappropriate and restrictive placements as well as inadequate instruction and services to these students lead to limited academic achievement and motivation. This instigates delinquency and expulsion and may lead to unlawful and criminal behaviors and eventual imprisonment (Codrington and Fairchild 2012). According to Codrington and Fairchild, “The overrepresentation of African Americans in special education is not merely an educational dilemma. It is a civil rights violation and a major culprit in the ‘school to prison pipeline’” (2012). Critics believe that the American school system embodies pervasive “institutional racism,” which is the prejudicial school structure and allocation of resources. Although segregation of students based on race is illegal, the disproportionate number of Black males in special education is indicative of discrimination and inequitable educational opportunity (Codrington and Fairchild 2012).

Overrepresentation of Black Males in Special Education While Black males consist of 9% of the total school population, they comprise 20% of the special education student population (National Education Association 2011). Their overrepresentation in special education

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is due to several factors, including culturally biased subjective assessments and evaluations, misinterpretation of cultural and racial differences as disabilities, and the lack of appropriate placement in the LRE (Hoover 2012; Blanchett 2006). Black males who receive special education services represent the population of students who are least likely to graduate from high school and attend college (National Education Association 2011). A multitude of factors induce the disproportionate placement of Black males in special education. One reason is the presence of “institutional racism” which, as mentioned previously, is prejudicial school structure and allocation of resources (Codrington and Fairchild 2012). Other factors include the referral, assessment, and special e­ducation service allocation motivated by subjective, culturally biased criteria. Black males are often presumed to be academically deficient. In addition, there is a lack of culturally relevant curricula utilized in the classroom to serve their academic needs. Teachers are inadequately prepared to properly assess students’ skill levels or consider cultural variations when they work with Black male students with special needs. Cultural differences are often misinterpreted as disabilities (Codrington and Fairchild 2012). In addition, Black students with disabilities are often assigned negative reputations as “defective” students, and general education teachers are eager to transfer these pupils from general to special education (Codrington and Fairchild 2012). The stigma associ­ ated with special education placement and disability diagnoses causes low self-esteem and lack of motivation. Inappropriate and insufficient special education services result in students’ lack of investment and engagement in the educational process, which prompts deviant social behaviors and overrepresentation in the juvenile detention system (Quinn et al. 2005).

Inadequate Special Education Services Black males are frequently provided with special education services in overly restrictive environments, whereby they are segregated and have limited access to general education opportunities (Tucker and Atkins 2013). The curricula are often unengaging and unchallenging, and

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instructors have lowered academic expectations (“Best Practices for Teaching African American Boys” 2012; Quinn et al. 2005). In addition, the classroom focus is often related to behavior management rather than academic achievement and critical thinking skills (“Best Practices for Teaching African American Boys” 2012).

Punitive Disciplinary Tactics The punitive manner in which schools respond to student misconduct as well as the racial disparities that exist in the implementation of discipline is alarming. Inadequate teacher training and preparation result in their insufficient classroom management skills (Oliver and Reschly 2007). While teacher education programs focus on theories of effective classroom and behavior management, they do not provide candidates with sufficient practice opportunities to apply concepts in real-life classroom settings. Teachers who lack comprehensive training frequently respond to disruptive classroom behavior by removing students from instruction through suspension and expulsion. As a result, these students receive less instruction time and are more likely to fall behind their peers and be referred for special education. Ineffective classroom management leads to excessive referrals to special education services. The school milieu, particularly in low-income urban institutions, often represents a prison-like atmosphere (Turner 2014). Law enforcement and security guards, as well as security checkpoints and metal detectors, may be present throughout the building, and police officers, rather than educators, are responsible to enforce discipline. Disparities based on race and disability exist in school disciplinary practices (Jackson and Beaundry 2012). Black students receive harsher punishments than their White peers for the same misdemeanor (Jackson and Beaundry 2012). Thirty-five percent of Black students and 15% of White students in grades 7–12 have been suspended or expelled at some point in their schooling (Coley 2011). In addition, Black students with disabilities are more likely to receive punishments that involve suspension or expulsion than their White general education peers. Students who are suspended are three times more likely to drop out of school

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by 10th grade than students who are never suspended (Jackson and Beaundry 2012). Furthermore, students who drop out are three times more likely to be imprisoned.

School-to-Prison Pipeline One of every 100 Americans (1%) is incarcerated, whereas almost 20% of Black males are incarcerated (Darling-Hammond 2010; “Criminal Justice Fact Sheet” 2013). Most prison inmates are high school dropouts, and 50% are illiterate (Darling-Hammond 2010). According to Linda Darling-Hammond, “States’ prisons are bursting at the seams, filled largely with dropouts and functionally illiterate young men who were victims of the state’s declining investments in education” (2010). Minority students with disabilities, especially Black males, are at the greatest risk of being victims of the school-to-prison pipeline (“Talking Points: The School-to-Prison Pipeline,” n.d.). Thirteen percent of public school children are identified as having disabilities, while 36% of prison inmates have disabilities (“Talking Points: The School-to-Prison Pipeline,” n.d.). The primary cause of the school-to-prison pipeline is the achievement gap between Black and White students (“Dismantling the School-to-Prison Pipeline,” n.d.). This is precipitated by Black males’ overrepresentation in special education, underrepresentation in gifted education, and disproportionate recommendation for grade retention. Only 38% of African American males graduate from high school in four years (“Dismantling the School-to-Prison Pipeline,” n.d.). The public views prison as a default special education placement for low-income and minority students and students with learning chal­ lenges (Quinn et al. 2005; “Talking Points: The School-to-Prison Pipeline,” n.d.). As a result, the incarceration of African American males with disabilities is four times higher than their White peers with disabilities (“Talking Points: The School-to-Prison Pipeline,” n.d.). Furthermore, most incarcerated Black males describe their ­ special education experiences as punitive and detrimental (Codrington and Fairchild 2012).

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Targeted Educational Needs and Solutions The following targeted educational objectives must be implemented: eliminate racial and social stigma, utilize culturally unbiased assessment tools, improve quality of special education services and instruction, and increase student morale, sense of belonging, and self-worth. Many of these goals can be initiated by educators. Teachers must embrace a greater cultural awareness in order to demonstrate a stronger understanding of their students’ backgrounds and support systems (Codrington and Fairchild 2012). More minority and male instructors must be encouraged to join the teaching force so that the racial and gender makeup of American students is matched by their educators (Codrington and Fairchild 2012). Teachers must utilize “culturally responsive pedagogy,” develop stronger rapports with their students and their families, and initiate their pupils’ commitment to school and learning (Darensbourg et al. 2010). Overall, instructors must utilize a holistic approach when analyzing and addressing their students’ needs (Darensbourg et al. 2010). The following resources must be implemented and augmented in schools with minority and low-income student populations: teacher diversity training, teacher education regarding disproportionality in special education, effective behavior and classroom management education, and programming that promotes graduation and college enrollment (Bailey and Dziko 2008; National Education Association 2007; “Black Male Graduation Rates” 2012). More resources must be allocated to schools with large African American populations in order to improve academic achievement, reduce unnecessary special education referrals, promote school attendance and high school graduation rates, and shrink participation in the school-to-prison pipeline.

100 Black Men of the Bay Area Community School Two American charter schools have been designed specifically to meet the needs of Black male students: 100 Black Men of the Bay Area Community School in Oakland, California (now defunct) and Urban Prep Charter Academy for Young Men in Chicago, Illinois.

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In Oakland, California, Black males achieve lower standardized test scores than all other subgroups (Tucker and Atkins 2013). In 2010, the African American Male Achievement Office was established, which made Oakland the first school district in the USA to create a program intended to improve outcomes of African American males (Tucker and Atkins 2013). The office hoped to target the distinct academic and social needs of this population, help Black males successfully manage their lives, provide compassionate, dedicated teachers and mentors, and eliminate suspension/expulsion by implementing alternative disciplinary practices. The office established a charter school, 100 Black Men of the Bay Area Community School in 2012 (Tucker and Atkins 2013). The school’s student population consisted of 100% Black males, grades kindergarten—8 (despite open enrollment for all racial groups) (Tucker and Atkins 2013). Most students were raised in single-parent/low-income households. Many were previously expelled or suspended and experienced lack of academic success in previous schools. High incidence of emotional trauma, which resulted in depression or post-traumatic stress disorder (PTSD), was also prevalent among students. Many were diagnosed with learning disabilities and/or emotional behavioral disorders. The school’s main objective was to improve the outcomes of vulnerable Black males at risk of academic failure and criminal activity through a variety of innovative methods (Tucker and Atkins 2013). According to the principal, “We’re going to create a culture that hopefully will be stronger than the streets.” Empathic adult support was a significant feature of the school, whereby most staff members were African American men. The school’s main academic goal stated that, by implementing a curriculum that focused on academics, social skills, college preparation, cultural awareness, and promotion of positive behavior, every student would be college-ready (Tucker and Atkins 2013). Disciplinary practices avoided suspensions and expulsions. Instead, students were referred to a “restorative justice room” where they discussed with a staff member their misdemeanor and its consequences as well as prevention strategies to implement in the future. Unfortunately, the school closed in January 2014 due to lack of government funding, and students returned to their local schools. Although the school expressed optimism that it would reopen in the near future, it remains shuttered (Tucker 2014).

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Urban Prep Charter Academy for Young Men Urban Prep Charter Academy for Young Men, founded in 2006, is a Chicago Public School system charter school (“Urban Prep Academic” 2012). The school serves 1000 Black male high school students in three locations. The admission process involves a random lottery, whereby neither test scores nor student disability are considered. Over 85% of students are considered low income or in poverty, and most students are several grade levels behind in core subject areas at the time of their enrollment. The student population of most Chicago secondary charter schools consists of approximately 14% of students with disabilities (Karp 2012). However, Urban Prep, which does not consider disability during its admission process, has a student population of 23% students with disabilities (Illinois Network of Charter Schools 2014). Urban Prep Charter Academy for Young Men encompasses a professional and respectful ambience, and its goal is to increase student success in academic, extracurricular, and community settings. It includes a rigorous college preparatory curriculum that focuses on the academic, social, and emotional needs of urban Black males. Urban Prep students complete two times the number of English and math courses than students who attend traditional Chicago public high schools, and they are provided with many hands-on and extracurricular learning experiences. For example, they are required to design and participate in a community service project each year, participate in college enrichment or internship programs every summer, and be in one school-sponsored extracurricular activity per year. The school’s greatest achievement is that, since its inception, 100% of Urban Prep graduates have been accepted to and enrolled in fouryear colleges, including its students with disabilities (“Urban Prep Academic” 2012). Its first graduating class completed college in 2014, and Chicago’s premier newspaper, The Chicago Tribune, provided a follow-up report regarding Urban Prep students’ collegiate successes in (Bowean 2014). According to their findings, however, most Urban Prep graduates who attend affluent schools far from Chicago experience more challenging adjustments and require more remedial academic support in order to succeed than their peers who attend regional, less rigorous institutions.

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Conclusion The evolving complexion of America’s diversity must be reflected in its educational system. It is imperative that educators, school systems, communities, and supporting governmental agencies respond to the cultural, ethnic, and racial constructs of their student populations by providing learning experiences that match the value and belief systems of the families they serve. By conveying a genuine understanding of and respect for the specific challenges of minority students, it is possible to lessen the educational gap that many children experience during their years in school. To engage students rather than alienate them, to celebrate their differences rather than force their compliance, and to build on their strengths rather than magnify their inadequacies, teachers have the opportunity to motivate rather than discourage. If these things are put into action, there will be fewer marginalized students who are disengaged from the learning process and fewer students who will embark on the hopeless and futile path through the school-to-prison pipeline. “We ought to approach the problem of children’s disobedience and disruptive behavior with the same imagination, intellect, and patience that we use, say, to close a business deal, find a cure for cancer, or land on Mars. We shouldn’t reserve for our children our least creative, least intelligent, and least controlled methods for solving problems.” —from Delivered from Distraction by Edward M. Hallowell, MD, and John J. Ratey, MD (2005)

References Antony, J. P. (2013). Segregation Hurts: Voices of Youth with Disabilities and Their Families in India. Rotterdam, The Netherlands: Sense Publishers. Retrieved from https://www.sensepublishers.com/media/1520-segregation-hurts.pdf. Aron, L., & Loprest, P. (2012). Disability and the Education System. The Future of Children, 2(1), 97–122.

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Bailey, M. H., & Dziko, T. M. (2008). Final Report: A Plan to Close the Achievement Gap for African American Students. Superintendent of Public Instruction. Retrieved from http://www.k12.wa.us/cisl/pubdocs/ aframer%20achgap%20rpt%20final.pdf. Best Practices for Teaching African American Boys. (2012, October 26). Knowledge Delivery Systems. Retrieved from https://www.youtube.com/ watch?v=DeUFhei81wg. Bidwell, A. (2016, January 16). Most Students Live in or Near Poverty. US News. Retrieved from http://www.usnews.com/news/blogs/data-mine/2015/ 01/16/most-us-students-come-from-low-income-families. Black Male Graduation Rates. (2012). The Urgency of Now. Retrieved from http://blackboysreport.org/national-summary/black-male-graduation-rates. Blanchett, W. J. (2006). Disproportionate Representation of African American Students in Special Education: Acknowledging the Role of White Privilege and Racism. Educational Researcher, 35(6), 24–28. Bowean, L. (2014, August 25). Where Are the First Graduates of Urban Prep. Chicago Tribune. Retrieved from http://www.chicagotribune.com/news/ ct-urban-prep-grads-update-met-0722-20140825-story.html#page=1. Carr, S. (2016, June 5). Tomorrow’s Test. Slate. Retrieved from http://www. slate.com/articles/life/tomorrows_test/2016/06/american_is_becoming_a_ majority_minority_nation_it_s_already_happened_in.html. Codrington, J., & Fairchild, H. H. (2012). Special Education and the MisEducation of African American Children: A Call to Action. The Association of Black Psychologists. Retrieved from http://www.abpsi.org/pdf/specialedpositionpaper021312.pdf. Coley, R. J. (2011). ETS’s Addressing Achievement Gaps Symposium: A Strong Start: Positioning Young Black Boys for Educational Success. Educational Testing Service. Retrieved from https://www.ets.org/s/sponsored_events/pdf/16818_BlackMale_trifold3_WEB.pdf. Criminal Justice Fact Sheet. (2013). NAACP. Retrieved from http://www. naacp.org/pages/criminal-justice-fact-sheet. Darensbourg, A., Perez, E., & Blake, J. J. (2010). African American Males in Exclusionary Discipline: The Role of School-Based Mental Health Professionals in Dismantling the School to Prison Pipeline. Journal of African American Males in Education, 1(3). Retrieved from http://journalofafricanamericanmales.com/wpcontent/uploads/downloads/2010/09/ Overrepresentation-of-African-American-Males-Alicia-Darensbourg-.pdf. Darling-Hammond, L. (2010). The Flat World and Education: How America’s Commitment to Equity Will Determine Our Future. New York: Teachers College Press.

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Dismantling the School-to-Prison Pipeline. (n.d.). NAACP Legal Defense and Educational Fund. Retrieved from http://www.naacpldf.org/files/publications/Dismantling_the_School_to_Prison_Pipeline.pdf. Griffith, M. (2015). The Progress of Education Reform: A Look at Funding for Students with Disabilities. Education Commission of the States, 16(1), 1–6. Hallowell, E. M., & Ratey, J. J. (2005). Delivered from Distraction. New York: Ballantine Books. Hardman, M. L., Drew, C. J., & Egan, M. W. (2014). Human Exceptionality: School, Community, and Family (11th ed.). Belmont, CA: Wadsworth Cengage Learning. Hoover, J. J. (2012). Reducing Unnecessary Referrals: Guidelines for Teachers of Diverse Learners. Exceptional Children, 44(4), 38–47. IDEA and the Special Education Process. (2011). Exceptional Children’s Assistance Center [ECAC]. Retrieved from http://www.directionservice.org/ cadre/parent/artifacts/ECAC1%20IDEA%20and%20the%20SPED%20 Process%20in%20NC2011.pdf. Illinois Network of Charter Schools. (2014). Urban Prep-West Campus. Retrieved from https://www.incschools.org/school/urban-prep-west-campus/. Information on Least Restrictive Environment: Special Education Rights and Responsibilities. (n.d.). Disability Rights California. Retrieved from http:// www.disabilityrightsca.org/pubs/504001Ch07.pdf. Institute of Education Sciences: National Center for Education Statistics. (2016). Family Characteristics of School-Age Children. The Condition of Education. Retrieved from http://nces.ed.gov/programs/coe/indicator_cce.asp. Institute of Education Sciences: National Center for Educational Statistics. (2017). Concentration of Public School Students Eligible for Free or ReducedPrice Lunch. U.S. Department of Education. Retrieved from https://nces. ed.gov/programs/coe/indicator_clb.asp. Jackson, J., & Beaundry, A. (2012). The Urgency of Now: The Schott 50 State Report on Public Education and Black Males. Schott Foundation for Public Education. Retrieved from http://blackboysreport.org/urgency-of-now.pdf. Karp, S. (2012, April 13). Chicago Charter Schools Struggle to Serve Special Education Students. Education Week. Retrieved from https://www.edweek. org/ew/articles/2012/04/13/28catalyst_charters.h31.html. Klein, R. (2015, September 5). In 10 Years, America’s Classrooms Are Going to Be Much More Diverse Than They Are Now. Huffington Post. Retrieved from http://www.huffingtonpost.in/entry/classroom-demographics-2025_n_7175760. Ladson-Billings, G. (2004). Preparing Teachers for Diversity. Wisconsin Center for Education Research. Retrieved from http://wcer.wisc.edu/news/coverStories/preparing_teachers_diversity.php.

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Mitchell, D. Morton, M., & Hornby, G. (2010). Review of the Literature on Individual Education Plans: Report to the New Zealand Ministry of Education. College of Education University of Canterbury. Retrieved from https:// ir.canterbury.ac.nz/bitstream/handle/10092/5766/12625188_LiteratureReview-Use-of-the-IEP.pdf;sequence=1. National Education Association. (2007). Truth in Labeling: Disproportionality in Special Education. Library of Congress Cataloging. Retrieved from http://www. nccrest.org/Exemplars/Disporportionality_Truth_In_Labeling.pdf. National Education Association. (2011). Race Against Time: Educating Black Boys. Focus on Blacks. Retrieved from http://www.nea.org/assets/docs/educatingblackboys11rev.pdf. Oliver, R. M., & Reschly, D. J. (2007). Effective Classroom Management: Teacher Preparation and Professional Development. National Comprehensive Center for Teacher Quality. Retrieved from http://files.eric.ed.gov/fulltext/ ED543769.pdf. Percentage Distribution of Children Ages 3–21 Served Under the Individuals with Disabilities Education Act (IDEA), Part B, By Disability Type: School Year 2013–14 [Graph Illustration]. (2016). Institute of Education Sciences: National Center for Education Statistics. Retrieved from https://nces.ed.gov/ programs/coe/indicator_cgg.asp. Percentage Distribution of Students Enrolled in Public Elementary and Secondary Schools, By Race/Ethnicity: Fall 2002, 2012, and 2024 [Graph Illustration]. (2016). Policy And Program Studies Service Office of Planning, Evaluation and Policy Development: U.S. Department of Education. Retrieved from https://www2.ed.gov/rschstat/eval/highered/racial-diversity/state-racial-diversity-workforce.pdf. Percentage Distribution of Students Enrolled in Public Elementary and Secondary Schools, By Race/Ethnicity: Fall 2003, Fall 2013, and Fall 2025 [Graph Illustration]. (2016). Institute of Education Sciences: National Center for Education Statistics. Retrieved from http://nces.ed.gov/pubs2016/2016144.pdf. Percentage, of Total Enrollment, of Children Ages 3–21 Served Under the Individuals with Disabilities Education Act (IDEA), Part B, By Race/ Ethnicity: School Year 2013–14 [Graph illustration]. (2016). Institute of Education Sciences: National Center for Education Statistics. Retrieved from https://nces.ed.gov/programs/coe/indicator_cgg.asp. Q & A on IDEA 2004: Purposes and Key Definitions. (2009). Center for Parent Information and Resources. Retrieved from http://www.parentcenterhub.org/repository/qa1/.

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Quinn, M. M., Rutherford, R. B., Leone, P. E., Osher, D. M., & Poirier, J. M. (2005). Youth with Disabilities in Juvenile Corrections: A National Survey. Exceptional Children, 71(3), 339–345. Retrieved from http://www.helpinggangyouth.com/disability-best_corrections_survey.pdf. Reed, J. (2015, May 13). A Closer Look at Income and Race Concentration in Public Schools. Urban Institute. Retrieved from http://www.urban.org/ features/closer-look-income-and-race-concentration-public-schools. Rotatori, A. F., Bakken, J. P., Burkhardt, S., Obiakor, F. E., & Sharma, U. (Eds.). (2014). Special Education International Perspectives: Practices Across the Globe. Bingley, UK: Emerald Group Publishing Limited. Siegel, L. M. (2009). Nolo’s IEP Guide: Learning Disabilities. Berkeley, CA: Nolo. Talking Points: The School-to-Prison Pipeline. (n.d.). American Civil Liberties Union. Retrieved from https://www.aclu.org/files/assets/stpp_talkingpoints. pdf. Tucker, J. (2014, February 22). Oakland School Serving Black Boys to Shut Down. San Francisco Chronicle. Retrieved from http://www.sfgate.com/ bayarea/article/Oakland-school-serving-black-boys-to-shut-down-5080082. php#photo-4946881. Tucker, J., & Atkins, L. (2013). Even Odds. San Francisco Chronicle. Retrieved from http://www.sfchronicle.com/local/bayarea/item/Even-Odds-Part-1-22785. php. Turner, D. T. (2014, May 14). Basing School Discipline on Conduct Instead of Skin Color: Two Illinois Bills Aim to Decrease Out-ofSchool Suspensions for Black and Latino Students. Chicago Tribune. Retrieved from http://articles.chicagotribune.com/2014-05-12/news/ ct-discipline-trice-met-0512-20140512_1_suspensions-discipline-cps. UNICEF. (2014). State of Teaching and Learning in the Special Education Setting in Barbados. Office for the Eastern Caribbean Area. Retrieved from https://www.unicef.org/easterncaribbean/ECAO_Quality_of_Teaching_ and_Learning.pdf. University of Wisconsin-Madison. (n.d.). How is Poverty Measured in the United States? Institute for Research on Poverty. Retrieved from http://www. irp.wisc.edu/faqs/faq2.htm. Urban Prep Academic. (2012). Urban Prep Academy. Retrieved from http:// www.urbanprep.org. U.S. Department of Education. (n.d.). Building the Legacy: IDEA 2004. Office of Special Education. Retrieved from http://idea.ed.gov/explore/home.

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U.S. Department of Education. (2007). A Guide to the Individualized Education Program. Retrieved from https://www2.ed.gov/parents/needs/ speced/iepguide/index.html?exp=0. U.S. Department of Education. (2010). Free Appropriate Public Education for Students with Disabilities: Requirements Under Section 504 of the Rehabilitation Act of 1973 Introduction. Office of Civil Rights. Retrieved from http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html. U.S. Department of Education. (2016). State of Racial Diversity in the Educator Workforce. Policy and Program Study Service Office of Planning, Evaluation, and Policy Development. Retrieved from https://www2.ed.gov/ rschstat/eval/highered/racial-diversity/state-racial-diversity-workforce.pdf. United States Demographics of Low-Income Children. (n.d.). National Center for Children in Poverty [NCCP]. Retrieved from http://www.nccp.org/profiles/US_profile_6.htm. Vinodrao, V. S. (2016). Benefits of Inclusive Education for Students with Intellectual Disabilities. International Journal of Education and Management Studies, 6(2), 186–189. What’s the Big Idea #2: 6 Principles of IDEA: Part 1. (n.d.). Parents Reaching Out. Retrieved from http://olms.cte.jhu.edu/olms2/data/ck/sites/271/files/ Parents_Reaching_Out.pdf. World Health Organization [WHO]. (2016). Disability and Health. Media Center. Retrieved from http://www.who.int/mediacentre/factsheets/fs352/en/.

5 Disability and Ukrainian Urban Space Galyna Korniyenko, Inna Kovalyshena and Dmytro Schebetyuk

Traditional Ukrainian Views About Disability In most traditional cultures, according to Mark Hrushevsky in “The Child in the Customs and Beliefs of the Ukrainian people” (1906), people with disabilities have been perceived as “at the margins,” not as complete human beings. At times, they have been considered to be representatives of supernatural forces that could benefit the community, but more often are seen as a source of hidden danger or the consequence of violation of rules or taboos (p. 210). Ukrainian traditional culture has been no exception. G. Korniyenko (*)  City and Regional Planning PhD Program, Knowlton School of Architecture, Ohio State University, Columbus, OH, USA e-mail: [email protected] I. Kovalyshena  Department of History, Ethnology and Law, Vinnitsa State Pedagogical University, Vinnytsia, Ukraine D. Schebetyuk  Dostupno.UA, Kiev, Ukraine © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_5

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For example, in her book The Human Body in Traditional Ukrainian Culture (2016), anthropologist Irina Ignatenko cites the belief that stillborn children or children with musculoskeletal defects were born because woman had intercourse with a fiery snake, a demon who feeds on female energy, like an incubus (p. 113). Hrushevsky mentions the belief that the child’s disability is a consequence of her parents’ violation of a taboo, such as the prohibition of sexual intercourse on certain days (mainly religious holidays of the Orthodox rite) or a pregnant woman’s performance of some forbidden kind of work (pp. 160–163). Those with disabilities may be considered “changelings”: If special protection rites have not been performed or a child has not been baptized, devils or other demonic beings will replace the human child with their own. These replaced children have specific physical flaws and strange behavior, such as capriciousness or its opposite, silence (Hrushevsky, pp. 208–212). Such beliefs are not unique to Ukraine; in Ireland, changelings children were attributed to elves, in Scandinavia to trolls, and in Russia to swamp demons. According to Volodymyr Kushpet, in “Eldership: Traveling Musicians in Ukraine in the Nineteenth and Early Twentieth Century” (2009), when people acquired disabilities during childhood or adulthood, it could be interpreted as punishment for sin and carried a substantial stigma. Or it could be interpreted as “bad luck,” in which case the person could receive compassionate help rather than facing complete exclusion from public space (pp. 131–133). Ukrainian culture had a tradition of “eldership,” an association of the blind or people with musculoskeletal disorders who could earn a living by traditional singing and/or begging. Such brotherhoods or workshops were self-organized and often respected in urban and rural spaces. They had their own laws, traditions, rituals, and even language (Kushpet, pp. 131–147, 25–26). The role of the “elders,” called the “kobzars,” was ambiguous in Ukrainian history. On the one hand, they were perceived objectively, as “cripple passers-by” who earned bread in a traditional Ukrainian way. On the other hand, kobzars symbolized Ukraine’s struggle for freedom, providing a reminder of the times of the Cossacks and the Ukrainian heroic epics. They were exclusively male.

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Women in traditional Ukrainian society had very few opportunities for self-realization, and a woman with a disability had even less than that. We have too little information about women with disabilities from villages and cities to make generalizations about their living situation. However, what we do know about a few female artists illustrates some of the challenges faced by the average Ukrainian woman with disabilities. The most famous is poet and playwright Larysa Kosach or Lesya Ukrainka (1871–1913), daughter of writer, publisher, and civil activist Olena Pchilka. Larysa had bone tuberculosis from childhood While her family made much effort for her treatment and rehabilitation, her letters indicate that her efforts to become independent (support herself, choose her own companions) were met with hostility. Maria Prymachenko (1908–1997), folk master of Ukrainian decorative painting, had childhood poliomyelitis. According to her memoirs, she began to paint because she could not work in the field with her family. Nevertheless, as a peasant with only four years of school, she spent much of her life as a forced laborer on a collective farm, her talent long unrecognized by her family and governmental bureaucracy. Summarizing the available information, we can say that some men and more rarely women with disabilities could sometimes find self-realization and respect from family and others by achieving a measure of economic independence; otherwise, they were regarded as a “burden” for their families. And they were often subject to a variety of traditions regarding them as pariahs, branded as dangerous because of their foreignness. As a result, they were for the most part excluded from public space.

Current Ukrainian Disability Rights Legislation and United Nations Conventions To understand Ukrainian regulations aiming to increase the accessibility of urban space for people with disabilities, one should keep in mind the structure of Ukrainian legislation. The main documents are the current Constitution amended by the Parliament to accord with international conventions and agreements. The Ukrainian Constitution is intended to

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guarantee equal rights for all citizens; there are no separate articles on the rights of people with disabilities. Relevant international documents include the United Nations Convention on the Rights of Persons with Disabilities (2006). It justifies the need to ensure access for persons with disabilities to health, education, and the physical, social, economic, and cultural environment; this includes the information needed to full enjoyment of all human rights and fundamental freedoms. This UN Convention on the Rights of Persons with Disabilities serves as an adjunct to the UN Convention on human rights. Ukraine ratified the UN Convention on the Rights of Persons with Disabilities on December 16, 2009. In the “General Remarks” in Article 9 “Accessibility,” the 2014 UN Committee on the Rights of Persons with Disabilities noted that one of the reasons for the “inaccessibility” of the built environment and transportation in many countries was the lack of mechanisms for monitoring and ensuring the implementation of accessibility legislation and standards. In 2015, the president of Ukraine signed a decree “On Enhancing the Work on the Rights of People with Disabilities”.1 In addition to the Constitution, there are laws passed by the Verkhovna Rada (Parliament) of Ukraine. The most pertinent is the “Law of Ukraine on the Rehabilitation of Disabled Persons in Ukraine” which, among other things, defines the terms “disability,” “a person with a disability,” and “removal of barriers.” The availability of public space for people with disabilities is governed by several laws and policies related to the built environment. “The Law of Ukraine on Regulation of Urban Development” outlines general requirements for planning and infrastructure development to guarantee the availability of space for all citizens. The goal of “The Law on Construction Standards” is to unify all building codes within the country, correcting unmodified obsolete standards, which customarily did not pay attention to the comfort of citizens with disabilities.

1http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=16336&LangID=E.

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“The Law of Ukraine on Architectural Activities” defines procedures for conducting expert evaluations of building structures; it is largely conservative and hindered by complicated bureaucratic practices. “The Law of Ukraine on Responsibility for Wrongdoing in the Sphere of Urban Development” regulates the extent of liability for wrongdoings, including penalties for non-compliance. “The Law of Ukraine on the Fundamentals of Social Security of Persons with Disabilities” is intended to protect the rights of people with disabilities and to create mechanisms for combating discrimination.

Current Building Norms and Their Implementation Building codes and regulations necessary for the comfort of people with disabilities, both in public and private buildings, are articulated in DBM (Derzhavni Budivelni Normy) V.2.2-17 (2006). This document sets requirements for structural design as well as land-plot features, parking arrangements, other constructions, and appropriate signage. These norms are, of course, imperfect. Sometimes they are obsolete holdovers from the Soviet era when the needs of people with disabilities were typically ignored and disabled people were mostly confined to their apartments and a way from eyes in the street. Nevertheless, in general, most norms are quite reasonable and practical. The biggest problem is lack of control over their implementation. There have been some attempts to create new systems for monitoring norm compliance, but they will work only if old systems of control are removed. A similar lack of enforcement is typical of other governmental decrees regarding the rights of the disabled. For example, conversations we conducted while doing research for this article included several statements that the organization responsible for medical examination of the disabled (MSEK) is considered the most closed and corrupted bureaucracy within the national healthcare system. One of the greatest achievements in the struggle for equality of people with disabilities is a law on inclusive education.2 Initiated by first 2http://zakon3.rada.gov.ua/laws/show/2053-19.

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lady, Maryna Poroshenko, this law aims to “ensure the accessibility of educational services for people with special educational needs,” including education in their place of residence. In addition, new legislation has changed the approach to the rehabilitation of people with disabilities.3 Previously, only two public authorities had the duty to oversee disability issues. Today, this duty extends to all executive authorities and local self-government bodies. However, it is still unclear how this will be implemented in practice. A similar law extends responsibility to other, non-governmental enterprises. Sanctions have been articulated for non-compliance; but again, enforcement is a problem.

Changing Attitude Toward Individuals with Disabilities and Their Integration into Urban Space According to the State Office of Statistics of Ukraine (ukrstat.gov.ua), in 2015, about 2.568 million people—6% of the population—had a disability. This was calculated from the data provided by the pension fund, which keeps track of the people who are receiving governmental support, including children. Within this category, 53% of persons of working age with disabilities are employed, which means every second person with disability has some kind of work.4 Despite these numbers, urban space in Ukraine continues to be largely inaccessible in spite of adopted legislation and building norms. People with disabilities are typically excluded from participation in transportation planning, which is highly technical. And there has been little research on this participation. As part of this larger research goal, we here present five stories based on interviews to identify what some people with disabilities, their families, and disability rights advocates think about government work on

3http://zakon2.rada.gov.ua/laws/show/z1111-12. 4Committee on the Rights of Persons with Disabilities. Report on Ukraine. https://documents-dds-ny.un.org/doc/UNDOC/GEN/G14/212/18/PDF/G1421218.pdf.

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urban space accessibility. Kim England (1994) mentions the dangers of appropriating the voices of “others” and representing yourself as an expert in their lives.5 Hence, two interviewees who have disabilities, Inna Kovalyshena and Dmytro Schebetyuk, were involved in the design and conduct of this research and as such are listed as co-authors. During the summer and fall of 2017, we conducted interviews of persons from the central Ukrainian cities Cherkasy, Kyiv, and Vinnytsia. The following records of these interviews have been edited for economy and coherence. This article was edited by Phyllis Bixler.

Stories of Five Disability Rights Activists in Ukraine Inna’s Story Inna Kovalyshena studies history and social anthropology at Vinnytsia University in Central Ukraine. She wrote the first section of this article, on Traditional Ukrainian Views about Disability. She is a strong advocate for the rights of people with disabilities. One of her recent accomplishments was achieving an accessible entrance to the Vinnitsa State Bank (Photo 5.1).

Inna States: In a post-Soviet country it is difficult to be a person with a disability. I was fortunate to have a relatively mild form of cerebral palsy. I could safely go to school, while most of the disabled were in home schooling. Nevertheless, for a long time I was not allowed in the kindergarten. Teachers were afraid of taking risks: “What if suddenly something happens to her and we will be responsible for that?” This fear is still a reason why inclusive education is slow to come in Ukraine. Also, parents

5England,

K. V. L. (February 01, 1994). Getting Personal: Reflexivity, Positionality, and Feminist Research. The Professional Geographer, 46, 1, 80–89.

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Photo 5.1  Inna at the entrance to the bank Photo by Inna Kovalyshena

of non-disabled children often have stereotypes that cause them to want children with disabilities to be segregated into separate classrooms. I myself do have some bright childhood memories of being in a segregated summer camp for the disabled. The idea of making a camp exclusively for children with disabilities now seems to me a bad one, a kind of ghetto that only deepens the alienation. But when I was a child, I perceived it differently. For example, during this camp, I learned to appreciate how my mother taught me to regard “Help me, please” as “normal” whereas some of my camp peers thought it shameful to ask for help. I see so many hostile attitudes toward people with disabilities. The medical commissions in charge of diagnosis and need for welfare support are Soviet in nature and completely corrupt. Urban space is not designed for people, and especially not for people with disabilities. Ramps are not present in state buildings in some cities, and Ukrainian roads are generally a sad story (Photo 5.2). I do see some changes, partly to accommodate the wounded soldiers coming back from war. Roads are being repaired and ramps built. Some areas have more comfortable pedestrian crossings and accommodations

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Photo 5.2  Ramp and stairs at “Khreschatyk City” Mall in Cherkasy Photo by Galyna Korniyenko

for public transport. These are still very small changes. Many people need not only material but also psychological help, and all reforms have not yet reached the outskirts of the provinces, villages, or even some neighborhoods in cities. But an understanding of the value of human dignity for all seems to have finally taken root in Ukrainian society.

Dmytro’s Story Dmytro Schebetyuk, another co-author of this chapter, lives in Kyiv and is an activist in the all-Ukrainian organization Dostupno. UA

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(Accessible Ukraine). He shares his story of working on accessible urban environments: This initiative started in November 2015 when I and a friend were enjoying a cold fall in Kyiv and decided to go to a sushi bar; but we realized there were three steps to get into the bar. I said, “I can do it, but it would be cool to have some kind of book to let people know beforehand if a place is accessible.” We started using Facebook to notify people about the accessibility of places. Our criteria are accessibility of entrance, bathroom, and other space; friendliness of the serving personnel; and overall atmosphere. We do not limit ourselves to recommended norms, but test the place itself. For example, doors are supposed to be 90 cm wide; but we can recommend a place even if the entrance is 80 cm. We will also record a 59 cm entrance and let people using wheelchairs decide if they have enough space. To advertise the accessibility of public urban spaces, we also make video blogs. For example, we show how to use a wheelchair in winter, how to travel by train, what to expect in various cities and places that people who have no physical disabilities might visit. Also, while we try to avoid “heroization,” we use empowering videos, such as a blog that gains attention not by the young woman’s disability but because of the beauty advice she offers (Photo 5.3). We want to make accessibility a trend by encouraging cafe or other owners to take the initiative in making their places accessible. Accordingly, we use soft power methods, avoiding legal threats and instead educating owners about the benefits of accessibility, which very often they have not considered. When appropriate changes are made, we offer stickers, saying “Accessible Ukraine Recommends.” Our organization also does assessments to help developers during construction. Again, we try to be motivational rather than judgmental. Sometimes, however, this does not work. For example, Sportlife recreational centers intentionally and explicitly discriminated against people in wheelchairs through their own written guidelines. So I had to fight for training space; and in two months they changed their rules (Photo 5.4).

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Photo 5.3  Dmytro Schebetyuk testing accessibility in Kyiv Photo provided by Dmytro Schebetyuk

Accessibility in the city context means that every member of society can move freely and have the same access to services. On the streets, people in wheelchairs need to be accepted as the norm rather than as the exception. Currently, pedestrians turn around or otherwise exhibit surprise when they see someone in a wheelchair. Clearly, much more needs to be done. Some parks have ramps and curb cuts, but not all of them are accessible for people like myself. Many places have to be redesigned. In some places, the quality of reconstruction is not acceptable. There might be a curb cut, but the asphalt is very old, and it does not support the new redesign. The movement to accommodate bicycles does help us. During the last three years, the number of wounded soldiers has called more attention to accessibility issues, including in mass media. In Kyiv last year, there were about five accessible metro stations, 137 accessible public buses as well as an app, “EasyWay,” providing information about entrances on specific routes. Nevertheless, our organization

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Photo 5.4  Example of a good ramp entrance in Kyiv Photo provided by D. Dmytro Schebetyuk

promotes the cities of Lviv and Vinnitsa as the most adaptable and progressive, and I observe Frankivsk and Bucha to be following in their footsteps. Active non-governmental organizations as well as city governmental leadership are crucial to change, though more attention needs to be paid to transparency in using available funds.

Anna’s Story Anna comes from the city of Cherkasy and now, funded by Fulbright, is earning a master’s degree in Counseling Psychology at Western Michigan University in Kalamazoo. Anna believes a lot has changed regarding disability rights during the last ten years of Ukrainian independence. As she has been an active advocate for twelve years, she has a wealth of experience to explain what works as well the kinds of resistance to expect. She has worked primarily at the city and regional level

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because Ukrainian laws and regulations adopted at the highest levels must be adapted to specific urban contexts. In addition, it is at the local level that advocates can actively work with government as well as monitor implementation. In their advocacy, Anna and her organization focus primarily on mobility impairment, partly because Anna herself uses a wheelchair, and partly because mobility impairment is typically more obvious to the general population, compared to other disabilities such as visual, cognitive, and hearing impairments. She describes this work thus: We like to come in at the initiation of a project and, after looking at the problem from different angles, articulate a program which contains not just words like ‘support’ or ‘help’, but also concrete statements and quantitative measures that allow us to monitor progress. We also organize round tables to describe the problem, suggest the solution, and explain how we can help solve it. We designed these procedures because we have experienced various ways in which our advocacy can be evaded. I remember how exhausted I was after working with regional organizations. I would tell them: “This is what we do in our city,” and they would reply: “You can do it in YOUR city, but it won’t happen in OUR town. We won’t even try because it just won’t happen.” Alternatively, they would implement activities that gained publicity, such as a one-day tour to Kyiv, but did little to affect the daily lives of people with disabilities. Only after three trainings we conducted did this regional organization change its strategy. As part of a partnership with Poland, they now travel there to see how things are done. They know how to apply for grant funding and how to work in a more sustainable way. Consistency is very important. An advocacy project that lasts less than year is not an advocacy project. Another way progress can be circumvented is by inviting an advocate to be part of a program but then essentially ignoring their advice. I worked for several months at MSEK, the governmental organization in charge of medical assessment of individuals with disabilities and awarding appropriate support. I found the institution very disorganized and not transparent. It was not clear how money was used, with money sometimes being spent on lavish internal celebrations. The head of the organization was authoritarian and unavailable. For months I was not

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Photo 5.5  A small tactile copy of Palace for Marriage in Cherkasy with Braille for blind citizens Photo provided by Alyona Gordienko

able to meet with him to discuss plans for needed changes. When I confronted him at the New Year’s party; he told me: “Anna, go to work. When I need you I will call you.” “I realized that he thought he had bought my reputation rather than my advice. I left the next day and wrote him a long letter explaining that I would not play the role of advocacy person to pretend how transparent organization is. This organization meant to serve people with disabilities was inaccessible not only in its working processes, but physically as well. Its building had very narrow corridors that two people could hardly fit in, not to mention people in wheelchairs. To get inside the building, people had to wait outside and get permission to enter.” The majority of educational institutions in Ukraine are not accessible for blind or visually impaired students. There is no special signage to navigate the buildings and no one teaches a new student how to navigate the campus. The educational materials and computer technology are still not adapted for students with visual impairments (Photo 5.5). It is important to realize that how society treats people with disabilities is part of the overall culture. The majority of people in Ukraine do

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not deal with disability and, at first contact with an affected person, do not know how to react, or what to say; therefore, they rely on stereotypes. Some religious people come up to me and say: “God loves you,” even though I did not invite conversation. An acquaintance of mine who has a physical disability left home the first time and was given money because people thought he was a beggar. He didn’t leave his home again for a year! He told me, “People thought I left home to beg for money, that I am poor. But I do not want people to see me this way.” “It is also important how a person with disability sees her/himself. If such a person is fairly self-confident and does not experience a self-pity, then it does not much matter what people say to them. On the other hand, some practice denial, for example, coming to a psychological counselor and talking about everything but disability. This is sometimes called ‘disability blindness’, similar to color blindness.” Despite many obstacles, my organization has had many positive results. We lobbied for the purchase of buses with European standards for accessibility, for example. Streets now have curb cuts; medical institutions and governmental buildings now have ramps. Overall, our city has much improved accessibility compared to how it looked before.

Oksana’s Story Oksana lives in Cherkasy, where she works for the non-governmental organization Sunny Children, which advocates for children with Down syndrome. As mother of a son with this syndrome, she is very much aware of the special problems such children face in achieving mobility and, ultimately, independence: The suburban areas of our city do not have sidewalks, so most people walk in the middle of the road. My son Maksym is very stressed out when cars pass by; intent on his own trajectory, he does not understand that he has to give space for the car to pass; he panics and almost falls to the ground. If a street has separate sidewalks, he is far more confident. Nevertheless, I am afraid to let him navigate the city independently. He knows all the bus routes and how to use them to visit his grandmother.

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But I am afraid of how he might react to some sudden, possibly dangerous event, such as a car moving too close to the sidewalk. Most of the changes I have noticed in my city are related to physical disabilities, such as ramps and curb cuts. Although I have found playgrounds in Vynnitsa and Kyiv with areas designed for children with cognitive impairments, I have not found them in Cherkasy. The swings are too high, for instance, and he is too heavy for me to lift him into them. I believe one reason that more appropriate adaptions have not been made for people like my son is the lack of cooperation among nongovernmental organizations working on disability rights. In Cherkasy, my organization, Sunny Children, has rarely been invited to “all-disability” events. The main problem for children with Down syndrome is social adaptation. Because we believe that inclusive education can help immensely, Sunny Children has had a prime focus on this issue. This year three children with Down syndrome were able to attend regular public school and thus study with kids who do not have cognitive impairments. Three years ago it was not possible. The ultimate goal is for people with Down syndrome to live independently. I believe that this will be possible for these children in ten years.

Anatoly’s Story Anatoly lives in Kyiv. He is blind and works as a massage and rehabilitation therapist. He also trains as a runner for the Paralympic triathlon competition and along with three other men created a Guide Runner organization, which trains people with visual impairments to swim as well as run. Members have trained several triathlon winners, and Guide Runners have received requests to open similar clubs in Dnipro, Zaporizhzhia, and Kharkiv (Photo 5.6). The Guide Runners’ organization succeeded in getting a USAID grant to buy special navigational equipment, but unfortunately, one of the persons who applied for the grant left the group and took much of the equipment with him. When Anatoly teaches groups of

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Photo 5.6  Photo of Anatoly running with a guide in Kyiv Photo by Anna Gorelova via Facebook

people navigational skills, at no charge, some of the fifty-dollar canes he uses are frequently stolen. He cites these as examples of how difficult it is to sustain non-profit activities if equipment has been purchased. He also shares his own personal experience navigating Kyiv: I am able to enter buses and trollies with my guide dog, but I have found that workers at metro stations would not allow this. When I complained, some of my visually impaired friends told me not to make the employee angry. They thought I just wanted to get attention. I disagreed and said I make this scandal public because it is in the interest of you and many others. The attitude toward guide dogs and people with disabilities generally has to change. A major problem is that there are no organizations in Ukraine training dogs to assist the blind. There are some people who want to open such a facility in Vyshhorod, a suburb of Kyiv; and there is a definitely a need. If there is no organization that can train and certify dogs, I cannot prove that my dog should be able to accompany me everywhere. It’s like a closed circle.

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To navigate the city, I rely on some mobile applications, such as FourSquare and BlindSquare; but the latter is too expensive for me and not in Ukrainian, which I would prefer. I would estimate accessibility in Kyiv to be as low as 5%. I think Lviv is more accessible; they have a lot of audio traffic lights, little copies of famous buildings, and some Braille plates. In Kyiv, it is difficult for me to navigate the sidewalks because of a lack tactile surfaces, audio signals at the traffic lights, and recordings of stops on the buses. In addition, one must cope with obstacles such as uncut tree branches, unexpected stalls in the middle of the path, cars illegally parked on the sidewalk. Many such obstacles are on the level of my face; I once broke my glasses because I collided with an advertisement board, a frequent obstacle at the entrance of supermarkets.

Photo 5.7  Photo of Anatoly and the Guide Runner team Photo provided by Anatoly

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I was happy to cooperate with a new project called “The Zoo at the Touch,” which allows people get to know some animals by touching them. We are working with the zookeepers on Braille plates and audio descriptions. It is sad that the majority of such projects are launched not by the government, but by philanthropists and individuals entities, like with the zoo. It is also sad that governmental regulations for architecture and accessibility are not enforced. I can see changes but they are very slow and not consistent (Photo 5.7).

Conclusion At present, Ukraine’s urban space cannot be described as fully accessible for people with disabilities. There are many reasons for this. Social stigmas typical of traditional societies still exist. Also still present are the effects of Soviet disempowerment and even dehumanization of its population; surviving laws from this era are often foolish or even harmful. In addition, more recent and progressive laws and legislated norms have not been adequately put into effect, partly because governmental agencies in charge of such changes often lack transparency and/or are actively corrupt. Thus, progress has often depended on initiatives by individuals working through a large number of non-governmental organizations, often without noticeable help of the state. Such non-governmental initiatives have been mentioned by the previous stories of advocates. These stories also illustrate that while there is still a long way to go, there have been some important changes that forecast a brighter future. Changing attitudes are reflected in movements toward the inclusive education needed to prepare children with disabilities for a more independent future—as well as to foster greater acceptance by the rest of society. Also, increasingly visible are urban changes to make it easier for persons with disabilities to live and move about as equal members of society. It is to be hoped that the future holds many more such changes.

6 School Interventions for the Social Inclusion of School-Age Learners on the Autism Spectrum: Review of the Evidence and Future Areas of Inquiry Sofia Mavropoulou

Introduction An increase in the number of individuals (1 in 88 children) identified with an autism spectrum condition (ASC)1 has been well documented (Centers for Disease Control and Prevention 2012). Considering that the majority of children with ASC have intellectual ability in the normal range, we should expect that a rising proportion of children with ASC will be educated in inclusive classrooms.

1Following

Baron-Cohen et al. (2009), the term “autistic spectrum condition” (instead of autism spectrum disorder) has been adopted in this chapter to indicate a less stigmatizing conceptualization of autism which reflects that individuals on the autism spectrum do not only have disabilities but also areas of cognitive strength.

S. Mavropoulou (*)  School of Early Childhood and Inclusive Education, Faculty of Education, Queensland University of Technology, Brisbane, QLD, Australia e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_6

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Despite their academic strengths, school-aged boys and girls with ASC appear to have persisting difficulties in social ­ communication, which explain their social isolation and higher rates of exclusion from inclusive schools compared to their peers with typical development (Dean et al. 2014; Kasari et al. 2011; Locke et al. 2010). This could be one of the reasons that the number of students with autism moving to special education from general education is growing (Lilley 2015). It has to be noted, though, that there is a proportion (20%) of (preschool) children with ASC who have reciprocal relationships in school and engage with their classmates in recess; these positive findings imply that school interventions may not be necessary for all students on the autism spectrum (Chang et al. 2016). Social skills are included as intervention goals in a large number of individualized education plans (IEPs) (Ruble et al. 2010). For example, in Australia the development and implementation of social skills programs in and out of school has been recognized as a high priority for the education of children with autism in general education settings (Australian Advisory Board on Autism Spectrum Disorders 2010). Nevertheless, the persistent difficulties of learners with ASC in social communication present a complex picture, comprising of a puzzling combination of strengths and weaknesses which require individualized, targeted, and flexible interventions in natural settings (Kasari and Patterson 2012). The aims of this chapter are twofold: (a) to present the main findings of high-quality research reviews evaluating the existing e­vidence on the effectiveness of school-based interventions targeting the social capabilities of students with autism and (b) to discuss and examine the evidence from social skills programs delivered in the school context across three age groups and education settings (preschool, elementary, and secondary) from an inclusive lens, which foregrounds a whole-school approach, by assigning special role to ­teachers and peers for achieving long-lasting social outcomes for students with autism.

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Summative Evidence from Research Reviews Considering the extensive literature on social skills programs and the significant benefits of these interventions for students with ASC in inclusive schools (Bellini et al. 2007; Rao et al. 2008; White et al. 2007), there is a growing number of high-quality publications reviewing this line of research and addressing a number of serious issues concerning the methodological rigor of these studies with important implications for their applicability in real-life settings. Bellini et al. (2007) reviewed 52 single-case studies published between 1986 and 2005 which included 157 participants with ASC who received school-based social skills interventions. Their metaanalysis revealed a questionable intervention effect (n = 52, PND M = 70%, range = 17–100%), moderate maintenance effects (n = 25, PND M =  80%), and low generalization effects (n = 15, PND M = 53%). Interestingly, interventions (n = 27) delivered in the child’s typical classroom had moderate outcomes and maintenance effects and low generalization effects, whereas pullout interventions (n = 20) had low to questionable gains and maintenance effects and very low generalization effects. Therefore, the natural setting of the classroom appeared to have superior influence compared to the pullout settings, although the most common intervention applied was to pull out the student with autism from his/her classroom. Kasari and Patterson (2012) reviewed research on interventions in the area of social difficulties published from 2010 to 2012 and observed that the largest majority of children with ASC—with minimal verbal communication, ethnically and culturally diverse, non-English speaking children, and children with comorbid conditions—are underrepresented in research and underserved in intervention. Furthermore, they concluded that although interventions have a positive impact on increasing knowledge and concept formation (i.e., theory of mind) in children with autism, they have not demonstrated transfer of skills to authentic community settings. To this end, they suggested that combining “didactic knowledge modules with practice modules” (p. 721) in real-life settings could be a way to support the generalization of conceptual skills to naturally occurring social interactions.

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Hansen et al. (2014) conducted a meta-analysis of 16 single-subject studies published between 2005 and 2012 which were implemented in inclusive schools with preschool (aged 3–6 years) children with ASD. Of the 12 studies completed in the classroom, interventions were carried out in a variety of settings (center time, recess, outside play, free play, circle time, and lunch). However, the majority (50%) of interventions were delivered by researchers compared to only half of them (24%) delivered by teachers. In Whalon et al.’s (2015) review of 37 studies conducted in school settings targeting peer-related social competence of 105 children (aged 3–12 years) with autism, peer-mediated instruction was found to bring out positive outcomes on the social competence of children with ASD and, therefore, has been supported as an evidence-based practice. In agreement with other reviews, the authors concluded that in the majority of studies, the interventions were delivered by researchers or with teachers as assistants. They also highlighted the need to conduct research in authentic settings with peers and teachers in an effort to identify the practical issues associated with the implementation of interventions in those environments. Following the presentation of the main findings from the ­aforementioned reviews, it is evident that the role of teachers and the context of the intervention determine the potential for the generalization of acquired social skills in naturally occurring social interactions. This comment echoes the interesting paradox conceived by Kasari and Smith (2017); although the intervention goals are related to the improvement of a child’s behaviors at school, the intervention is conducted in another context and not in the school context. It is indeed quite problematic and limiting to deliver social skills interventions for children with autism in an off-campus, non-school, clinic-based context. This poses a serious limitation which prevents generalization of skills to school and community settings and also the application of school-based approaches involving teachers and peers (Bellini et al. 2007; Rao et al. 2008). Furthermore, Kasari et al. (2016) offered two insightful e­ xplanations for the limited effects in the school context of social skills group interventions conducted away from school. The first reason is practical:

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These groups have a mixed composition, including children from ­different schools and communities, and therefore, it is not so easy for the children to sustain their friendships in their school context, following the completion of the intervention. The second reason, which is more critical, is that there may be a mismatch between the child’s needs in the school environment and the skills targeted in the intervention. In addition, Kasari and Smith (2017) identified a critical gap between research and implementation since a large portion of students with ASC in public schools is excluded from the evidence base under the name of homogeneity in sampling. Hence, it is quite uncommon to find non-verbal, non-English speaking children with complex behavioral and learning profiles in the autism spectrum participating in schoolbased interventions. This fact can explain the limited applicability of research findings to students with ASC who are educated in inclusive schools. This creates a knowledge base which is based on an atypical student population within the autism spectrum and may explain the low applicability of an intervention for school-aged children with ASC in real classrooms. In the following section, the evidence on social skills school-based interventions across different age groups (preschool children, school-age students, and adolescents) with ASC will be presented and discussed. The selected studies have been implemented by teachers or peers in the children’s classrooms in inclusive schools.

A Closer Look at the Empirical Evidence Preschool Age Kaale et al. (2012) reported positive outcomes of a randomized controlled trial (RCT) of a manualized intervention, targeting joint attention and joint engagement, delivered by preschool teachers to 34 children with ASC in mainstream schools over a period of eight weeks. Children in the intervention group participated in oneon-one sessions twice a week with their trained teachers. Children who received the intervention were almost five times more likely to initiate

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joint-attention skills during preschool play with their teachers than children with ASC in the control group. Interestingly, no change was observed in the joint engagement of children in the intervention group. In another study by Lawton and Kasari (2012), children with ASC were found to have gains in initiated joint attention during classroom observations of an intervention (JASPER) delivered by teachers in public preschool classrooms. This study is significant because the intervention fidelity was rigorously measured using classroom observations and audio recordings of the teaching sessions and demonstrated that teachers consistently used JASPER strategies during classroom observation as well as in taped play interactions.

Middle Childhood Kasari et al. (2012) conducted a large-scale RCT to compare the efficacy of school-based interventions (child-assisted and peer-mediated) to promote social salience and peer engagement of 60 fully included children with autism, between the ages of 6 and 11 years, who were enrolled in 30 different schools, in 56 classrooms in the USA. The intervention was delivered by trained research staff who met with the children with ASC during recess or lunchtime for 20 minutes twice a week for six weeks (12 sessions in total). The outcome measure was the number of peer connections from a peer social network measure. The children with ASC who were trained by their peers had more connections with social groups at school, were less isolated in the playground, and received more friend nominations, than children who did not receive any intervention from their peers. The effect size was found to be high (d = 0.79) for the peer intervention. More importantly, these changes were persistent at three months following the completion of the intervention. This finding confirmed the high value of engaging peers from the children’s classrooms in the research procedure. The disadvantage of the intervention was that it was implemented by researchers and therefore not sustainable by teachers in those schools. Kasari et al. (2012) underline that future researchers should work with teachers who can deliver the interventions to maximize the

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generalization and the intensity of the intervention. Although it is an important finding that peers helped children with ASD become less isolated, it was not sufficient for improving all areas of their engagement in the playground. This means that there is a strong need for more comprehensive interventions targeting play behaviors in contexts beyond the classroom. Kasari et al. (2016) implemented a large RCT with 137 children with ASC between the ages of 6 and 11 years. They compared the social network connections and peer engagement on the playground in two groups (one composed of children with ASC from different classes and another group including children with ASC and children with typical development from the same classes) following two interventions. One group received a didactic, direct instruction intervention (SKILLS intervention), and the other group received a naturalistic intervention based on shared activities (ENGAGE intervention). Both interventions lasted 16 sessions taking place during morning or lunchtime recess. In the ENGAGE group, children with ASC were grouped with 2–3 classmates who were selected on the basis of the information collected from the friendship survey and teacher nominations. However, all interventions were carried out by graduate student researchers and research assistants trained in the two approaches. Surprisingly, children with ASC in the SKILLS group had greater improvement in peer acceptance and engagement on the school playground than children in the ENGAGE group. This study has shown that direct instruction in a homogeneous group of children with ASC can develop greater peer engagement in the playground than an indirect approach which utilizes activities based on shared interests for mixed groups of children from the same classrooms. For a deeper interpretation of these findings, the researchers suggest that interviews with children should be included as another means to explore peer relationships following this type of interventions. Therefore, it seems that exploring “student voice” could be an important avenue of future enquiry which could further inform the application of genuine inclusive practices (Ainscow and Messiou 2018). It is worthy to note that Kasari et al. (2016) asserted that “a more cost-effective and real-world approach would be to train school staff to implement the interventions for potentially greater benefit” (p. 177). This was deemed

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as an appropriate strategy for overcoming the challenges and hurdles in conducting school-based research with external interventionists. Koegel et al. (2012) conducted a study with three children with autism (aged between 9 and 12 years) by setting up structured social clubs based on their preferred interests. The social club activities were carried out during free play sessions in the children’s mainstream schools and were facilitated by undergraduate university students. It is noteworthy that participation in those social clubs was totally voluntary for all children. The analysis of observed sessions showed that the participating children with ASC increased their social engagement and their verbal initiations during their engagement with their preferred activities and their interaction with peers. Also, this study highlighted the use of methods which are less costly and intrusive and can be applied in an inclusive setting. One of the researchers’ recommendations is that school staff or peers can be guided to facilitate these social club activities enhancing the social inclusion of students with autism. Wolfberg and her colleagues (2015) implemented the Integrated Playgroup Group (IPG) intervention with 48 children with autism (5–10 years) who played with their typically developing peers (2 children with ASC and 3 peers) in 24 sessions over 12 weeks. The intervention took place during after-school programs and was delivered by IPG guides in designated playrooms within the public-school premises. The children with ASC showed significant gains in symbolic play and social play following the intervention, which were maintained and generalized to the non-intervention setting involving unsupported play with unfamiliar peers. Once again, it would be worthwhile to explore whether teachers could be trained to apply the IPG model in their school curriculum to maximize play opportunities for children with ASC in their inclusive classrooms. Beaumont et al. (2015) conducted a school-based intervention with 69 children with autism (aged 7–12 years) and trained 18 school staff members (special education teachers, guidance officers, learning support teachers, and classroom teachers) in Australia. Participants were allocated to two conditions: Condition 1 involved the manualized 10-session variant (90 minutes per session) of the full Secret Agent Society Program delivered in a small structured group intervention, and

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condition 2 involved the delivery of the Secret Agent Society Computer Game Pack by program facilitators “as they saw fit,” together with the existing social skills training programs by school staff. The findings showed that children in condition 1 had higher social-emotional and behavioral gains than children in condition 2 and also their improvements seemed to generalize to the home environment.

Adolescence As the number of students with autism in high school settings is increasing and they report difficulties in maintaining engagement and building friendships with their peers (Knott et al. 2006), there is a need to develop and implement interventions targeting school-based social skills for this age group, as well. However, there is a paucity of research evidence in this area. Hughes et al. (2013) guided high school students in general education settings in building opportunities for interaction with their classmates with autism in their classrooms. In contrast to other peer-mediated research, a self-management paradigm was applied in this study, where general education students (partners) were trained to set their goals for interaction on a daily basis with students with autism and to decide on how to interact and record the frequency of their interactions in elective classes with their paired peer with autism. Also, partners did not receive any feedback or prompting from the researchers or the teaching staff. An interesting aspect of this study is that one of the three participants had severe autism, intellectual disability, and limited speech, as opposed to relevant research where participants with Asperger syndrome have participated. This strategy holds promise as it does not require much time and peer partners could be guided by teachers or paraprofessionals. Another study by Koegel et al. (2013) has documented that incorporating the preferred interests (i.e., computing, cooking, sports, movies, and video games) of seven adolescents with autism in social activities run by clubs which were taking place during lunchtime either in regular education classrooms or in other spaces in the outside area of the school grounds can have positive outcomes in their engagement and initiations

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to their peers. Although the researchers did not collect generalization and maintenance data, this intervention seems to be a fruitful modification of extracurricular activities offered in inclusive high schools. Plavnick et al. (2015) implemented an intervention using videobased group instruction (VGI) with four adolescents with autism and intellectual disability attending a “center-based” program supporting them to obtain a certificate of completion from high school. For the purposes of the intervention, they trained a teacher with postgraduate qualifications in special education and autism. The intervention took place in their classroom, and the generalization sessions were observed in the lounge area where these students would take breaks during the school day. The findings of the study showed that VGI has the potential for developing social behaviors (i.e., accessing preferred stimuli, showing social awareness, and obtaining social attention) as part of the daily educational program within a public-school setting. The researchers have taken note of the need to refine and modify the VGI intervention procedures for this group of students with autism taught in this educational setting, considering the successful outcomes for three out of four participants and the mixed findings on the generalization of skills. They also stressed that it may be impractical to provide intensive coaching and support to the teacher during future applications of the intervention before the wider adoption of the intervention in these school settings. Laugeson et al. (2014) evaluated the effectiveness of a manualized, school-based, teacher-facilitated, social skills intervention for adolescents with autism and without intellectual disabilities. The intervention was carried over 14 weeks in a non-public-school setting during a pre-determined social skills lesson and was delivered by the participants’ primary teachers in their classrooms. They also used teacher assistants for monitoring treatment fidelity, although this strategy may have undermined the procedural integrity of the intervention. Overall the findings of this study demonstrated significant gains in social responsiveness as reported by teachers and parental ratings showed that the adolescents receiving the PEERS intervention had lower social anxiety than those in the group receiving the other social skills intervention. The researchers used additional quantitative measures by asking the adolescent participants to self-report on the quality of their friendships

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and their social skills knowledge. Adolescents reported a higher number of invited and hosted gatherings with their best friends. However, using reports from active participants of the study to measure the effectiveness of the intervention can pose threats to the validity of the findings.

Mapping the Orientation of Future Enquiry Following the discussion of the empirical evidence in the previous sections, it has become evident that research in schools for children with ASC remains scarce and there are a number of issues to be considered for further investigation. As Lawton and Kasari (2012) have underlined, there is a paucity of research on teacher-delivered interventions on the core difficulties of individuals with ASC while published teacherimplemented interventions present methodological flaws, especially in measuring teacher fidelity. There is a strong need to create a solid knowledge base on whether and how educational programs in public general schools can enhance the social competencies of children with ASC. The replication of interventions in real-life school contexts coupled with behavioral observations of social behaviors in these settings is an imperative step, following the rigorous experimental control and analysis of structured interventions aimed to develop social skills to be exhibited in children’s natural social environments. Kasari and Smith (2017) have proposed community-partnered participatory research (CPPR) as a promising strategy for increasing the feasibility, acceptability, and adaptation of interventions for the setting in which they will take place. This approach entails strong partnership and close collaboration between schools and researchers across all phases of research (design, development, implementation, and dissemination) and increases the sustainability of the intervention after the completion of the intervention. They also propose CPPR as an important step to increase the possibility for meaningful child outcomes following the implementation of interventions with strong empirical basis. As a research orientation, conducting research in schools and communities entails several advantages for the participants, the researchers, and

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the school staff (Hansen et al. 2014; Plavnick et al. 2015). School attendance carries the potential to increase the intensity of the intervention over the school year. Besides, students are taught in the same general environment where they will be required to apply the target skills. Also, the school setting offers better opportunities for bringing together teachers and peers without having to set up arrangements after school or on weekends. This point relates to the recommendation by Camargo et al. (2014) for educators to plan interventions which will be implemented in multiple general education settings (i.e., classroom, playground, and cafeteria). Laugeson et al. (2014) emphasized that “by utilizing teachers as social skills interventionists in the classroom, we increase the opportunity to provide social coaching in a natural setting through teachable moments, possibly promoting greater maintenance of treatment gains over time” (p. 2253). Another possible significant carryover effect of this approach is the development of teachers’ knowledge and capacity in transferring these skills to other students with similar needs in the social domain. Inclusion carries a huge potential to benefit children with ASC in terms of their social relationships and engagement with peers and participation in their school communities. But as yet, we do not have sufficient knowledge on how to support children with autism in their school contexts. As Damschroder et al. (2009) point out “one explanation of why so many of these initiatives fail centers on the failure to change less tangible organizational assumptions, thinking, or culture” (p. 8). A good starting point might be to reflect on our inclusive culture and revisit the essential purpose of school communities as places of acceptance, founded on the value of respect for diversity and enriched via collaborative partnerships between teachers and researchers.

References Australian Advisory Board on Autism Spectrum Disorders. (2010). Education and Autism Spectrum Disorders in Australia. The Provision of Appropriate Educational Services for School-Age Students with Autism Spectrum Disorders. Retrieved from http://www.autismadvisoryboard.org.au/uploads/file/pdfs/ Education%20Position%20Paper%20Final%202010%20Final.pdf.

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Ainscow, M., & Messiou, K. (2018). Engaging with the Views of Students to Promote Inclusion in Education. Journal of Educational Change, 19, 1–17. https://doi.org/10.1007/s10833-017-9312-1. Baron-Cohen, S., Scott, F., Allison, C., Williams, J., Bolton, P., Matthews, F., et al. (2009). Prevalence of Autism-Spectrum Conditions: UK School-Based Population Study. The British Journal of Psychiatry, 194, 500–509. https:// doi.org/10.1192/bjp.bp.108.059345. Beaumont, R., Rotolone, C., & Sofronoff, K. (2015). The Secret Agent Society Social Skills Program for Children with High Functioning Autism Spectrum Disorders: A Comparison of Two School Variants. Psychology in the Schools, 52, 390–402. https://doi.org/10.1002/pits.21831. Bellini, S., Peters, J. K., Benner, L., & Hopf, A. (2007). A Meta-Analysis of School-Based Social Skills Interventions for Children with Autism Spectrum Disorders. Remedial and Special Education, 28, 153–162. Camargo, S. P. H., Rispoli, M., Ganz, J., Hong, E. R., Davis, H., & Mason, R. (2014). A Review of the Quality of Behaviourally-Based Intervention Research to Improve Social Interaction Skills of Children with ASD in Inclusive Settings. Journal of Autism and Developmental Disorders, 44, 2096–2116. Centers for Disease Control and Prevention. (2012). Autism and Developmental Disabilities Monitoring Network. Retrieved from http://www. cdc.gov/ncbddd/autism/addm.html. Chang, Y. C., Shih, W., & Kasari, W. (2016). Friendships in Preschool Children with Autism Spectrum Disorder: What Holds Them Back, Child Characteristics or Teacher Behaviour? Autism, 20, 65–74. https://doi. org/10.1177/1362361314567761. Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Jeffery, A. A., & Lowery, J. C. (2009). Fostering Implementation of Health Services Research Findings into Practice: A Consolidated Framework for Advancing Implementation Science. Implementation Science, 14, 50. https://doi. org/10.1186/1748-5908-4-50. Dean, M., Kasari, C., Shih, W., Frankel, F., Whitney, R., Landa, R., et al. (2014). The Peer Relationships of Girls with ASD at School: Comparison to Boys and Girls with and Without ASD. Journal of Child Psychology and Psychiatry, 55, 1218–1225. https://doi.org/10.1111/jcpp.12242. Hansen, S. G., Blakely, A. W., Dolata, J. K., Raulston, T., & Machalicek, W. (2014). Children with Autism in the Inclusive Preschool Classroom: A Systematic Review of Single-Subject Design Interventions on Social Communication Skills. Review Journal of Autism and Developmental Disorders, 1, 192–206.

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Hughes, C., Harvey, M., Cosgriff, J., Reilly, C., Heilingoetter, J., Brigham, N., et al. (2013). A Peer-Delivered Social Interaction Intervention for High School Students with Autism. Research & Practice for Persons with Severe Disabilities, 38, 1–16. Kaale, A., Smith, L., & Sponheim, E. (2012). A Randomized Controlled Trial of Preschool-Based Joint Attention Intervention for Children with Autism. Journal of Child Psychology and Psychiatry, 53, 97–105. https://doi. org/10.1111/j.1469-7610.2011.02450x. Kasari, C., Locke, J., Gulsrud, A., & Rotheram-Fuller, E. (2011). Social Networks and Friendships at School: Comparing Children with and Without ASD. Journal of Autism and Developmental Disorders, 41, 533–544. Kasari, C., & Patterson, S. (2012). Interventions Addressing Social Impairment in Autism. Current Psychiatry Reports, 14, 713–725. https://doi. org/10.1007/s11920-012-0317-4. Kasari, C., Rotheram-Fuller, E., Locke, J., & Gulsrud, A. (2012). Making the Connection: Randomized Controlled Trial of Social Skills at School for Children with Autism Spectrum Disorders. The Journal of Child Psychology and Psychiatry, 53, 431–439. https://doi. org/10.1111/j.1469-7610.2011.02493x. Kasari, C., Shire, S., Factor, R., & McCracken, C. (2014). Psychosocial Treatments for Individuals with Autism Spectrum Disorder Across the Lifespan: New Developments and Underlying Mechanisms. Current Psychiatry Reports, 16, 512. https://doi.org/10.1007/s11920-014-0512-6. Kasari, C., Dean, M., Kretzman, M., Shih, W., Orlich, F., Whitney, R., et al. (2016). Children with Autism Spectrum Disorder and Social Skills Groups at School: A Randomized Trial Comparing Intervention Approach and Peer Composition. Journal of Child Psychology and Psychiatry, 57, 171–179. https://doi.org/10.1111/jcpp.12460. Kasari, C., & Smith, T. (2017). Interventions in Schools for Children with Autism Spectrum Disorder: Methods and Recommendations. Autism, 17(3), 254–267. Knott, F., Dunlop, A. W., & Mackay, T. (2006). Living with ASD: How Do Children and Their Parents Assess Their Difficulties with Social Interaction and Understanding? Autism, 10, 609–617. Koegel, L. K., Vernon, T. W., Koegel, R. L., Koegel, B. L., & Paullin, A. W. (2012). Improving Social Engagement and Initiations Between Children with Autism Spectrum Disorder and Their Peers in Inclusive Settings. Journal of Positive Behavior Interventions, 14, 220–227.

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Koegel, R., Kim, S., Koegel, L., & Schwartzman, B. (2013). Improving Socialization for High School Students with ASD by Using Their Preferred Interests. Journal of Autism and Developmental Disorders, 43, 2121–2134. https://doi.org/10.1007/s10803-013-1765-3. Laugeson, E., Ellingen, R., Sanderson, J., Tucci, L., & Bates, S. (2014). The ABC’s of Teaching Social Skills to Adolescents with Autism Spectrum Disorder in the Classroom: The UCLA PEERS, Program. Journal of Autism and Developmental Disorders, 44, 2244–2256. https://doi.org/10.1007/ s10803-014-2108-8. Lawton, K., & Kasari, C. (2012). Teacher-Implemented Joint Attention Intervention: Pilot Randomized Controlled Study for Preschoolers with Autism. Journal of Consulting and Clinical Psychology, 80, 687–693. https:// doi.org/10.1037/a0028506. Lilley, R. (2015). Trading Places: Autism Inclusion Disorder and School Change. International Journal of Inclusive Education, 19, 379–396. https:// doi.org/10.1080/13603116.2014.935813. Locke, H. J., Ishijima, E. H., Kasari, C., & London, N. (2010). Loneliness, Friendship Quality and the Social Networks of Adolescents with High-Functioning Autism in an Inclusive School Setting. Journal of Research in Special Educational Needs, 10, 74–81. https://doi. org/10.1111/j.1471-3802.2010.01148.x. Plavnick, J. B., Kaid, T., & Macfarland, M. C. (2015). Effects of a SchoolBased Social Skills Training Program for Adolescents with Autism Spectrum disorder and Intellectual Disability. Journal of Autism and Developmental Disorders, 42, 2674–2690. https://doi.org/10.1007/s10803-015-2434-5. Rao, P. A., Beidel, D. C., & Murray, M. J. (2008). Social Skills Interventions for Children with Asperger’s Syndrome or High-Functioning Autism: A Review and Recommendations. Journal of Autism and Developmental Disorders, 38, 353–361. https://doi.org/10.1007/s10803-007-0402-4. Ruble, L. A., McGrew, J., Dalrymple, N., & Jung, L. A. (2010). Examining the Quality of IEPs for Young Children with Autism. Journal of Autism and Developmental Disorders, 40,  1459–1470. https://doi.org/10.1007/ s10803-010-1003-1. Whalon, K. J., Conroy, M. A., Martinez, J. R., & Werch, B. L. (2015). SchoolBased Peer-Related Social Competence Interventions for Children with Autism Spectrum Disorder: A Meta-Analysis and Descriptive Review of Single Case Research Design Studies. Journal of Autism and Developmental Disorders, 45, 1513–1531.

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White, S., Keonig, K., & Scahill, L. (2007). Social Skills Development in Children with Autism Spectrum Disorders: A Review of Intervention Research. Journal of Autism and Developmental Disorders, 13, 1858–1868. Wolfberg, P., DeWitt, M., Young, G. S., & Nguyen, T. (2015). Integrated Play Groups: Promoting Symbolic Play and Social Engagement with Typical Peers in Children with ASD Across Settings. Journal of Autism and Developmental Disorders, 48, 830–845.

7 The Role of Non-formal Learning Environments in Education and Socialization of Children with Visual Disability: The Case of Museums Vassilios Argyropoulos and Charikleia Kanari

Introduction Educational policies and initiatives toward an inclusive society have become more and more intensive in the last decades. Although the social demand for an inclusive society does not refer only to individuals with disabilities, the issue of inclusion and the opportunities for equal participation to all sectors of social life for individuals with disabilities has been a topic of many discussions, policies, conventions, legislation, and relevant practices. Among these sectors of social life, education and culture have a critical role (UNESCO 1994; UN 2006). The aforementioned initiatives and social changes as for example the adoption of the social model of disability which underlines the barriers of the society for people with disabilities (Oliver 1990) had an important impact on issues of access and equal participation of children with disabilities to education and culture in many countries around the world. V. Argyropoulos (*) · C. Kanari  Department of Special Education, University of Thessaly, Volos, Greece e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_7

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In Greece, for example, recent legislation [Law 3699/2008, a­rticle 2(4)] supports students with disabilities and special educational needs to reach their full potential at all levels and types of education within which they are enrolled (i.e., pre-school, primary, secondary, t­ertiary, non-formal, informal, and lifelong education). The development of educational policies aims to promote inclusive education bridging the gap between inclusive policy and practice (Law 2817/2000, 3699/2008). Indeed, during the last few years more and more children with disabilities attend general educational settings (Strogilos et al. 2017). The majority of students with visual disability attend primary or secondary education either in resource rooms/pullout programs or in co-taught classrooms with in-class support of Special Education Teachers (SET) (Law 3699/2008). Also, there are legislative provisions and instructions for the specific needs of children with visual disability as for example braille literacy, skills related with independent living, orientation and mobility, etc. Teachers are encouraged to promote the participation of children with visual disability in the curriculum as well as in all aspects of school life including extracurricular activities coupled with an intense cultural character such as organized museum visits (Law 3699/2008; YPEPTH 2004). Teachers are urged to use various resources of information not only in school but also in places out of school in order to enrich the educational process of various subjects and to promote the notion of an open school to society. In this framework, school visits in museums—among other places—are considered “as part of the organization of the cultural dimension of the educational process” and as “an integral part of the annual plan of educational work at class and school level” (FEK, B/945/7-9-1998). A great number of museums in Greece, in order to respond to their educational and social role during the last decades, developed a wide range of activities as for example educational programs for school groups including educational programs for children with disabilities (Nikonanou 2010; Kanari and Vemi 2012). In the latter case, usually museums adapt their educational programs for students with disabilities from special schools or in collaboration with various associations. The adaptations depend on the characteristics and needs of each group. In case of children with visual disability, museums seek to provide access through touch depending on

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museum objects or replicas that are available for touch, access to information through braille, and so on (Kanari and Vemi 2012). Although the aforementioned initiatives and practices seem to be in the right direction toward the access and inclusion of children with disabilities in education and cultural centers such as museums, there are still many difficulties and gaps between theory and practice. At educational level, some of the obstacles that hinder the development of an inclusive practice and ethos are the following: (a) segregated practices which take place in mainstream schools such as resource rooms/ pullout programs (Fyssa and Vlachou 2015), (b) difficulties in collaboration between SET and mainstream education teachers (Strogilos et al. 2012), (c) lack of a systematic educational policy regarding teacher training (e.g., differentiated instruction) (Strogilos et al. 2017), (d) the “centralized” character of the Greek educational system (Strogilos 2012), and (e) barriers due to bureaucratic inflexibility instead of promoting more professionalization, higher specialization, and reduction of influences of centralization. At museum level, it seems that there are many differences among museums regarding the level of access, the type of access facilitations or the systematic character of relevant activities (Nakou 2010). It is worth mentioning that there are good examples of museum educational programs for children with visual disability (see, e.g., Argyropoulos et al. 2017; Georgaka and Gavalas 2015; Gotsis 2004; Pini 2004) but it seems that many museums still face difficulties to organize differentiated educational material and activities in order to include in their “target groups” also individuals with visual disability (Kanari and Argyropoulos 2014). Furthermore, it seems that there is still emphasis on “special groups” in terms of impairments (Spandagou 2011) and lack or limited research about how museums respond to the different needs and characteristics of school groups when these groups consist of children with and without visual disability. Speaking about educational and cultural centers and relevant activities and programs in formal and non-formal learning environments respectively, many researchers have tracked down significant features such as: (a) aspects of the dynamic and multidimensional educational and social role of museums (Black 2005; Hooper-Greenhill et al. 2000; HooperGreenhill 2007; Sandell 2002); (b) qualitative characteristics of learning

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in museums (Hein 1998; Hooper-Greenhill 2007); (c) range of generic learning and social outcomes within museums (Hansen 2014; HooperGreenhill 2007); (d) the importance of school visits in museums for all children including those with disabilities or/and special educational needs (Hooper-Greenhill 2007; Golding 2012; Pearson and Aloysius 1994); (e) collaboration between mainstream schools and museums (Argyropoulos et al. 2016; Rosenberg et al. 2003); and (f) teachers’ influencing role in building and achieving robust relationships between children and museums (Griffin 2007; Vemi and Kanari 2008). Taking into account the aforementioned features and the importance of providing rich learning and social experiences to children with visual disability, we argue that there is a need to investigate the SET’ perceptions about how school visits in museums can contribute to the education of children including the domains of the expanded core curriculum (Allman and Lewis 2014). The present chapter is based on literature review and on data stemmed from a research which was conducted in Greece exploring SET’ perceptions of the interaction between schools and museums and the potential benefits for children with visual disability regarding the development of their social skills as well as their educational and social inclusion. The research data and the results may refer to the Greek context but we strongly believe that they may have a wider interest regarding the role of non-formal learning environments for the achievement of common objectives in the education and socialization of children with visual disability.

Literature Review and Related Theories The investigation of the potential contribution of visits in museums to the education and social inclusion of children with visual disability is based on a theoretical framework which is structured according to the following axes: (a) the characteristics of learning in museums, (b) the relationship between individuals with visual disability and museums, and (c) the relationship between museums and schools and the benefits of learning within museums. Museums by definition are public institutions “in service of society” with an important educational and social role (ICOM Statutes 2007).

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During the second half and especially during the last decades of the twentieth century, many changes have taken place within museums adopting an “audience centered” approach (Black 2005; Vergo 1989) and “moving” to the development of an “inclusive museum” (Coxall 2006). In this framework, many researchers have studied issues of the process of learning in museums. The main characteristic of this learning is the very concept of the experience. According to Hooper-Greenhill (2006): Learning in the museum is multidimensional. One of the reasons for the power of this learning is that in museums, learning is based on the experience; it is performative. Through acting, doing, performing, the deepest learning occurs […] through experience, feelings become engaged and response is direct apprehending the experience and the related knowledge in an immediate and sensory way. (p. 241)

Museums constitute non-formal learning environments and encompass characteristics, which differ significantly from those of the school learning environment. Such differences may refer to: the absence of a national curriculum and formal assessment systems, the absence of conditions of compulsory attendance, the conjunction of learning and entertainment, the experiential learning, etc. (Hein 1998; HooperGreenhill 2007; Nikonanou 2010). From this point of view, museum learning environment is not competitive and as Hooper-Greenhill (2007, pp. 4–5) states “learning in museums is potentially more openended, more individually directed, more susceptible to multiple diverse responses than in sites of formal education, where what is taught is directed by externally established standards.” Based on the above, the expected learning outcomes in the museums are not limited only to information or knowledge regarding the museum collections (Hooper-Greenhill 2006). The generic learning outcomes (GLOs) as they have been defined in the relevant literature refer to a wide range of outcomes such as “knowledge and understanding, skills, attitudes and values, enjoyment, inspiration, creativity and activity behavior and progression” (Hooper-Greenhill 2007, pp. 53–57). Visiting a museum is also a social experience. The social dimension of the experience which is created in a museum has been

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a topic of relevant studies along with other aspects or components of museum experience. Falk and Dierking (1992, 2000) explored the characteristics of museum experience and discussed the “interactive nature” of museum experience and underscored the significant role of different interactive contexts which influence and “shape” the so-called museum experience. These contexts are the personal context (i.e., the expectations, interests, motivations, prior knowledge and experiences of each person), the social context (i.e., social interaction or mediation of other people within a group, the museum staff or other people) and the physical context (i.e., the space of the museum, orientation, the exhibits, etc.) (Falk and Dierking 1992). The aforementioned issues are in the heart of intensive discussions about how museums can reach their audiences and provide opportunities for meaningful learning and social experiences to different people. Considering that museums are also lifelong learning environments where people can always visit during their life (O’Brien and Candlin 2001), many researchers have stressed the positive impact for all people especially for those who may have difficulties in adapting to formal learning environments or for those who may be at risk of social exclusion (Hooper-Greenhill et al. 2000; Hooper-Greenhill 2006, 2007; Tranter and Palin 2004). Relevant studies have pinpointed the dynamic and potential role of museums to the enhancement of social inclusion (Hooper-Greenhill et al. 2000; Dodd and Sandell 2001b; Sandell 2002). Museums are expected to act as “catalysts for positive social change” (Hooper-Greenhill et al. 2000, p. 23) and to contribute to social inclusion in different ways and at different levels: (a) personal level (e.g., development of different skills, motivation, self esteem, etc.), (b) community level (e.g., empowerment of communities), and (c) societal level (e.g., exhibitions and activities which may contribute to the combating of prejudices and discriminations) (Dodd and Sandell 2001a; Sandell 2002). Hence, Special Education and Museum Education seem to be interrelated domains, which lead to a field of interdisciplinary research discussing issues relevant to education, types of learning outcomes, and dimensions of social inclusion. During the last decades, museums seek to develop a wide range of activities in order to communicate and establish relationships with

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different audiences removing barriers and building bridges (Black 2005; Dodd and Sandell 1998). Many events and major legislative changes took place toward people with disabilities aiming at an inclusive society. These changes refer to: • • • •

museums regarding their differentiated educational and social role, relevant legislation against discrimination in many countries, conventions for the rights of people with disabilities (UN 2006), adoption of the social model of disability which stresses issues of barriers and limitations of the society (Oliver 1990).

All the above had a strong impact on museums for the ­development of access facilitations (Moussouri 2007; Sandell and Dodd 2010). Speaking about museums and individuals with visual disability, although partially sighted people do not rely exclusively on touch, many researchers have defined a basic and fundamental contradiction between museums—defined as places where touch is not allowed—and individuals with visual disability (see, e.g., Argyropoulos and Kanari 2015; Candlin 2004; Hetherington 2000, 2003; Spandagou 2011). Museums in order to overcome the aforementioned contradiction mainly regarding sensory barriers have developed a variety of activities and facilitations for individuals—adults or children—with visual disability (e.g., touch collections, touch guided tours, educational programs for students or adults with visual disability, use of tactile material, verbal descriptions, etc.), (see, e.g., Axel and Levent 2003; Ginley 2013). However, it seems that people with visual disability still face many barriers to museums (Argyropoulos and Kanari 2011, 2015; EBU 2012; Weisen 2008). Among these barriers is the lack of awareness or misunderstandings regarding the heterogeneity of people with visual disability (Candlin 2003; De Coster and Loots 2004; Hayhoe 2013), the temporary character of many initiatives for blind visitors in museums (e.g., touch exhibitions) (Candlin 2003; Tsitouri 2005), attitudinal barriers (Candlin 2003; Weisen 2008), the limited choices in terms of exhibits (Weisen 2008), the lack of accessible Web sites or the lack of publicity (EBU 2012; Weisen 2008), etc. In addition, it seems that due to lack of permanent access facilitations in many museums people with visual

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disability face many difficulties if they want to visit them spontaneously and not participating in “special” programs which are organized especially for individuals with visual disability (Argyropoulos and Kanari 2011, 2015; Boussaid 2004). For this reason, many researchers have stressed the importance of using a variety of accessibility facilitations and programs in museums in order to respond to different characteristics and interests of individuals with visual disability who want to visit and have fun with friends and family members (e.g., alongside sighed persons) or as independent visitors (Reich et al. 2011). It is argued that permanent access facilitations and/or appropriately incorporated multisensory, kinesthetic tactics in museums may enhance access and inclusion of individuals with visual disability with multiple benefits for all people (Argyropoulos and Kanari 2015; Candlin 2003; Weisen 2008). In case of school groups, these are traditionally among the most important audiences of museums. Many researchers have studied aspects of the relationship between museums and schools and they have highlighted the multiple benefits of visits in museums for all children including those with disabilities. These benefits are related to a variety of learning outcomes, such as knowledge, skills, and attitudes, as well as to issues of social inclusion (see, e.g., Golding 2012; HooperGreenhill 2006, 2007; Kanari et al. 2017; Pearson and Aloysious 1994; Spandagou 2011). In addition, relevant literature stresses the important and crucial role of teachers in acting as “mediators” between children and museums (Griffin 2007; Nikonanou 2010; Vemi and Kanari 2008). At the same time, an interest in creating networks between schools and museums has shown up, and various forms of cooperation have been developed (Argyropoulos et al. 2017; Kanari and Argyropoulos 2014; Pearson and Aloysious 1994; Rosenberg et al. 2003). Teachers of children with visual disability have recognized very early that museums such as art or natural history museums could provide great opportunities to their students because they are allowed to explore through touch various objects and understand different concepts (Levent et al. 2013; Hayhoe 2013). It seems that museums have the capacity to engage and educate all children since they can work in parallel with teachers on a various curriculum subjects such as history (Arter et al. 1997), language (Arter 1997), mathematics and physics (Clamp 1997; Minett 1997),

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arts and culture (Armstrong 2003; Brooks and Brooks 1997; McNear 2000) aiming at the development of creativity, imagination and social or/and academic skills (Armstrong 2003; McNear 2000). School visits in museums can contribute to aspects of social interaction which according to Sacks (2014) includes a number of social skills that children with visual disability need to develop as for example: the awareness of other people, the notion of self-identity, communication and cooperative skills, interaction with other people, good manners, friendships, etc. In brief, children with visual disability need some assistance to find their place in the social world and develop a sense of autonomy learning how to interact. For this reason, teachers and family members occupy a crucial role to encourage the development of social skills throughout blind children’s lives not only in formal educational contexts but also in other places such as museums (Sacks 2014; Sacks and Silberman 2000). According to Hooper-Greenhill (2007), visits in museums constitute an ideal place to interact because it can enhance the development of social skills such as working in teams, communicating with other people or developing relationships. The following study investigates SET’ perceptions regarding the actual and potential contribution of school visits in museums for the development of social skills by children with visual disability. The underpinning of this study is an evidence-based platform consisting of: (a) the importance of social skills for the children with visual disability, (b) the learning outcomes in the museum which encompass social skills (Hooper-Greenhill 2007), (c) the social dimension of the museum experience (Falk and Dierking 1992), and (d) the facilitating role of teachers in building up relationship between children and museums.

Methodology The research has been conducted in Greece and the participants were SET who were working in Primary Education supporting children with visual disability in different educational settings. A mixed method approach (i.e., quantitative and qualitative) was adopted to analyze and interpret the obtained data. The present study—as mentioned

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above—focuses on the SET’ perceptions regarding the actual and potential contribution of school visits in museums for the development of social skills by children with visual disability.

Research Questions The research questions were the following: a. Do school visits to museums contribute to the development of social skills by children with visual disability? b. Is it possible to identify any type of social skills, which may be used and enhanced during school visits to museums by children with visual disability? c. Are there any specific conditions that have to be taken place in museums in order to facilitate the development of social skills by children with visual disability?

Participants Forty-three SET participated in this study. All SET were working in Primary Education supporting children with visual disability in different areas in Greece and in different educational settings (i.e., special schools for the blind, resource rooms, and co-taught classrooms). The majority of the participants (46.5%, Ν = 20/43) were supporting children with visual disability in co-taught classrooms. Seventeen SET were working in special schools (39.5%, Ν = 17/43) and six of them were supporting children with visual disability in resource rooms (14%, Ν = 6/43). Participants were selected from (a) the lists of the Hellenic Ministry of Education, Research and Religious Affairs regarding the educational settings for Special Education, (b) associations of SET, and (c) associations of parents of children with visual disability. All participants were informed about the aims of the research and it was certified their anonymity.

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Data Collection and Analysis The research data were obtained via questionnaires and semi-structured interviews (Cohen and Manion 1994). Questionnaires and semistructured interviews are often used together in mixed method studies investigating educational assessment or teachers’ and students’ perspectives (e.g., Lai and Waltman 2008). Questionnaires can provide evidence of patterns and/or trends among large populations whereas, qualitative interview data often gather more in-depth insights into participant attitudes, thoughts, and actions (e.g. Holstein and Gubrium 1997). The questionnaire included mainly closed questions with answers rated on a 5-point Likert-type scale and comprised four thematic areas: (a) experiences from school museum visits, (b) use of museum educational material, (c) collaboration between schools and museums, and (d) the role of museums in the education of children with visual disability. The researchers got a return rate of 65.15% out of 66 questionnaires distributed and the final number of the participants in the end was 43. After the first analysis of the data from the questionnaires—via SPSS-PASW Statistics 18 Software—semi-structured interviews were conducted with 15 SET. Three criteria were applied for the selection of the interviewees: (a) to fill in the questionnaire, (b) to have experience from museum visits with students who had visual disability, and (c) to work at different educational settings. The researchers adopted the method of content analysis to elaborate the qualitative data stemmed from the interviews (Dey 1993) and in turn in order to reassure the reliability of the qualitative data the authors worked together and the final concordance of agreement (interrater reliability) was P0 = 0.93 (Robson 1997). Finally, a code system was adopted for the participants; that is, (a) code “SETSS” for Special Education Teacher in Special School, (b) code “SETcTC” for Special Education Teacher in co-Taught Classroom, and (c) code “SETRR” for Special Education Teacher in Resource Room.

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Results First Research Question Regarding the first research question, the analysis of the quantitative data from the questionnaires revealed that the majority of SET believed that museums have the capacity to contribute to the development of social skills by students with visual disability. Based on the results, there was a high positive response regarding the museums’ positive impact on the development of blind students’ social skills (86% responded positively, 30.2% “agreed moderately” and 55.8% “agreed strongly”). The aforementioned quantitative results were confirmed by the qualitative data, which stemmed from the semi-structured interviews. SET expressed the opinion that the educational activities, which take place in the museums, may contribute to the development of social skills by children with visual disability. However, there were SET who expressed some concerns and reservations about the potential contribution of visits in museums for the development of social skills by children with visual disability: Yes, I think that museums may contribute to the development of social skills… there are many challenges of working in a group and to my knowledge this usually brings smiles and enthusiasm. (SETSS2) I am not sure…it depends on the whole organization of the visit in the museum. The first time we visited a museum with my student was a very negative experience and he asked me to go out of the museum. (SETcTC6)

Second Research Question The second research question was about the type of social skills, which may have been developed by children with visual disability during the visits in the museums. Based on the obtained quantitative data, it was revealed that SET believed that students could easily and spontaneously develop behavioral skills pertinent to communication and cooperation (see Table 7.1):

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Based on the qualitative data, which were obtained from the i­nterviews, it was revealed that SET did not observe any particular behavioral skills in children with visual disability during museum school visits. Some relevant extracts are provided below: In school children learn how to participate in a dialogue. For example to give time to other children to talk, not to interrupt them, etc. It is not certain if children can follow these rules out of school, for example in a museum. I think visits in museums can help to this social skill. (SETRR) The children are encouraged to communicate, to ask questions or to ask for assistance as for example how to get more explanations by a museum member …Yes, I think it is very important and at the same time challenging….. (SETSS2) In the museum, you can see how children interact with others, with people that they don’t know. They participate in various activities and they express their feelings or opinions. Usually, in school they don’t express so easily their opinions…in the museum they feel free because it is like a game. (SETcTC8)

Regarding the category “cooperative skills,” teachers mentioned the significance of being a member of a team and the active role that children adopt in order to participate in the activities of the team. For example: Table 7.1  SET’ perceptions about social skills which can be developed within museums by children with visual disability Categories

Subcategories

Communication skills

Participation in dialogue Learning the rules of a dialogue Respect to the interlocutor Asking questions Expression of their own ideas Expression of their emotions Ask and receive help and assistance

Cooperative skills Behavior in public spaces

Working in groups Enrichment of experiences Learning the rules of behavior in places like museums Respect for the museum as space Respect for other visitors in the museum

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Children participate in activities where they have to collaborate with other children. This is very important, because they learn to work and interact with others. (SETcTC1)

SET reported also that visits in museums constitute new social experiences in public places and stressed the importance of developing good manners and appropriate behavior: A museum is a not ordinary place where children learn how to behave. It is place with social rules, for example they learn not to talk loudly, they learn to respect the place, keep it clean, and so on. (SETcT1) They learn to be among other people, to respect the other visitors in the museum. (SETRR3) Children with visual disability often have limited social experiences. For many of them going out of the house means going to the park. When we visit a museum they learn that not all places are “parks”. It is very important to provide opportunities to children with visual disability to be in such places. (SETSS2)

It is worth mentioning that SET was supporting children with visual disability in general educational settings mentioned the impact of social interaction within museums regarding the development of self-confidence, the equality with the other sighted children in the group and the great satisfaction of being involved in the same activities with sighed children: My student was more “open” to the other children with more self-confidence. He participated in the same activities with the other children and that was very good. He felt equal and it was great! (SETcT5)

Third Research Question Regarding the third research question, based on the results of the interviews all participants reported that the development of social skills by children with visual disability requires specific conditions, which

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are related to: (a) practices within museums and (b) practices within schools (see Table 7.2): More specific, all SET’ opinions converged at a basic condition when they commented on students with visual disability pertinent to social skills and museums. According to them, this condition is related to issues of accessibility; in other words, access to the content and the exhibits of the museums. SET reported very often negative experiences mainly when students with visual disability had no access to the exhibits: …You know the rest of the kids – the sighted ones - were talking enthusiastically about the exhibits but my student had no clue of what was happening. Her classmates were so overwhelmed. …she couldn’t express her opinion and she was very disappointed and frustrated. (SETcTC8) All the exhibits were in display cases, behind glass. He was listening to my descriptions but he was very passive and I think he got very bored. (SETcT5)

SET also reported the lack of museum differentiated educational programs. They brought up many examples that highlighted the necessity of such programs in conjunction with their students’ negative emotions and frustrations:

Table 7.2  SET’ perceptions about the conditions for the development of social skills for children with visual disability in museums Categories

Subcategories

Practices in museums

• Access facilitations • Appropriate design of educational programs • Museum staff for the implementation of educational programs • Preparation activities in school • Frequency of visits in museums • Choice of the appropriate educational programs • Collaboration of Special Education and mainstream teachers • Special Education teachers’ information about Museum Education

Practices in schools

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Some educational programmes are more like guided tours. It is important to design activities that provide children opportunities to discover something, to play with other children…. (SETcT5) It is not enough just to allow touch. Children want to play, to interact and to be engaged actively. (SETSS3) We visited the museum without some specialist from the museum. I was trying to describe some things to my student - as much as I could - but it wasn’t enough. She couldn’t understand what the other children were doing, she couldn’t participate and I tell you in the end she was very stressed. (SETRR1)

It is worth mentioning that SET apart from museum practices they referred to school practices as well giving great emphasis on their contribution to a “successful” museum visit. Based on their own experiences and practices, they mentioned the significance of all preliminary activities, which are conducted in class before the museum visit. They strongly believed that it is necessary not only to discuss with the students the content of the museum educational program but also there is need to discuss aspects regarding appropriate behavior in museums. They also mentioned the importance of frequent visits in museums for the development of social skills empowering inclusion: It is very important to prepare children before the museum visit. It is important to motivate them, to create a motivating environment coupled with enthusiasm and fruitful curiosity. (SETSS3) Visits in museums should be more frequent. Children during their first visits in the museum are very shy. When they get familiarized with the environment of the museum then they respond and interact better. (SETSS3) It is important to choose appropriate museum educational programmes for our students, accessible but also compatible to their age, to their interests, etc., if we want to have better results. (SETSS4)

SET who were supporting children with visual disability in general educational settings underscored the great significance of a fruitful

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collaboration between them and the mainstream teachers regarding the conduction of educational programs or regarding all preliminary activities which usually took place before the museum visits: “We should collaborate with the mainstream teachers in order to organize proper and well-structured museum visits” (SETRR1) “You need time to prepare the whole thing before a museum visit. This is feasible only if there is good collaboration between us [SET and mainstream teachers] and this is something that you cannot take it for granted”. (SETcTC7)

Finally, SET stressed the importance of having update information regarding Museum Education and all possible provisions that are offered in museums: I know that many new and interesting things take place regarding museums and Museum Education but unfortunately we don’t have much information about it. (SETRR1)

Discussion Based on the aforementioned issues—the theoretical background and the results—we can argue that school visits in museums could provide valuable opportunities to children with visual disability to acquire knowledge, to have access to cultural goods and to develop a range of skills such as social skills (Hooper-Greenhill 2007). Regarding social skills, SET reported a range of social skills that can be developed in the museums and stressed the importance of providing new social experiences to children with visual disability. Social skills constitute a domain of the education of children with visual disability in the expanded core curriculum, which is critical for their lives, and have great impact on their educational and social inclusion. Sacks (2014) states that social skill is essential to other domains of the expanded core curriculum as for example recreation and leisure, self-determination, etc. Nowadays, museum visits are considered as indispensable part of school life because they play significant role in the development of social skills, which

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ensure equal participation of children in school life as well as active involvement in cultural life and arts (Allman et al. 2014; Armstrong 2003; Cobb 1997; Hayhoe 2000). It is worth noting here, that the European Blind Union (2012) strongly holds the view that participation in cultural life is essential part of the full participation in social life. For this reason, school museum visits may be considered of great value for children with visual disability with multiple benefits for their educational and social inclusion at both short- and long-term perspective. However, these benefits are feasible under certain conditions and presuppositions. According to SET’ opinions, these conditions are embedded in museum and school practices. Regarding museums’ practices SET and especially those who were supporting students with visual disability in general educational settings reported a number of obstacles within museums for the development of social skills as well as for the achievement of other learning outcomes. Among these obstacles was the lack of access facilitations in museums as well as the lack of differentiated practices in the museum educational programs. The negative experiences that have been reported, especially in cases of school groups with children with and without visual disability, confirmed that visiting a museum is not always a positive, educational experience. As HooperGreenhill states (2007, p. 36) “learning is not always positive– we can learn to be afraid, or to undervalue ourselves, or to misunderstand facts and their implications.” In addition, SET stressed the importance of their own role and responsibilities. According to them, in order to organize better museum visits and achieve robust learning outcomes, teachers’ role may include issues such as: (a) the appropriate choices regarding the museum type and the content of the museum educational programs, (b) the frequency of museum visits and all the “prepare the ground” class activities before the museum visit, and (c) collaboration between SET and mainstream teachers. Many SET referred to a number of difficulties regarding their collaboration with mainstream teachers, which in turn resulted in a non-successful inclusion. This situation has also been reported in relevant studies regarding the Greek context (Strogilos et al. 2012). It is worth mentioning that SET put also great emphasis on the development of collaborations between museums and schools. These

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collaborations, according to the participants, could lead to more appropriate and accessible museum educational programs and material. The benefits of collaborations between schools and museums have been reported in many studies (see, e.g., Argyropoulos et al. 2017; Kanari and Argyropoulos 2014; Pearson and Aloysious 1994; Rosenberg et al. 2003). Diffusion of inclusive practices from formal to non-formal learning environments, awareness of museums regarding the appropriate ways of communication with children with disability are some of the benefits of the collaboration between schools and museums. As Shepherd (2009) states: Museum professionals have much to learn from those aspects of inclusive practice of school staff that can be transferred to a museum learning environment. By identifying strategies for organization, including considering learning styles, the learning environment and in case of school visitors the grouping of pupils and differentiation of tasks, museum staff can apply recommendations for creating an inclusive learning experience for visiting school pupils and the public. (p. 140)

Future Directions—Conclusions Based on the above, it may be argued that a theoretical framework is needed to function as underpinning for the development of more inclusive practices in the museums. This framework is shaped on principles of the differentiation (Tomlinson 2000) as well as on the principles of “Universal Design” and the “Universal Design for Learning” (Argyropoulos 2010; CAST 2011; Rappolt-Schlichtmann and Daley 2013) which take into account the diversity of different people and learners and provide opportunities for equal access and participation in different contexts and educational processes. In order to provide positive and meaningful learning and social experiences to children with visual disability in museums and create opportunities for social interaction, for the development of various skills, attitudes, motivations, etc., it is important to consider visits in museums in terms of inclusion and quality and not only as a technical matter of access (Spandagou 2011;

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Wapner 2013). Toward this direction and for the implementation of inclusive practices both in museums and in schools there is a need for changes at different levels and sectors of the society (Spandagou 2011). Issues such as the provision of access facilitations and appropriate infrastructure in museums, the training of museum staff in disability issues as well as teachers’ training in Museum Education, the development of collaborations and partnerships between museum and schools and the diffusion of good practices are considered critical for the development of inclusive practices in museums. Further research regarding the conjunction of formal and non-formal learning environments for the education of all children including those with visual disability could enrich this interdisciplinary field and provide more evidence about the contribution of museum visits to the education of children with visual disability. The long-term aim of these practices is to provide many dynamic and interactive educational opportunities to children with visual disability that allow them to develop their personality offering opportunities to participate equally to educational, cultural, and social life.

References Allman, B. C., & Lewis, S. (2014). A Strong Foundation: The Importance of the Expanded Core Curriculum. In C. B. Allman & S. Lewis (Eds.), ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments (pp. 15–30). New York, USA: AFB Press. Allman, B. C., Lewis, S., Lieberman, L. J., & Ross, M. A. (2014). Recreation and Leisure. In C. B. Allman & S. Lewis (Eds.), ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments (pp. 369–403). New York, USA: AFB Press. Argyropoulos, V. (2010). The Issue of Access of Individuals with Disabilities to Museum Space. In B. Vemi & E. Nakou (Eds.), Museums and Education (pp. 309–317). Athens: Νisos (in Greek). Argyropoulos, V., & Kanari, H. (2011). Museums and People with Visual Impairments: A Special Type of Social Exclusion. In A. Moutavelis (Ed.), Proceedings of 2nd Greek Conference in Special Education, Vol. II. Athens 15–18 April 2010 (pp. 366–374). Athens: Grigoris (in Greek).

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Argyropoulos, V., & Kanari, Ch. (2015). Re-imaging the Museums Through “Touch”: Reflections of Individuals with Visual Disability on Their Experience of Museum-Visiting in Greece. ALTER, European Journal of Disability Research, 9, 130–143. Argyropoulos, V., Nikolaraizi, M., Kanari, C., & Chamonikolaou, S. (2016). Education and Access of Students with Visual Disabilities to Culture: Re-defining the Role of Museums. In M. Carmo (Ed.), Proceedings of END 2016: International Conference on Education and New Developments. Ljubljana, Slovenia, 12–14 June 2016 (pp. 374–378). Portugal: World Institute for Advanced Research and Science (WIARS). Argyropoulos, V., Nikolaraizi, M., Kanari, C., Chamonikolaou, S., Plati, M., Markou, E., et al. (2017). Bridging Theory and Practice in Developing Inclusive Practices in Museum: The Greek Case. Proceedings of the 9th ICEVI European Conference “Empowered by Dialogue”. Bruges, Belgium, 2–7 July 2017 (pp. 40–41). ICEVI-Europe. Armstrong, B. (2003). Art Education for Children in Public Schools. In E. S. Axel & N. S. Levent (Eds.), Art Beyond Sight: A Resource Guide to Art, Creativity and Visual Impairment (pp. 354–363). New York: AFB Press. Arter, C. (1997). English. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 207–217). London: David Fulton Publishers. Arter, C., Everest, P., & McCall, S. (1997). Humanities. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 244–252). London: David Fulton Publishers. Axel, S. E., & Levent, S. N. (Eds.). (2003). Art Beyond Sight: A Resource Guide to Art, Creativity and Visual Impairment. Νew York: AFB Press. Black, G. (2005). The Engaging Museum: Developing Museums for Visitor Involvement. London: Routledge. Boussaid, M. (2004). Access of Blind and Visually Impaired People to Museums: Perspectives. In A. Tsitouri (Ed.), Access of People with Disabilities in Spaces of Culture and Sports. Athens: Ministry of Culture (in Greek). Brooks, M., & Brooks, C. (1997). Art and Design. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 289–300). London: David Fulton Publishers. CAST. (2011). Universal Design for Learning Guidelines Version 2.0. Wakefield, MA: Author. Accessed November 27, 2017, from http://www.udlcenter.org/ aboutudl/udlguidelines. Candlin, F. (2003). Blindness, Art and Exclusion in Museums and Galleries. Journal of Art and Design Education, 22(1), 100–110.

146     V. Argyropoulos and C. Kanari

Candlin, F. (2004). Don’t Touch! Hands Off! Art, Blindness and the Conservation of Expertise. Body and Society, 10(1), 71–90. Clamp, S. (1997). Mathematics. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 218–235). London: David Fulton Publishers. Cobb, R. (1997). Study Skills. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 179–186). London: David Fulton Publishers. Cohen, L., & Manion, L. (1994). Research Methods in Education (4th ed.). London: Routledge. Coxall, H. (2006). Open Minds: Inclusive Practices. In H. H. Genoways (Ed.), Museum Philosophy for the Twenty-First Century (pp. 139–149). Lanham, USA: Altamira Press. Dey, I. (1993). Qualitative Data Analysis: A User-Friendly Guide for Social Scientists. London: Routledge. De Coster, K., & Loots, G. (2004). Somewhere in Between Touch and Vision: In Search of a Meaningful Art Education for Blind Individuals. Journal of Art and Design Education, 23(3), 326–334. Dodd, J., & Sandell, R. (1998). Building Bridges: Guidance for Museums and Galleries on Developing New Audiences. London: Museums and Galleries Commision. Dodd, J., & Sandell, R. (Eds.). (2001a). Including Museums: Perspectives on Museums, Galleries and Social Inclusion. Leicester: Research Centre for Museums and Galleries, Department of Museum Studies, University of Leicester. Accessed September 25, 2017, from https://www2.le.ac.uk/ departments/museumstudies/rcmg/projects/small-museums-and-social-inclusion/Including%20museums.pdf. Dodd, J., & Sandell, R. (2001b). (Mis)Understandings of Exclusion and Inclusion. In J. Dodd & R. Sandell (Eds.), Including Museums: Perspectives on Museums, Galleries and Social Inclusion (pp. 7–15). Leicester: Research Centre for Museums and Galleries, Department of Museum Studies, University of Leicester. Accessed September 25, 2017, from https:// www2.le.ac.uk/departments/museumstudies/rcmg/projects/small-museums-and-social-inclusion/Including%20museums.pdf. European Blind Union (EBU). (2012). EBU Access to Culture Survey 2012: Mapping Current Levels of Accessibility to Cultural Venues and Activities in Europe. Accessed September 18, 2017, from http://www.euroblind.org/ projects-and-activities/projects/finished-projects/nr/1315. Falk, J., & Dierking, L. (1992). The Museum Experience. Washington, DC: Whalesback Books.

7  The Role of Non-formal Learning Environments …     147

Falk, J., & Dierking, L. (2000). Learning from Museums: Visitors Experiences and the Making of Meaning. London: Altamira Press. FEK /Β/07.09.1998. “Μinisterial Decisions and Decrees”. Fyssa, A., & Vlachou, A. (2015). Assessment of Quality for Inclusive Programs in Greek Preschools Classrooms. Journal of Early Intervention, 37(3), 190–207. Ginley, B. (2013). Museums: Α Whole New World for Visually Impaired People. Disability Studies Quarterly, 33(3). Accessed September 27, 2017, from http://dsq-sds.org/article/view/3761/3276. Georgaka, V., & Gavalas, G. (2015). Educational Programmes for Individuals with Disabilities and Special Educational Needs in Museums and Archaeological Sites: A Different Visit in the Archaeological Site of Acropolis. In V. Argyropoulos, S. Chamonikolaou, & Ch. Kanari (Eds.), Culture/Special Education: Access of Individuals with Disabilities or/ and Special Educational Needs in the Cultural and Physical Environment of Museums and Archaeological Sites (pp. 237–251). Volos: University of Thessaly (in Greek). Golding, V. (2012). Using Tangible and Intangible Heritage to Promote Social Inclusion for Students with Learning Disabilities. In N. Galanidou & L. Dommasnes (Eds.), Telling Children About the Past: An Interdisciplinary Approach (pp. 318–342). Athens: Kaleidoskopio (in Greek). Gotsis, S. (2004). Interpretative-Educational Programs for Groups of People with Disabilities: The Example of the Byzantine and Christian Museum. In A. Tsitouri (Ed.), Proceedings of Conference Access of People with Disabilities in Spaces of Culture and Sports. Thessaloniki 30 October–1 November 2003 (pp. 207–213). Athens: Ministry of Culture (in Greek). Griffin, J. (2007). Students, Teachers and Museums: Toward an Interwined Learning Circle. In J. H. Falk, L. D. Dierking, & S. Foutz (Eds.), In Principle, in Practice: Museums as Learning Institutions (pp. 31–42). Oxford, UK and Lanham, USA: Altamira Press. Hayhoe, S. (2000). The Effects of Late Arts Education on Adults with Early Visual Disabilities. Educational Research and Evaluation, 6(3), 229–249. Hayhoe, S. (2013). The Philosophical, Political and Religious Roots of Touch Exhibitions in 20th Century British Museums. Disability Studies Quarterly, 33(3). Accessed September 28, 2017, from http://dsq-sds.org/article/ view/3760/3273. Hansen, A. (2014). The Heritage Learning Framework and the Heritage Learning Outcomes. In D. Christidou (Ed.), Implementing Heritage Learning Outcomes (pp. 7–24). Östersund: JamtliFörlag, Fornvårdaren 37. Hein, G. (1998). Learning in the Museum. London: Routledge.

148     V. Argyropoulos and C. Kanari

Hetherington, K. (2000). Museums and the Visually Impaired: The Spatial Politics of Access. The Sociological Review, 48(3), 444–463. Hetherington, K. (2003). Accountability and Disposal: Visual Impairment and Museum. Museum and Society, 1(2), 104–115. Holstein, J. A., & Gubrium, J. F. (1997). Active Interviewing. In D. Silverman (Ed.), Qualitative Research (pp. 113–129). London: Sage. Hooper-Greenhill, E. (2006). The Power of Museum Pedagogy. In H. H. Genoways (Ed.), Museum Philosophy for the Twenty-First Century (pp. 235–245). Lanham, USA: Altamira Press. Hooper-Greenhill, E. (2007). Museums and Education: Purpose, Pedagogy, Performance. London: Routledge. Hooper-Greenhill, E., Sandell, R., Moussouri, T., & O’ Riain, H. (2000). Museums and Social Inclusion-The GLLAM Report. Leicester: Research Centre for Museums and Galleries, Department of Museum Studies, University of Leicester. Retrieved from https://www2.le.ac.uk/departments/ museumstudies/rcmg/projects/museums-and-social-inclusion-the-gllam-report/GLLAM%20Interior.pdf. ICOM Statutes. (2007). Museum Definition (Article 3—Definition of Terms— Section 1). Retrieved from http://archives.icom.museum/hist_def_eng.html. Kanari, Ch., Argyropoulos, V., & Filippatou, D. (2017). Social Inclusion and Museums: Special Education Teachers’ Perceptions Regarding Museums and Social Inclusion of Students with Visual Disability. Museumedu, 5, 107–133. Museum Education and Research Laboratory, University of Thessaly (in Greek). Kanari, H., & Argyropoulos, V. (2014). Museum Educational Programmes for Children with Visual Disabilities. The International Journal of the Inclusive Museum, 6(3), 13–24. Kanari, H., & Vemi, V. (2012). Museum Educational Programs for Children with Disabilities: Current Practices in Greece. In Chr. Prachalias (Ed.), Proceedings of the 8th International Conference of Education. Samos Island, 5–7 July, 2012 (pp. 984–989). Greece Research of Training Institute of the East Aegean (INEAG), Greece. Lai, E. R., & Waltman, K. (2008). Test Preparation: Examining Teacher Perceptions and Practices. Educational Measurement: Issues and Practice, 27(2), 28–45. Law, 2817/2000. “Education of Persons with Special Educational Needs and Other Provisions”. FEK 78/Α΄/14.03.2000. Law, 3699/2008. “Special Education of Persons with Disability or Special Educational Needs”. FEK 199/Α΄/2.10.2008.

7  The Role of Non-formal Learning Environments …     149

Levent, N., Kleege, G., & Pursley, M. J. (2013). Guest Editors’ Introduction: Museum Experience and Blindness. Disability Studies Quarterly, 33(3). Accessed September 28, 2017, from http://dsq-sds.org/article/view/3751. McNear, D. (2000). Arts Education. In M. C. Holbrook & A. J. Koening (Eds.), Foundations of Education (Vol. II), Instructional Strategies for Teaching Children and Youths with Visual Impairments (pp. 400–436). New York: AFB Press. Minett, S. (1997). Science. In H. Mason & S. McCall (Eds.), Visual Impairment: Access to Education for Children and Young People (pp. 236–243). London: David Fulton Publishers. Moussouri, T. (2007). Implications of the Social Model of Disability for Visitor Research. Visitors Studies, 10(1), 90–106. Nakou, E. (2010). The Museum as Space of Various Educational Perceptions and Practices: General Notes Based on Research in Universities and Museums in Greece. In B. Vemi & E. Nakou (Eds.), Museums and Education (pp. 319–333). Athens: Νisos (in Greek). Nikonanou, N. (2010). Museum Education: From Theory to Practice. Athens: Patakis (in Greek). O’Brien, M., & Candlin, F. (2001). Lifelong Learning in Museums: A Critical Appraisal. London: Birkbecke Prints. Available at: http://eprints.bbk. ac.uk/754. Accessed September 26, 2017. Oliver, M. (1990). The Politics of Disablement. London: Macmillan. Pearson, A., & Aloysious, C. (1994). The Big Foot: Museums and Children with Learning Difficulties. London: Trustees of the British Museum. British Museum Press. Pini, Ε. (2004). Designing Archaeological Educational Programs for People with Disabilities. In A. Tsitouri (Ed.), Proceedings of Conference Access of People with Disabilities in Spaces of Culture and Sports. Thessaloniki 30 October–1 November 2003 (pp. 196–199). Athens: Ministry of Culture (in Greek). Rappolt-Schlichtmann, G., & Daley, G. S. (2013). Providing Access to Engagement in Learning: The Potential of Universal Design for Learning in Museum Design. Curator: The Museum Journal, 56(3), 307–321. Reich, C., Lindgren-Streicher, A., Beyer, M., Levent, N., Pursley, J., & Mesiti, L. A. (2011). Speaking Out on Art and Museums: A Study on the Needs and Preferences of Adults Who Are Blind or Have Low Vision: Report. Museum of Science, Boston & Art Beyond Sight. Accessed September 23, 2017, from https://www.imamuseum.org/sites/default/files/attachments/IMA_ABS_ Speaking_Out_on_Art_and_Museums_Report_1.pdf. Robson, C. (1997). Real World Research. Oxford: Blackwell.

150     V. Argyropoulos and C. Kanari

Rosenberg, F., Schroder, L., & Wheelock F. P. (2003). Museum and School Collaborations. In E. S. Axel & N. S. Levent (Eds.), Art Beyond Sight: A Resource Guide to Art, Creativity and Visual Impairment (pp. 364–373). Νew York: AFB Press. Sacks, Ζ. S. (2014). Social Interaction. In C. B. Allman & S. Lewis (Eds.), ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments (pp. 324–368). New York, USA: AFB Press. Sacks, Ζ. S., & Silberman, K. R. (2000). Social Skills. In M. C. Holbrook & A. J. Koening (Eds.), Foundations of Education Instructional Strategies for Teaching Children and Youths with Visual Impairments (Vol. II) (pp. 616– 652). New York: AFB Press. Sandell, R. (2002). Museums and the Combating of Social Inequality: Roles, Responsibilities, Resistance. In R. Sandell (Ed.), Museums, Society, Inequality (pp. 3–23). London: Routledge. Sandell, R., & Dodd, J. (2010). Activist Practice. In R. Sandell, J. Dodd, & R. Garland-Thomson (Eds.), Re-presenting Disability: Activism and Agency in the Museum (pp. 3–22). London: Routledge. Shepherd, H. (2009). Inclusion and Museums: Developing Inclusive Practice. British Journal of Special Education, 36(3), 140–145. Spandagou, I. (2011). The Use of Museums in Inclusive Education of Children with Disabilities. In D. Kalesopooulou (Ed.), Child and Education in Museums: Theoretical Orientations, Pedagogical Practices (pp. 113–124). Athens: Patakis (in Greek). Strogilos, V. (2012). The Cultural Understanding of Inclusion Within a Centralised System. International Journal of Inclusive Education, 16(12), 1241–1258. Strogilos, V., Nikolaraizi, M., & Tragoulia, E. (2012). Experiences Among Beginning Special Education Teachers in General Education Settings: The Influence of School Culture. European Journal of Special Needs Education, 27(2), 185–189. Strogilos, V., Tragoulia, E., Avramidis, E., Voulagka, A., & Papanikolaou, V. (2017). Understanding the Development of Differentiated Instruction for Students with and Without Disabilities in Co-taught Classrooms. Disability & Society, 32(8), 1216–1238.

7  The Role of Non-formal Learning Environments …     151

Tomlinson, C. A. (2000). The Differentiated Classroom: Responding to the Needs of All Learners. Alexandria: Association for Supervision and Curriculum Development. Tranter, R., & Palin, N. (2004). Including the Excluded: An Art in Itself. Support for Learning, 19(2), 88–95. Tsitouri, A. (2005). Universal Access for People with Disabilities: Reality or Utopia? TetradiaMouseiologias, 2, 37–42 (in Greek). UNESCO. (1994). The Salamanca Statement and Framework for Action on Special Needs Education, World Conference on Special Needs Education: Access and Quality, Salamanca, Spain 7–10 June 1994. UNESCO-Ministry of Education and Science Spain. Accessed September 16, 2017, from http:// www.unesco.org/education/pdf/SALAMA_E.PDF. United Nations. (2006). Convention on the Rights of Persons with Disabilities, Optional Protocol to the Convention on the Rights of Persons with Disabilities. Accessed September 16, 2017, from http://www.un.org/esa/socdev/enable/ rights/convtexte.htm#convtext. Vemi, V., & Kanari, H. (2008). School Teachers and Museum Education: A Key Factor in Expanding the Inclusive Character of Museums. The International Journal of the Inclusive Museum, 1, 1–8. Vergo, P. (Ed.). (1989). New Museology. London: Reaktion Books. Wapner, J. (2013). Mission and Low Vision: A Visually Impaired Museologist’s Perspective on Inclusivity. Disability Studies Quarterly, 33(3). Accessed September 28, 2017, from http://dsq-sds.org/article/view/3756/3290. Weisen, M. (2008). How Accessible Are Museums Today? In H. J. Chatterjee (Ed.), Touch in Museums: Policy and Practice in Object Handling (pp. 243– 252). Oxford and New York: Berg. YPEPTH. (2004). Differentiated Curriculum for Students with Blindness. Pedagogical Institute, Department of Special Education. Accessed September 17, 2017, from https://repository.edulll.gr/edulll/retrieve/3301/979.pdf.

8 A Comparison of Special Education Teachers’ Attitudes Toward Various Augmentative and Alternative Communication Systems Shakila Dada

Introduction Over the past decades, the South African Education Policy Act (Act 27 of 1996) has attempted to move the country away from a twofold education system (special and general) toward an inclusive education system that addresses the diverse needs of all learners (Lomofsky and Lazarus 2001). Inclusive education in South Africa nevertheless remains challenging for a variety of reasons. A recent report found that many children with disabilities face discriminatory practices at school, and that these serve as barriers to receiving a quality education. The barriers include access to education, inadequately trained teachers, and negative attitudes toward children with disability (Human Rights Watch 2015).

S. Dada (*)  Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_8

153

154     S. Dada

Children with disabilities including those with little or no functional speech (LNFS) (defined as children who cannot use speech adequately to meet all of their communication needs) have the right to unrestrictive school environments. Children with LNFS would benefit from augmentative and alternative communication (AAC). AAC includes the use of techniques, strategies, aids, and symbols to supplement oral speech or substitute speech that is not functional (American Speech-Language-Hearing Association [ASHA] 2015). Aided AAC, the focus of this study, refers to both electronic options such as speech-generating devices (SGDs), i.e., iPads with AAC software and non-electronic options such as communication boards and picture exchange systems (ASHA 2015). Electronic AAC devices such as SGDs include dedicated (developed solely for communication and AAC) and non-dedicated AAC (technologies that may be adapted to be used as a communication tool). AAC has also been accepted as a medium of learning for children with LNFS in South Africa (DoE 2007, 2010). Recently some provincial education departments have been able to purchase AAC devices; however, this has not been rolled out as the procurement process of such technologies has not yet been put in place as yet (DoE 2015). Teachers play a pivotal role in facilitating the inclusion of children with disabilities in general, and their role is particularly important when dealing with children who use AAC (De Bortoli et al. 2011; Soto 1997). The teachers are required to assume numerous and diverse roles and responsibilities in teams that deliver AAC services for students with LNFS (Dada and Alant 2001, 2002). However, they often lack the necessary expertise to operate and maintain an AAC system to access the curriculum (Soto 1997). Unfortunately, many special education teachers in South Africa still feel uncertain as to what learners who use AAC need, understand, prefer, and are capable of doing (Bornman and Donohue 2013; Tönsing and Dada 2016). The range of skills and knowledge that teachers require to involve users of AAC is extensive and involves multiskilling. Many teachers lack these abilities to operate and maintain an AAC system to access the curriculum (Binger et al. 2012). Three main barriers to AAC implementation in school settings have been identified, namely (i) teachers’ knowledge (their limited

8  A Comparison of Special Education Teachers’ Attitudes …     155

understanding of AAC techniques and strategies), (ii) practices (school practices which limit participation opportunities), and (iii) negative attitudes by different role players toward the implementation of AAC (Beukelman and Mirenda 2013). Teachers’ attitudes toward implementing AAC may become more positive and allow them to see the learners’ potential if they receive training as well as support for learners with disabilities (Kent-Walsh and Light 2003). Research has shown that teacher attitudes toward learners with disabilities change when they begin working with learners with disabilities on a daily basis. This was also highlighted in the study by De Bortoli et al. (2011) where some teachers reported their attitudes toward learners changed positively when positive communication experiences occurred, challenging their initial assumptions about learners’ communication abilities. In addition, their attitudes also enhanced the creation of communication opportunities. This is similar to the findings of Soto (1997) where teacher attitudes and experiences influenced their communication intention with users of AAC. Negative attitudes of teachers toward the implementation of AAC strategies in the classroom can lead to limited communication opportunities, low expectations, and poor academic outcomes for learners that require AAC (McCarthy and Light 2005; Popich and Alant 1997). Light and McNaughton (2014) state that intervention and advocacy are needed to address attitude barriers with regard to AAC use. Teachers also expressed concern about the abilities of learners with LNFS to participate academically and socially in classrooms, about the learners’ limited sense of self-efficacy, and about teachers’ negative attitudes toward learners with LNFS. South African studies by Dada and Alant (2001, 2002) found that aided AAC (Communication boards and SGDs) in particular was perceived positively by teachers. However, it is interesting to note that the South African special education teachers and mainstream teachers did not give preference to dedicated SGDs, unlike the respondents in other international studies in which the SGDs were clearly perceived more positively. Dada and Alant (2001, 2002) suggested that the local teachers may have felt intimidated by the technology and training required to use specialized technology like dedicated AAC devices.

156     S. Dada

More recently, in a study on the perceptions of South African special education teachers on the use of aided AAC, Tönsing and Dada (2016) identified some barriers and facilitators regarding AAC implementation. These included (i) the special education teachers’ confusion about their role, competence, confidence, and training; (ii) the lack of time for implementing aided AAC in classrooms; (iii) complex classrooms environments with various demands on and expectations from teachers and students; and (iv) the nature of aided AAC systems (teachers had negative perceptions regarding devices that may break, malfunction or get lost, and the limited or inappropriate vocabulary stored on such devices). These perceptions were perceived as minimally challenging to somewhat challenging. Elements to support the implementation of aided AAC included having a supportive team and assistance available in classrooms (Tönsing and Dada 2016). It is interesting to note that the majority of aided electronic AAC systems used by children with LNFS in these classrooms were iPads1 with AAC software. The recent introduction of the iPad with AAC software has had a rapid and widespread impact on communication of individuals with LNFS (McNaughton and Light 2013). The iPad with AAC software is a high-technology non-dedicated device which allows the ­freedom of a cost-effective, light, mobile, and socially accepted device (Watson Hyatt 2011). The relative affordability, ease of maintenance, and repair are other important benefits in countries like South Africa, where high-technology dedicated AAC devices are often unaffordable (Alant 2007). Since mobile technology has greatly increased the visibility and acceptance of AAC, these type of devices are increasingly being used in South African classrooms (Tönsing and Dada 2016) and may therefore play a positive role to minimize teachers’ resistance to AAC implementation (Abbott et al. 2011; McNaughton and Light 2013). In addition, recent provision of state funding for assistive technology (including AAC devices) in some South African provinces (Van Niekerk et al. 2017) may influence AAC technology provision.

1The iPad and iPhone are devices available from Apple Inc., Cupertino, CA. http://www.apple. com.

8  A Comparison of Special Education Teachers’ Attitudes …     157

However, it is important to conduct further research regarding attitudes toward AAC devices, since technology is continually changing and rapidly becoming more sophisticated (Abbott et al. 2011). Furthermore, negative attitudes of teachers toward the implementation of AAC strategies in the classroom can hamper communication opportunities and lead to low expectations and poor academic outcomes for learners who require AAC (McCarthy and Light 2005). Flores et al. (2012) ascertained that teachers found it easier to implement an iPad than a picture-card system as a communication system. One reason for this could be that, traditionally, AAC devices required teachers to master complicated technical devices, whereas nowadays many people are quite familiar with using an iPad with apps (McNaughton and Light 2013). Other studies suggested that some teachers are “technophobes,” which negatively influences their willingness to learn to use AAC, SGDs, and AAC-related software (De Bortoli et al. 2011; Soto 1997). De Bortoli et al. (2011) highlighted the need for further research into teacher attitudes toward communication of learners with multiple and severe disabilities, and they proposed that the role of teachers be examined with regard to supporting these learners with communication. The recent explosion in technology has caused a greater awareness within the AAC field of the potential use of high-technology nondedicated devices, for instance an iPad with AAC-dedicated software, specifically Proloquo2Go.2 The question arose as to whether special education teachers would display an attitudinal difference toward an AAC user who uses a high-technology non-dedicated device such as an iPad with AAC software, than toward an AAC user who uses a low-technology device like the communication board. Therefore, this study aims to determine the attitude of special education teachers toward an unfamiliar student with LNFS who uses a high-technology non-dedicated communication device, namely an iPad with Proloquo2Go, and the same student using a low-technology communication board.

2Proloquo2Go™

is a symbol-supported communication app available from Assistive Ware, Amsterdam, Netherlands. http://www.assistiveware.com/product/proloquo2go.

158     S. Dada

Method Design An embedded mixed methods design was utilized for this study (Creswell et al. 2003). The quantitative component was a crossover design which allowed for the use of a small sample size (Wang and Bakhai 2006) and by counterbalancing the order of teachers’ exposure to the videos, enabled the researchers to rule out order effects (Jones and Kenward 1989). Two videos were developed for the purpose of this study. The first video (Video 1) depicted a scripted communication interaction of an unfamiliar student with LNFS using the mobile technology (i.e., iPad) with the Proloquo2Go AAC application. The second video (Video 2) was the same, except for the fact that the student used a communication board. The Teacher Attitude Scale (TAS) (Dada and Alant 2001) was completed by each group of teachers after having viewed each of the videos. Group 1 watched Video 1 followed by Video 2, and Group 2 watched Video 2 followed by Video 1. This was followed up by the qualitative ethnographic observations of the author over an eighteen month period implementing iPads with AAC software in a school in a low-income context.

Participants Purposeful sampling was utilized in this study. The site for the study was a special school in a special education school in a low-income area in South Africa. The teachers were registered at the South African Council of Educators who have been working at the school for at least two years. Informed consent letters were sent to all the teachers at the school. A total of 35 teachers consented to participate in the study. They were divided into two subgroups by means of paired randomization, with Group 1 consisting of 15 females and 3 males, and Group 2 comprising 15 female and 2 male teachers. Table 8.1 presents the age means and standard deviations for each group, and the p value using the

8  A Comparison of Special Education Teachers’ Attitudes …     159 Table 8.1  Mean age of each group Group

Mean (months)

Standard deviation

p value

1 2

43.83 45.53

13.43 14.47

0.722

t test to compare the two groups. No statistically significant difference (p = 0.72) between the two groups was found for the age variable. For the qualitative component, the author was involved with 3 teachers and 1 speech therapist in implementing AAC at the school.

Materials Teacher Attitude Scale (TAS) (see Appendix A) developed by Dada and Alant (2001). The TAS is based on a 5-point Likert scale and is divided into five subscales, each with seven or eight questions. Section (A) deals with teachers’ perception of their own abilities, for example, “I am trained to teach this child”; Section (B) with teachers’ expectation of learners, for example, “This child will eventually learn to read”; Section (C) with teachers’ perception of classroom interaction, for example “This child would be able to answer questions in the class”; Section (D) with teachers’ perception of the device, for example, “The way this child ‘talks’ will prevent her from progressing at school”; and Section (E) with teachers’ perception of learners’ communication ability, for example, “This child can start a conversation.” The TAS makes use of a Likert scale with options ranging from 5 (I strongly agree) to 1 (I strongly disagree). Videos. Two similar videos, each approximately 3 minutes in duration, which differed only in respect of the type of AAC system used, were developed (Dada et al. 2016). Both videos featured the same scripted conversation between a communication partner and an unfamiliar student with LNFS using AAC. Both videos started by showing the communication partner and the unfamiliar student using AAC while sitting at a table next to each other. The videos then focused on the AAC display and only the back of the unfamiliar student was shown as she interacted with a female communication partner in a scripted

160     S. Dada

conversation. The communication partner who was visible at the beginning of both videos could no longer be seen as the videos proceeded. Video 1 displayed the iPad with the Proloquo2Go together with synthesized speech output, while Video 2 featured a communication board, with the communication partner voicing the visual output selected by the unfamiliar student using AAC. Displays. The settings on the Proloquo2Go software on the iPad were (a) Background color: white; Label position: below image; Multiline table: on; (b) Qwerty Text option: ArialMT, 25pt; (c) Speech setting: speak as you type settings: all switched off; Volume: high; (d) Speech rate: slow. A low-tech communication board display similar in content and size to the display of the iPad was utilized in this study. It consisted of a screenshot of the iPad display, which was a QWERTY keyboard, with black letters on a white background pasted onto a black cardboard and matt laminated. The size of the communication board was 19.8 cm × 14.9  cm.

Procedures Ethical approval was obtained from the relevant authorities; permission was obtained from the relevant education department and the school principal, and informed consent was obtained from the teachers. Group 1 met at the school hall where scripted instructions were read to them, prior to showing the video to the group. Group 1 viewed Video 1 (video of the communication interaction of an unfamiliar student with LNFS using the iPad with Proloquo2Go). After this, the teachers completed the TAS independently. They then viewed Video 2 (the video of the communication interaction of an unfamiliar student with LNFS using the communication board) and again completed the TAS. In order to ensure that the teachers’ attitudes were not influenced by the order of the presentation of the videos, Group 2 were presented with the videos in a reversed sequence (first Video 2 and then Video 1). Implementing AAC using an iPad with AAC software was then implemented at a similar low-income special education school.

8  A Comparison of Special Education Teachers’ Attitudes …     161

The school had received various aided AAC technologies to be ­implemented with the children who require AAC. The teachers and rehabilitation staff reflected on the challenges and facilitators of implementing such a program. The first author also reflected on some of the challenges and facilitators of implementing AAC within such a context.

Scoring and Reliability All of the statements in the TAS were scored from 1 to 5, depending on the statement. Positively worded statements were scored from 5 (I strongly agree) to 1 (I strongly disagree), and negatively worded statements were reverse-scored. For the five TAS sections, the Cronbach’s alpha coefficients were as follows: (a) teachers’ perception of their own abilities was α = 0.84; (b) teachers’ expectation of learners with LNFS was α = 0.59; (c) teachers’ perception of classroom interaction was α = 0.78; (d) teachers’ perception of the device was α = 0.69; and (e) teachers’ perception of learners’ communication ability was α = 0.67. Internal consistency for this scale, based on Cronbach’s alpha coefficients, was ≥ 0.70, which is acceptable (Nunally 1978).

Results Quantitative Data Equivalence of Groups. Table 8.2 displays the gender, home language, qualifications, and comfort using an iPad for the participants for each of the groups, and the p values using Fisher’s exact test to compare the two groups. Table 8.2 also shows no statistically significant difference for the two groups regarding gender (p = 0.53), home language (p = 0.48), or highest qualification (p = 0.80) distribution, which implies that the two groups were equivalent on these variables. There was however a significant difference between the two groups in terms of comfort levels of working with iPads (p = 0.033), with Group 1 having higher comfort levels compared to Group 2.

162     S. Dada Table 8.2  Group descriptions Gender Home language

Highest qualification

How comfortable using an iPad

Female Male English Afrikaans Other Diploma Degree Remedial Honors degree Very comfortable Comfortable Uneasy

Group 1

Group 2

p value

83.3 16.7 22.2 77.8 0 27.8 50.0 11.1 11.1 55.6 27.8 16.7

88.2 11.8 29.4 64.7 5.9 17.6 17.6 29.4 35.3 17.6 70.6 11.8

0.53 0.48

0.80

0.033*

*p  ≤ 0.05

Order Effect. A nested ANOVA was performed to determine the presence of an order effect, in other words whether the sequence in which the two videos were watched by the participants influenced their attitudes. The sequence in which each group watched the videos was however counterbalanced. No statistically significant order effects were found for any of the TAS subscales, (a) Teachers’ perception of their own abilities (p = 0.06); (b) Teachers’ expectation of learners with LNFS (p = 0.36); (c) Teachers’ perception of classroom interaction (p = 0.28); (d) Teachers’ perception of the device (p = 0.76); and (e) Teachers’ perception of learners’ communication ability (p = 0.88). Within-group Comparisons. Within-group comparisons could be made between Video 1 (the unfamiliar student using an iPad with Proloquo2Go application) and Video 2 (the unfamiliar student using a communication board). Table 8.3 illustrates the main effects ANOVA (taking into account the person and phase in which it was watched) for each of the five subscales of the TAS. Table 8.3 shows no statistically significant differences between Video 1 and Video 2 on four of the five subscales: (a) Teachers’ perception of their own abilities (p = 0.84); (b) Teachers’ expectation of learners with LNFS (p = 0.41); (c) Teachers’ perception of classroom

8  A Comparison of Special Education Teachers’ Attitudes …     163 Table 8.3  Comparison for differences between two videos Video iPad with Proloquo2Go Communication board Dimension/Subscale Mean Standard Mean Standard deviation deviation

p value

(a) Teachers’ perception of their own abilities (b) Teachers’ expectation of learners with LNFS (c) Teachers’ perception of classroom interaction (d) Teachers’ perception of the device (e) Teachers’ perception of learners’ communication ability

2.87

0.04

2.88

0.04

0.84

2.60

0.05

2.66

0.045

0.41

2.17

0.09

2.20

0.09

0.82

1.97

0.06

2.19

0.06

0.02*

1.86

0.15

2.16

0.14

0.15

*p  ≤ 0.05

interaction (p = 0.82); and (e) Teachers’ perception of learners’ communication ability (p = 0.15). However, with regard to subscale (d) Teachers’ perceptions of the device (p = 0.02), a statistically s­ignificant difference was found, which indicates that teachers had a ­significantly more favorable attitude toward the video of the communication board. Correlation. The Spearman rank order correlation was conducted to determine if there was a correlation between the teachers’ reported comfort working with an iPad and their perceptions as represented by the subscales of the TAS. The results revealed a negative correlation between comfort with iPad and (c) Teachers’ perception of classroom interaction (rs = −0.14, p ˂ 0.05), as well as between comfort with iPad and (d) Teachers’ perception of the device (rs = −0.19, p ˂ 0.05). The correlation indicates that as the teachers reported increased comfort with using an iPad, their perceptions of classroom interaction and of the device became more negative.

164     S. Dada

Qualitative Data Following the quantitative aspect of the study, AAC (iPad with AAC software) was implemented at a school, in a low-income area, over an eighteen month period and will continue for another year. The author reflects on the challenges and strengths in implementing AAC in a school in a low-income area. Initially, the school speech therapists were trained on using the AAC devices with a group of 6 children. This was followed by training the parents in using AAC at home as well as the teachers with implementing it in the classroom. The challenges reported by the therapist and teachers in implementing the AAC program were similar to those identified in a more resourced school as highlighted in Tönsing and Dada (2016) which included (i) teacher-related barriers, (ii) classroom contexts, (iii) aided AAC, (iv) lack of team support, and (v) student characteristics. However, while these themes recurred the author was of the opinion that one needed to consider a system approach to implementing AAC mobile technologies within the low-income context (Bronfenbrenner 1977). This would include not only the immediate settings (classroom) containing the child but also the larger social contexts (society). When analyzing some of the challenges experienced by teachers when including the child who requires AAC, the context with in which the child, school, and teacher exists cannot be ignored. The physical setting of the school is important. Variations in terms of the physical structures of schools are important. The school in this study could be argued to have good physical structure with indoor plumbing and toilets available. However, classrooms were container-like structures which were extremely hot inside the summer and cold in the winter. They did however have a roof. The school was situated in a township and serviced children from the township and surrounding informal ­settlement areas. The school had electricity as well as intermittent access to free Wi-Fi. These are important aspects to consider as not all schools would have these resources. Free access to Wi-Fi when using iPads with AAC software is essential as software needs to be upgraded and connectivity is required when developing new pages for communication overlays and

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sharing these between devices. It was interesting to note however, that despite these facilitators, teachers had limited preexisting knowledge of mobile technologies and how to download applications onto these devices. Teacher-related skills. The need for training in terms of computer and mobile technologies was evident as teachers reported having limited computer literacy skills. Most teachers relied on the school speech therapist to complete computer-related tasks. A shared computer and printer were placed in the speech therapist room as individual teachers did not have access to computers in their own classrooms. This may not be indicative of all teachers that serve children with special needs in South Africa, but it is an important area to note that training needs to consider variations in teachers’ skills in this area. Teachers reported very limited knowledge on AAC as well as the curriculum adaptations for children with LNFS who used AAC. They were unsure how to adapt the assessment task for the child who requires AAC and also had difficulty deciding on how to include the child that uses AAC in classroom activities. Verbal discussions on how to do this were often difficult for teachers to implement with limited carryover to the classroom. As an alternative strategy, the author attempted to demonstrate group strategies using AAC for teachers to observe in classrooms. Teachers were invited to observe these sessions and then attempt to implement it in their own classrooms. Teachers reported that they preferred these types of observations with practical implementation and adaptations to the curriculum being demonstrated. Modeling practical teaching appears to be a strategy that may be worth further exploring in training models for teachers implementing AAC in classrooms. The need for appropriate and relevant resources for the teachers was repeatedly raised as was the need for mentorship in implementing AAC in the classroom. The pre-preparation for these lessons (vocabulary selection, charging devices, etc.) was also a challenge for teachers. The primary responsibility for programming AAC devices was unclear. Teachers felt that the single speech therapist at the school should be responsible for this for all the children in the school. This may be attributed in part to their lack of training in programming the AAC device. Training on mobile

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technologies and in particular the AAC software was an essential part of the AAC training. This included more advanced options like making a communication overlay, recording messages, selecting and organizing vocabulary to more introductory skills like adjusting volume on an iPad, locking the screen and finding the app on the screen. Classroom context. The diversity of students in terms of diagnosis and abilities seemed to make implementing AAC in the classroom difficult for the teachers. Teachers reported that having “only one child that requires AAC” in a classroom of children with varied disabilities makes it difficult to focus on the child that requires AAC. In addition, linguistic diversity was evident in the classrooms. The schools medium of instruction was supposedly English and Sepedi, but due to the diversity of children’s home languages teachers were often teaching in multiple languages in order to remain linguistically inclusive. Safety was also an important consideration as it was time consuming to obtain and return the AAC devices from the school principals’ office daily. It was deemed necessary to place these in a safe as theft of the devices was possible. Hence, charging devices and time to make communication overlays needed to be carefully planned in advance. For this reason, the AAC devices could not be taken home as well as the fact that some children did not have access to electricity at home. Aided AAC. It was also evident that the Proloquo2Go AAC application would not work in a linguistically diverse classroom. Hence, the Go Talk Now3 AAC application was utilized for the training with the children that require AAC. It was preferred as it could be programmed in different languages and would also be useful when using with parents or family members who may not be proficient in English. In addition, it was also important to develop low-technology communication boards similar to the ones on the iPad. Despite the school having the computer, software, and printer to make communication boards, the skills of the teachers and therapists in making these were limited. They needed to be trained on basic computer skills and on

3Go Talk Now is a product of the Attainment Company Inc., Verona, WI. www.attainmentcompany.co.

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how to make the communication boards, select vocabulary as well as organize a communication board. It was noted that training on using the low-technology AAC system (communication board) without voice seemed to be preferred by the teachers. It was a useful introduction to training using AAC prior to including the mobile technologies. Once they felt competent using a communication board with the children, they were more likely to start using the mobile technologies. Home environment. Parents were willing and able to attend training sessions on using AAC. All parents preferred being trained on the communication overlays and were hesitant of using the iPad with AAC software. While parents wanted their children to communicate with iPads, they themselves were hesitant to use them. They also discussed activities in which they wanted to use communication boards with their children and these included playing games, instructions for chores, boards to use with other children, and storybook reading. The use of the specific activity-based communication overlays was useful in terms of planning how to use the communication board with their child. The model of training involved the author training the children to use the board with her prior to the parents being invited to the sessions. At the parents’ session, the author demonstrated using the board by the author with their child, followed by the parent and author using the board with the child and gradually the parent doing the activity alone. It was also important to have the communication boards in English as well as the home language so the parents could use the boards. As adult literacy in this community is low, parents were also required to learn the abstract graphic symbols and what they represented.

Discussion The current study demonstrates that no statistically significant difference was found in teachers’ attitudes toward AAC devices in general, except for a significantly more positive attitude toward the communication board. This was supported in the observations when implementing iPads with AAC software at the school. Communication boards were useful as the preferred method for introducing AAC to them.

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This statistically significant difference is noteworthy because several previous studies also found more positive attitudes toward communication boards in South Africa (Dada and Alant 2001, 2002) (i.e., when comparing low-technology communication aids and SGDs). The findings of the quantitative study could indicate that the use of general ­consumer-level mobile technologies with AAC applications makes it more likely that teachers will have more positive attitudes toward the child and their use in classrooms. However, it was observed that despite the positive attitudes teachers were less confident with it when compared to communication boards. As can be deduced from the current quantitative results, teachers appear confident of their ability to teach a child using a communication board or an iPad™. Teachers’ belief in themselves is said to be an important indicator, not only of teacher motivation and effort, but also of learner achievement (Dada and Alant 2002). The results nevertheless seem to show that teachers feel they need extra training to teach the child who works with an iPad™ and they also need assistance in the classroom as well as curriculum adaptations. Limited availability of teacher training on AAC has been highlighted as a shortcoming by various authors (De Bortoli et al. 2011; Tönsing and Dada 2016). The results of the current study show that, in terms of the child’s ability to learn and progress in future, the teachers tended to have a slightly higher expectation of the child using the iPad™ than of the one using the communication board. This correlates with previous research which states that the use of technology (e.g., SGDs) positively influences attitudes and perceptions, as the individuals who use them appear communicatively more competent (Beck et al. 2002; Gorenflo and Gorenflo 1997; Lilienfeld and Alant 2002). Nonetheless, although teachers tended to feel that these students could be employed, they warned that they would need a disability grant. It seems that the teachers expected the learner to find employment, but since the remuneration would be limited, he/she would still be dependent on a disability grant. Teachers also reported that they required more education and training regarding AAC, as was found in the original studies using the TAS (Dada and Alant 2001, 2002). This would be in line with other research findings, which state that teachers require education in terms of AAC,

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not only to promote their own capability and sense of qualification, but also to increase communication and learning opportunities for the users of AAC systems (Tönsing and Dada 2016) as well as adaptations of curriculum to include children who use AAC. Without providing the necessary training to teachers, the individuals who are the beneficiaries of these AAC devices may never get a chance to use the technology effectively. Educating the communication partner, in this case the teacher, is essential to maximize communication opportunities for users of AAC (Abbott et al. 2011; Kent-Walsh and Light 2003). The study highlights that training in implementing AAC may not be focused only on teacher or classroom related context but also broader environments. An ecological perspective allows on to approach to research in relation to the child’s changing environments and wider community.

Conclusions and Recommendations for Future Research This study should be seen as a first step in understanding the attitudes of teachers toward the use of general consumer-level mobile technologies with AAC applications. The most important finding of this study was that teachers had an equally positive attitude toward an unfamiliar student with LNFS who used a mobile technology with an AAC application or a communication board. Serious consideration should therefore be given to the use of mobile AAC technologies like the iPad with speech output and AAC applications to facilitate the process of including children with LNFS into inclusive school settings. It is however imperative to understand that sometimes teachers’ ­attitudes may be positive however, they may face barriers and challenges to implementing AAC in a classroom context. Training teachers on implementing AAC within classrooms contexts requires more information about AAC; training models should include training on curriculum adaptation, as well as practical demonstrations of using AAC in classrooms with heterogeneous children and linguistic diversity. The need for practical demonstrations, curriculum adaptations, and broader computer-related skills is warranted in this specific context.

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Acknowledgements    This study was supported by National Research Foundation (NRF) (# 150708124127) and University of Pretoria Research and Development Program. Opinions expressed and conclusions arrived at are those of the author and are not necessarily those of the funders. The author would like to acknowledge all the participants and graduate student who assisted with this project.

Appendix A: Teacher Attitude Scale (TAS) Instructions Thank you for watching the video attentively. Kindly complete this Teacher Attitude Scale placing a tick in only one of the options of strongly agree, agree, uncertain, agree, disagree. Please do not consult with the other teacher’s, as there are no right or wrong answers. Please do not hesitate to ask for further clarification. Official Use 1. Respondent Number: ________________________________ ⎕ 16 2. Video Number: ____________________________________ ⎕ 17 Example No. Statement Strongly agree Agree Uncertain Disagree Strongly disagree 1 2

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Section A: Teacher’s Perceptions on Their Own Abilities No. Statement 1. 2. 3.

4.

5.

6.

7.

I will be able to teach this child I am trained to teach this child I would be able to cope with this child in my class without help I will be able to teach this child to read I will need extra training to teach this child I would need an assistant, if this child were in my class I would feel confident about teaching this child

Strongly Agree agree

Uncertain Disagree Strongly disagree ⎕ 18 ⎕ 19 ⎕ 20

⎕ 21 ⎕ 22 ⎕ 23

⎕ 24

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Section B: Teacher’s Expectations of the Child Official Use No. Statement 1. 2. 3.

4.

5.

6.

7.

This child wants to learn This child is a quick learner This child will need extra help to learn This child will eventually learn to read This child will eventually need a disability grant This child will be able to go to a normal school This child will find a job one day

Strongly Agree Uncertain Disagree Strongly agree disagree ⎕ 25 ⎕ 26 ⎕ 27 ⎕ 28 ⎕ 29

⎕ 30

⎕ 31

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Section C: Teacher’s Perceptions on Classroom Interaction Official Use No. Statement 1.

2.

3.

4.

5.

6.

7.

This child would disturb others in the class This child would be able to answer questions in the class This child would be able to participate in class This child would be able to ask questions in class This child would be lonely in class This child would be isolated from participating in class This child would be able to tell a story

Strongly agree

Agree Uncertain Disagree Strongly disagree ⎕ 32 ⎕ 33

⎕ 34 ⎕ 35

⎕ 36 ⎕ 37

⎕ 38

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Section D: Teacher’s Perceptions on the Device Official Use No. Statement 1.

2.

3.

4.

5.

6.

7. 8.

The way this child ‘talks’ will prevent her from progressing at school The way this child ‘talks’ can be used with other children in my class The way this child ‘talks’ helps others to communicate with her The way this child ‘talks’ is helping her progress at school The way this child ‘talks’ is preventing her from speaking The way this child ‘talks’ can only be used with trained teachers This child takes too long to talk The way this child ‘talks’ is easy to understand

Strongly agree

Agree Uncertain Disagree Strongly disagree ⎕ 39

⎕ 40

⎕ 41

⎕ 42

⎕ 43

⎕ 44

⎕ 45 ⎕ 46

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Section E: Teacher’s Perceptions on Communication Interactions Official Use No. Statement 1.

2.

3.

4. 5.

6.

This child is able to ask for things she needs This child can start a conversation This child will have difficulties in developing personal relationships This child is impolite This child has difficulties in sharing information with others This child is well mannered

Strongly Agree Uncertain agree

Disagree Strongly disagree ⎕ 47

⎕ 48 ⎕ 49

⎕ 50 ⎕ 51

⎕ 52

References Abbott, C., Brown, D., Evett, L., Standen, P., & Wright, J. (2011). Learning Difference and Digital Technologies: A Literature Review of Research Involving Children and Young People Using Assistive Technologies 2007–2010. http:// www.kcl.ac.uk/sspp/departments/education/research/crestem/steg/recentproj/assistivetech.aspx. Alant, E. (2007, August 14). Covering the World of Communication Sciences and Disorders: Training and Intervention in South Africa. The ASHA Leader. Retrieved from http://www.asha.org/Publications/ leader/2007/070814/f070814a1.htm.

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American Speech-Language-Hearing Association. (2015). Augmentative and Alternative Communication. Retrieved from http://www.asha.org/public/ speech/disorders/AAC/. Beck, A. R., Bock, S., Thompson, J. R., & Kosuwan, K. (2002). Influence of Communicative Competence and Augmentative and Alternative Communication Technique on Children’s Attitudes Toward a Peer Who Uses AAC. Augmentative and Alternative Communication, 18, 217–227. https://doi.org/10.1080/07434610212331281301. Beukelman, D. R., & Mirenda, P. (2013). Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs (4th ed.). Baltimore, MD: Paul H. Brooks Publishing. Binger, C., Ball, L., Dietz, A., Kent-Walsh, J., Lasker, J., Lund, S., et al. (2012). Personnel Roles in the AAC Assessment Process. Augmentative and Alternative Communication, 28(4), 278–288. Bornman, J., & Donohue, D. K. (2013). South African Teachers’ Attitudes Toward Learners with Barriers to Learning: Attention-Deficit and Hyperactivity Disorder and Little or No Functional Speech. International Journal of Disability, Development and Education, 60(2), 85–104. https:// doi.org/10.1080/1034912x.2013.786554. Bronfenbrenner, U. (1977). Toward an Experimental Ecology of Human Development. American Psychologist, 32(7), 513. Creswell, J. W., Plano Clark, V. L., Gutmann, M., & Hanson, W. (2003). Advanced Mixed Methods Research Designs. In A. Tashakkori & C. Teddlie (Eds.), Handbook of Mixed Methods in Social and Behavioral Research (pp. 209–240). Thousand Oaks, CA: Sage. Dada, S., & Alant, E. (2001). Teachers’ Attitudes Towards Learners with Little or No Functional Speech Using Augmentative/Alternative Communication Devices. South African Journal of Education, 21, 99–103. Dada, S., & Alant, E. (2002). A Comparative Study of the Attitudes of Teachers at Special and Educationally Inclusive Schools Towards Learners with Little or No Functional Speech Using Communication Devices. South African Journal of Education, 22(3), 213–218. Dada, S., Horn, T., Samuels, A., & Schlosser, R. W. (2016). Children’s Attitudes Toward Interaction with An Unfamiliar Peer with Complex Communication Needs: Comparing High- and Low-Technology Devices. Augmentative and Alternative Communication, 32, 1–7. https://doi.org/10.1 080/07434618.2016.1216597. De Bortoli, T., Arthur-Kelly, M., Foreman, P., Balandin, S., & Mathisen, B. (2011). Complex Contextual Influences on the Communicative Interactions of Students with Multiple and Severe Disabilities. International Journal of

8  A Comparison of Special Education Teachers’ Attitudes …     177

Speech-Language Pathology, 13, 422–435. https://doi.org/10.3109/1754950 7.2011.550691. Department of Education. (2007). Guidelines to Ensure Quality Education and Support in Special Schools and Special School Resource Centres. Pretoria, South Africa: Department of Education. Retrieved from http://www.thutong. doe.gov.za/resourcedownload.aspx?id=37716&ei=NYaOVbjWOOKa7gbF1YP4DA&usg=AFQjCNGnk392PP1WTa_kzhnTQzQC-VJavA&sig2=0s0vUo9xbff2zgsIy7gs2Q. Department of Education. (2010). Guidelines for Inclusive Teaching and Learning. Pretoria, South Africa: Department of Education. Department of Education. (2015). Report on the Implementation of Education White Paper 6 on Inclusive Education. Pretoria, South Africa: Department of Education. Flores, M., Musgrove, K., Renner, S., Hinton, V., Strozier, S., Franklin, S., et al. (2012). A Comparison of Communication Using the Apple iPad© and a Picture-Based System. Augmentative and Alternative Communication, 28, 74–84. https://doi.org/10.3109/07434618.2011.644579. Gorenflo, D. W., & Gorenflo, C. W. (1997). Effects of Synthetic Speech, Gender, and Perceived Similarity on Attitudes Towards The Augmented Communicator. AAC Augmentative and Alternative Communication, 13, 87–91. https://doi.org/10.1080/07434629712331277878. Human Rights Watch. (2015). “Complicit in Exclusion”: South Africa’s Failure to Guarantee an Inclusive Education for Children with Disabilities. Retrieved from https://www.hrw.org/report/2015/08/18/complicit-exclusion/south-africasfailure-guarantee-inclusive-education-children. Jones, B., & Kenward, M. G. (1989). Design and Analysis of Cross-Over Trials: Monographs on Statistics and Applied Probability. New Delhi, London: Thomson Press (India). Kent-Walsh, J., & Light, J. (2003). General Education Teachers’ Experiences with Inclusion of Students Who Use Augmentative and Alternative Communication. Augmentative and Alternative Communication, 19, 104–124. https://doi.org/10.1080/0743461031000112043. Light, J., & McNaughton, D. (2014). Communication Competence for Individuals Who Require Augmentative and Alternative Communication. Augmentative and Alternative Communication, 30, 1–18. https://doi.org/ 10.3109/07434618.2014.885080. Lilienfeld, M., & Alant, E. (2002). Attitudes of Children Toward an Unfamiliar Peer Using an AAC Device with and Without Voice Output. Augmentative and Alternative Communication, 18, 91–101. https://doi.org/1 0.1080/07434610212331281191.

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Lomofsky, L., & Lazarus, S. (2001). South Africa: First Steps in the Development of an Inclusive Education System. Cambridge Journal of Education, 31(3), 303–317. https://doi.org/10.1080/03057640120086585. McCarthy, J., & Light, J. (2005). Attitudes Toward Individuals Who Use Augmentative and Alternative Communication: Research Review. Augmentative and Alternative Communication, 21, 41–55. https://doi.org/1 0.1080/07434610410001699753. McNaughton, D., & Light, J. (2013). The iPad and Mobile Technology Revolution: Benefits and Challenges for Individuals Who Require Augmentative and Alternative Communication. Augmentative and Alternative Communication, 29, 107–116. https://doi.org/10.3109/07434618.2013.784930. Nunally, J. C. (1978). Psychometric Theory (2nd ed.). New York: McGraw-Hill. Popich, E., & Alant, E. (1997). Interaction Between a Teacher and the Non-speaking as Well as Speaking Children in the Classroom. Die SuidAfrikaanse Tydskrif vir Kommunikasie Afwykings, 44, 31–40. Soto, G. (1997). Special Education Teacher Attitudes Toward AAC: Preliminary Survey. Augmentative and Alternative Communication, 13(3), 186–197. https://doi.org/10.1080/07434619712331278008. South African Government. (1996). South African Education Policy Act (Act 27 of 1996). Tönsing, K. M., & Dada, S. (2016). Teachers’ Perceptions of Implementation of Aided AAC to Support Expressive Communication in South African Special Schools: A Pilot Investigation. Augmentative and Alternative Communication, 32(4), 282–304. https://doi.org/10.1080/07434618.2016.1246609. Van Niekerk, K., Dada, S., & Tönsing, K. (2017/in press). Influences on Provision of Assistive Technology to Young Children in South Africa: Perspectives from Rehabilitation Professionals. Disability and Rehabilitation. Wang, D., & Bakhai, A. (2006). Clinical Trials: A Practical Guide to Design, Analysis, and Reporting. London: Remetica. Watson Hyatt, G. (2011). The iPad: A Cool Communicator on the Go. Perspectives on Augmentative and Alternative Communication, 20, 24–27. https://doi.org/10.1044/aac20.1.24.

9 The Continuing Need for Child-Led Approaches Within Inclusive Systems: A Focus on Transition Across 8 European Countries John Ravenscroft, John M. Davis and Lynn J. McNair

Introduction The central goal of the United Nations Education, Scientific and Cultural Organization (UNESCO) Education 2030, Education Framework for Action is to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all” (UNESCO 2015). An important tenet in this framework is the need that by 2030 all children should have access to free, equitable, and quality primary and secondary education leading to relevant and effective learning outcomes. Moreover, by 2030, equal access to all levels of education and vocational J. Ravenscroft (*) · L. J. McNair  University of Edinburgh, Edinburgh, UK e-mail: [email protected] L. J. McNair e-mail: [email protected] J. M. Davis  School of Education, University of Strathclyde, Glasgow, UK e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_9

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training needs to be ensured for those children that are considered vulnerable, including children with disabilities. The European Commission’s European Disability Strategy (2010–2020) also aims to empower people with disabilities so they can enjoy full equal rights and benefit fully from participating in society and in the European economy (European Commission 2010). Similar to the UNESCO goal, the focus of the European strategy is on eliminating barriers, in areas such as accessibility, participation, equality, employment, and education and training. However, although progress is being made on achieving these aims this chapter will examine some of the main themes that appear to be necessary to ensure that participation at least is achieved, especially for children with disabilities across eight European countries. It has really only been a modern concept within the sociology of children that children were actually seen as social agents who influenced the structures around them (James and Prout 1990). Prior to this we saw, typically, professional-led interventions, which at best took note of parental concerns or at worst dismissed parent and children’s wishes by the only professional present who “knew best.” But with this, and other human right approaches to supporting children and families, a shift over time has gradually highlighted the need for professionals to question dated concepts from both psychology and sociology that dismissed notions of normalization or age and stage progression (Davis 2006; McNair 2016). International and national governments, particularly around Europe, have tried over the past few decades to secure approaches through governmental policies, acts, and guidelines that do not define families as abnormal, deficient, needy, or as a subject of charity (Moss et al. 2000; Smith and Davis 2010; Davis 2011) but see families as having abilities, strengths, with all members having formed identities and opinions that need to be placed at the forefront of any support (Davis et al. 2015). Within Scotland, support for children is underpinned by the central elements and values of “Getting it Right for Every Child” (GIRFEC) (Education Scotland 2017). This is a national government approach to improve the well-being of children and young people. Central to GIRFEC is that it aims to put the best interests of the child at the heart of decision-making while taking a holistic approach to the well-being

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of a child. Practitioners work with children, young people, and their families on ways to improve well-being and GIRFEC advocates preventative work and early intervention to support children, young people, and their families. GIRFEC in theory is an approach that is designed to be flexible to support all children and families whatever their need and whenever they need it. Being child-centered, placing children at the center, getting it right for every child, every child matters and other terms that we use when we discuss child-led participation are based typically within ecological models of support such as GIRFEC. However, some professionals have taken this to mean that they should adopt a much more medicalized model and use child development to utilize child’s pathologies (Alderson 2000). Child-led participation we have found has often been confused with individualized approaches. Professionals have mistakenly reduced children’s life experiences to a single psychological/ individual cause. For example, individual support can be offered in schools but a child’s problems may relate to the behavior of professionals or other children, e.g., bullying. We still see how individualized approaches to childhood involve children being judged against normative criteria of how they should individually behave (Dahlberg 2007). In Scotland, for example, there has been resurgence with national assessment scales measuring children much earlier as a result of the analysis of the Programme for International Student Assessment (PISA) scores. This, coupled with constant assessment on specific behaviors (swinging on chairs, inattention, opposition to adult views), has led to privilege professional/adult views over those of children and young people and, consequently, has seen a shift from what appears initially to be childled participatory processes in line with international rights (UNCRC) to more professional powered processes. Without doubt, children and young people’s rights to participate are replicated and are inserted into various legal and policy documents across all European countries. We can see a wide range of structures that promote and recognize children and young people’s opinions. These include policies, and acts of laws to school councils, and consultation events (Hill 1997) in the UK highlights a long history in the promotion of children’s rights and indeed, children and young people’s

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participation became a funding stream for organizations and a source of policy and service leverage (Tisdall and Davis 2004). But is this exactly part of the problem? Are organizations, charities, policymakers treating the views and opinions of children and young people as a commodity which can be traded for cash in terms of grants or additional funding? For example, are the views that are collected as part of a consultation approach, either for product development or policy enhancement, genuinely respected and treated on par as those of adults? When children are part of a consultation response, are all children fully represented? We know that younger children are often excluded from taking part (Burke 2010; Clark et al. 2003). So, although great strides have been made in terms of listening to the views of children and young people within the UK and indeed across Europe, debate still exists over whether participation is actually transformative, has impact and leads to outcomes that are tangible. Tisdall et al. (2008) suggest there are four types of systems, which have been developed to promote children and young people’s participation (Tisdall 2011). The first system lies within international and national legal frameworks in that seeking the views and opinions of children and young people through participation activities conforms to the legal responsibilities and international obligations of that country. The second inclusive system relates to consumer and service user involvement where the argument is that the views and opinions of children and young people will make services and policy more effective and efficient. Tisdall et al. (2008) further argue that the third inclusive system stems around formal political engagement such as youth parliaments and councils, which focus around citizenship education and youth involvement, and the fourth system leads to an overall focus of well-being for the participating child. This last system will be the remaining topic of the chapter and will explore inclusion, transition, and listening to the voice of children with disabilities through the lens of what we commonly have seen referred to as an ecological model of school transition. We will argue that not only does transition involve universal structures around the child (cultural, ecological, and material), but that most importantly, transition, if successful, needs to listen and take seriously the views of children and parents during the process. We

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will examine this from a European perspective involving eight European countries that have tried to implement local, national, and international policies and procedures that on face value place the child at the center and formulate around a model similar to GIRFEC.

Literature Review and Related Theories In order to understand the position, this chapter takes it is important to first of all start with the ecology model. The term “ecology” was initially applied by Ernst Haeckel in 1868 to refer to interdependencies among organisms in the natural world (Ungar 2002). A more detailed description was provided by the progressive ecological theorist Naess (1989), who interpreted ecology as an: Interdisciplinary scientific study of the living conditions of organisms in interaction with each other and with the surroundings, both organic as well as inorganic (Naess 1989, p. 36). Considering both Haeckel (1868) and Naess’s (1989) interpretations, ecology can easily be traced to biological theories that explain the adaptation of organisms to their environments. For example, when the child enters each new situation, such as a school, he or she adapts their requirements and changes the situation by their presence. The child is perpetually creating, restructuring, and adapting to the environment. It is argued that because of this there is an easy fit between the science of ecology and young children’s transitions (Fabian and Dunlop 2002; McNair 2016). In the late 1970s, the Russian-American psychologist Urie Bronfenbrenner (known as the father of transitions) introduced the Ecological Systems theory as an explanation of the process. Bronfenbrenner’s ecological theory attracted considerable interest when he shared his view that in order to understand human development one must consider the whole ecological system in which growth occurs. Ungar (2002) claimed Bronfenbrenner (1979) “…pushed the ecological perspective to a respectable position in psychology” (Ungar 2002, p. 485). Bronfenbrenner’s model includes several propositions described as “sets of ideas” to promote a “dynamic, person-context relational view of

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the process of human development” Lerner (2005, p. xviii). The first proposition was described by Bronfenbrenner as being the “cornerstone” of a broader bioecological systems theory (e.g., Bronfenbrenner 2005) and makes reference to the progressive, mutual accommodation, throughout the life course, between an active, growing human being and the changing properties of the immediate settings in which the developing person lives, as this process is affected by the relations between these settings, and by the larger contexts in which the settings are embedded. (Bronfenbrenner 2005, p. 107 (original italics)

The synthesis between the active individual and the changing context was conceptualized by Bronfenbrenner as a series of nested systems to reflect their dynamic relationships within a given ecology. The context within which individual development takes place within this structure is commonly represented in the literature as a series of concentric circles situated around a developing individual with each circle referring to nested but separate “systems” to reflect this ecology (e.g., Anderson et al. 2014; McLinden and McCracken 2016). This theory is also known as a child-centered approach (to transition) as the child is depicted in the center of the spheres, also known as interactional processes between family members. Bronfenbrenner suggested that transition occurred when the child’s position in the environment “is altered as a result of a change in role, setting or both” (Bronfenbrenner 1979, p. 26). Children within this model are viewed as situated in a social world that is interconnected. The salient features of this theory represent a sociocultural view of development that does not solely focus on children’s development, but also includes direct interaction with social agents, broad-based inputs of culture and socio-linguistic influences (Bamber 1998; Fabian and Dunlop 2002; Dockett and Perry 2001). The wider social structural context is defined as the microsystem of the child’s family, home, community, and school; the mesosystem, which connects two microsystems in interaction; the exosystem, external environments which directly influence the child, for example, a parent’s workplace that affects family

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life; the macrosystem, cultural influences on the child such as attitudes and ideologies of home culture and the chronosystem, the patterning of environmental events and transitions over the child’s life, for example, divorce (Hetherington et al. 1998). The ecological model pictures the child as an agent of his/her own and the world’s construction, but whose agency develops in the context of an unchanging social and historical praxis, which includes both the (rigidly compartmentalized) “constraints and potentialities of nature, and the action of other agents” (Aubrey et al. 2006, pp. 202–203). Transition scholars have drawn upon Bronfenbrenner’s ideas as a source of inspiration (e.g., Dockett and Perry 1999; Rogoff 2003; Fabian and Dunlop 2006). Transition theory, which includes peers, family, schools, and the community, is testimony to Bronfenbrenner’s work (Hannah et al. 2010). However, approaches which focus on the structural issues of transition have been contrasted with writing that highlights the importance of children’s individual attributes and argues that children’s experiences depend on their coping strategies and how they individually react to the putative (assumed) characteristics of settings (Chambon and Irving 1994; Griebel and Neisal 2013). Such work suggests that there is a need to investigate the child’s interpretation of transition. Notably, the child’s voice is missing from Bronfenbrenner’s theory as his work tends to characterize children as passive objects of adult ideas and practices (McNair 2016). This is synonymous with mechanistic systems models, where little attention is paid to social determinants of the phenomena of ecology (Tudge et al. 2009). Similarly, while it is true that Bronfenbrenner can be credited with inspiring discussions on peer relations, this appears limited to particular groups of children who experience “good ecology” based on a proposed set of Western values (Bookchin 1980). Bronfenbrenner’s work is generally inattentive to the processes and pathways available for children at psychological risk, whose circumstances raise questions about “a good ecology” (Werner and Smith 1992). Writers have questioned this view and argue that during transition, children construct their own understandings mediated by relations with others (Rogoff 2003; Woodhead 2005). Children’s experiences are dependent on many things, such as

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the view that the teacher holds of the child and the fallibility of human judgment (Pianta et al. 1999)—as well as how, or if, the teacher can promote a positive approach to learning (Serdal 2010). The point is that children do not operate independently, but engage interdependently (Cocks 2006). Transitions across childhood can also be considered cultural, community events that occur as individuals change their roles in their community structure. While Rogoff (2003) and Bronfenbrenner’s (1979) ideas are conceptually similar, Rogoff (2003), in an attempt to resolve Bronfenbrenner’s shortcomings, evolved and built upon his somewhat rigid position to suggest that transition is complex, fluid and embedded within a web of relationships. Rogoff (2003) disagreed with the view (suggested by Pianta and Kraft-Sayre 1999) that the child is solely at the center and advanced the idea that the child is integral to different sites within the community. Rogoff (2003) further argued that the child moves in between and around people and places, crossing boundaries and developing complex identities (also MacNaughton 2002). This argument raised questions about how and where we research childhood transition and whether we can learn something from comparing different sites of transition. Thinking about the community, rather than the individual, Rogoff (2003) promoted the idea that, rather than the child fitting into systems, the child and the community were mutually involved. She suggested that the child moved between systems and structures in communities and that children adapted to the “role” of the school child. Rogoff (2003) suggested that transition was consequential, relational, and interactional. Corsaro and Molinari (2005) express similar sentiments to Rogoff (2003), as both authors analyze the relationships between education and socialization and the historical and cultural surroundings that influence young lives. Such work hints at the complexity of community relationships and argues that the “solidarity” of the community, such as trust, strong bonds, commitment, continuity, and dialogue, supports children to negotiate change from one stage of childhood to another, over time and from generation to generation (Corsaro and Molinari 2005). Research based on this perspective emphasizes the dynamic nature of childhood. Corsaro and Molinari’s work in Modena, Italy, indicated

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that children were visible and they had pride and participatory power. Their sense of belonging was promoted and they were not closed away in homes or children’s play spaces. They were viewed as integral to the full life of the city and exuberantly included in civic life. For these writers, children are active actors of their own socialization and are dynamic in assessing, altering, and contributing to the societal circumstances they find themselves in (Corsaro and Molinari 2005; Cocks 2006). This more fluid way of viewing children contrasts with the rigid “structures” of ecology theory. Bronfenbrenner can be credited for inspiring discussions about the variables that affect the child. At the same time, his own work is generally inattentive to the voices of the child and parents. There is also a paucity in data examining what we can learn from children with complex support needs and their parents, in the transition process when exiting from existing segregated systems into proactive innovative learning environments for all learners. This learning, from children with additional support needs (in Scotland this term is used rather than special needs) which formed the basis of our research program, should enable the transition of children to go beyond simple mainstreaming to a shared mutual learning benefit for students with and without disabilities alike while also, hopefully, filling in some of the gaps that are apparent in the ecological model.

Methodology Our research program is known as Facilitating Inclusive Education and Supporting the Transition Agenda (FIESTA) funded by the European Audio-Visual and Culture Executive Agency. FIESTA had, at its core, two fundamental research aims, which were to examine examples of Best Practice identification of children with additional support requirements who transitioned into first year of mainstream primary school from either a specialized environment or a mainstream early years environment and to pinpoint examples of Best Practice identification of children with additional support requirements who transitioned from mainstream primary to mainstream secondary school across Europe.

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It is important to note that the FIESTA program did not initially set out to actively research the gap within the ecological model of listening to children, however, the results from this program have clear implications for those practitioners working within such a framework. We used a mixed method approach utilizing a large parent online questionnaire with individual interviews of parents and children across the participating countries, which were Bulgaria, Cyprus, Greece, Ireland, the Netherlands, Romania, Spain, and the UK. For each country, we also held practitioner focus groups resulting in a total of 173 practitioners who were involved in the cross-European focus group sessions. The consortium of the 8 European countries was constructed from partners where each partner within each country demonstrated awareness of the importance of transition and the role of team working around the child in achieving inclusion for children with additional support needs. The aim of the interviews for parents and focus groups for practitioners was to deepen the understanding of the elements constituting best practice and back up quantitative findings with a greater level of depth and detail. This was an important step in the procedure, as it offered the possibility to focus on areas that had not yet been covered in the quantitative questionnaires. Local schools from each of the countries acted on FIESTA’s behalf to identify parents and children who wished to participate, providing them with information sheets and consent forms given to them by each partner organization. To collect our qualitative data, the European research teams in each of the partner countries were required to conduct 2 interviews with children and parents from pre-primary to primary and 2 interviews with children and parents who had transitioned from primary to secondary education level. A reporting template was used for both the focus groups and the child and parent interviews. Each partner country research teams met to interview children and parents. A total of 25 children and 26 parents were interviewed. A full report of this study can be seen in Davis et al. (2015). To collect our quantitative data, the parent survey was conducted online through Survey Monkey and the parents and children had the

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option to conduct their surveys in English, Bulgarian, Romanian, Catalonian, or Greek. The survey consisted of 41 questions (40 questions used in the analysis) initially developed and built upon previous questionnaires developed by Davis (2013) and Davis et al. (2014). A full explanation of the method and analysis can be seen in Ravenscroft et al. (2017). 306 parents and children, ranging from 3–13 years, with additional support needs, from Bulgaria, Cyprus, Greece, Ireland, the Netherlands, Romania, Spain, and the UK participated in the online survey.

Results and Discussion The Dominant Discourse of Professional Expertise: Non-collaborative Working Analyzing data from the practitioner focus groups, we found in some instances that some forms of transition were often associated with professional expertise rather than that of the child or parent. For example, quotes such as those from a Romanian Psychologist, a Dutch Health Professional, and an Irish teacher were typical examples of professional-led practice. Everybody is well acquainted with the basic concepts related to a child’s development, its stages etc. We are experts in this field. (Psychologist, Romania)

A 12 year old is not fully capable of making a well-considered decision. They can make nice decisions about a nice building and that is where my girlfriend goes to. But I do think that the parents are more capable of making the decision of what is better for the child. A 12 year old does not yet have the overall picture of what is better in the long term (Netherlands, Health Professional). You have up to 30 odd children apart from it being difficult for the rest of the class its semi-abusive for the child in the class. As a promoter of inclusion of children with disability, I would promote inclusion within the community but you have to be sensible about it as well (Early Intervention Educator, Ireland).

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So even working within an ecological model it appears that some practitioners tended not to seek children’s views, “Nobody asked for my opinion” said a pupil from Romania, and a common theme that arose from some of these focus groups was that children were seen to be too immature to be involved in decision-making or that practitioners did not respond to child-initiated requests. Well, I also quite often went to my care coordinator about that door, so many times that I am fed up with it because that door is driving me insane. He keeps saying that he did something about it, but nothing changes so then at some point I was just like; forget it (The Netherlands, Pupil). It is not clear from our results which themes of dominant professional discourse or the perception of children being too immature to participate have led to each other, but the study suggests that these two themes are intertwined and therefore it may not be too surprising if those practitioners hold a dominant discourse of professional expertise also see children as not having the “adult” capacity to participate in activities that affect them. The FIESTA research program argued that deficit model approaches based on the concept that the professional knows best, prevent processes of transition from being based on the aspirations, views, and ideas of parents and children. The “professional expert” model also prevents collaboration between different professionals and a shift in power relations in local settings (e.g., that enable disabled children to adopt leadership roles). It illustrated that professionals connect Best Practice on transition to issues of rights, equity, and flexible pedagogy and that transition is not a linear process but rather is holistic and requires a collaborative approach. It also demonstrated a need for increased training on transition. In particular, it recommended that participants discuss the implications of different conceptual approaches and recognize where they inhibit or support collaborative planning.

Putting the Child at the Center: Collaborative Working The above are examples of where practitioners did not listen to children, however, we do not want to give the impression that this was always the case, far from it. We are happy to report that there were many instances

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where listening to children did occur. For example, children and families had very positive views of collaborative working within an ecological model and saw such relationships as beneficial, positive, and functioning. A school principal in Romania argued that in joined up working and thinking it placed children “in the centre of… activity as main actors and developing appropriate educational strategies.” Similarly, from Scotland. Yeah, I believe it to be a child’s right, you know, inclusion for everyone but for adults as well. And…if we were doing a group experience or something with the children, we give the children the choice if they want to join in, you know. So it’s up to them if they want to be included or not. Just, you know, I have seen in the past, you know, everyone must gather at the same time for register or storybooks. But here we tend to give the children the choice. Well we always give the children the choice [laughs], if they want to. They don’t have to, you know, that’s fine, that’s their choice. If they want to be on their own, play in the garden. (Scottish Nursery, Professional)

As such, our qualitative data suggest that there is a mixed approach to listening to children within ecological models across Europe and this supports the main contention of this chapter in that there is a continuing need for child-led approaches and that we continue to focus and take seriously the transformative impact that children’s voices have. The FIESTA research project stressed the importance of participation and involvement, suggesting there were problems with professional-led transition and contrasted it with parent partnership and child-led/ peer-support transition. It concluded there was a need for holistic professional collaboration, clear avenues of communication, and supportive policies on information sharing, shared goals, timely evaluation, strong relationships, whole community support, and contemporary training for professional staff on best participatory practice.

Enabling and Ethos We analyzed our quantitative data by using principal component analysis and subsequent factor analysis, which identified that schools which have a child inclusive ethos results in children participating in wider

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school and community activities and are enablers for greater successful transitioning from one environment to another. Positive transition and inclusion for all resulted in children having autonomy and led activities of transition and that children with complex support needs aspired to be treated the same as other children, including leading on activities of transition. Giving children the autonomy to do this affords children different contexts where they can have participatory engagement during the transition process. Children’s involvement in decision-making, frequency of school visits prior to transition, and the children’s involvement in defining the transition goals were all contributors in a positive transition. Creating the correct enabling ethos that allows, for example, child autonomy clearly appears to be important for successful transition and highlights the needs for this to be part of any core planning processes.

Structural and Cultural Inclusion The FIESTA qualitative and quantitative data analysis showed that structural and cultural inclusion, through planning and coordination, flexible timetables, increased partnership relations during the transition planning cycle rather than a focus on impairment appears to be important for successful transition. Parents’ satisfaction with resources and information provided by the school, the frequency of review of educational plan and the extent the transition plan was developed ahead of time provide support in ensuring positive transition. The research program demonstrated the need to have accessible structures (including accessible equipment, staffing schedules, training) and to have flexible local and national policies. It concluded that Best Practice involved early planning, local dialogue, and flexible pedagogy and once again confirmed the view that transition is not linear but is a holistic process. It argued that parents and children should receive tailored rather than generic documentations and that they can be active participants in designing, planning, reviewing, and implementing adaptations that aim to promote transition. Children who participated in the project identified positive transition with “equal opportunities,” accessible buildings and being able to participate in as full a range of activities as possible.

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The Unheard Voices of Children and Parents in an Age and Stage Model: The Influence of Power Other research into transition comes to similar findings. The third author of this chapter, McNair’s research at the University of Edinburgh (McNair 2016), illustrated that the voices of children and their parents were not routinely included in transition policy formation, resulting in them being excluded from the process. This was particularly notable with reference to children’s age and school starting times. School starting age, it emerged, was fundamental to transition (Crnic and Lamberty 1994). With some children accepting that when they were five years old they would go to school, it was their rite of passage, while other children expressed they would appreciate more say in when they started school. This is important, as children were verbally articulate on why they wanted or did not want to go to school—the reasons they gave were rational and logical (Tisdall et al. 2008). This suggested that children proactively made decisions about their preferences in going to school. In connection with this, McNair’s analysis showed that policymakers made assumptions about what children could do at a specific age and subsequently children were homogenized (Sher 2013). McNair’s research focused in particular upon the deferral systems in place and the formal written applications made by parents to the local authority. One of the main objectives of the deferral system, in the local authority McNair studied, was to reduce deferrals in the forthcoming year. She discovered a flaw in the system from a children’s rights perspective: Policymakers and those in authority (people unknown to the child) made life-changing decisions to suit the system not the child. This illustrated a clear example of power exercised over children and parents as an increasing number of requests were arbitrarily refused annually. Further, it emerged that transition policies in early years settings and schools, although well intended, were not enacted. It is important to note that this lack of enactment was not due, in any respect, to the professionals involved. McNair’s analysis found that professionals were unable to do all that was asked of them because of pressures on their time and that some parents who applied for something out with normal

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regulatory practices, such as a request for a later school start, found themselves oppressed by the system (being made to feel they were asking too much and having their worldviews denied). As a result, parental requests were frequently overlooked, quashed, or ignored by authoritative decision-makers. Deferral requests were passed hierarchically within the system to people unknown to the children and parents and subsequently rejected. As argued by Davis and Smith (2012), children and their parents should be fully involved in participatory assessment, planning, and service delivery. The consequences of rejected deferrals were highly significant to the children and the families, but of no consequence to the decision-makers, who argued “that each child’s needs can now be delivered in school.” McNair’s data suggested that there was room for more flexible approaches, especially in relation to how policy was interpreted and enacted. McNair found that a lack of flexibility did not take into consideration the differences and diversity of children. Early years, professionals (e.g., childhood practitioners) and school teachers voiced frustration with the inflexible system and demonstrated a desire to change inflexible practices that were ignored by children’s service managers within the system. Some argued that children were too young to start school but they also felt that oppressive and hierarchical practices in local authorities prevented democratic and participatory change. While she identified a yearning for change, McNair concluded that any movement on starting age and flexibility of provisions would have to coincide with better development on honesty and trust concerning transition processes in local authorities.

The Resistance of Hierarchical Agendas By way of solution, McNair calls for open-ended education where children are encouraged to resist hierarchical agendas. She stated, “I am inclined to wonder what the classroom would look like if dialogic pedagogy existed and children participated in the making of those rules, and even if the word ‘rules’ could be exchanged for ‘values.’” Teachers were not totally compliant with local authority rigid transition approaches,

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indeed they illustrated that they were reflexive and willing to change. They desired freedom to be more creative, specifically in areas of curriculum and assessment. The teachers congregated in secret assemblies, such as primary heads meetings, to discuss the lack of freedom they had with matters affecting their school, such as areas of assessment. This lack of freedom manifested itself into reactions of opposition such as making the council “wait” for baseline information. Similarly, McNair found that children chose when to follow and when not to follow instruction. In this way, the mechanisms the teachers used sometimes failed to achieve their purpose (Cassidy 2005) but often rebellion by children came at a punitive cost. Interestingly, resistance did not necessarily always lead to conflict, instead the children found creative ways to limit power. McNair argued children had grasped the art of political disguise, as they moved between being compliant and being free. The children illustrated an experimental spirit in going against teachers’ orders, changing behaviors outside surveillance. Professionals and parents were sometimes won over, or colluded with, children’s resistance. Some children and parents did turn to resistance in order to decrease the authority the school had over them (White 2016). For example, some parents and professionals challenged the way the curriculum was executed, arguing that the pedagogy was formulaic. Our research compliments the findings of Thomson’s (2016) which concluded that the different actors involved in transition processes placed different levels of importance on different aspects of transition but that a key difference was that teachers placed emphasis on classroom management approaches whereas other adults were concerned with the health and well-being aspects of transition. She summed this health, well-being, and education connection up by stating: Children aspire to maintain existing and build new friendships, to extend their learning in an enjoyable context which supports their autonomy, and for their prior learning to be recognised and valued when making the transition to school. Families aspire for their children to have positive educational outcomes, to be happy and successful at school, to have friends and to be respected as individuals. Families also want to contribute to their children’s education through the development of trusting, respectful and reciprocal relationships. (Thomson 2016, p. 70)

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Thomson concluded that teachers lacked an understanding of the importance of child-centered and play-based learning environments. Her work suggests that in so doing, teachers fail to fully engage with the perspectives of the other actors involved in transition processes.

Conclusion The conclusion from the main studies reported here McNair (2016) and FIESTA (Ravenscroft et al. 2017; Davis et al. 2015) is twofold and has uncovered a hidden social approach to the nature of disabilities and about the nature of childhood identity when working within accepted ecological models The first is that while, we as professionals are happy to acknowledge that we are working within a child-centered, ecological approach, we may not actually be paying attention to the transformative impact of children and young people’s voices. It is possible that we have become deluded in thinking that we have actually positioned children at the forefront of our work as the various ecological models suggest but as research indicates, we may not be doing so. It is deluded in the sense for the following points; (a) as professional-led approaches still play a part in modern-day transition. (b) individualized approaches to childhood still involve children being judged against normative criteria, and finally, (c) as working collaboratively within ecological frameworks has lulled us into thinking we are actually listening to children and young people but are not. Our second conclusion is much more positive. It is possible to develop a combination of child-led and parental-led transition but professionals need to be supported with flexible structures not oppressive top-down systems—professionals need to be freed up from the need to comply with rigid baseline testing and focus on issues of participation, rights, and creativity. By doing so, we give the children’s voice a chance to have the transformative impact they deserve.

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References Alderson, P. (2000). Young Children’s Rights: Exploring Beliefs, Principle and Practice. London: Jessica Kingsley. Anderson, J., Boyle C., & Deppeler J. (2014). The Ecology of Inclusive Education—Reconceptualising Bronfenbrenner. In H. Zhang, P. Wing, K. Chan, & C. Boyle (Eds.), Equality in Education: Fairness and Inclusion. Rotterdam, Netherlands: Sense Publishers. Aubrey, C., David, T., Godfrey, R., & Thompson, L. (2006). Early Childhood Educational Research. London and New York: Routledge. Bamber, J. (1998). Learning, Understanding and the Development of Critical Practice, Youth and Policy. The Journal of Critical Analysis, 60, 30–45. Bronfenbrenner, U. (1979). The Ecology of Human Development: Experiments by Nature and Design. Cambridge, MA: Harvard University Press. Bronfenbrenner, U. (2005). Making Human Beings Human: Bioecological Perspectives on Human Development. Thousand Oaks, CA: Sage. Bookchin, M. (1980). Toward an Ecological Society. Montreal: Black Rose. Burke, T. (2010). Anyone Listening? Evidence of Children and Young People’s Participation in England. London: Participation Works. Cassidy, M. (2005). They Do It Anyway’: A Study of Primary 1 Teachers’ Perceptions of Children’s Transition into Primary Education. Early Years. Journal of International Research and Development, 25(2), 143–153. Chambon, A. S., & Irving, A. (Eds.). (1994). Essays on Postmodernism and Social Work. Toronto: Canadian Scholars’ Press. Clark, A., McQuail, S., & Moss, P. (2003). Exploring the Field of Listening to and Consulting with Young Children. London: Department for Education and Skills. Cocks, A. J. (2006). The Ethical Maze: Finding an Inclusive Oath Towards Gaining Children’s Agreement to Research Participation. Childhood, 13(2), 247–266. Corsaro, W., & Molinari, L. (2005). I Compagni: Understanding Children’s Transition from Preschool to Elementary School. New York: Teachers College, Columbia University. Crnic, K., & Lamberty, G. (1994). Reconsidering School Readiness: Conceptual and Applied Perspectives. Early Education and Development, 5(2), 91–105. Dahlberg, L. (2007). Rethinking the Fragmentation of the Cyberpublic: From Consensus to Contestation. New Media & Society, 9(5), 827–847.

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Davis, J. M. (2006). Disability, Childhood Studies and the Construction of Medical Discourses: Questioning Attention Deficit Hyperactivity Disorder; A Theoretical Perspective. In G. Lloyd, J. Stead, & D. Cohen (Eds.), Critical New Perspectives on ADHD. London: Taylor and Francis. Davis, J. M. (2011). Integrated Children Services. London: Sage. Davis, J. M. (2013). Supporting Creativity, Inclusion and Collaborative MultiProfessional Learning. Improving Schools, 16(1), 5–20. Davis, J. M., Bell, A., & Pearce, M. (2014). Taking the First Steps–Is Childhood Practice Working. Dundee: SSSC. Davis, J. M., Ravenscroft, J., & Bizas, N. (2015). Transition, Inclusion and Partnership: Child-, Parent- and Professional-Led Approaches in a European Research Project. Child Care in Practice, 21(1), 33–49. Davis, J. M., & Smith, M. (2012). Working in Multi-professional Contexts: A Practical Guide for Professionals in Children’s Services. London: Sage. Dockett, S., & Perry, B. (1999). Starting School: What matters for children, parents and educators? AECA Research in Practice Series, 6(3), 1–18. Dockett, S., & Perry, B. (2001). Starting School: Effective Transitions. Early Childhood Research and Practice, 3(2). http://ecrp.uiuc.edu/v3n2/dockett. html. Education Scotland. (2017). Getting It Right For Every Child. Accessed October 1, 2017, from https://education.gov.scot/scottish-education-system/ policy-for-scottish-education/policy-drivers/Getting%20It%20Right%20 For%20Every%20Child%20(GIRFEC). European Commission. (2010). Communication from the Commission to the European Parliament, the Council and the Committee of the Regions. European Disability Strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe. Accessed October 1, 2017, from https://www.eular.org/myUploadData/files/EU_Comission_EU_Disability_Strategy_2010-2020.pdf. Fabian, H., & Dunlop, A.-W. (Eds.). (2002). Transitions in the Early Years. Debating Continuity Progression for Children in Early Education. London: Roultedge/Falmer. Fabian, H., & Dunlop, A.-W. (2006). Outcomes of Good Practice in Transition Processes for Children Entering Primary School. Background Paper Prepared for the Education for All Global Monitoring Report 2007. United Nations Educational, Scientific and Cultural Organisation. Griebel, W., & Neisal, R. (2013). The Development of Parents in Their First Child’s Development to Primary School. In K. Margetts & A. Keining (Eds.), International Perspectives on Transition to School: Reconceptualising Beliefs, Policy and Practice. London: Routledge.

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Haeckel, E. H. (1868). Natural History of Creation (History of Creation, ER Lankester). Kings, London, England, UK, 2. Hannah, E., Gorton, H., & Jindal-Snape, D. (2010). Small Steps: Perspectives on Understanding and Supporting Children Starting School in Scotland. In D. Jindal-Snape (Ed.), Educational Transitions: Moving Stories from Around the World (pp. 51–67). New York: Routledge. Hetherington, E. M., Bridges, M., & Insabella, G. M. (1998). What Matters? What Does Not? Five Perspectives on the Association Between Marital Transitions and Children’s Adjustment. American Psychologist, 53, 167–184. Hill, M. (1997). The Policy Process in the Modern State (3rd ed.). Herts: Prentice Hall. James, A., & Prout, A. (1990). Constructing and Reconstructing Childhood: New Directions in the Sociological Study of Childhood (2nd Ed (1997) Published by Routledge ed.). Oxford: Routledge. Lerner, G. (2005). The Majority Finds Its Past: Placing Women in History. UNC Press Books. MacNaughton, S. (2002). Meeting of Minds. Wellington: NZL Learning Media. McLinden, M., & McCracken, W. (2016). Review of the Visiting Teachers Service for Children with Hearing and Visual Impairment in Supporting Inclusive Educational Practice in Ireland: Examining Stakeholder Feedback Through an Ecological Systems Theory. European Journal of Special Needs Education, 31(4), 472–488. McNair, L. J. (2016). Rules, Rules, Rules, and We’re Not Allowed to Skip. Ph.D. thesis. Accessed October 4, 2017, from https://www.era.lib.ed.ac.uk/bitstream/handle/1842/22942/McNair2016.pdf?sequence=3. Moss, P., Dillon, J., & Statham, J. (2000). The ‘Child in Need’ and ‘the Rich Child’: Discourses, Constructions and Practice. Critical Social Policy, 20(2), 233. Naess, A. (1989). Ecology, Community, and Lifestyle: Outline of an Ecosophy (D. Rothenberg, Trans. and Rev.). Cambridge: Cambridge University Press. Pianta, R. C., Cox, M. J., Taylor, L., & Early, D. (1999). Kindergarten Teachers Practices Related to the Transition to School: Results of a National Survey. The Elementary School Journal, 100(1), 71–86. The University of Chicago Press. Pianta, R. C., & Kraft-Sayre, M. E. (1999, May). Parents’ Observations About Their Children’s Transitions to Kindergarten. Young Children, 54(3), 47–52. Ravenscroft, J., Wazny, K., & Davis, J. M. (2017). Factors Associated with Successful Transition Among Children with Disabilities in Eight European Countries. PLoS ONE, 12(6), e0179904.

200     J. Ravenscroft et al.

Rogoff, B. (2003). The Cultural Nature of Human Development. Oxford: Oxford University Press. Serdal, S. (2010). Attachment and Social Behaviours in the Period of Transition from Preschool to First Grade. Journal of Social Behavior and Personality, 38, 347–356. Sher, J. (2013). Somebody’s Daughter: The Hidden Story of America’s Prostituted Children and the Battle to Save Them. Chicago: Chicago Review Press. Smith, M., & Davis, J. M. (2010). Constructions of Family Support: Lessons from the Field. Administration Journal of the Institute of Public Administration: Ireland, 58, 69–83. Tisdall, E. K. M. (2011). Taking Forward Children and Young People’s Participation. In M. Hill, G. Head, A. Lockyer, B. Reid, & R. Taylor (Eds.), Integrated Working in Children’s Services. Harlow: Pearson. Tisdall, E. K. M., & Davis, J. (2004). Making a Difference? Bringing Children’s and Young People’s Views into Policy-Making. Children and Society, 18(2), 131–142. Tisdall, E. K. M., Davis, J. M., & Gallagher, M. (2008). Reflecting Upon Children and Young People’s Participation in the UK. International Journal of Children’s Rights, 16(3), 419–429. Thomson, K. (2016). What Matters Most to Children in the Transition to School? Child-Centred Transitions to School Involving Parents, Pre-school and School Educators Should Be Our Focus in Scotland. Glasgow: Strathclyde University. Tudge, J. R. H., Mokrova, I., Hatfield, B. E., & Karnik, R. B. (2009). Uses and Misuses of Bronfenbrenner’s Bioecological Theory of Human Development. Journal of Family Theory and Review, 1(4), 198–210. Ungar, M. (2002). A Deeper, More Social Ecological Social Work Practice. Social Service Review, 76(3), 480–497. UNESCO. (2015). Education 2030. Incheon Declaration and Framework for Action for the implementation of Sustainable Development Goal 4. Accessed October 1, 2017, from http://uis.unesco.org/sites/default/files/documents/ education-2030-incheon-framework-for-action-implementation-of-sdg42016-en_2.pdf. Werner, E. E., & Smith, R. S. (1992). Overcoming the Odds: High Risk Children from Birth to Adulthood. Ithaca, NY: Cornell University Press. White, E. J. (2016). Introducing Dialogic Pedagogy: Provocations for Early Years. Oxon: Routledge. Woodhead, M. (2005). Early Childhood Development: A Question of Rights. International Journal of Early Childhood, 37(3), 79–98.

10 Improving Inclusion and Access for People with Disability in the Causasus: The Case of Azerbaijan Mike Titterton and Helen Smart

Introduction The challenges and prospects for transforming services and support, along with inclusion in educational and employment settings, for people with disability in a transitional context, such as that offered by Azerbaijan, are examined in this chapter. The authors consider the main issues for developing inclusion strategies and supports for children and adults with disabilities, with an assessment of the principal barriers and enablers, particularly with respect to issues of empowerment and enforcement of rights. The example of Azerbaijan is offered as a case study from the Caucasus region, along with instructive lessons for those seeking to bring about progressive reform and improved participation in such contexts as well as those wishing to advance disability studies in complex regions such as Eastern Europe. This case study offers rich M. Titterton (*)  Health & Life for Everyone, University of Edinburgh, Edinburgh, UK H. Smart  Health & Life for Everyone, Edinburgh, UK © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_10

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pickings for policy analysts and others in the disability and education sectors attempting to get to grips with the enablers and barriers to reform. The uneasy and authoritarian regime dominating politics in Azerbaijan has been floated by the natural riches of the Caspian region. The existence of such regimes has prompted some authors, such as Richter (2012) and Heinrich and Pleines (2012), to revive notions of the “rentier state” and the “resource curse,” under which such states have notably failed to translate resources into improvements for their societies such as welfare (Franke-Schwenk 2012; Guliyev 2013). What is readily evident is that the Caucasus and Caspian states provide a challenge for policy analysts trying to make sense of transitions, changes, and paths to reforms (and the lack of them in some cases) in the Eastern Europe and Central Asia (hereafter EECA) region, as well as the factors and processes that underpin them. In this paper, the authors use the topic of disability in an EECA country to explore some key tensions for the development of social policy and welfare and educational responses to the problems of marginalized groups, such as people with disabilities, in a welfare state under transition. In the wake of the collapse of the Soviet Union, and stormy conflicts in the Caucasus, Azerbaijan ceased as a Socialist Soviet Republic and in 1991 an independent republic was declared. Azerbaijan has massive oil and gas reserves, and the natural bounty of the Caspian Sea. The country’s regime has been criticized over its human rights record, political prisoners, corruption, and electoral irregularities, including the last presidential elections in 2013 and a crackdown on protest in the early months of 2014 (see, e.g., Bolukbasi 2011; Meissner 2011). The ­republic faces distinctive challenges within the context of EECA and within the Caucasus region, bordering as it does the Caspian Sea between Iran and Russia. A big hurdle to overcome is the resolution of the “frozen conflict” with Armenia over Nagorno-Karabakh, which led to the displacement of local populations and the appearance of wounded veterans, returning with a range of disabilities requiring treatment and support. Relationships between the EU and those states within the EECA region have been an especially contested area, but perhaps more so than ever at present. This is due to factors such as reliance on natural resources,

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growth in concerns about fundamentalist Islam, and mounting tension in the Caucasus with disputes over Abkhazia and South Ossetia featuring Russia, along with the present conflict in Eastern Ukraine.

Improving Understanding In order to improve our understanding of comparative developments in policy and practice, including the field of disability studies, we need to foster the building of knowledge through sound empirical research. There has been a gradual accumulation of a body of evidence and documentation in the wake of demands by international agencies for a firmer footing for the funding of social developments and in part from scholars and researchers seeking a more informed understanding of conditions and of the barriers to the reform of health care, social work, education, and employment sectors. Recent contributions to this field, such as those by Schmidt and Bailey (2014) of the Czech Republic and Ivanova and Bogdanov (2013) of Bulgaria, help to provide understandings of specific settings. Other writers argue that a different tack is required, such as a theory of “authoritarian social policy” being needed in comparative policy research (Forrat 2013). As mentioned at the outset, some analysts have given fresh life to notions of the “rentier state” (Franke-Schwenk 2012; Guliyev 2013; Heinrich and Pleines 2012; Richter 2012). There may well be potential for exploring this notion in relation to states such as Azerbaijan and Kazakhstan, which have traditionally defied easy or ready-made categorization in comparative policy research. Policy analysts and others have much to learn from the diversity of paths taken and outcomes achieved in this region (Cerami and Vanhussye 2008; Ekiert and Hanson 2003; Inglot 2008; Manning 2004; Stefes and Wooden 2009; Titterton and Smart 2010). Schmidt and Bailey (2014), for example, point to path dependency factors that have pushed the Czech Republic toward institutional solutions for children and those with disabilities. We would seek to tread a middle ground between the two poles of “path dependency” and “path departing analyses,” as there will be a mix of push and pull factors at particular junctures, depending on a

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coalescing of social, political, economic, educational, and cultural factors and forces emerging in different time periods. We consider that this approach can help to provide a more robust, empirical foundation for the development of public policy and social policy theories and analyses (see, e.g., Titterton 2006). The discussion in this chapter is therefore intended as a contribution in similar vein.

The Challenge of Disability in Azerbaijan Attempts to reform the fields of social policy and educational policy for people with disabilities are presently under way in Azerbaijan. This is meant to involve the implementation of legislative and policy reforms, including the modernization of welfare systems and approximation with international standards and practices, such as those of the European Union (EU). The government of Azerbaijan has publicly committed itself to developing a new strategy intended to improve the quality of care of people with disabilities and promote their social and educational inclusion. A desire has been expressed for the harmonization of national legislation and development of a state policy for people with disabilities, in an effort to support their equal rights. However, there is a pronounced gap currently between the rhetoric and the reality, with Azerbaijan falling behind many other Commonwealth of Independent States countries in the pace of reform. One area of difficulty has been encouraging governments in the EECA region to implement the UN Convention on the Rights of Persons with Disabilities (CRPD), which Azerbaijan signed in 2009. Some work started on addressing disabilities issues in 1991 following the country’s declaration of independence. Subsequent laws included the Disability Prevention and Disabled Persons (Rehabilitation and Social Protection) Act 1992, the Law on Children’s Rights and the Law on Education. Programs such as the State Programme on De-institutionalisation and Alternative Care 2006–2015 and a State Programme on the Development of Inclusive Education for 2012–2019 were also devised by the government. While commending the progress made by the latter in providing a legal basis for the protection of human

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rights in Azerbaijan, a situation analysis conducted by UNICEF in 2011 recommended an overhaul of existing legislation and the development and implementation of new legislation to bring the legal framework fully in line with the requirements of the CPRD (McCabe 2011). With respect to the inclusion in education, UNICEF (2012) has also drawn attention to shortfalls in provision and lack of enforcement of rights in this sector; see also Mizunoya et al. (2016). One particularly contentious issue has been that defining, clarifying, and conceptualizing “disability” in the EECA region, particularly bringing countries into line with those models underpinning the International Classification of Disability or the approach adopted in the UK. This has certainly been an area of debate within the wider disability movement, especially around the “social model of disability,” in contrast to what is seen as the dominance of “medical models”: Here, the focus is on social and structural barriers that not only prevent people with disabilities from participating and benefiting from the opportunities that societies offer but serve to oppress them in capitalism. The UK has had a very active role in shaping this model (see, e.g., Oliver and Barnes 2012), though there are critics such as Shakespeare (2014) who presses for what they argue is a better balance in respect of issues of impairment. An additional difficulty for Azerbaijan lies in the problems created by definitional issues and lack of clarity about standard terms and statistics. Definitions are perceived to be important in this context as the accepted state definition is currently the gateway to accessing benefits and support.

Policy Context There are broader political considerations with regard to the way that the West and the EU, in particular, is seeking to build closer relationships with countries under European partnership arrangements, while anticipating the role that such countries will play with respect to the exploitation of natural resources, especially oil and gas. Along with marked religious and ethnic tensions in such regions, there is evidently a heady mix of factors for analysts to ponder upon when they seek to

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analyze and explain developmental paths for welfare strategies in EECA countries. The driving up of standards for the provision of support and services for people with disabilities within local populations in countries such as Azerbaijan forms the backdrop for the concerns of the EU, which in 2010 adopted the European Disability Strategy 2010–2020, with its eight priority areas, which include participation. There is as well pressure from other sources that need to be acknowledged, such as the international disability movement, including the European Disability Forum, users’ and carers’ groups, CSOs, as well as welfare professionals and policy makers, all forming a loose and inchoate grouping for pressure on governments and international agencies. International agencies such as the European Commission, Council of Europe, and the UN have some ways for developing bilateral and multilateral relations in the region, albeit comprising a less than coherent mix of strategies in total. For the EU, the European Neighbourhood Policy (ENP) is one such strategy and in addition there are other various instruments or policy tools in the repertoire. The broader agenda is one that is intended to address more vague and less well-formulated goals around state building and improving weak governance. Since 2004, the ENP has involved tempting neighboring countries with the prospect of an increasingly closer relationship with the EU, with the goal of fostering political and economic reform processes, promoting closer economic integration, legal and technical approximation and sustainable development. However, there is little explicitly in such official declarations and documents about people with disabilities as active social policy actors, developing their own strategies and solutions through a narrative of empowerment and enforcement of rights. This makes it hard to enforce such bottom-up initiatives, led by people with disabilities themselves.

An East-West Partnership? It has been awkward, to say the least, to establish sound and effective working relationships between the West and East within an agreed and

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coherent framework of accountability and transparency for transnational organizations such as the EU. This is because of a lack of easy fit between such institutions and a transitional, formerly Soviet state such as Azerbaijan. Contractual relations were established between Azerbaijan and the EU for the first time through a Partnership and Cooperation Agreement in 1999. On the basis of this bilateral treaty, a legal framework for political and economic relationships was created, along with the proposed implementation of social protection reforms explicitly spelled out. Steps to further approximation to the EU come within the framework of the Association Agreement, about which negotiations have been continuing since 2010. An ENP action plan was approved in 2006 for “the reform of the social security system, notably to improve targeting and effectiveness of social protection measures and social assistance,” particularly for “the most vulnerable groups of the population like large households, children in institutions, (and) disabled people.” To prompt reforms, a further tool in the EU’s repertoire is the twinning instrument: This is one of the bilateral programs, which particularly aims to strengthen administrative public institutions by capacity building measures and technical support to meet EU standards. In order to assist Azerbaijan, a twinning project between a key Government Ministry, the Ministry of Labour, and Social Protection of Population (hereafter MLSPP), and an equivalent body in one (or several) of the EU Member States was initiated. It was designed to support Azerbaijan in assisting the social inclusion of people with disabilities by improving strategic alignment, legislation, program procedures, monitoring and evaluation systems, and communication strategy, with enhanced labor market inclusion. Public administration institutions, in theory at least, were to be enabled by capacity building measures to develop new strategies and approaches for people with disabilities, while taking into consideration European practice. However, it has been a challenge to get such a relatively ambitious program off the ground, due to changes in government personnel, including changes of Ministers after the 2013 elections, institutional lethargy and difficult relations between the state and civil society organizations (CSOs). Moreover, as is made clear in the latest ENP Country Progress Report, there have been

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backwards steps in terms of democratic transition and the situation for CSOs has deteriorated sharply, with a more restrictive context now operating (European Commission 2015).

Methods To help examine these tensions and issues, findings from two research and development projects in Azerbaijan affecting the disability sector have been used here. One project was a European Commission-funded initiative to establish a project for the building of capacity of institutions to help the Azerbaijan Government’s MLSPP improve policy, strategies, and services for people with disability, using assistance from the EU member countries. Methods used in this project included interviews with state officials, visits to rehabilitation centers, and focus group discussions. The other was based on an evaluative research study of an innovative mobile service, operated by a local non-governmental organization, Social Services Initiative (SSI). A pluralistic methodology was deployed: This included the conducting of semi-structured group interviews with children and parents from two rural districts, and individual interviews with local state officials and national policy makers, as well as UNICEF.

Children and Adults with Disabilities in Azerbaijan According to figures presented to the authors by MLSPP, there are currently estimated to be around 60,000 children with disabilities in Azerbaijan. Of these 1100 attend special educational schools and 2660 attend special Boarding Schools of which 1350 are boarders. A further 7750 are involved in home education and some 300 children attend mainstream schools. Children under 5 fall under the care of the Ministry of Health Care, 5–15 year olds are the responsibility of the Ministry of Education but only if they have the ability to study. The remainder fall within the remit of the MLSPP. There are 14 rehabilitation centers across the country for children with disabilities which assist some 8000 people per year, 5 of which are run by the Ministry of

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Education. In addition, the latter has responsibility for Special Schools, Boarding Schools, and Home Study. Two Boarding Schools provide services for children with mental disabilities. The most frequent type of disabilities is physical, sensory and mental impairment, the majority of which originate from birth to early childhood. A survey of children with disabilities found high numbers of parents reporting disability from birth, with 57% of respondents reporting loss of function (Smart and Titterton 2012). Furthermore, and again according to government statistics presented to the authors, there were about 420,000 people with special needs in Azerbaijan in 2011, making up 4.6% of total population; international comparisons are never easy but this figure is considerably lower than what would be expected from applying estimates from international prevalence surveys (WHO 2011). During the last decade, the total number of persons registered as disabled has been claimed as rapidly rising. This growth can perhaps be explained by a worsening epidemiological situation, lack of prevention policies, gaps in early intervention, as well as lack of proper rehabilitation and in some cases, medical negligence. In addition, as of 2011, 59,200 children were registered as disabled. The situation assessment from 2011, commissioned by UNICEF and the NGO Social Services Initiative, included a survey of 250 children with disabilities, which found that 44% of parents reported that their children had no access to special treatment and medical services, 62% reported no access to specialist rehabilitation treatment and 97% no access to in-home, residential, and other support services in the community (McCabe 2011). Another finding was that while existing legislation provided a decent basis for the protection of the rights of people with disability, significant reforms were required to bring it fully into harmony with the UN Convention on Rights of People with Disability. A major problem for people with disability in Azerbaijan, moreover, remains their exclusion from the mainstream of society, including educational opportunities and the labor market, as well as political processes: This was clearly reflected in the evidence of people with disabilities, their carers and representatives, with whom the authors held discussions. While good practice in EU countries typically involves attempts to develop socially inclusive and community-based forms of support for

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those affected by disability provided by statutory and non-statutory organizations within a regulated and mixed economy of care, Azerbaijan still relies heavily on state-provided medical and institutional models of care. There is a small but active number of non-governmental organizations working in the field of disability in Azerbaijan, which have been developing working relationships with MLSPP in order to improve service provision for people with disability, particularly outside Baku. However, the pressing issues of empowerment, participation, and voice for those with disability remain. In addition, the legal rights to education of children with disabilities in the country present a mixed and confusing picture (UNICEF 2012). The educational sector has no academic curriculum and no pedagogy for inclusive or special education. Thus, there has been little experience of educating children with disabilities, other than the efforts of a few donor-financed Parent Non-Governmental Organizations (NGOs), which have received training from Western countries. However, there have occurred various initiatives by the government of Azerbaijan and by local NGOs such as the Center of Innovations in Education, for example, in selected sites in Baku, Sumgayit, Mingachevir, and Yevlakh (Lesko et al. 2010). To cite another illustration, two secondary schools in Baku have been selected for a pilot of inclusive education at postprimary level. This does not yet add up to a convincing picture of change. There is no formal occupational rehabilitation sector or expertise either. Moreover, despite the adoption of a law in 1992, which requires all new construction to be accessible, there is no compliance and no enforcement of even basic accessibility standards. The physical infrastructure needs improvement and is not always safe even to non-disabled individuals, with many pavements raised to discourage parking. It is difficult for people with impairments to be mobile due to the lack of suitably adapted forms of transport, though the new black London taxis purchased for the Eurovision Song Contest in Baku were hailed by one respondent as his “freedom chariot.” The current system of medical-social expertise used to decide who is eligible for benefits has many inconsistencies or outdated practices, some of which have been inherited from the former Soviet medical model (see also Lesko et al. 2010). The focus of the assessment process

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is on what the person cannot do or can no longer do, rather than on the remaining capacity. Vocational rehabilitation has not yet been fully established as a discipline in Azerbaijan, and there are still no attempts to develop individual vocational rehabilitation plans for people with disability or those with impaired health. Not surprisingly, the prevailing disability assessment system and social perception in general have very low expectations of what individuals with disabilities can accomplish. One major difficulty with the current system is the way the process is administered by the MedicalSocial Expertise Commission and its physicians who examine claimants seeking benefits. More recently, there have been attempts in some of the rehabilitation centers to develop and improve social forms of rehabilitation and to improve treatments and equipment to better support people with disability. These efforts need to be broadened and strengthened across the system, and capacity building and further development and support of professional education of staff is required. Based on the 1992 law, the activity of medical, vocational, and social rehabilitation of persons with disabilities and children with impaired health is carried out individually by decision of medicalsocial expert commissions; this should also involve the participation of relevant authorities and representatives of organizations of persons with disabilities and children with impaired health. Individual rehabilitation programs are meant to determine the rehabilitation measures needed, as well as social assistance forms, types, and duration of implementation. In this connection, there are 14 centers for the rehabilitation of people with disability operating in the country. People are admitted to these centers following a decision by medical institutions and medical-social expert commissions and are currently treated with pharmaceutical, physiotherapy, mud treatments, therapeutic physical training, hydrotherapy procedures, massage, and other methods of treatment available in the rehabilitation centers. During their visits to such centers, including a center for children based in Baku, the authors found them to be well run and well used, with dedicated and committed staff. The latter expressed a keen interest in participating in any training and development initiatives funded through international projects.

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There are, however, large gaps in provision, particularly in those rural districts outside Baku. Parents of children with disabilities in such districts are especially disadvantaged and are struggling to cope with caring for their children at home, the associated loss of income, the lack of services, and the maladministration of benefits, to which they are meant to be entitled. Many children are homeschooled: In their survey, Mikailova et al. found nearly half schooled at home, while concluding that overall there was a “serious lack” of services to meet needs (2009, p. 126). The present situation is clearly unsatisfactory and major changes are needed, in order to develop an assessment system that embraces social models and which is much more multidisciplinary, holistic, and person-­centered than the current system. Furthermore, the situation with regard to children requires substantial improvement in terms of ­ definitional and assessment issues, as well as in terms of the development of inclusive models and individually tailored services, including services that are locally based. Results of a study commissioned by UNICEF into aspects of the State Programme on De-institutionalization and Alternative Care for 2006–2015, endorsed in 2006 by the President, indicated that there is still a long way to go, particularly in respect of child-centered and locality-based forms of support (McCabe 2011; UNICEF 2010, 2012). While there appears to be some progress with issues such as the preparation of individual plans, low levels of participation in decisionmaking by children and parents were also reported. The great majority of stakeholders involved appear to be lacking incompetencies and information regarding children’s rights. This also applies to issues of educational rights and opportunities, as others have found (Lesko et al. 2010; Mikailova et al. 2009; UNICEF 2012). The reforms required further imply that there take place a reconfiguration and redeployment of existing services such as the rehabilitation centers, and retraining of their staff, combined with the development of innovative services and supports in line with new social models and welfare pluralism, where non-statutory actors such as NGOs, disability associations and service users and family carers become partners working alongside statutory agencies. There is a growing awareness of the need for the social inclusion of people with disabilities, community-based social services and collaboration with other public institutions and

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NGOs. However, there is a lack of knowledge about how best to address these issues. Moreover, the public administration still lacks the institutional capacities at all levels to stimulate the reform process required bringing in new models and new approaches for supporting people with disabilities in the community. Such institutional strengthening is now a pressing necessity for any EU twinning project in this field. The MLSPP has been the recipient of technical and financial support from international donors and there has been a small number of activities. The twinning project was intended to run in parallel with complementary projects, but at the time of writing this has not worked out. One has been a much-delayed World Bank-funded project, comprising technical assistance for developing official disability standards and guidelines. The purpose is the revision of rules to determine the degree of disability, to improve the work of the Medical-Social Expertise Commission of MLSPP, to improve medical rehabilitation and to assist the government in designing and implementing a new system for granting disability status. Nevertheless, a major difficulty has been the institutional blockages and policy stasis caused by political shifts and changes of staff and policy direction, as a result of the latest government reshuffle. The issue of a social empowerment approach replacing a rehabilitation-based approach, raised by the authors in their discussions with Ministry officials, is unlikely to be addressed in such an unpromising context.

The Example of the Strengthening Rehabilitation Services Project SSI is an NGO based in Azerbaijan, initially set up to implement a project of the Open Society Mental Health Initiative (OSMHI), which is a program of the Open Society Foundation. SSI’s Mobile Services Project began in 2008 and was launched in 2009 with funding from the OSMHI, based in Budapest, Hungary, to meet needs identified by an assessment of local experts and OSMHI for additional support for children with intellectual disabilities. The purpose of the initiative is to meet the gap in provision for children unable to use the services

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of rehabilitation centers due to isolation, lack of transport and financial resources. In terms of provision for people with disabilities in the country, the service could be considered to be unique. The intended outcomes of the project are the integration of disabled children into society, the prevention of institutionalization and the elimination of discrimination. As noted above, the management and treatment of disability in Azerbaijan is predominantly the responsibility of the medical profession and consequently parents and carers of children with disabilities place their faith in the abilities of surgeons and other health professions to effect a cure for their child’s condition. People with disabilities are not considered capable of working and children are excluded from mainstream education. Consequently, there is little support for therapeutic interventions that might aid children with disabilities to develop speech and language and motor skills; in the project’s early stages, approaches to parents and carers were met with suspicion. The project also operates within a challenging political environment: While legislation has been put in place, in recent years, which was intended to provide a sound basis for the delivery of social work services and inclusive education, in practice, progress has been slow. In addition, the day-to-day experience of parents and carers is one of a constant battle with poverty. At the time of this study, financial support for people with disabilities was felt to be grossly inadequate and the government was considered to be dilatory in its execution of a commitment to disburse additional financial resources to families. By law, medical treatment for those registered as disabled should be free. In reality, it is impossible to get free treatment as payment is required for medicines. The law on free services was not being upheld and the corrupt system of “informal payments” that is common practice in Azerbaijan further erodes families’ already limited resources. As a result, children have to do without crucial treatment and medicines. In 2012, the SSI Mobile Services Project was serving a total of 42 children across two districts outside Baku from regional offices located in Ismayilli and Guba, which are towns located in rural and remote areas, about 160 km to the west and north of Baku. In the early stages of the project, families received 2–3 visits per week. In order to increase

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coverage, however, this was reduced to one weekly visit. The Baku team visits districts once or twice per week and provides a mix of service provision and supervision. It was proposed to expand the service to a further 10 regions in 2013 and the MLSPP asked SSI to manage this. Evidence for the success of the project was to be found in the reactions of parents and the numbers of parents applying for help since the service began. A number of respondents cited individual examples of improvements in children’s behavior and/or functioning and in their ability to communicate with their parents and other children. I have been in contact with SSI for 3 years and as a result my child now goes to school and she had hearing problems that were identified in Baku when my child was taken to hospital on account of SSI’s project…. I regret that this wasn’t organised earlier so my child could develop just as everyone else. I am very thankful to the project…my child is really now making lots of progress and going to school. Before it was much harder to work with her and now it is getting better and better and I wish all parents in here to make the same progress with their children. (PG 2 Ismayilli).

In addition to improvements in physical functioning, the service was seen to address psychological issues as well. It was valued for its role in creating a sense of self-belief among children and parents and for giving parents some hope for the future. Changes in the community had also been observed. Children with disabilities are more visible and being seen to take part in sports activities and in other events such as courses in sewing and art at the Heydar Aliyev Center in Ismayilli. The response to these initiatives was considered to be positive and there is greater acceptance of children with disabilities among their peers. The rehabilitation process has been filmed and shown on TV, demonstrating the changes that could be brought about in individual children, to a wide audience. Our research found that SSI offered a high-quality service which is unique in Azerbaijan in that it is held in high regard by service users and at the same time, commands respect in government circles. At an individual level, there was evidence of improvements in physical and cognitive functioning; in addition SSI was influential in supporting

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changes in strategic planning and policy circles. Notwithstanding the limitations of the research in terms of budget and time constraints, the authors considered the evaluation to provide a reasonable representation of the achievements and challenges for SSI. Plans have been in hand to substantially expand the service. Finally, our research also uncovered the emphatic desire expressed by parents of children with disabilities for much more consultation, involvement, and genuine participation in discussions around support solutions and educational and employment opportunities.

Discussion There are presently very few sources of pressure and channels for the expression of the voices of people with disabilities in Azerbaijan. Only a handful of parent-led organizations exist, with very few user-led organizations as such, though there is an active War Veterans’ group based at the main rehabilitation center in Baku. The notion of independent sources of advice and perspectives outwith the ambit of government is still very novel and clearly a substantial culture shift will be required to develop these, if user-led change is to be brought about. The Ministries and local officials need assistance in how to take account of voices that do not fit comfortably into established channels of expression in terms of shaping government strategy. Outside pressure from the EU, WHO, UN agencies and other international bodies is still a factor in keeping the reform agenda on some kind of track. This will require greater impetus through social and educational inclusion processes. Cultural barriers and factors in a country like Azerbaijan need therefore to be addressed analytically and in policy interventions if access to better services and supports and stigma is to be reduced within the general population. A key problem is the lack of the user experience and perspectives, leading to limited understandings of disability and its experience of the lived reality of people with disability, and limited models of support, with conceptions of social support and social networks largely absent. The lack of inter-Ministerial working in the social and educational sectors remains a major stumbling block for the reform agenda. Lead

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departments in this sector such as MLSPP, health, and education tend to work independently of each other. The relative absence of the Ministry of Finance, in many ways the key government department for planning purposes, and robust financial planning scenarios, means that strategic plans and budgets of service Ministries lack proper clout within the government. The shortage of monitoring bodies to provide independent scrutiny and accountability of governmental and executive actions means that it is hard to put pressure where it counts to ensure that international and national obligations are fulfilled. Moreover, the lack of genuine political reform has led to a calcifying of political structures and political forces, in the wake of the departure of President Heydar Aliyev, and a lack of movement in progressing a more enlightened and “modernised” policy agenda with respect to vulnerable people, including those with disability. Capacity building is essential not just in government departments but also among those professionals working in the rehabilitation centers, community services, schools, and rural districts, including through training and professional education. Multidisciplinary and multi-agency working will remain a challenge as it is for many countries, though there are isolated examples of staff from different disciplines such as social work, psychology, and health working together in pockets. The implications of holistic and social models will need to be more clearly spelled out, both for government and non-government agencies and among professional groups, including in university masters courses for health, social work, and education. If projects such as SSI’s Mobile Service are to be scaled up, partnership working between state and non-statutory organisations will need to be better developed and supported. This has been made more difficult by the restrictive framework for CSOs mentioned earlier and easing this awkward situation is surely one of the tests of the effectiveness of the EU’s approach through its ENP. A principal challenge is the culture shift required to enable the participation and involvement of people with disabilities among agencies, professionals, families and people with disabilities themselves. There are positive signs in the priority and treatment given to veterans for the Nagorno-Karabakh conflict, including housing, though more in the

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way of PTSD treatment and physical therapeutic treatments, along with links with international veterans’ groups in other countries, would be welcome. Last but not least, rolling programs of public education and positive image building are a necessity, along with better information for the public and for people with disabilities and their families. These will need to be monitored for effectiveness and refined according to the emerging feedback about the content and form of messages for public consumption. Despite these difficulties, however, there have been some valuable attempts recently to experiment with a more inclusive approach in education. It is to be hoped that the lessons from these and from other, albeit tentative pilots will be studied and disseminated, and help to lead to progressive change for the future. Barriers include the likes of attitudes of children, parents and teachers, skills, techniques, and methodological approaches for teaching and learning, as well as training and education for teachers and school managers (Lani and Majda 2011; Lesko et al. 2010; Mikailova et al. 2009). The Ministry of Education has to ensure that this is developed, supported, and rolled out, especially in the more challenging context of the rural and mountainous areas such as Guba. Finally, we can comment on implications for the field of comparative policy studies. It was contended earlier that policy analysts can learn from the diversity of paths and outcomes in such regions. There is a fruitful middle patch to harvest between the two camps of path dependency and path departing approaches, exploring the mixture of push and pull factors at various junctures, combining of factors and forces in differing time periods. This is reflected here in the ways in which pressures for reform of services and support for people with disabilities has evolved from international, national, and local arenas and from “top down” and “bottom up” forces, resulting in a distinctive blend of pathways and outcomes in Azerbaijan. Disability, in relation to the issue of social and educational inclusion, currently represents a “policy window” (Sirovatka and Rakoczyova 2009) and provides a sensitive indicator of sectoral reform, policy shifts, the dynamics between political regimes and social forces such as people with disability, and the processes of social exclusion operating in a country like Azerbaijan. What the findings in this chapter indicate is

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that more detailed empirical research is required, including country case studies and sector-specific studies, to provide a more robust evidence base and resource for theorists and analysts to consider when seeking to make sense of broader patterns and trends.

Conclusion The situation in Azerbaijan for people with disabilities has been notably difficult for the reasons considered in this chapter, including institutional stasis, lack of public pressure and voice, personnel changes and lack of continuity, stigma and discrimination, problems with access to education, work, and social spaces. The social, political, economic, and educational exclusion of people with disability remains a huge stumbling block as the country seeks to make progress with its program of social and educational reforms. Nonetheless, this unpromising picture could markedly improve over the coming decade if the reforms and changes mooted by international agencies such as the EU and recognized as necessary by the government departments such as MLSPP are carried through. Technical assistance will still be required into the foreseeable future in order to maintain the pace of reform, but this needs to be provided in ways that are sustainable and in ways that embed good practice and technical know-how among local actors, including those working in the NGO sector. This assistance also needs to be more inclusive and participatory, involving people with disability being empowered to find solutions to their issues and difficulties. A particular challenge is faced by children with disabilities and their families in the rural and mountain districts such as Guba and Ismayilli. There are, however, resources that can be better deployed in such areas, such as local administrators and teachers, as well as informal carers, who are well placed to develop local services with the right investment through training and funding support. A key weakness is currently the lack of voice for people with disabilities, which needs to be strengthened through advocacy and empowerment initiatives to encourage more active participation. Positive image building is a must among the general public and among families caring for children with disabilities.

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Finally, a program of sustained social investment by the government of Azerbaijan is required to ensure a greater share of the oil wealth among its more vulnerable population groups. A challenge for policy analysts is both to be able to account satisfactorily for such factors and the developmental paths taken and to assist in the pressing task of helping to achieve better outcomes for people who are disempowered and socially and educationally excluded. The challenge for the disability movement is to help families and communities engage and help them articulate their needs in effective ways. In addition, if the government is to make meaningful progress in its stated aims to bring the country into line with the requirements of the Convention on the Rights of People with Disability, significant investment will have to be made in building community capacity, in professional skills building, and in measures to tackle corruption and encourage openness and accountability within the state benefits system. The overall aim should be the development of a person-centered and outcome-focused service response, underpinned by socially and educationally inclusive models and participatory values. From the evidence of the research described above, it is evident that much hard work has been done by NGOs such as SSI to develop a service that is committed to the values of social and educational inclusion and dedicated to responding to the needs of service users. It now remains for the government of Azerbaijan to demonstrate fresh and vigorous commitment to the reforms and their underpinning values and to work in participatory ways with children and adults with disabilities and their families.

References Bolukbasi, S. (2011). Azerbaijan: A Political History. London: I.B. Tauris. Cerami, A., & Vanhussye, P. (2008). Introduction: Social Policy Pathways, Twenty Years After the Fall of the Berlin Wall. In Post-communist Welfare Pathways Theorizing Social Policy Transformations in Central and Eastern Europe. Basingstoke: Palgrave Macmillan. Ekiert, G., & Hanson, S. E. (2003). Capitalism and Democracy in Central and Eastern Europe: Assessing the Legacy of Communist Rule. Cambridge: Cambridge University Press.

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European Commission. (2015). ENP Country Progress Report: Azerbaijan. Brussels: European Commission. Forrat, N. (2013, August). Why Do We Need the Theory of Authoritarian Social Policy in Comparative Research? Paper prepared for the presentation at the Annual Meeting of the American Political Science Association, Chicago. Franke-Schwenk, A. (2012). Providing Welfare in Post-Soviet Rentier States. In A. Heinrich & H. Pleines (Eds.), Challenges of the Caspian Resource Boom: Domestic Elites and Policy-Making. Basingstoke: Palgrave Macmillan. Guliyev, F. (2013). Oil and Regime Stability in Azerbaijan. Democratizasiya, 21(1), 113–147. Heinrich, A., & Pleines, H. (Eds.). (2012). Challenges of the Caspian Resource Boom: Domestic Elites and Policy-Making. Basingstoke: Palgrave Macmillan. Inglot, T. (2008). Welfare States in East Central Europe, 1919–2004. Cambridge: Cambridge University Press. Ivanova, V., & Bogdanov, G. (2013). The Deinstitutionalization of Children in Bulgaria—The Role of the EU. Social Policy and Administration, 47(2), 199–217. Lani, F., & Majda, B. (2011). Challenges for Teachers’ Professional Learning for Inclusive Education in Central and Eastern Europe and the Commonwealth of Independent States. Prospects, 41(3), 371–384. Lesko, J. J., Zeigler, D. A., Mikailova, U., & Roels, D. C. (2010, November). Inclusive Education in Azerbaijan. Young Children, 65(6), 56–61. Manning, N. (2004). Diversity and Change in Pre-Accession Central and Eastern Europe Since 1989. Journal of European Social Policy, 14(3). https:// doi.org/10.1177/0958928704044620. McCabe, C. (2011). Situation Assessment: People with Disabilities in Azerbaijan. Baku: UNICEF. Meissner, H. (2011). Informal Politics in Azerbaijan: Corruption and RentSeeking Patterns. Caucasus Analytical Digest, 24(11), 6–9. Mikailova, U., Ismayilova, A., Karimova, Y., Isazade, U., Behbudov, R., Agayev, Y., et al. (2009). Education of Children with Disabilities in Azerbaijan. In Human Rights Education in Asian Schools (Vol. 12). Osaka: Asia-Pacific Human Rights Information Center. Mizunoya, S., Mitra, S.‚ & Yamasaki, I. (2016). Towards Inclusive Education: The Impact of Disability on School Attendance in Developing Countries. Florence: UNICEF Innocenti Working Paper No. 2016-03. Oliver, M., & Barnes, C. (2012). The New Politics of Disability. Basingstoke: Palgrave Macmillan.

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Richter, T. (2012). The Rentier State: Relevance, Scope and Explanatory Power. In A. Heinrich & H. Pleines (Eds.), Challenges of the Caspian Resource Boom: Domestic Elites and Policy-Making. Basingstoke: Palgrave Macmillan. Schmidt, V., & Bailey, J. D. (2014). Institutionalization of Children in the Czech Republic: A Case of Path Dependency. Journal of Sociology and Social Welfare, 41, 53–75. Shakespeare, T. (2014). Disability Rights and Wrongs Revisited. Abingdon: Routledge. Sirovatka, T., & Rakoczyova, M. (2009). The Impact of the EU Social Inclusion Strategy: The Czech Case. In A. Cerami & P. Vanhussye (Eds.), Post-communist Welfare Pathways: Theorizing Social Policy Transformations in Central and Eastern Europe. Basingstoke: Palgrave Macmillan. Smart, H., & Titterton, M. (2012, November). Promoting Social Inclusion and Equality for Children with Disabilities in Azerbaijan: Evaluation of the SSI Mobile Support Service. Baku and Edinburgh: SSI/HALE. Stefes, C. H., & Wooden, A. E. (2009). Tempting Two Fates: The Theoretical Foundations for Understanding Central Eurasian Transitions. In The Politics of Transition in Central Asia and the Caucasus: Enduring Legacies and Emerging Challenges. Abingdon: Routledge. Titterton, M. (2006). Social Policy in a Cold Climate: Health & Social Welfare in Russia. Social Policy and Administration, 40(1), 88–103. Titterton, M., & Smart, H. (2010). Risk, Resilience and Vulnerability in Children and Adolescents in Relation to Long Term Conditions: The Example of Eastern Europe and Central Asia. Journal of Nursing and Health Care of Chronic Illness, 2, 153–163. UNICEF. (2010). Comparative Analysis of Costs for Residential Child Care Institutions vs. Alternative Services. Baku: UNICEF. UNICEF. (2012). Study on Educational Provision for Children with Disabilities in Azerbaijan. Baku: UNICEF. World Health Organisation. (2011). World Report on Disability. Geneva: WHO.

11 Inclusive Technical Capital in the Twenty-First Century Simon Hayhoe

Introduction In 2012, I supported a visually impaired woman I called Emma in a higher education college in the United Arab Emirates (UAE)—Emma was a name I gave her to protect her identity. Emma was twenty-four years old, in the third year of an electrical engineering diploma, and had a strong visual impairment since early childhood; her retina was wearing thin, she had cataracts, she was partially color-blind and her eyes constantly made involuntary movements, causing large distortions of vision. Emma’s impairment was genetic and common in her family—her grandparents, uncle, and sister had similar impairments—although her family went out the way to arrange extra educational and social support for her. This was not easy for the family, as her parents could not read or write, and they also had to support her sister. S. Hayhoe (*)  University of Bath, Bath, UK e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_11

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From the beginning, I planned a system of teaching Emma using an iPad to improve her study skills and developed a sustainable curriculum of technical literacy. While supporting Emma, I also wrote notes about my teaching and support, her progress and the circumstances we found each other in, in the hope of developing my practice in this field. I chose the iPad because it had a large screen, its operating system included a voice function that identified objects and text on screen, and it had a zoom facility for users with low vision. My notes on this technology subsequently developed into an action research study (Carr and Kemmis 2003) and measured the effectiveness of the iPad as a learning tool for students with visual impairments. I started my support as I often did by reading recent research and practice reports. This reading showed that the iPad’s features were also used in other Apple products, such as the iPhone, and I read several reviews showing this technology was designed with inclusion in mind. However, despite these reviews there were few independent academic evaluations that scrutinized these devices in universities or colleges, or that mentioned students with deteriorating sight. In my original paper on this case, which I presented to a conference in Sharjah, UAE, I described my support and teaching as a practice model of support. From 2012, following this paper, I developed further models of support and a theory of inclusive technical capital to describe what I felt was being developed through teaching practice. This new theory led to a position paper on the use of mobile technologies, such as smart phones and tablets, by students with disabilities to develop inclusive practice and study skills. These study skills were designed to be used to promote both inclusion in class and individual learning and revision in libraries and other social places, like buses, cafes, and the home. The theory of inclusive technical capital in this chapter, which then became a teaching model, is based on a previous model of technical capital defined by Yardi (2010). Yardi’s model itself was an adaptation of Bourdieu’s (2010) model of cultural capital. These previous models were designed to promote equality of opportunity through access to education, information, knowledge, etc.

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This chapter now looks back at my original case notes and provides a re-evaluation of Emma’s earlier study of practice using this newer model, which began with her in mind. This model has now adapted further and is being developed in other universities and museums, as an instrument of evaluation and practice. This chapter is necessary for teachers, as mobile devices, such as tablets and smart phones, are becoming ubiquitous for students in schools, colleges, and universities. Subsequently, the study skills of information, data, and knowledge gathering in all these institutions are increasingly needed when providing support for students with additional needs. Not being able to use tablets or smart phones means non-users are at a disadvantage and less able to progress their education and professional training. This lack of education and training also excludes people from the benefits, support, social status, and democratic representation that studies could bring them. However, despite the increasing importance of mobile devices in higher education, just a few years ago, evaluations of students with disabilities in mainstream colleges or universities were rare (Hayhoe 2013). This meant that teachers and support assistants had little to go on when they were designing their support. I feel this lack of writing on mobile devices and disability was unfortunate, as the inclusion of disabled people is often at its best when it is gained through access to higher education. Consequently, this chapter shows the need to investigate the effective use of mobile technology during classes, lectures, seminars, workshops, and study sessions alone. At the same time, this chapter shows the advantage that these technologies have over traditional and more expensive assistive technologies, such as custom zoom devices and adapted keyboards. This chapter is in four sections: The first section describes Emma in more detail; the second section describes my model of inclusive technical capital; the third section shows how Emma developed inclusive technical capital and its practice; and the fourth section concludes my observations.

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About Emma In early October 2010, Emma had advanced surgery for cataract removal and to implant a new form of plastic lens in both her eyes. Her operation was carried out in India, and it involved a relatively new and experimental technique developed by surgeons in the USA. Although the hospital that carried out Emma’s surgery reported no complications, Emma’s surgeon warned her that it would take time for her eye and nerves to adapt to the treatment. Despite this innovative surgery, Emma could only expect a 15% increase in vision in the medium term at best. However, given the genetic and degenerative nature of her condition, Emma’s surgeon believed that it was also likely that she would lose her sight completely in the long term. Apart from this pessimistic medical prognosis, Emma also found it difficult to get social support beyond her family. For instance, she seemed to have very little support at school and her parents could only offer her limited educational help at home, as they had a limited education themselves. Beyond education, the UAE had only recently developed social ­services for people with disabilities, and social workers were particularly rare in the rural desert areas. As Emma was a Bedouin, there was also relatively little awareness of how to adapt to such conditions in her small village community. Consequently, Emma found it difficult to be accepted and struggled to make others understand that she had the ability to develop a successful engineering career, let alone get her diploma. Despite being determined to fit in with her peers at college, when I met Emma she was finding it particularly difficult to pass her English exams, a necessary requirement for her diploma. Although her disability meant she could have been given exemption from this English exam, she was proud enough to feel it was necessary to take them. For example, when I started supporting Emma, the college counselor, who was also supporting Emma, sent the following e-mail to senior members of our college and Emma’s tutors:

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I called [Emma] today to discuss with her the possibility of sending a request on her behalf to exempt her from IELTS. According to [Javier], Emma failed English, and she may not be able to manage passing due to the severity of her disability (severe vision impairment). [She] has always struggled with English since she joined the college… [She] was very emotional about our continuous efforts to help her by trying to exempt her from this difficult task, but she declined. She said that if IELTS is a requirement for every student in the college, she will not accept to be treated differently. She insisted on continuing to work hard to improve her English and pass IELTS. She firmly stated that “if I have to go back to foundation or if it takes me 30 years to learn English properly, I will do it”. I am speechless in front of such a courage and resilience. I spoke to [Javier], so Emma will audit English and sit for IELTS sometimes in the end of the semester.

Consequently, I felt it was prudent to develop Emma’s educational support using three core and sustainable strategies. My first strategy was whatever support I designed had to be as socially inclusive as possible. As importantly, any technologies that I recommended were to be as close to those ones used by non-disabled students and engineers as possible. These technologies should also help Emma to use the devices for social and leisure activities, and help her communicate and fit in with her friends, family, her community, students, and workmates. My second strategy was I needed to find a cost-effective solution to support Emma. In common with many other higher education colleges and universities, there was no specific funding for assistive devices or new equipment at my college, and assistive technology was expensive. Consequently, whatever I recommended had to be affordable and usable in several different learning and working environments, including lecture rooms, workshops, and the library. My third strategy was I needed to develop training and recommend technologies with a certain degree of future proofing built in. Whatever study skills or technical skills I taught Emma, and whatever equipment I suggested, had to be adaptable for a person with possibly no sight in years to come.

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This technology also needed to be upgradeable to incorporate more advanced forms of assistive technologies later in her education. It was these strategies that later led me to develop a theory of inclusive technical capital.

Inclusive Technical Capital Cultural and Technical Capitals The French social philosopher Pierre Bourdieu (2010) discovered tacitknowledge and practices are learnt through what he called agencies such as the family, peer groups, and institutions. This form of learning, Bourdieu argued, also comprised the accumulation of conscious knowledge of a prevailing culture, including knowledge on the use of and access to fashionable technologies. Bourdieu described his process of learning as acquiring intangible capitals, or the acquisition and internalization of subconscious habits, which lead us to distinguish ourselves from others. Bourdieu termed these habits, habitus, and described them as “principles which generate and organise practices” (Bourdieu 1990, p. 53). In later descriptions of subconscious learning behavior, the psychologists Swartz (2002) and Lizardo (2004) later described habitus as a type of internalized tradition that leads to cultural practices. These practices included higher forms of learning or socializing. Both writers noticed that these habits often led to a deep seated and internalized structure of cognitive understanding, which was beyond consciousness or language. Swartz and Lizardo’s psychological approach was particularly important to my reflection on developing support and the study skills of students with disabilities. Habitus especially precedes many of the learning practices we teach in formal education and, subsequently, lacking habitus, such as basic technical skills, leads to less educational success. Unfortunately, as I discovered in previous research, students’ lack of basic study skills can also lead to negative self-belief and a negative cycle of avoiding work (Hayhoe 2017). Furthermore, lacking inclusive habitus can also lead to students such as Emma being at risk of dropping-out of college.

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This led me to understand that to develop study skills, I also had to develop Emma’s habitus of study skills and the development of capitals in other aspects of education too, such as the social use of technology. It was only through developing these capitals that I could reinforce the habitus in more traditional forms of learning and the social skills in students such as Emma use to develop a belief in learning. This process of learning habitus and a belief in learning, I felt, would become cyclical and self-reinforcing. For example, knowing how to use mobile technologies in class, libraries, or to communicate with friends is acquiring a type of capital. Importantly, for students who are visually impaired or dyslexic, such as Emma was, capitals can lead to accessing audio books, changing colors of screens and type, or zooming into graphics. This acquisition of capitals allows students to acquire further capitals and habitus, such as knowledge from the contents of a book or artwork. This process also allows the student to develop the identity of a knowledgeable and successful student and continues to develop capitals, which reinforces their social identity as successful. Bourdieu argued that it was through tacit forms of learning habitus and tacit-knowledge that successful forms of practice are developed in what he described as a field of study. In Emma’s case, the field of knowledge was electrical engineering, and subsequently to become an engineer Emma had to make becoming an engineer part of her habitus and social identity. This identity should result in the habitus and further development of capitals as a student and practitioner. Bourdieu described this development of practice through habits and capitals as: [(habitus) (capital)] + field = practice. (Bourdieu 2010, p. 95)

Taking inspiration from Bourdieu’s theory of capital, Yardi defined technical capital as, “the availability of technical resources in a network, and the mobilization of these resources in ways that can positively impact access to information and upward mobility” (Yardi 2010, p. 1). Prior to supporting Emma, technical capital was used to evaluate people’s use of social networks, such as Facebook and Twitter. This

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description of capital was also used to describe the ability of people to function, develop, and become included in online communities. What’s more, it was felt that this use of capital increases the chances of developing further capitals, such as socializing with like-minded people and financial capitals. The habitus and capitals gained by working online also lead to other forms of practice. Working online may also allow networkers to access online education, apply for certain types of job, talk with people who may further their social status, and conduct business that will enrich them. For example, Brock et al. (2010) found that the use of online social forums and discussions boards designed specifically for black women enabled their users to develop technical capital. This capital and accompanying habitus also empowered these women to gain knowledge that would otherwise be unavailable to them and led to greater success in other areas of their lives.

Inclusive Technical Capital Initially, inclusive technical capital was defined as a knowledge of inclusive mainstream technologies that promoted inclusion in further forms of social, cultural, and financial capitals. I also felt inclusive technical capital enabled habitus in education and training and led to the acquisition and further learning of study skills, which were needed for educational success. In earlier work, I argued that traditional assistive technologies, such as hearing aids, electronic magnifiers, and devices equipped with braille (such as notetakers), promoted exclusion of disabled people (Hayhoe 2014). This form of exclusion was caused because this traditional technology identified and drew attention to disabled people as a tool of difference; culturally separated and exclude people with disabilities from the practice of those who are able bodied; and provided reasons not to include disabled students in mainstream education. This exclusion was caused when the skills needed by educators to use and teach disabled students were highly specialized and led to students’ removal from lessons to provide separate training.

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Consequently, I argued that inclusive technical capital should be applicable to students’ use of new forms of settings and apps embedded in many mobile technologies. These devices lent themselves to redefinition as inclusive technologies because they were designed to be used by people with disabilities with little or no adaptation out-of-the-box (Hayhoe 2014). Subsequently, I felt that modern mobile devices were not just practical tools, but could also be powerful tools of social inclusion, and have further applications in educational inclusion. These further applications were the result of students’ ability to create and share information among themselves through mobile technologies, and therefore develop their own technical capital (Hayhoe 2012, 2013). Consequently, I argued that Bourdieu’s equation on practice could be redefined in terms of inclusive practice as follows: [(mainstream habitus) field = inclusive practice.

(inclusive

technical

capital)]  +  mainstream

Evidence supporting my theory of inclusive technical capital seems to exist in the research literature. For example, digital technologies have provided inclusive help in making literature, communication, and knowledge available to disabled students (Baga 2012; Chen 2012; Gkatzidou and Pearson 2009). Advanced software also helped to overcome barriers to education through, for instance, the enlargement or re-coloring of text on screen and the representation of sound as text (Hayhoe 2014). I also argued mobile technologies have seen a paradigm shift in engineering design, inevitably leading to a contemporary philosophy of inclusive technology (Hayhoe 2014). In this new paradigm, accessible systems are unrecognizable from their mainstream counterparts. Examples of this technology are Apple’s iOS, which claimed superior accessible features when it was first coded, and which blended accessibility in mainstream apps and functions (Apple 2015). This redefinition led me to adapt teaching methodologies and students’ work and to rethink my methods of evaluating inclusive features in modern tablet computers. Importantly, these inclusive features were

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in the early stages of development when I started this evaluation, and so were not designed to conduct such evaluations, leaving me with few comparisons. For example, in an evaluation of technical study skills of university students with disabilities, I found Android and iOS apps needed to be taught as formats (text, audio, and photographic/video formats) and gestures (Hayhoe 2015). I took this decision because Android and iOS’s accessibility features were designed according to media formats (see, e.g., Apple 2015). Consequently, I felt that teaching these formats would help students in their future careers, when they came across similar technologies— that is to say, these skills were sustainable. Unfortunately, teaching trials showed that study skills required many of the media functions that used the same formats. It seemed these devices were designed according to media formats, rather than the study skills the devices they were said to support. My evaluation of the technologies and the design of these devices was not apparently an issue that helped to support traditional technical capital (Hayhoe 2015). This was because using these devices for a long time allowed the user, if the functions were accessible, to create, manage, and swap information in different formats with users of a similar background. What’s more, as mobile technology did not make the user look disabled, they also allowed users to keep their disability anonymous and develop a culturally ambiguous identity. For example, both operating systems allowed text enlargement, color reversal, and video files that could play back information. However, as these were software features, they didn’t mean the user had to use customized hardware that “looked” different to people walking into a class. Consequently, I concluded that mobile technologies had greater potential in mainstream classes and lectures, as they allowed their users a certain sense of cultural anonymity and promoted technical democracy. However, both Android and iOS mobile devices had issues that showed there was a discrepancy in the designs of both system. For example, Android’s functions allowed for audio recording, organizing, and sharing audio files whereas iOS’s didn’t. This made these devices

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possibly better for students who needed to support organizational skills or who needed to take audio notes. Conversely, iOS had apps that allowed users to develop photonegative images, time-lapse recordings, and custom gestures, whereas these functions weren’t available in Android (Hayhoe 2015). This made iOS possibly better for students who had certain types of visual impairment, that needed alternative-colored or slower image recordings.

Emma and Inclusive Technical Capital Emma’s Support in Class Prior to My Arrival Prior to my arrival at the college, there had been educational support for Emma. For instance, to address Emma’s problems of learning and her technical communication, her counselor and teachers had previously met to discuss her support. During this meeting, they arranged measures to develop a holistic system of classroom support. The strategies that were agreed were outlined in the list below: • “Extensive technician support during practical activities, in particular; Mechanical tasks… • Written course material (notes/[handouts]/etc.) should be scanned and loaded on the G: drive for [Emma] to access and magnify as required (ILC). • Install engineering SW/resources on [Emma’s] LT/iPad (IT Support). • Provide all paper material (course notes/HO) on A3 (ILC). • Request (IT Support) to configure [Emma’s] LT/iPad (Win) special settings for ease of access including; Magnifier, On Screen KBRD, Narrator and High Display Contrast. • Extra support for technical English?” Personal communication from the Faculty Member of Engineering, received on the November 24, 2011. In addition, Emma’s teachers found there were problems that couldn’t be addressed simply, as they were beyond her labs’ lecture rooms.

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For example, Emma still had problems with practical issues indirectly related to her early education, which affected her self-belief and self-esteem. This issue was like previous studies I’d conducted with programmers and artists (Hayhoe 2008, 2011). For example, because Emma received little support with her written language when younger, her technical vocabulary was significantly behind that of her classmates. Emma’s early experiences were also reflected in her grades, as she had good pass marks for her technical subjects (including As and B+s), but was failing in her English classes. This was unfortunate, as her course was delivered entirely in English and her spoken Arabic was ineffectual in exams. In addition, Emma’s lack of language skills also had a knock-on effect in her technical classes, as she was also failing to grasp the technical lexicon of her subject. Consequently, I was told that although she could articulate her ideas verbally, Emma’s written skills posed a risk to her technical grades.

My Initial Observations of Emma As with other support strategies, I decided to start with the positives to her college life, and when I first started working with Emma I noticed there were four positive ways that she’d adapted to college life. I thought I could build on these skills in her support plan or use them as reference points of her ability. The first positive was that Emma seemed to have few problems with mobility in normal light, and she could develop black-and-white designs relatively easily. This suggested that Emma’s minimal light perception still allowed her to complete several of the fundamental tasks in class. The second positive was that Emma’s counselor told me she wouldn’t need support in getting to classes, traveling to and from the campus, or even making her way around the classroom. Emma had been on the campus long enough to know how to get around with help from friends.

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This observation told me she felt comfortable in her environment and still had enough self-esteem to feel comfortable around the ­campus—that is, like previous younger students I’d worked with, she was socially independent (Hayhoe 2008). The third positive what that I’d discovered Emma adapted to much of the technical drawing and engineering equipment in her labs ­independently, too. In these labs, I also noticed that Emma developed close relationships with a few students around her, and this meant she could call on help on the rare occasions when she needed it. For example, in one instance I observed Emma was using the lab’s oscilloscope without much difficulty using her residual vision, as the on-screen pulses of its screen were large and bright enough against its dark background to make out. In this way, Emma seemed to have developed inclusive technical capital through concentration on using more recognizable interfaces. The fourth positive that I found was her relationship with the other students in class, and this became the most important aspect of inclusive technical capital development. When she was with many of her close friends from her home village, especially, Emma found that she could also ask for help, and in doing so she developed highly effective social skills. For instance, during complex exercises using micro-electronics Emma often asked friends on nearby benches for help if she could not recognize a color or the smaller components she had to use. Although these requests sometimes caused their own problems— especially as some of her fellow students found it difficult to give time when they had to continue with their own work—Emma also developed the social soft skill of judging other’s needs, when to ask and when to lay off. Despite these positives, Emma’s main problem when I met her was that she’d been using three different types of old-fashioned assistive device for months. These devices had limited success in improving her experience of lectures or workshops, and what was worse, the equipment had singled her out as different in class. What’s more, Emma also found it difficult to use these traditional technologies to access information via the web and improve her technical

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literacy. This has severely restricted Emma’s ability to use mainstream PCs, laptops, and so forth, and so potentially restricted her development of inclusive technical capital. Furthermore, Emma’s existing assistive devices were often too large and unwieldy to carry around classes, expensive enough to make it difficult to secure much further funding for them, and socially awkward enough for her to be seen with them. In these early meetings with Emma, this situation was about to get worse. One of the college’s technologists had recently secured a last portion of funding to buy two more pieces of specialized assistive equipment: a computerized camera with an arm that cost US$2895 and a large print keyboard that cost US$65. These pieces of equipment were even more heavy and immobile than previous pieces of equipment, could only be used in certain classes and made her stand out even more. Consequently, even though she could cope in many situations, Emma had developed an imperfect system of coping strategies that potentially posed many risks to her health, confidence, and well-being. More particularly, Emma was more vulnerable to errors and mistakes in a course that required her to use potentially dangerous equipment and increasingly dexterous skills. Getting Emma to use mainstream devices was therefore my primary target for providing a means of support. Consequently, and because I only had limited time to work with her, it was also decided to use these mainstream devices to improve her technical literacy skills during classes.

Initial Observations on Emma’s Use of the iPad To begin with, I advised Emma to buy an iPad 2, as they had received good reviews from organizations for the blind, including: the UK’s Royal National Institute for the Blind (Beaumont 2010) and the US’s National Federation of the Blind and American Association of the Blind (Clymer 2010). At the time—early 2012—these devices cost around US$580. The features especially noted as being helpful in the iPad 2’s reviews were: its use of speech, particularly in making talking books accessible; its ability to change its background color to suit the reader; and

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its zoom facility that enabled on-screen text to be increased by up to 200%. What’s more, although there was no published research on this topic, there was a research report presented at a reputable conference, which offered positive findings of an initial study of the iPad’s use with low vision readers (Chalam and Kubota 2011). These subsequently became the features and apps that were most readily used in my support sessions. Unfortunately, as I only had a short time working with Emma, it’s difficult to draw firm conclusions from this period on her technical literacy skills. However, several factors were immediately noticeable that affected her development of inclusive technical capital. The good points about the iPad were that a large amount of technical literature was available wirelessly through iTunes and other applications. Emma especially managed to find works relating to science and science fiction—the latter was her preferred social reading that also helped her develop her technical literacy—often at no cost. During our sessions, we also found the screen zoom was useful, although the iPad still had to be held close to her face when reading, or she had to use an extra magnifying lens. In addition, the white ­writing on a black page feature made the text easier for her to see, although some pictures in scientific texts were often difficult to make out in the same mode. Outside class, there were also advantages. For instance, the devise was small, light and could easily be carried with her books and equipment. As it was a mainstream, fashionable technology, Emma was not embarrassed to be seen with the iPad, and it turned out to be considerably less expensive than her camera arm. What’s more, Emma also had access to many other interactive multimedia features on the iPad for leisure or education, which she found useful. However, in my sessions supporting Emma, I also noticed two problems were recorded with its use, making it difficult for Emma to maximize her inclusive technical capital. The first and main problem was that the control panel was complicated, making the iPad confusing without specific instructions. Unlike

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the claims on the Apple Web site, the iPad had to go through a lengthy setup before it was ready, and no training material in sound format was provided with the device. It’s unknown whether Apple sells a model that is already set up for blind people, but it is doubtful whether someone with little or no sight would be able to read or comprehend the icons and small writing on the accessibility setup screen. As Emma had not used a tablet computer before, it was difficult to get used to tapping the screen. This problem was not easy to solve as the instructions in the accompanying booklet were in small print and inaccessible to Emma’s low vision. This also made setting the computer up particularly difficult. The second problem we found was the voice facility to name the icons could be confusing. The standard voice spoke very quickly and constantly when she moved her hand over the screen and was loud and embarrassing to use in public areas. Culturally, this was very difficult, as in the Emirates, having a loud voice speaking English is not expected in public. To remedy this, I recommended Emma buy ear phones, although this would make it difficult to hear outside instructions in class. Emma also found it difficult to understand the voice’s accent, as it had a strong US accent, that Emma was not used to hearing. As this caused constant embarrassment, we eventually turned this function off, and Emma had to hold the device close to her face.

Conclusion It’s difficult to draw conclusions about the iPad’s usefulness five years after, as Apple updated its assistive settings since this case study. However, as with my experiences since this first case study, the lack of initial training or information has made the iPad a useful but imperfect educational aid. However, there are still many more advantages to the iPad as an inclusive technology than traditional and excluding assistive devices. Most particularly, Emma and I found the iPad was more economical and easier to carry than many similar devices. The iPad also allowed

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Emma the inclusive use of a mainstream technology rather than the symbolic use of existing, indecorous assistive technologies. She found the latter to be more embarrassing to use and singled her out as an impaired user in the classes that she had to use them in. Consequently, although Emma still had to work her way through the evolving educational functions bit by bit, she was increasingly able to use its social and multimedia functions. This gave her more mainstream technological inclusion and increased her inclusive technical capital. What’s more, because the iPad’s facilities were usable by low vision and totally blind students, it also had a significant degree of future proofing. As Emma’s blindness increased, she would be able to increase her use of the device and develop new skills to adapt to her new impairments. In an Emirati context, from this early trial on the iPad there were also reasons to be optimistic about moving away from specialized, often clunky traditional assistive technologies. However, Apple needs to be more sensitive to the Emirate’s and other countries’ cultural needs for this to be a more effective tool of cultural inclusion. This case also shows that students with visual impairments need to develop inclusive technical capital to further their education, and subsequently their social, cultural, and financial capitals. Modern mobile devices can help this development and potentially enhance mainstream experiences of learning and communication that traditional assistive technologies still fail to do. However, for this development to happen students with disabilities, their teachers and supporters must evaluate their learning according to individual impairments and educational needs. Educators working with students with visual impairments must also judge which functions are important for the development of study skills given their contextual and environmental needs. What’s more, the most popular mobile operating systems still need to develop their functions in cooperation with educational institutions and students with disabilities. In addition, developers need to make mainstream native apps and their usability by people with disabilities a standard. Hardware manufacturers also need to think about how their devices can be made financially accessible and to evaluate their potential as

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tools of inclusion and cultural diversity. What’s more, technologists, computer scientists, and industrial designers need to understand that their users with disabilities will also need to cope with the future deterioration of their impairments. In these latter two respects, the iPad 2 has made steps forward in its accessibility remit. However, technologists still need to change further, and this change must become a part of their technological culture. Only then will inclusive technical capital become more freely available through education, and students feel a sense of inclusion.

References Apple. (2015). Accessibility. https://www.apple.com/uk/accessibility/ios/. Downloaded on 20 January 2015. Baga, J. (2012). E-Resource Round Up: Emerging Technology as Assistive Technology: Conference Report. Journal of Electronic Resources Librarianship, 24(1), 46–48. Beaumont, C. (2010). Apple iPad Is ‘Great Gadget’ for Blind People. Daily Telegraph (Online). http://www.telegraph.co.uk/technology/apple/7801280/ Apple-iPad-is-great-gadget-for-blind-people.html. Downloaded on 17 January 2012. Bourdieu, P. (1990). The Logic of Practice. Stanford, CA: Stanford University Press. Bourdieu, P. (2010). Distinction. London: Routledge Classics. Brock, A., Kvasny, L., & Hales, K. (2010). Cultural Appropriations of Technical Capital: Black Women, Weblogs, and the Digital Divide. Information, Communication & Society, 13(7), 1040–1059. Carr, W., & Kemmis, S. (2003). Becoming Critical: Education Knowledge and Action Research. Abingdon, Oxfordshire: Routledge. Chalam, K., & Kubota, R. (2011). Abstract PO557. American Academy of Ophthalmology (AAO) 2011 Annual Meeting, Orlando, Florida, Paper Presented October 24, 2011. Chen, L. L. (2012). Integrating iPad in a Special Education Class: A Case Study. In T. Bastiaens & G. Marks (Eds.), Proceedings from the World Conference on E-Learning in Corporate, Government, Healthcare and Higher Education, 2012. Chesapeake, VA: AACE.

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Clymer, B. (2010). Apple’s iPad Brings Easy Reading to the Blind. Forbes Magazine (Online). http://www.forbes.com/sites/booked/2010/04/12/applesipad-brings-easy-reading-to-the-blind/. Downloaded on 17 January 2012. Gkatzidou, S., & Pearson, E. (2009). The Potential for Adaptable Accessible Learning Objects: A Case Study in Accessible Vodcasting. Australasian Journal of Educational Technology, 25(2), 292–307. Hayhoe, S. (2008). Arts, Culture and Blindness: Studies of Blind Students in the Visual Arts. Youngstown and New York: Teneo Press. Hayhoe, S. (2011). Non-visual Programming, Perceptual Culture and MulSeMedia: Case Studies of Five Blind Computer Programmers. In G. Ghinea (Ed.), Multiple Sensorial Media Advances and Applications: New Developments in MulSeMedia. Hershey, PA: IGI Global. Hayhoe, S. (2012). Using an iPad with a Blind Student: A Case Study at Sharjah Women’s College. In S. Dowling et al. (Eds.), eLearning in Action (Volume 1): Opening Up Learning. Abu Dhabi: HCT Press. Hayhoe, S. (2013). A Review of the Literature on the Use of Mobile Tablet Computing as Inclusive Devises for Students with Disabilities. In Proceedings of the Current Trends in Information Technology Conference (CTIT 2013). New York City: IEEE. Hayhoe, S. (2014). The Need for Inclusive Accessible Technologies for Students with Disabilities and Learning Difficulties. In L. Burke (Ed.), Research, Reflections & Arguments on Teaching & Learning in a Digital Age. Melton, Suffolk: John Catt Educational Publishing. Hayhoe, S. (2015). A Pedagogical Evaluation of Accessible Settings in Google’s Android and Apple’s iOS Mobile Operating Systems and Native Apps Using the SAMR Model of Educational Technology and an Educational Model of Technical Capital. In Proceedings of the 9th International Technology, Education and Development Conference (INTED 2015). Valencia: IATED. Hayhoe, S. (2017). Initial Analysis from a Grounded Methodology Study of Risk Taking and Avoidance by Students with Visual Impairments During Visual Art Projects. MuseumEdu, 5, 183–201. Lizardo, O. (2004). The Cognitive Origins of Bourdieu’s Habitus. Journal for the Theory of Social Behaviour, 34(4), 375–401. Swartz, D. L. (2002). The Sociology of Habit: The Perspective of Pierre Bourdieu. The Occupational Therapy Journal of Research, 22, 615–695. Yardi, S. (2010). A Theory of Technical Capital. Paper Delivered to the TMSP Workshop, Georgia Institute of Technology, Georgia, US, February 11–12, 2010.

12 Examining the Inclusion of People with Visual Disabilities in Workplace: A Greek Case Study Vassilios Argyropoulos and Vassilios Papadimitriou

Introduction Work for individuals with special needs is considered to be of great importance because it offers perspectives of social inclusion, recognition, reinforcement, and consolidation of their self-image and self-esteem (Keller et al. 1999; Zhou et al. 2013). Specifically, work in blind people’s lives seems to occupy a central role. They consider work as a virtue, and it seems that their motives for working are more internal than financial (Crudden 2002; Frase 2009). However, decreased vision is associated with a significantly higher likelihood of not working or being underemployed compared to sighted individuals (Sherrod et al. 2014; Donaldson 2017). In developing countries, the unemployment rates of individuals who are blind or visually impaired are ranging from V. Argyropoulos (*) · V. Papadimitriou  Department of Special Education, University of Thessaly, Volos, Greece e-mail: [email protected] V. Papadimitriou e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_12

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90 to 100% (ILO 2012 in Wolffe et al. 2013). As for the developed countries, the employment rates vary. Reports reveal that the employment rates ranged from 37% to less than 47% in the USA (Bell and Mino 2013; Reed and Curtis 2012), approximately 42% in Australia (Blackshaw 2014), whereas it catches up 73.6% in Canada (Benoit et al. 2013). This means that the majority of the individuals with visual disabilities is living in poverty or is dependent on the government benefits (Donaldson 2017). In addition, women and individuals with early-onset vision loss are less likely to work or seek to work compared with men and adventitiously blind (i.e., those who lost their sight, either totally or partially, in the course of their life), respectively (Sherrod et al. 2014). Regarding visual status, individuals who were blind are expected to be employed in higher level positions than partially sighted (Leonard et al. 1999), whereas according to Darensbourg (2013), severity of vision loss was found to be statistically significant in relation to competitive employment. In specific, he found that “severity of vision loss was found to be twice as likely to predict competitive employment, with consumers with lesser vision loss being more likely to find such employment” (p. 32). In general, it has been supported that higher educational attainment decreases the disparity between the employment rates of sighted and visually impaired people (Bell and Mino 2013; Kirchner and Smith 2005). While it is evidence-based that the majority of individuals with visual disabilities is very much dependent on government benefits (see Donaldson 2017), a wider array of career possibilities has developed in many countries due to legislative and societal changes. It seems that these changes have reduced discrimination and prejudice toward them. Nowadays individuals with visual disabilities can perform a great variety of jobs such as lawyer, artist, accountant, physical therapist, telephone operator, secretary, customer service representative, food service worker, factory worker, financial analyst, teacher, medical transcriptionist, day care worker, counselor, computer programmer, clerk, and more (Frase 2009; Wolffe and Spungin 2002). Nevertheless, as mentioned above, the vast majority of people who are blind or visually impaired are working in many countries as telephone operators due to a deeply embedded obsession that specific effortless occupations fit blindness (Fleming and

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Fairweather 2012). This situation has resulted from actions by social and political networks, but it seems that it does not promote the blind peoples’ self-esteem and quality of their lives (Goertz et al. 2010). It is worth mentioning that the greater percentage of people with severe visual disabilities works in public services rather than in private business. This phenomenon has been attributed to the employers’ lack of knowledge and adequate information about the blind persons’ skills and capabilities, since blind or visually impaired persons comprise a very small percentage of the total labor force (Crudden et al. 2005; McDonnall et al. 2014). In addition, many sighted colleagues of people who are blind demonstrate complete ignorance of the formers’ ­special needs and on the other way round blind people do not know how to manage and improve this situation. It sounds like a vicious circle (Colub 2003). Research activity with respect to the above phenomena focuses on issues related to: (a) employers’ prejudice about blind people’s low capabilities and (b) extra expenses for providing blind employees all the appropriate adjustments and accommodations (Colub 2003; Heath et al. 2015; McDonnall et al. 2014; Wolffe and Spungin 2002). Job accommodation comprises a series of supplementary material and services such as braille, and implementations of assistive technology, which has been proven extremely helpful to employees with visual disabilities in order to perform effectively in their daily routine tasks (McDonnall et al. 2015). For example, smart phones and their applications, screen readers, braille displays, and internet access are tools that may facilitate the career life and self-reliance of blind employees (Babu and Heath 2017; Heath et al. 2015). Nevertheless, it is noticeable that job-skill trainers, employers, or policymakers have not yet given the necessary prominence to these tools (Heath et al. 2015). Also many researchers have mentioned that people with visual disabilities have to take into account a number of environmental conditions in order to accept a job, such as (a) the network of public transit, (b) the option of carpooling, and (c) natural obstacles within the working environment (Crudden and McBoom 1999; Lee and Park 2008; Rumrill et al. 1998). In case of individuals who lost their sight in midlife and returned to their jobs as blind persons, they had to

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adjust to the required changes in their lives, deal with the new hurdles, and struggle to get aware of the abilities of individuals who are blind (Blackshaw 2014).

Career Education and Individuals with Visual Disabilities Career education may be considered as a learning process which is embedded within a web of relationships and interactions. Wolffe (2014, p. 411) pinpoints the core function of career education by stating: “Career education focuses on the development of knowledge, the refinement of innate talents, the promotion of skills including the work habits or behaviors needed for success in employment, while it encompasses a broad understanding of the world and how it works”. Career education, especially when it comes to individuals with visual disabilities, comprises a complexity of overlapping domains coupled with a wide range of skills (such as daily living skills) helpful in understanding quality of life. It has been mentioned though by researchers that people who are blind fail to show well-developed academic skills and work behaviors (Crudden et al. 2005). In fact, individuals with visual disabilities need to develop a wide range of skills because they have to face obstacles regarding mobility (i.e., mobility and orientation skills) and barriers regarding access to information (i.e., use of assistive technology). It is evident that daily living skills, travel skills, social interaction, orientation, assistive technology, and self-determination are strongly related to the field of career education when it comes to individuals with visual disabilities (McDonnall 2011; Wolffe 2014). According to Wolffe (2014), the lifelong learning model for career education consists of six levels: career awareness, exploration, preparation, placement, maintenance, and mentoring. At this point, it would be an omission not to refer to family involvement, which is always crucial throughout the ages (Landmark et al. 2010). Initially, young students with visual disabilities learn what work is and why it is necessary for all people and the wider community (Wolffe 2014). It has been suggested that transition

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planning should start in the elementary grades (Crudden 2012). The next step is the career exploration, which begins in middle school (junior high school) and ends in the first or second year of high school. At the end of this level, students with visual disabilities are expected to articulate vocational interests, abilities, skills, and values (Wolffe 2014). The following stage is the career preparation, which takes place in high school or earlier and aims at compiling information about a specific vocation (Landmark et al. 2010). Finally, students with visual disabilities may acquire early work experience in volunteer or paid work during high school, which is regarded as one of the strongest predictors of future employment (McDonnall 2011). It has been supported that students with visual disabilities should preferably attend few different jobs during high school, each held for a longer length of time rather than staying for a short period in several jobs (McDonnall and O’Mally 2012). Career maintenance involves retaining employment, advancing according to plan and achieving career goals, while mentoring is about successful adults who advise younger employees along their career paths (Wolffe 2014). Both of these stages are taught in adulthood and should be highlighted as crucial because they prepare the ground for smooth and successful transition from school to work environment. In turn, a study follows quoting pinpoint examples of individuals who transitioned from mainstream and special educational settings to workplace.

The Study The aim of the present study was to investigate the experiences of people with visual disabilities from their working environment regarding their career education they received from school as well as their career options. The second aim of this study was to investigate the emotions of people with visual disabilities in their workplace and comment on their relationships with co-workers and employers.

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Method Participants The participants were traced through associations and organizations for individuals with visual disabilities which were located in two large cities in Greece. Twenty participants took part voluntarily in the study, and they were all members of associations for the blind. Their age ranged from 29 to 42 years (Μ = 35.55, SD = 3.93). Of the 20 participants, nine were blind (eight men and one woman) and eleven had low vision (eight men and three women).

Instrument The data of this study were obtained via semi-structured interviews. The authors developed an interview guide, which was consisted of the following: (a) education/vocational training, (b) transitional stages from school to work, (c) career options, (d) obstacles, (e) emotions and workplace, and (f ) interpersonal relationships at work. In total, the interview guide consisted of 32 questions.

Data Analysis The qualitative data analysis used in this study included the development of categories (Dey 1993). For each basic theme broad categories were developed, each of which included “middle-order” categories, developed by the interview guide and data themselves. Working out the “middle-order” categories, we eventually developed a more detailed analysis, splitting some categories into sub-categories.

Reliability Reliability was ensured by the measurement of interrater agreement, according to Miles and Huberman (1994) regarding the development of “middle-order” categories and broad categories (Robson 2002).

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The initial calculation of the proportion of agreement between the authors resulted to 80% index of agreement. After this procedure, the discussion of the disagreements concluded to the revision of the structure of all categories and the formation of the final concordance of agreement to 98% for all broad, “middle-order” and sub-categories.

Results The results were grouped into two sets: (a) the set of data provided by the Individuals with Low Vision (ILV) and (b) the set of data provided by the Individuals with Blindness (IB). Four broad categories will be presented in the context of this study.

Career Options This broad category comprises the following “middle-order” categories: (i) participants’ occupations, (ii) limited working positions, and (iii) the role of the state and the associations of the blind.

Occupations Of the ILV, 36% were telephone operators, 18% builders; three were working as psychologist, secretary, and sound mixer, respectively, while 18% were seeking for a job. Of the IB, 56% were telephone operators, 33% had studied law but only one of them was an active lawyer, and 11% were earning their living as musicians. The living of the rest of the participants who were not working was based exclusively on the allowance which they received by the state.

Limited Working Places A relatively big percentage of the ILV (41%) stated that they had been unemployed for a long time because of the very time-consuming procedures on behalf of the state services to get a job. The majority of the ILV

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also mentioned that the only occupation which seemed to be feasible for them was to work as a telephone operator. For example: the thing is that you have to wait many years to work in a state service and the only organized procedure to get a job is to work as operators. It seems that the operator thing is the only available job for us.

The same statement was expressed by all IB, mentioning that the only path which connects them to labor is the profession of the operator. Their comments were quite illuminating: “unfortunately, society and government ‘pushes’ blind people to this direction…to work as telephone operators, since the law give us a priority to this kind of job”, “I know we don’t have many alternatives in choosing whatever we want for our living…blindness constitutes a barrier for many jobs”, “the law give us a priority [compared to the sighted] to work in special education as special education teachers provided that we get a relevant university degree in education. The problem is that there are few special schools for the blind, so…”

The Role of School, State, and Associations of the Blind The vast majority of the participants (81% of the ILV and 78% of the IB) stated that many problems they face in their jobs are due to superficial political decisions. In specific, they mentioned the lack of: (a) organized career education in school, (b) working positions, (c) job coaching, and (d) public vocational rehabilitation centers. They mentioned that there is a great need to widen their occupational horizon through career programs and vocational education and training. They criticized the absence of career education while they were at school and they commented on transition traumatic experience when exiting from one system (mainstream or special educational setting) into the other (working environment). For example: “there was nothing for us during the school years, I mean regarding jobs and stuff…of course we had plans and dreams to do this and that after

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school but in the end we had to face the reality which was very tough… end up as a telephone operator”, “I believe we needed a guidance, a kind of experience before we go to work”, “job coaching, oh yes,…, job coaching was exactly what we needed; you see it’s not only our problem, it’s also the employers’ problem. These guys don’t know anything about us, about our needs, some of them are open to accept and support but others are prejudiced and sometimes hostile”.

According to the obtained data, the main source of their information about work positions was their associations in which they were members. For example: “The association is the only secure source to be informed about jobs. Of course there is the internet but it is not easy to have access”, “many times our associations stand up for our working rights and this is why I trust them more than the state services”.

Obstacles This broad category refers to situations which were taken place within the participants’ working environment and refers mainly to issues of accessibility and secondly to the behaviors of their sighted co-workers.

Obstacles Within Workplace All participants identified situations which characterized them as drawbacks and were taking place within their workplaces. Specifically they mentioned (a) lack of or limited accessibility in their workplace, (b) limited accommodations and adjustments which were allowed in their workplace to enable their full access to facilities and information, (c) lack of real acceptance, and (d) lack of an inclusive ethos excluding them from participating in wider work and community activities. The following extracts are examples of the above sub-categories:

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“you have to prove all the time that blind people are not useless in their jobs. This situation is very tiring, disappointing and many times makes me angry”, “public transportation should facilitate our mobilization to work otherwise I cannot afford the luxury of taking a taxi everyday…I prefer to stay home and receive my allowance”, “many employers do not provide us the necessary equipment to have access to information, for example a laptop with jaws on it and stuff like that…in that case how do they expect to reach our full potential?”, “Many times I had the feeling that I was treated in unfair way because of my blindness. Companies should provide equal opportunities in their promotion scheme”, “There have been negative remarks about my disability and my effectiveness in work”.

Ignorance of Sighted Co-workers The vast majority of the participants (82% of the ILV and 89% of the IB) mentioned that their sighted colleagues knew nothing about people with severe visual disabilities or blindness and many of them used to under or over-estimate their abilities. For example: the sighted have no clue about blindness or legal blindness and some of them [he laughs] believe that it is a kind of miracle that I can work and moreover to meet the requirements for this position.

The rest of the participants (18% of the ILV and 11% of the IB) mentioned that their sighted colleagues knew things about blind people, their needs, and their capabilities because of the formers’ personal involvement on acceptance within work. A few representative extracts are provided below: “I told them [sighted colleagues] that I am always at their disposal to discuss any matter that has to do with blindness”, “they only know us as operators, nothing more”, “many time I have the feeling that they want to learn more about us but for some reason they hesitate…, and then I take the initiative”.

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Emotions in the Workplace The thematic area of this broad category consists of the participants’ emotions which they experienced in their workplace. These emotions can be grouped into two sets; the positive and the negative ones.

Positive Emotions With respect to emotions with positive content, 45% of the ILV referred to independency, activation, and socialization. For example: “when you work you feel alive, productive and active. You are not living in isolation mourning for your bad fate”, “work offers money, better life and above all it offers alternatives from the mundane routine of your life”.

The 18% referred to the joy of communication while the rest of the ILV mentioned the pleasure they experience from work when they manage to fulfill their objectives. Relevant extracts are provided below: “you share your ideas, it is a kind of brainstorming which I find fascinating”, “it is not only a matter of money, you feel significant, you feel that you belong to a working community”, “I get a great satisfaction from my work”, “it is what I call co-existing”.

The participants who were blind had similar feelings but not the same with the ILV. For example, 33% of them stated that for them work is a means to get away from misery and isolation. In addition, they referred to emotions with positive content such as self-esteem, the sense of independency, and active life. For example: “it is not good for us to stay home. This segregation leads to isolation and in the end you end up with depression”, “work is the antidote to our misery”.

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Negative Emotions On the other hand, all participants mentioned that there were also “dark sides” which were linked to their work situation. More specific, the dominant emotion for all participants (55%) was anxiety of being punctual for work because of inconsistencies between the timetables and the actual times of operation of public transportation. In addition, the participants referred to a multiple sources of anxiety about (a) their effectiveness at work, (b) their work behaviors, and (c) their future in work given the economic crisis. Some extracts are provided below: “I have to get very early in the morning to make sure that I won’t be late at work”, “you never know, strikes, delays, demonstrations all this stuff might cause you problems to get on time”, “as a phone operator I have to prove all the time that I can handle all requests from our clients even though our sections many times don’t answer the calls”, “I feel that my future is bleak with all this economy crisis, dunno…”, “I feel that there is no information and in-service training to update my knowledge regarding my job”, “I am afraid that one day I’ll do a serious mistake and I really don’t want to let down my boss or mess up with my colleagues”, “I have to bear the burden of a job that I don’t like. I have to reach a compromise between what I want and what I have…”

Interpersonal Relationships in the Workplace In this section, the participants described their relationships with their employers and colleagues. The participants with low vision (46%) and 33% of the IB believed that they received positive social support from their employers and colleagues which in turn had a positive impact on their functional ability. They referred to confidence and recognition, for example: “I have good relationships with my colleagues and my employer is very satisfied from my work”, “his [employer] behavior is nice and he is always discreet when he corrects me”.

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In addition, it was mentioned from the 18% of the ILV and the 66% of the IB that they used to spend some time outside of work drinking coffee or having dinner. However, the 36% of the ILV and the 55% of the IB said that the balance of their relationship was fragile because of many factors such as absence of cooperation because of the nature of the job, a. positive social support, “I cannot interact as much as I want with my sighted colleagues because I have to stick on the calls (telephone operator)”,

b. lack of confidence and latent social racism, “My employer doesn’t want to pressurize me at all, but she doesn’t do the same to my sighted colleagues”, “Sighted people usually don’t prefer to collaborate with their blind colleagues”, “My sighted partners don’t know how to approach me and they prefer to keep a typical form of communication with me”,

c. indifference, “I believe that the sighted will not dedicate time to show us [the blind] things in work,.., their attitude is kind of indifferent”, “some of my sighted colleagues don’t know even my name!”.

Discussion The aim of the present study was to investigate the career and employment experiences of people with visual disabilities. The participants highlighted issues relevant to the following categories namely (a) career options, (b) lack of a structured career education in school, (c) transitional stages from school to work, (d) obstacles in working environment, (e) feelings in the workplace, and (f) interpersonal relationships. Emphasis was given to the lack of a learning model for career education during school years, as well as for

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the ignorance of the sighted colleagues regarding blindness and accessibility. Nevertheless, the participants underlined that the level of satisfaction they were getting from work “as active members of the society” was very high and as result they managed to have a productive living at all levels. The results confirmed that the profession of a telephone operator occupies a central role in the blind people’s “work horizon.” This profession has become the “traditional job for the blind” in Greece and it seems that this phenomenon is a result of the convergence of the social system of the country with the acting of the state as legal system. The aforementioned situation is in line with other countries which actually provide advantages to blind people when applying for certain jobs, such as telephone operators (Bengisu et al. 2008), instead of encouraging them to find their own job independently, which is rather significant for their self-esteem (McDonnall and O’Mally 2012). This system of reserved working places might be the case for many arguments. On one hand, most of blind people are employed but on the other, the spectrum of their professions is very limited and static. In addition, it is worth mentioning that this system operates under an obligatory quota system of employment, which refers mainly to the public companies and institutions (Crudden et al. 2005). For this, the participants of the present research characterized the job of the telephone operator as a one-way option for them irrespective of their skills or preferences. Accessibility was another issue, which was stressed out by the participants. According to Crudden and McBoom (1999), accessibility is of great importance and has a pivotal role in the blind people’s decision to accept or reject a job. To be more specific, this was stressed out mainly from the IB and not by the ILV. Regarding the working environment, accessibility is inextricably interwoven with accommodations which are regarded as a key to the successful employment of persons with disabilities (Rumrill et al. 1998). Hence, adjustments, such as adding a ramp, glare reduction and adjusted lighting, accessibility to all the areas via the white cane, voice or e-mail messages instead handwritten notes, labels or documents transcribed in braille, desk or laptop computers coupled with screen readers, braille displays, braille pads and tablets, and so on, have been proven effective for workers with visual disabilities (Wolffe 2000a). Proper use of accommodations can ultimately lead to successful, competitive employment (McDonnall and Crudden 2009).

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It was also evident from the present study that the participants had to deal with uncomfortable feelings during work. Relevant research underscores the difficulties and obstacles that individuals with visual disabilities often face during their search for work (e.g., inaccessibility of job search and interview process), as well as within their working environment (Grussenmeyer et al. 2017). These difficulties may derive not only from prejudice (Benoit et al. 2013), social stereotypes, and misconceptions about visually impaired people (Blackshaw 2014; Donaldson 2017), but also from the belief that people with disabilities are less productive compared to non-disabled employees (Gartrell 2010). Nevertheless, all participants mentioned that they have attained a status equivalent to their sighted colleagues. This may be partially due to the successful implementation of their social skills, which is an essential prerequisite for the maintenance of a vocation or the establishment of a career (Wolffe 2014). The financial independence as well as the sense of adequacy strengthened their self-esteem, since they were integrated in the job market evenly and they were set free from the anxiety of the unemployment status. Based on the previous, it can be argued that the degree to which a blind person has achieved a social or professional position is the degree to which he/she is likely to achieve self-acceptance and self-esteem. In addition to this, the IB characterized the working environment as a place which can help you to get away from self-pity, isolation, and loneliness. According to Tuttle and Tuttle (2004), self-concept and self-esteem of a blind person emerge from interactions with the physical and social environment. Hence, a working environment could be an ideal domain of such interactions. The present study indicated the contradictory employment experiences of people with visual disabilities. This situation should be taken into account by educators and job coaching services in their efforts to develop a supportive working environment. Transitional in-service programs as well as job coaching services have been so successful in working with people with disabilities that are considered appropriate for professional activation and career success (Rumrill et al. 1998; Wolffe 1999, 2000b). Experts should also seek to build up communication networks with the families of the persons who are blind, in order to develop high but attainable expectations for their children

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(Crudden 2012; Wolffe 2014). In addition to this, quota system as well as system of reserved working places should be reconsidered focusing on the working capacities of the individuals and not on their disability. Putting the whole situation in a broader context, school, family, and working environment constitute interactive systems with their own structures and “rules.” These systems may function according to national legal frameworks (such as working places) or due to a more complex domain which encompasses global features such as cultural, ecological, and intra-personal (Tisdall et al. 2008). When the person “moves” from one system to another (e.g., from school environment to working environment) he/she needs to make this move in a smooth and creative way heading toward a new equilibrium position. If the transitional process is very abrupt without the appropriate preparation, then we may talk for a transition with catastrophic features. These types of transitions with such negative impact are well described and shaped by mathematical models such as the catastrophy theory originated with the work of the French mathematician René Thom (Zeeman 1977). Through well-structured learning environments relevant to career education, students may be involved in decision-making processes, affecting their lives. In this case, all transitions will acquire a positive character and individuals with visual disabilities will have the chance to construct their own understandings talking and interacting with others (Rogoff 2003; Woodhead 2005). The provision of qualitative education throughout school career, the formation and finding of decent jobs which will meet their demands and wills are additional criteria which should be taken into account in order to enhance their self-esteem, satisfaction, and quality of life (Benoit et al. 2013).

References Babu, R., & Heath, D. (2017). Mobile Assistive Technology and the Job Fit of Blind Workers. Journal of Information, Communication and Ethics in Society, 15(2), 110–124. Bell, E. C., & Mino, N. M. (2013). Blind and Visually Impaired Adult Rehabilitation and Employment Survey: Final Results. Journal of Blindness Innovation & Research, 3(1), 1–35.

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Bengisu, M., Gokhan, I., & Mackieh, A. (2008). Work-Related Challenges for Individuals Who Are Visually Impaired in Turkey. Journal of Visual Impairment & Blindness, 102(5), 284–294. Benoit, C., Jansson, M., Jansenberger, M., & Phillips, R. (2013). Disability Stigmatization as a Barrier to Employment Equity for Legally-Blind Canadians. Disability & Society, 28(7), 970–983. Blackshaw, B. F. (2014). Working in the Dark: What Contributes to and Supports the Employment of People Who Go Blind in Midlife? Doctoral dissertation. Colub, D. B. (2003). Exploration of Factors That Contribute to a Successful Work Experience for Adults Who Are Visually Impaired. Journal of Visual Impairment & Blindness, 97(12), 774–778. Crudden, A. (2002). Employment After Vision Loss: Results of a Collective Case Study. Journal of Visual Impairment & Blindness, 96(9), 615–621. Crudden, A. (2012). Transition to Employment for Students with Visual Impairments: Components for Success. Journal of Visual Impairment & Blindness, 106(7), 389–398. Crudden, A., & McBoom, L. W. (1999). Barriers to Employment: A Survey of Employed Persons Who Are Visually Impaired. Journal of Visual Impairment & Blindness, 93(6), 341–351. Crudden, A., Sansing, W., & Butler, S. (2005). Overcoming Barriers to Employment: Strategies of Rehabilitation Providers. Journal of Visual Impairment & Blindness, 99(6), 325–335. Darensbourg, B. (2013). Predictors of Competitive Employment of VR Consumers with Blindness or Visual Impairments. Journal of Vocational Rehabilitation, 38(1), 29–34. https://doi.org/10.3233/JVR-120618. Dey, I. (1993). Qualitative Data Analysis: A User-Friendly Guide for Social Scientists. London and New York: Routledge. Donaldson, N. (2017). Visually Impaired Individuals’ Perspectives on Obtaining and Maintaining Employment. Doctoral dissertation, Walden University. Fleming, A. R., & Fairweather, J. S. (2012). The Role of Postsecondary Education in the Path from High School to Work for Youth with Disabilities. Rehabilitation Counseling Bulletin, 55(2), 71–81. Frase, M. (2009). An Underestimated Talent Pool. HR Magazine, 54(4), 55–58. Gartrell, A. (2010). ‘A Frog in a Well’: The Exclusion of Disabled People from Work in Cambodia. Disability & Society, 25(3), 289–301. Goertz, Y. H., Lierop, B. A., Houkes, I., & Nijhuis, F. (2010). Factors Related to the Employment of Visually Impaired Persons: A Systematic Literature Review. Journal of Visual Impairment & Blindness, 104(7), 404–418.

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Grussenmeyer, W., Garcia, J., Folmer, E., & Jiang, F. (2017, April). Evaluating the Accessibility of the Job Search and Interview Process for People Who Are Blind and Visually Impaired. In Proceedings of the 14th Web for All Conference on The Future of Accessible Work (pp. 3–6). New York: ACM. Heath, D., Babu, R., Singh, R., & Sahasrabudhe, S. (2015). Changing Employers Cognition: Personal Mobile Technology as a Workplace Enabler for Blind and Visually Impaired Workers. In Proceedings of the Thirty Sixth International Conference on Information Systems, Fort Worth 2015 (pp. 1854–1864). International Labour Office (ILO). (2012). Global Employment Trends. In K. E. Wolffe, P. M. Ajuwon, & S. M. Kelly (2013). Working with Visual Impairment in Nigeria: A Qualitative Look at Employment Status. Journal of Visual Impairment & Blindness, 107(6), 425–436. Keller, A., Scretzmann, B., & Stegie, R. (1999). Job Satisfaction Amongst Visually Impaired People in Germany: Results of a Study. British Journal of Visual Impairment & Blindness, 17(1), 31–35. Kirchner, C., & Smith, B. (2005). Transition to What? Education and Employment Outcomes for Visually Impaired Youths After High School. Journal of Visual Impairment & Blindness, 99(8), 499–504. Landmark, L. J., Ju, S., & Zhang, D. (2010). Substantiated Best Practices in Transition: Fifteen Plus Years Later. Career Development for Exceptional Individuals, 33(3), 165–176. Lee, L. S., & Park, S. K. (2008). Employment Status and Predictors Among People with Visual Impairments in South Korea: Results of a National Survey. Journal of Visual Impairment & Blindness, 102, 147–159. Leonard, R., D’Allura, T., & Horowitz, A. (1999). Factors Associated with Employment Among Persons Who Have a Vision Impairment: A Follow-Up of Vocational Placement Referrals. Journal of Vocational Rehabilitation, 12(1), 33–43. McDonnall, M. C. (2011). Predictors of Employment for Youths with Visual Impairments: Findings from the Second National Longitudinal Transition Study. Journal of Visual Impairment & Blindness, 105(8), 453–466. McDonnall, M. C., & Crudden, A. (2009). Factors Affecting the Successful Employment of Transition-Age Youths with Visual Impairments. Journal of Visual Impairment & Blindness, 103(6), 329–341. McDonnall, M. C., Crudden, A., & O’Mally, J. (2015). Predictors of Employer Attitudes Toward People Who Are Blind or Visually Impaired as Employees. Journal of Vocational Rehabilitation, 42(1), 41–50.

12  Examining the Inclusion of People with Visual Disabilities …     261

McDonnall, M. C., & O’Mally, J. (2012). Characteristics of Early Work Experiences and Their Association with Future Employment. Journal of Visual Impairment & Blindness, 106(3), 133–144. McDonnall, M. C., O’Mally, J., & Crudden, A. (2014). Employer Knowledge of and Attitudes Toward Employees Who Are Blind or Visually Impaired. Journal of Visual Impairment & Blindness (Online), 108(3), 213–225. Miles, M. B., & Huberman, A. M. (1994). Qualitative Data Analysis: An Expanded Sourcebook (2nd ed.). London: Sage. Reed, M., & Curtis, K. (2012). Experience of Students with Visual Impairments in Canadian Higher Education. Journal of Visual Impairment & Blindness, 106(7), 414–425. Robson, C. (2002). Real World Research (2nd ed). Oxford: Blackwell. Rogoff, B. (2003). The Cultural Nature of Human Development. Oxford: Oxford University Press. Rumrill, P. D., Roessler, R. T., Battersby-Longden, J. C., & Schuyler, B. R. (1998). Situational Assessment of the Accommodation Needs of Employees Who Are Visually Impaired. Journal of Visual Impairment & Blindness, 92(1), 42–54. Sherrod, C. E., Vitale, S., Frick, K. D., & Ramulu, P. Y. (2014). Association of Vision Loss and Work Status in the United States. JAMA Ophthalmology, 132(10), 1239–1242. Tisdall, E. K. M., Davis, J. M., & Gallagher, M. (2008). Reflecting Upon Children and Young People’s Participation in the UK. International Journal of Children’s Rights, 16(3), 419–429. Tuttle, D. W., & Tuttle, N. R. (2004). Self-Esteem and Adjusting with Blindness (3rd ed.). Springfield, IL: Charles C. Thomas. Wolffe, K. E. (1999). Skills for Success: A Career Education Handbook for Children and Adolescents with Visual Impairment. New York: AFB Press. Wolffe, K. E. (2000a). Critical Skills in Career Advancement for People with Visual Impairments. Journal of Visual Impairment & Blindness, 92(8), 532–534. Wolffe, K. E. (2000b). Career Education. In A. J. Koenig & M. C. Holbrook (Eds.), Foundations of Education: Vol. II: Instructional Strategies for Teaching Children and Youths with Visual Impairments (pp. 679–707). New York: AFB Press. Wolffe, K. E., & Spungin, S. J. (2002). A Glance at Worldwide Employment of People with Visual Impairments. Journal of Visual Impairment & Blindness, 96(4), 245–253.

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Wolffe, K. E. (2014). Career Education. In C. B. Allman & S. Lewis (Eds.), ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments (pp. 411–469). New York: AFB Press. Wolffe, K. E., Ajuwon, P. M., & Kelly, S. M. (2013). Working with Visual Impairment in Nigeria: A Qualitative Look at Employment Status. Journal of Visual Impairment & Blindness, 107(6), 425–436. Woodhead, M. (2005). Early Childhood Development: A Question of Rights. International Journal of Early Childhood, 37(3), 79–98. Zeeman, Z. (1977). Catastrophe Theory-Selected Papers 1972–1977. Reading, MA: Addison-Wesley. Zhou, L., Smith, D. W., Parker, A. T., & Griffin-Shirley, N. (2013). The Relationship Between Perceived Computer Competence and the Employment Outcomes of Transition-Aged Youths with Visual Impairments. Journal of Visual Impairment & Blindness (Online), 107(1), 43–53.

13 Training Experts in Inclusive Practices for an Equity on Access to Culture in Europe Anna Matamala and Pilar Orero

Introduction The chapter will begin with an introduction to the European legal ­context, which sets the research framework for both projects. Reference to related theories that guide our study will be made in this section. Training experts in accessibility in the scenic arts and defining their professional profile, which is the focus of the ACT project, will be discussed in Sects. “Legal Context in Europe and Research Framework” and “Training on Accessibility to the Scenic Arts: Rationale and Framework”. The rationale of the project, the methodological tools used, and the results obtained so far will be presented. Section “Profiling the Expert in Accessibility for the Scenic Arts: Methodological Aspects and A. Matamala (*) · P. Orero  TransMedia Catalonia Research Group, Universitat Autònoma de Barcelona, Barcelona, Spain e-mail: [email protected] P. Orero e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_13

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Results” will define the rationale behind the ADLAB PRO and the ILSA project. The former aims to define the profile of the expert on audio description (AD), an invisible access service with some EU regulation which needs to be increasingly fulfilled. The latter aims to define the profile of professional live subtitler (i.e., a new discipline that combines translation, subtitling, and simultaneous interpreting). Section “Defining the Audio Describer and Live Subtitler Professional Profiles” will then focus on ADLAB PRO and describe the methodological approach taken in the first part of project, the results, and the next steps to be taken. The article will conclude with some thoughts on the insights our research has put forward concerning the cultural barriers in Europe and the limitations persons with disabilities may find to attend cultural events, as well as the need for well-trained professionals at different levels: on the one hand, at the managing level and, on the other, at the actual provision of access services. A recommendation of mainstreaming accessibility as a default service to work toward a more equitable society will be proposed.

Legal Context in Europe and Research Framework It is important to know the legal situation in Europe regarding accessibility to understand the need for training experts in accessibility to cultural goods. The United Nations Convention on the Rights of Persons with Disabilities1 (CRPD) is the fundamental instrument and sets the context worldwide from where to develop accessibility plans and strategies. CRPD is legally binding and sets minimum standards for the rights of people with disabilities. It is the first human rights convention having the European Union as a party. The Council of the European Union (EU) adopted the Decision for the conclusion of the

1https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-dis-

abilities.html (consulted on 02/08/2017).

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Convention2 on November 26, 2009. For the EU, the CRPD entered into force on January 22, 2011. This means that nowadays all the EU countries have signed the Convention, and only Ireland has not yet ratified it. There is also an optional protocol, which out of the 27 EU countries 23 have also signed, and 21 have ratified.3 The CRPD aims to guarantee that people with disabilities can enjoy their rights on an equal basis with all other citizens, and it sets out minimum requirements for safeguarding a full range of civil, political, social, and economic rights. The Convention reflects the EU commitment to building a barrier-free Europe for the estimated 80 million people with disabilities that will live in the EU in 2020, as set out in the European Commission disability strategy.4 The plan outlines how the EU and national governments can empower people with disabilities so they can enjoy their rights. This shifts the study of accessibility from a clinical exclusive model— where, for instance, AD was exclusively for the blind and subtitling was only for the deaf and hard of hearing—to a new inclusive for all paradigm. In fact, this “new inclusive for all paradigm” acknowledges that we all need accessibility. This is especially evident in a multilingual Europe, where 100% of EU residents require translation (or language accessibility) at one point. An additional consideration to be made is that within the human rights framework there is a serious problem regarding accessibility, what Greco (2016) calls Accessibility as a Human Right Divide Problem (AHRD Problem). The AHRD Problem highlights the issue between accessibility as a human right per se and accessibility as an instrument for the fulfillment of human rights. It is in this latter proactive principle where media accessibility is framed in this chapter: access as a necessary requirement for achieving human rights. Europe has responded to the obligations derived from the UNCRPD with two important EU legislations, establishing the context for the development of professional

2http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32010D0048&rid=1

(consulted on 02/08/2017).

3http://europa.eu/rapid/press-release_IP-11-4_en.htm

(consulted on 02/08/2017). (consulted on 02/08/2017).

4http://europa.eu/rapid/press-release_IP-10-1505_en.htm?locale=en

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experts in accessibility: the EU directive known as Audiovisual Media Service Directive (AVMSD) and the European Accessibility Act (EAA). The EU directive5 2010/13/EU in Article 46 explicitly acknowledges that the “right of persons with a disability and of the elderly to participate and be integrated in the social and cultural life of the Union is inextricably linked to the provision of accessible audiovisual media services. The means to achieve accessibility should include, but need not be limited to, sign language, subtitling, audio-description.” The EAA6 aims “to improve the functioning of the internal market for accessible products and services by removing barriers created by divergent legislation.” These legislations will allow for a full integration in cultural life of all citizens. The proportion of people in need of accessibility is increasing in the EU, partly due to an increasing aging population, but also to the mobility of its citizens, who for work or tourism change their country and move to a new location and a new language. Accessibility has long been a critical issue in the EU culture sector as part of the Digital Single Market (DSM).7 A DSM is one in which the free movement of persons, services, and capital is ensured and where the individuals and businesses can seamlessly access and exercise online activities under conditions of fair competition, with a high level of consumer and personal data protection, irrespective of their nationality or place of residence. On May 10, 2017, the Commission published the mid-term review of the Digital Single Market Strategy. It shows the progress made in implementing the Strategy since 2015 and where further actions

5Directive 2010/13/EU of the European Parliament and of the Council of 10 March 2010 on the coordination of certain provisions laid down by law, regulation or administrative action in Member States concerning the provision of audiovisual media services (Audiovisual Media Services Directive) (http://eur-lex.europa.eu/legal-content/EN/ ALL/?uri=CELEX%3A32010L0013) (consulted on 02/08/2017). 6European Accessibility Act (http://ec.europa.eu/social/main.jsp?catId=1202) (consulted on 02/08/2017). 7 h t t p:/ / eur- lex .europ a.eu/legal-content/EN /T X T/?q id= 1 4 4 7 7 7 3 8 0 3 3 8 6 & u r i= CELEX%3A52015DC0192 (consulted on 03/08/2017).

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are needed.8 However, no much attention has been paid to cultural representations such as the scenic arts beyond the introduction of translation services such as surtitling in opera (Orero 2007; Matamala and Orero 2013). Access services are often not implemented due to lack of awareness on what is needed in terms of technology and also on how to contract those who produce them. Therefore, training experts in these specific fields is much needed in the current European context.

Training on Accessibility to the Scenic Arts: Rationale and Framework The time has come to establish the new professional profile of accessibility manager, and its training, for the specific environment of scenic arts and live events. Most opera houses in Europe offer subtitles or surtitles (Oncins 2015), and other access services such as AD (Matamala and Orero 2014; Oncins et al. 2013; Weaver 2011), sign language interpreting, or touch tours are offered in some playhouses too (Eardley-Weaver 2013). However, their provision is uneven (ADLAB 2014) and finding out the access services on offer for a specific performance may prove challenging. This applies to many cultural goods, be it in museums, cinemas, opera, or playhouses. With the must-carry access requirements established in the EAA, some national governments have started to make provisions by developing an active accessibility policy. This is the case for the Catalan Government through its Department of Culture, where the new Catalan Accessibility Code sets some requirements from the Accessibility Decree.9 Other countries such as Germany, in Baviera, and Sweden have also started working toward setting up accessibility requirements for publicly funded cultural productions.

8https://ec.europa.eu/digital-single-market/en/news/contributions-and-preliminary-trends-public-consultation-audiovisual-media-services-avmsd (consulted on 03/08/2017). 9http://portaldogc.gencat.cat/utilsEADOP/PDF/6742/1379017.pdf (consulted on 02/08/2017).

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Looking at one case, the Catalan, clear instructions have been issued to both private and public exhibitors: They must draft an accessibility plan that considers not only physical accessibility and health and safety regulations but also provides a joint territorial planning of access services, a minimum percentage of performances offered with AD, and a minimum percentage offered with subtitles. The protocol establishes that the provision of subtitles and AD does not have to be offered necessarily at the same time, and that clear information should be provided about the access services on offer. The accessibility plan is expected to be revised every four years, in order to improve the number of accessible performances, and the Catalan Department of Culture will be the body responsible for checking that all requirements are fulfilled. As part of the plan to implement the Catalan Accessibility Code, some actions were prepared. The first was to find out the state of the art regarding accessibility in the 30+ public playhouses in Catalonia. After elaborating and sending a questionnaire, it was clear that accessibility actions, if any, were shared by different departments within one institution and that a department of accessibility centralizing all access services was seldom found. There was no person responsible for all accessibility actions, and often, one department did not liaise with another. So, for instance, the person selling tickets would not be familiar with sitting arrangements for wheelchairs, nor with the provision of signed performances. Therefore, one direct outcome from this research was the need to centralize accessibility in one department, with a person responsible for all issues. This person, the accessibility expert for the scenic arts, or even for the broader field of culture management, is not described in any of the official professions in Eurostat,10 but it may exist in other places away from Europe where a more stringent legislation has been in place for years, such as the USA. Accessibility management exists in other areas of accessibility such as the Web or the field

10http://ec.europa.eu/eurostat/statistics-explained/index.php/Europe_2020_indicators_-_employment (consulted on 02/08/2017).

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of physical accessibility in urban development,11 transport,12 or public administration.13 The need to define the professional profile of the accessibility expert in the scenic arts, with their skills and competences, was therefore confirmed through this initial research. Since EAA and AVMSD are at EU level, and the aim was to work within the Single Digital Market framework, it was deemed necessary to define the new professional profile beyond Catalonia and across Europe. For this reason, a EU action was started taking advantage of the funding available from the Erasmus + program.14 This program aims to support the potential of Europe’s talent and social assets in a lifelong learning perspective, including support to formal, non-formal, and informal learning. More specifically, a joint EU project, Accessible Culture Training (ACT),15 was submitted and funded. ACT is transnational, a basic requirement when upscaling at pan-European level, because not only access services have to be considered but also the cultures and languages in which they will be implemented. In Europe, there is a wealth of language situations (bilingual, monolingual, multilingual) and translation traditions (subtitling, dubbing, and voice-over), where cultural representations will take place. To design a truly useful proposal, it was considered important to count with a bottom-up transectorial collaboration. ACT gathered as partners key stakeholders in the media accessibility field: training institutions, governmental authorities, theater managers, certification organization, and end users. Four universities (Universitat Autònoma de Barcelona, University of Antwerp, Queen’s University Belfast, and University of Vienna), two theaters (Transit, in Spain, and NTGent,

11http://www.bendbulletin.com/news/1481864-151/bend-names-duncan-new-accessibility-man-

ager (consulted on 02/08/2017).

12https://www.reed.co.uk/jobs/schools-liaison-and-accessibility-manager/32388489

(consulted on 02/08/2017). 13 http://agency.governmentjobs.com/bend/default.cfm?action=viewclassspec&classSpecID=888377&agency=2242&viewOnly=yes (consulted on 02/08/2017). 14http://ec.europa.eu/programmes/erasmus-plus/resources_en (consulted on 02/04/2017). 15http://pagines.uab.cat/act/ (consulted on 02/08/2017).

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in Belgium), two governmental departments (Inter, a technical partner of the Flemish government, and the Department of Culture from the Catalan government), and a EU quality certification agency (ECQA) took part. ECQA was asked to participate to secure resilience and to organize tests for certification beyond university courses. In particular, challenging is the certification approach toward informal learning proposals, something alien to universities. Finally, end users from all countries participated in the project through associations as associate partners.

Profiling the Expert in Accessibility for the Scenic Arts: Methodological Aspects and Results The project ACT follows a bottom-up methodology, gathering information from users within the UN CRPD framework, where “nothing for us without us” is defined as a departing point for any action. Partners in the project identified three groups to offer feedback on their accessibility experience and expectations: art venues managers, user a­ ssociations, and artistic teams (Orero 2017). To gather feedback, a survey was drafted, pre-piloted, and then translated into the languages of the countries in the project (Catalan, Dutch, English, and German). Data from venues were collected through this survey and complemented by focus groups with artistic teams and individual interviews with end users. The questions asked for the venues were: 1. To what extent are the various access facilities (e.g., AD, easy-to-read materials, sign language interpreting, audio subtitling) offered in the different arts venues in each partner country and how does this vary? 2. How are access facilities promoted? 3. Who is responsible for accessibility? 4. What access quality control measures are in place? 5. What type of accessibility training is offered if any? 6. What challenges are faced by venues regarding accessibility?

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Results from the three interventions led to some interesting conclusions. When the venue managers replied, it seemed that they all took into consideration accessibility and they complied to a very high degree with accessibility requirements. This was surprising until it was clarified what accessibility requirements meant for them: physical accessibility. Nowadays, it is almost impossible to get a planning permission to open a public venue unless basic measures are met: accessible toilets, ramps as alternative for steps, lifts for motorized wheelchairs, and attention to health and safety regulations. Venue managers considered they met requirements and this clashed with results from the comments by the end users, who had further needs from the basic adapted toilet and ramps. Finally, a third group of informants was artists. They were added hoping to gather some feedback from any artist who had considered accessibility in the production of their art. This proved to be an awareness exercise, since artists considered artistic accessibility as the inclusion of persons with disabilities as actors in the regular performances, or as the creation of specific shows exclusively for persons with disabilities. Raising awareness on media accessibility was again the priority surfacing the study. Informing on media access services and possibilities to all three groups was a necessary step and some actions were taken. The research group TransMedia Catalonia, leader of the ACT project, decided to create some short videos to illustrate issues such as: how to reach the venue and how to communicate access services through the Web site16 or seating distribution,17 to name two. The Catalan Department of Culture, also partner in ACT, decided to organize three workshops addressing: exhibitors, end users, and users of accessible technologies. The workshops aimed at: a. Understanding the characteristics and the specific needs of people with disabilities, b. Consider these groups when programming activities, c. Gain experience through practical examples, and d. Identify barriers to access and design their corresponding solutions. 16https://youtu.be/-fns2FsJWC8 17https://youtu.be/hgcCpKaX_jo

(consulted 02/08/2017). (consulted 02/08/2017).

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Videos and recording18 of the workshops are available online, hoping to fulfill basic information when dealing with media accessibility. The feedback gathered from different group of informants was also used to draft a list of requirements (Eardley-Weaver et al., forthcoming), and the next step was to define the expert’s skills and competences and also its denomination departing from this input. Two different but complementary profiles appeared: the Accessibility Coordinator and the Accessibility Manager. The former works at a venue and takes care of all accessibility needs for successful integration of all people to access culture. Meanwhile, the latter, the Accessibility Manager, oversees cultural event management with a focus on accessibility and is not necessarily based in any venue, such as a theater. An accessibility manager may be in charge of coordinating accessibility at various venues within a local district. This work will involve collaborating with accessibility coordinators at individual venues where such a role exists. If there is no accessibility coordinator for any given individual venues (such as in smaller venues), it may be required from the accessibility manager to oversee accessibility across these venues. Both profiles are experts on accessibility and should be able to decide accessibility policies or adequacy when choosing venues or productions. The two job roles share many traits in the basic skills definitions such as: understanding accessibility, venue accessibility, access services, accessibility management for live events, and promoting accessibility. The main distinction between the two functions resides in the context the two specialists operate. The accessibility manager must, in fact, have an additional skill: be flexible and be able to transfer his knowledge and competences to different environments. This applies to physical skills (i.e., related to the venue) and to interpersonal skills.

18 https://sde.cultura.gencat.cat/cultura/curs-d’accessibilitat-als-espais-escenics-i-musicals_

adh_1574.html (consulted 02/08/2017).

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Defining the Audio Describer and Live Subtitler Professional Profiles The ACT project takes a broader look to accessibility, focusing on the profile of those coordinating or managing the accessibility in one or various venues. It does not look at the specific training those providing access services should have. However, this is a topic that merits further research as the professionals providing access services such as AD or live subtitling vary in their profile and training across European countries. In the area of subtitling, a key priority for the users is to access live content such as news and public events. Live subtitling through speech recognition, known as respeaking, has consolidated as the preferred method to provide live subtitles around the world (RomeroFresco 2018). Respeakers listen to the soundtrack of a program and simultaneously repeat and rephrase what they hear to a speech recognition software that turns these utterances into subtitles (Romero-Fresco, forthcoming). Although this method is very successful for same language subtitles, a new challenge has emerged (RomeroFresco and Pöchhacker 2017). Migration streams and the increased multilingual composition of societies have led to a growing demand for access to live content in a foreign language. Same language live subtitlers and interlingual live subtitlers produced by respeaking are in urgent need to be developed as professional profiles. The need to train quality professionals in these techniques is now a priority, thus providing access to live content not only for deaf people but also for foreign audiences, including migrants and refugees. The Interlingual Live Subtitling for Access (ILSA) project (http://www.ilsaproject.eu) aims to design, develop, test, and produce a protocol for the implementation of subtitling in four real-life scenarios: TV, conferences, the classroom, and the Parliament. The curriculum and training materials developed by the project will be flexible. This means they can be integrated in different learning environments from higher education students to professionals already working in translation and accessibility. The ILSA consortium includes four universities (Vigo University,

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Antwerp University, University of Warsaw, and University of Vienna) and three non-academic partners: the Galician Parliament, the public Belgium TV broadcaster VRT, and Dostepni.eu, the first company to produce intralingual live subtitlers for TV and social events in Poland. Concerning AD, it is a service where accessibility is achieved through the insertion of short verbal descriptions illustrating the essential visual elements of an audiovisual product, mainly for the blind and visually impaired community. The need to improve the practice of AD and to make more and more audiovisual products available to sensorially disabled people is ever more urgent due to the significant number of people in Europe registered as blind or described as having low vision, or the elderly. Inconsistencies in AD provision and crafting methods were identified by ADLAB (http://www.adlabproject.eu/), a project that produced the first reliable and consistent European guidelines for the practice of AD (Remael et al. 2015). Based on the results of this project, a new project (ADLAB PRO) was submitted and funded. The project aims to create free-access flexible didactic materials that will contribute to train a still rather unknown professional figure, that of the audio describer. The project, led by University of Trieste, gathers partners from academic institutions (Universitat Autònoma de Barcelona, University of Trieste, Adam Mickiewicz University), broadcasters (Slovenian Television), SMEs involved in the production of access services (Utopian Voices, Soundfocus), and end user’s associations (RNIB). Only through research-informed comprehensive training programs such as the ones proposed by ACT, ADLAB PRO, and ILSA will it be possible to ensure that these new professional profiles on media accessibility meet the required standards regarding the product and the working conditions. This is an essential step to guarantee a truly wider access that can include and integrate all citizens in the audiovisual, educational, political, and social life of the countries in which they are living.

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Mapping Audio Description Training in Europe: Methodology and Preliminary Results in ADLAB PRO The first necessary step within the ADLAB PRO project was to identify current AD training practices across Europe. To this end, two methodological approaches were taken: a quantitative and a qualitative analysis. The former was based on a questionnaire distributed to AD trainers in academic and non-academic institutions in Belgium, Italy, the Netherlands, Slovenia, Spain, the UK, and Poland, among others. The qualitative analysis was performed on selected course materials provided by AD trainers from the partner institutions. The online questionnaire gathered data about the quantity and length of the AD training, the types of training offered, the group sizes, the teaching modes, the amount of theory and practice in the courses, as well as the assessment modes implemented. Special emphasis was put into the competences, skills, and learning outcomes expected to be achieved by learners when completing the courses. Eighty-six respondents completed the survey, giving information about a total of 192 courses across Europe (93 academic and 99 non-academic), and results, as reported by Chmiel and Mazur (2017), seem to indicate that the majority of AD teaching concerns film AD. When asked about the importance of specific competences in AD training on a 5-point Likert scale, “choosing the most relevant information to describe” (4.87) and “perfect use of mother tongue” (4.70) ranked first, followed by “knowledge of the needs of the visually impaired” (4.65), “choosing appropriate AD strategies” (4.46), “technical aspects (editing, timing, text compression)” (4.32), “knowledge of cinematography, theatre, arts, and/or semiotics of the image” (3.84), “vocal skills” (3.52), “IT-related skills” (3.51), and “reflecting filmic language” (3.22). Concerning transferrable skills, “efficient work organisation and time management” (4.45), “ethics” (4.29), “self-development” (4.15), and “teamwork” were all considered of high importance. The questionnaire also shed light on the main features of AD courses: both academic and non-academic are generally under 20 hours long

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and are generally addressed to larger groups in academic environments (10–20 and more, in contrast to groups under 10 participants or medium-sized groups below 20 in non-academic environments). Academic courses are generally taught at M.A. level, generally within courses in audiovisual translation. Most courses rely on traditional face-to-face teaching, and only some of them offer e-learning or blended learning. In terms of skills, it seems that there are no major differences except for the fact that non-academic courses tend to focus more on voicing and recording than their academic counterparts. Concerning contents, academic courses tend to include more presentations of theoretical concepts, based on research articles and projects, as compared to non-academic contexts. However, no statistical significant differences between the two types of courses were observed. Both types were also found to be mainly based on practical exercises, analysis of existing AD’s, and discussion of guidelines. It is also interesting to notice that most trainers have experience both in teaching and in AD creation. Regarding the qualitative analyses of courses (see Chmiel and Mazur 2017, for further details), two long academic courses, one mediumlength academic course, one long non-academic course, and one short non-academic course were chosen as case studies. They all show different features in terms of length and modality (online/blended/ ­ in class), but they all combine teacher-centered with student-centered learning activities and rely extensively on the use of audiovisual content. Analyzing existing AD’s, discussing AD guidelines, presenting theoretical aspects, and doing practical exercises are the main activities in all cases. Overall, it seems that, despite differences in approaches and specific features, there is common ground among the different academic and non-academic courses. Departing from this mapping of the AD training situation across Europe, a second step has been taken. An online questionnaire has been designed and circulated extensively to AD providers, audio describers, and end users to gather feedback on the audio describer profile. More specifically, the questionnaire aims to collect information on the AD profile in terms of previous training and experience, stages in which the audio describer is involved, working conditions, and cooperation with persons with disabilities.

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It also aims to elucidate how professionals view their work, the difficulties they encounter, and the skills and competences that are ­ considered more relevant. The voice of the end user is also expected to be heard with specific questions concerning their use of AD in different environments and their views on the job of the audio describer. The questionnaire also includes question about user satisfaction and the aspects user consider most important in quality AD. The analysis of this second questionnaire is currently ongoing, but it is expected to shed light on the skills and competences an audio describer should acquire. Based on this list of skills and competences, the next steps will include the design of a course and the development of course contents, which will need to be evaluated and tested in terms of quality and attributed credits.

Conclusions: Toward Mainstreaming Accessibility The European Union has taken remarkable steps toward accessibility and inclusion. The first is the exceptional signature “as a single party” of the first human rights convention by the Council of the European Union19 on November 26, 2009. Since that date, an active policy has been developed along a generous funding for both research in the field of media accessibility and its training. Europe as a region, with its rich diversity in cultures and languages, needs to secure the interaction of citizens beyond geopolitical areas. The adoption of positive inclusive policies toward all EU citizens shows the understanding toward diversity and the need to address the different needs in a unified way. By understanding the requests and expectations of the most vulnerable sectors in society, specific actions have been activated. Europe views accessibility for persons with disabilities, but also recognizes the needs for

19http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32010D0048&rid=1 (consulted on 02/08/2017).

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accessibility for the largest population in Europe: the aged. Europe has also been subject of migrations within EU countries and also from other neighboring places. This is the specific objective of the societal challenge “Europe in a changing world – Inclusive, innovative and reflective societies” funded to foster a greater understanding of Europe, provide solutions, and support inclusive, innovative, and reflective European societies in a context of unprecedented transformations and growing global interdependencies. The integration of the displaced citizens—who in turn can also be persons with disabilities—is also considered by Europe as a priority in need of dynamic solutions. Pressure from migration flows, socioeconomic and cultural changes due to new forms of human–technology interaction under the fourth industrial revolution can impact the future of Europe at many levels. Until accessibility becomes normalized and integrated in syllabus across disciplines and education levels, until accessibility is mainstreamed in a more equitable society, a special effort has to be made in training those responsible for providing it as a postproduction service. The quality and diversity of services have to be understood, so access is offered to the widest possible diversity of user profiles thus promoting inclusion and equity on access to culture and education in Europe. Acknowledgements   This chapter is part of the ACT (2015-ES01-KA2013015734) and ADLAB PRO (2016-1-IT02-KA203-02431) projects, supported by the Erasmus + program of the European Union. The content of this chapter does not reflect the official opinions of the European Union. Responsibility for the information and views expressed in this chapter lies entirely with the authors. The authors are part of TransMedia Catalonia research group, funded by the Catalan Government through the SGR funding scheme.

References ADLAB. (2014). ADLAB Project. Audio Description: Lifelong Access for the Blind. Retrieved from http://www.adlabproject.eu/home/. Last Accessed January 2019.

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Chmiel, A., & Mazur, I. (2017). Assessment of Current AD Training Practices. ADLAB PRO. Retrieved from https://adlabpro.files.wordpress. com/2017/07/20170608_uam_io1_report.pdf. Eardley-Weaver, S. (2013). Opening Eyes to Opera: The Process of Translation for Blind and Partially-Sighted Audiences. Translation and Interpreting Studies. The Journal of the American Translation and Interpreting Studies Association, 8(2), 272–292. Eardley-Weaver, S., Black, S., Remael, A., Robert, I., Matamala, A., & Orero, P. (forthcoming). ACT Now: Cultural Accessibility Training and Profiling. Greco, G. M. (2016). On Accessibility as a Human Right, with an Application to Media Accessibility. In A. Matamala & P. Orero (Eds.), Researching Audio Description (pp. 11–33). London: Palgrave Macmillan. Matamala, A., & Orero, P. (2013). Audiovisual Translation, When Modalities Merge. Perspectives: Studies in Translatology, 23(1), 2–4. Matamala, A., & Orero, P. (2014). Formar en accessibilitat als mitjans: Noves necessitats socials, noves tecnologies, noves propostes dinàmiques. Revista CIDUI, 2, 1–8. Oncins, E. (2015). The Tyranny of the Tool: Surtitling Live Performances. Perspectives: Studies in Translatology, 23(1), 42–61. Oncins, E., Lopes, O., Orero, P., & Serrano, J. (2013). All Together Now: A Multi-language and Multi-system Mobile Application to Make Live Performing Arts Accessible. JosTrans, 20, 147–164. Orero, P. (2007). Audiosubtitling: A Possible Solution for Opera Accessibility in Catalonia. TradTerm, 13, 135–149. Orero, P. (2017). The Professional Profile of the Expert in Media Accessibility for the Scenic Arts. Rivista internazionale di tecnica della traduzione RIIT, 19, 143–161. Remael, A., Reviers, R., & Vercauteren, G. (2015). Pictures Painted into Words: ADLAB Audio Description Guidelines. Trieste: Edizioni Università di Trieste. Romero-Fresco, P. (2018). Respeaking: Subtitling Through Speech Recognition. In L. Pérez-González (Ed.), The Routledge Handbook of Audiovisual Translation Studies (pp. 96–114). London and New York: Routledge. Romero-Fresco, P. (forthcoming). Reception Studies in Live and Pre-recorded SDH. In E. Di Giovanni & Y. Gambier (Eds.), Reception Studies and Audiovisual Translation. Amsterdam: John Benjamins.

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Romero-Fresco, P., & Pöchhacker, F. (2017). Quality Assessment in Interlingual Live Subtitling: The NTR Model. Linguistica Antverpiensia, New Series: Themes in Translation Studies, 14, 149–167. Weaver, S. (2011). Opening Doors to Opera. The Strategies, Challenges and General Role of the Translator. In Tralinea 12. Retrieved from http://www. intralinea.org/archive/article/1660.

14 Inclusive Employment Plight of Youth with Complex Communication Needs Maximus Monaheng Sefotho

Introduction and Context Although inclusive education has been exhaustively explored in ­literature, inclusive employment of youth with complex communication needs (CCN) has not enjoyed similar attention. This chapter explores the plight for inclusive employment by youth with CCN. The objective of this research was to explore employment aspirations of youth with a specific disability, namely CCN. Complex communication has been a phenomenon that marked my life as far as I can recall. I grew up in a rural village in the foothills of Lesotho. My village, Ha Tlali, is engulfed in poverty, underdevelopment and the general lack of employment. My upbringing as a typical Mosotho boy followed a pattern of less emphasis on education with preference for young boys herding sheep and cattle. This gave boys and young men in the village an identity of manhood. I on the other hand preferred M. M. Sefotho (*)  Faculty of Education, Department of Educational Psychology, University of Johannesburg, Johannesburg, South Africa e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_14

281

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education to herding animals. However, I had to go through the ­experience of herding like most boys in my village. This chapter traces a trend of my experiences from then to my current role as a researcher in the field of disability. It was customary for young boys to be paired for the task of herding animals. I was paired with a boy younger than myself who had a speech disability. The young man could not articulate words audibly for listeners to easily make sense of what he was saying. Young as I was, this intrigued me and equally propelled a sense of responsibility in me to teach him how to speak properly. The challenge was that I did not know what I was doing and there were no specialists one could consult to help my friend. The positive side was that our efforts paid off, my friend gained confidence and was able to forge conversations with the rest of the community. To this day, he still cannot articulate words properly but he developed a system of communicating, only unique to him and it proved to be successful. Lesotho is an enclave within South Africa. Some anecdotally refer to it as being the belly button of South Africa. My faint memories of spending some time in Pimville Soweto go back to before 1976, a period that marked drastic changes for South Africa. Because of the Soweto upheavals of 1976, my parents decided to relocate to Lesotho where I grew up. My interaction with South Africa was mainly on other issues rather than family. When I later joined South Africa and decided to study and work there, I found myself attracted to the field of disability. The story of my life at Ha Tlali formed a fundamental part of my doctoral thesis. I found South Africa challenging because of its diversity but equally rewarding because of the richness brought about by diversity. My language, Sesotho, forms part of the cultural and linguistic complexity of South Africa. From the Sesotho point of view, there exists an oxymoron about disability. It is perceived negatively as bewitchment or a curse and also perceived positively where society takes care of differently abled persons and include them in the society (Muster 2017, p. 107). In South Africa, I found a far more developed conceptualization of disability, although heavily laden with cultural beliefs from the diverse cultures. Government has policies for inclusion in place, what remains a challenge is implementation.

14  Inclusive Employment Plight of Youth …     283

I joined the University of Pretoria, faculty of education in 2010 as a lecturer in the department of educational psychology. My research focus is career guidance and I link it with disability. In order to develop, this research area, I found the Centre for Augmentative and Alternative Communications (CAAC) in the faculty of humanities as suitable for my research. Alant (2007) notes that, the CAAC runs a youth empowerment program with The Fofa Project (Bornman et al. 2016), “to fly” in Sotho languages aiming to facilitate the development of empowerment and leadership skills and to expose participants to options for employment and independence. The annual one-week immersiontraining program focuses on communication competence (60%), empowerment (25%), and employment issues (15%). My focus at the CAAC was in relation to employment of youth with CCN. In 2015, I was allowed to conduct a study at the center whose results inform this chapter in light of addressing inclusion and sustainable development. Globally, unemployment is a problem among the youth, mainly youth with disabilities. The sustainable development goals (SDGs), unlike the Millennium Development Goals (MDGs), explicitly highlight issues of inclusion. The sustainable development goal 8: “Promote sustained, inclusive and sustainable economic growth, full and productive employment, and decent work for all ” addresses one of the most neglected areas about the development and well-being of youth with CCN, that is, employment. Similarly, Article 27 of the CRPD and the Right of Inclusive Employment (Fasciglione 2015) addresses employment issues of youth with CCN. Generally, education, whether formal, informal, or non-formal, is considered a stepping-stone toward sustainable livelihoods. Nonetheless, youth with CCN form part of a group considered to be “Not in Education, Employment or Training(NEET)…Young people who are neither in employment nor in education or training are at risk of becoming socially excluded – individuals with income below the poverty-line and lacking the skills to improve their economic situation” (OECD 2017, p. 304). The economic meltdown that has afflicted world economies exacerbated the unemployment situation of differently abled (Muster 2017, p. 107) persons in general and youth with CCN in particular. Disability is a ubiquitous and endemic part of human existence. Every nation and society has in its communities, youth with

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CCN. One billion people, or 15% of the world’s population, experience some form of disability, and disability prevalence is higher for developing countries (Kumar et al. 2012). Youth with CCN form part of the 15% and their inclusion into employment is replete with challenges. This chapter highlights the plight of youth with CCN to be included in employment for them to live independently and cater for their own well-being. The rationale for this chapter is anchored on addressing unemployment issues faced by youth with CCN. The chapter also responds to the sustainable development goal number 8 addressing the right of all people to employment and decent work. The chapter also addresses transition from education to the world of work: from inclusive education to inclusive employment.

Literature Review and Related Theories Literature reviewed in this chapter is anchored on a triangulation of theories found relevant to inclusive employment of youth with CCN. Generally, CCN refers to people with severe speech, language, and communication impairments, including autism spectrum disorders, cerebral palsy, certain learning disabilities, and multiple disabilities. The constructs, CCN, and inclusive employment are reviewed. This chapter draws from positive psychology, the capabilities approach and hephapreneurship.1

Youth with Complex Communication Needs Complex communication needs denotes a lack of communication skills to satisfy daily communication requirements and may be associated with developmental or acquired disabilities. CCN can be found among people of all ages, but in this chapter, concentration is only on youth between the ages ranging from 19 to 35 years. Generally, this age group should be either in school or in working. Youth with CCN are a diverse group 1Hephapreneurship (a neology that promotes transcendence of disabilities) emphasizes abilities over disabilities.

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with communication needs that “…include not only a means to support face-to-face communication, but also written communication and access to the wide range of telecommunication and social media tools” (McNaughton et al. 2012, p. 46). These youth may need these skills also for the world of work although they are continuously “facing negative societal attitudes as they pursue education and employment opportunities” (McNaughton et al. 2012, p. 47). Education and employment are critical in the advancement of youth with CCN. However, society is still very negative about including them in education and employment. Some could be highly educated, but experience challenges in finding employment hence their plight for inclusive employment.

Inclusive Employment Plight Literature is critically scarce on inclusive employment. After many decades of education for all and inclusive education, one is of the view that inclusive education essentially presupposes inclusive employment; otherwise, the inclusion discourse is void of application for inclusive policies. “Inclusive employment refers to all activities which enable an individual to gain access to decent remunerated work” (Handicap International 2011, p. 11). This would mainly depend on an inclusive culture in any organization or context. “An inclusive culture involves the full and successful integration of diverse people into a workplace or industry” (Burton Blatt Institute 2011, p. 2). In this chapter, an inclusive culture would involve integration of differently abled persons in general, but in particular youth with CCN who are employable into employment. Inclusive employment plight is indicative of a predicament faced by youth with CCN to be included in employment. Differently abled people generally struggle with obtaining employment (Levy and Hernandez 2009). In South Africa as in other countries, policies for employment inclusion have been developed, but the problem is policy implementation (Maja et al. 2011) as well as employer attitudes and practices toward disability (Goss et al. 2000). According to Engelbrecht et al. (2017, p. 3), youth with disabilities “…are often the last to be hired and the first to be

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retrenched or fired, or hired for jobs that require little training and have few opportunities for development. Even when they are well educated, youth with disabilities take longer to find a position, have less job security and less prospect of advancement.” Inclusive employment for many youth with disabilities therefore proves to be a mirage. There is nonetheless a need for positive psychology to encourage the youth.

Positive Psychology For Martin Seligman “Positive psychology is a supplement to psychologyas-usual” (2010, p. 233). The presumption of positive psychology as a supplement is that it augments traditional psychology “…because it approaches psychology from new perspective with a focus on human flourishing, happiness and well-being” (Giffen and Zhivotovskaya 2007, p. 3). Another presumption is that positive psychology focuses on “human” flourishing, happiness, and well-being. While it is proper to consider youth with CCN as human, the key question to ask is whether they are flourishing, happy and that their well-being is positive? It is hard to believe that this could be the case while most are considered to be NEET (OECD 2017, p. 304). Positive psychology is poised to play a pivotal role in changing the case of the plight for employment by youth with CCN. From the positive psychology perspective, inclusive employment could form a platform of “interventions that build the enabling conditions of life, not just interventions that decrease misery” (Seligman 2010, p. 233) with “PERMA: positive emotion, engagement, relationships, meaning, and accomplishment” as a central propeller of psychological well-being (Seligman 2011, p. 24). Positive psychology is well positioned to encourage with disabilities, who are generally excluded from employment, especially youth with CCN.

Capabilities Approach Through positive psychology, enabling conditions for inclusive employment of youth with CCN could lay a foundation for challenging unemployment. However, a fundamental question is whether these youth are

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capable of taking advantage of the conditions made available to them. The capabilities approach of Sen (1985) provides hope and encouragement for resilience through “what people are actually able to do and be” (p. 12), where “resilience is defined as the capacity to adapt successfully as well as the ability to tolerate, adjust and overcome the crises of life” (Oktan 2012, p. 1691). The capabilities approach places the responsibility to do and be on youth with CCN and it is “…a tool and a framework within which to conceptualize and evaluate these phenomena” (Robeyns 2005, p. 94). The idea is to remove obstacles such as exclusionary tendencies leading to unemployment of youth with CCN. The capabilities approach seems to be inward as well as outward looking, as it places responsibility on the individual, it equally requires of society to adjust its policies and practice to include youth with CCN in employment. The capabilities approach places its “…focus on positive flourishing and opportunities” (Norwich 2014, p. 16).

Hephapreneurship The labor market has become complex and unsympathetic to differently abled persons (Sefotho 2015a). Therefore, alternative ways of inclusive employment may provide solace, as “…the best hope for productive work may lie in self-employment” (Halder 2008, p. 12). “Turning unemployment into self-employment has become an increasingly important part of active labor market policies” (Caliendo and Künn 2011, p. 311) as well as an attempt to include “differently abled” people in employment (Muster 2017, p. 107). Sefotho (2013, 2015b) crafted the concept of hephapreneurship as a neology that promotes the transcendence of disability and the mainstreaming of the abilities of persons with disabilities. The term was coined from Hephaestus, the Greek god of blacksmiths, craftsmen, artisans, and sculptors, and the suffix entrepreneurship. Hephaestus was a disabled epitome of workers with disabilities. The term represents abilities and entrepreneurship. It promotes emphasizing entrepreneurial abilities of people with disabilities. Hephapreneurship is therefore a process of “fostering positive and meaningful existence built on subsistence entrepreneurship of

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differently abled persons and other underprivileged persons, founded on the ethos of career choice/construction towards transformative social justice and social change” (Sefotho 2013, p. 23). Hephapreneurshipis perceived as providing an alternative response to unemployment of youth with CCN.

Methodology The qualitative methodology underpinned by a transformative paradigm (Mertens 2009) within the domain of Heideggerian existentialphenomenology, which refers to the different ways in which human beings construct reality together (Jones 1998; Oglesby 2011) guided the participatory action research providing bases for this chapter (Bergold and Thomas 2012). The ontology of co-constructing meaning is based on the epistemological construction of knowledge grounded in human lived experience (Eatough and Finlay 2012). Participants shared their experiences as bases for knowledge appropriation about youth with CCN (Kamoche et al. 2014).

Participants A purposive sample (Teddlie and Yu 2007) of 8 youth with CCN (aged between 19 and 35 years), who had participated in the Fofa Youth Empowerment Project between 2005 and 2015, was recruited. Fofa is the Sesotho word for fly or soar. Symbolically is means one has attained full potential, allowing them to surpass expectations. To fly means to excel in what one is engaging or tasked with. Fofa means one is empowered to be in control of their life, making decisions, and being responsible. Table 14.1 provides a detailed representation of the participants. The Fofa Project focuses on youth with CCN who use augmentative and alternative communication (AAC). The Fofa Project aims to empower these youth to express their daily needs using AAC (Bornman et al. 2016). The Fofa Project also attempts to empower participants to

Gender

Male

Female

Male

Female

Male

Female

Female

Female

Participant

1

2

3

4

5

6

7

8

30

24

19

24

19

21

22

35

Age

IsiZulu

Afrikaans

IsiXhosa

Tshivenda

Setswana

IsiXhosa

IsiXhosa

Setswana

Language

Table 14.1  Table of Fofa participants

V

V

V

II

II

II

V

IV

GMCFS Runs an NGO for children with disabilities

Current employment status

Limpopo

In a private school for children with disabilities Employed as a disability advocate at a University

At home cannot get placement post high school Placed in a mainstream school

Western cape At home cannot get placement post high school Eastern cape At home cannot get placement post high school Mpumalanga In a school for children with physical disabilities

Northern cape

Home town

Vocalizations and Eastern cape laptop Vocalizations and Northwest laptop Gauteng

Unintelligible speech and a lap top Vocalization s and a laptop Vocalizations and an ipad Smart phone, communication book and unintelligible speech Pointing, ipad

Mode of communication

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learn for transition into society, to live independently, and to facilitate development of leadership skills.

Procedures Data collection was conducted through individual interviews and direct participation. The interviews were conducted with assistance of caregivers who were in some cases parents who had accompanied their children to the Fofa week. This is usually a week in September, yearly that is designated for “…workshops, training and brainstorming around becoming empowered and contributing members of society, and stepping out as change agents into a world that is often quite hostile to those who have different abilities” (Tönsing 2017, p. 10). Each year has a different theme and participants apply to take part. In some cases, because of little or no speech, it was necessary to use assistive devices to communicate. Some participants used computers, iPads or writing boards while others were able to verbally articulate their needs. The sessions were also audio-recorded and information collected formed part of the thematic analysis for the study as a “…widely-used qualitative analytic method within psychology” (Braun and Clarke 2006, p. 2).

Data Analysis Interviews were transcribed verbatim and analyzed using a six-phased thematic analysis proposed by Braun and Clarke (2006) and Clarke and Braun (2013). Once the data analysis was completed, the process of iteration was engaged in order to exhaust analysis. Where disagreements occurred, theme identification process was repeated until consensus was reached (Ryan and Bernard 2003). In order to provide for rigor in the analysis, other techniques such as researcher “immersion and distancing…relating themes to established knowledge” were used (Vaismoradi et al. 2016, p. 106). Two main themes were derived from the analysis: Theme 1: Life stories—living with limited communication and Theme 2: Exposure to life and working.

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Result and Discussion Life Stories—Living with Limited Communication Participants presented their life stories of living with limited communication. Isolation emerged as a challenge in the life of youth with CCN. Due to complex communication, the young people often find themselves alone, with no one to engage with them in conversation. One participant indicated: I cannot visit the people I love. This appeared to be a painful experience which may sometimes make them doubt their worth as human beings. The participants also find themselves often having to be dependent of others. Most depend on family members, especially mothers. Another participant reported: My mother has to accompany me. Although this is welcome in most cases, it however puts on halt the life of the mother who dedicates her life only on looking after her child. She cannot develop herself or do things she likes because of worry about the welfare of her child. Others, who can afford to pay for caring services, depend on carers employed to assist them. Not many youth with CCN would have similar opportunities. While care and dependency are welcome in most cases, it equally compromises the privacy of the individual. Some participants indicated a yearning for private moments where they can have opportunities for private affairs such as developing relationships without having to depend on anyone. In most cases this may not possible.

Exposure to Life and Working Participants reported that as differently abled people, they need to be exposed to the outside world, to what life generally looks and feels like out there. In many societies, there are tendencies to hide children with disabilities and to not expose them to life. Although this might be done to protect them against stigma and discrimination, it may not necessarily be in their best interest. Exposure to life entails allowing youth with CCN to live normal lives. There is need to introduce them to

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networks that could help them connect with other people beyond just family and close relatives. The young people could join or form associations or support groups that will allow them to explore more about life. Living in the knowledge economy era allows for social presence across the globe. Those who have access to the services of the internet could be encouraged to expand their networks and learn how other young people in similar situations survive. Youth with CCN reported that they have aspirations for working. Exposure to life and working plays a critical role in facilitating that youth with CCN are supported to live freely among their communities. Aspiring to work is a natural course of life, for it is through work that people define themselves, cater for their well-­being and contribute to their livelihood. Living with limited communication presents many barriers to employment. The participants indicated a strong desire to be employed. One participant declared: Finding work is difficult for me. However, this in itself is surrounded by challenges of whether youth with CCN are employable. The labor market may not necessarily be sympathetic to an employee with CCN for communication is fundamental in the world of work. While this may be true, it is equally important that the right to employment without discrimination is taken into consideration. Youth with CCN who participated in the study expressed a strong desire and need for opportunities for working. Due to CCN, many young people are discriminated against and excluded from accessing opportunities for working. Opportunities for working are limited globally for youth in general and they are more difficult to attain for youth with CCN. Employers are still negative toward employing differently abled people, more so, those who have CCN. Experiences of participants in the study indicate the complexity of inclusive employment. As a policy and a right, inclusive employment appears to be an ideal. However, the reality of many differently abled people and youth with CCN in particular prove to be to the contrary. Engelbrecht et al. (2017) report that governments around the world have not prioritized youth with disabilities in terms of creating access to employment for them. Since creation of opportunities proves to be evasive, it may be prudent to find alternative ways to include youth with disabilities in employment, especially youth with CCN.

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Significance and Application of the Chapter This chapter is significant in that it addresses a post-school transition gap left by most schools in linking inclusive education to inclusive employment. A certain malaise exists in society that leaves most differently abled young people outside education, employment, and training. Addressing the issue of NEET is significant in that it attempts to fill the unemployment gap that weighs heavily of the fiscus in catering for the needs of many people with various disabilities, most of whom are capable of working but are relegated by society and excluded from employment. The chapter could be applicable to inclusive employment policies addressing people with disabilities, in particular, Article 27 of the CRPD and the right to employment. The chapter responds to calls by international bodies such as the ILO, the World Bank, and Handicap International regarding employment of people with disabilities. Local policies and practitioners are also likely to benefit from this chapter in relation to how they address inclusive employment. This chapter could also benefit literature on inclusive employment in relation to youth with CCN.

Conclusion This chapter explored the plight of youth with CCN for them to be included in employment. Literature shows that most differently abled youth are not in education, employment, or training. This exposes them to vulnerability and poverty. Although there are policies globally that address inclusion of people with disabilities, Article 27 of the CRDP provides for the right to employment. However, implementation of such policies proves problematic. This chapter encourages youth with CCN through positive psychology, the capabilities approach, and hephapreneurship as an alternative to failing inclusion attempts. Findings from the study that informed this chapter indicate that youth with CCN are still excluded from employment and that finding work is very difficult for them. They yearn for exposure to life and opportunities that will allow them to identify opportunities for working.

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References Alant, E. (2007). Training and Intervention in South Africa. The ASHA Leader, 12(10), 11–12. https://doi.org/10.1044/leader.WB2.12102007.11. Bergold, J., & Thomas, S. (2012). Participatory Research Methods: A Methodological Approach in Motion. Historical Social Research/Historische Sozialforschung, 37(4), 191–222. Bornman, J., Bryen, D. N., Moolman, E., & Morris, J. (2016). Use of Consumer Wireless Devices by South Africans with Severe Communication Disability. African Journal of Disability, 5(1). Retrieved from https://doi. org/10.4102/ajod.v5i1.202. Braun, V., & Clarke, V. (2006). Using Thematic Analysis in Psychology. Qualitative Research in Psychology, 3(2), 77–101. Burton Blatt Institute. (2011). What Is an Inclusive Culture? A Publication of the Burton Blatt Institute (BBI) at Syracuse University [online], 17 December 2017. Available at: http://bbi.syr.edu/projects/corpculture/documents/a_ inclusive_culture.htm. Caliendo, M., & Künn, S. (2011). Start-Up Subsidies for the Unemployed: Long-Term Evidence and Effect Heterogeneity. Journal of Public Economics, 95(3), 311–331. Clarke, V., & Braun, V. (2013). Teaching Thematic Analysis: Overcoming Challenges and Developing Strategies for Effective Learning. The Psychologist, 26(2), 120–123. Eatough, V., & Finlay, L. (2012). Understanding the Experience of Discovering a Kindred Spirit Connection: A Phenomenological Study. Phenomenology & Practice, 6(1), 69–88. Engelbrecht, M., Shaw, L., & Van Niekerk, L. (2017). A Literature Review on Work Transitioning of Youth with Disabilities into Competitive Employment. African Journal of Disability, 6, a298. https://doi. org/10.4102/ajod.v6i0.298. Fasciglione, M. (2015). Article 27 of the CRPD and the Right of Inclusive Employment of People with Autism. In Protecting the Rights of People with Autism in the Fields of Education and Employment (pp. 145–170). Springer. https://doi.org/10.1007/978-3-319-13791-9_6. Giffen, D. C., & Zhivotovskaya, E. (2007). Positive Psychology Toolkit for Coaches: Book Proposal. Tesis Doctoral no publicada, University of Pennsylvania, Pennsylvania, EE.UU.

14  Inclusive Employment Plight of Youth …     295

Goss, D., Goss, F., & Adam-Smith, D. (2000). Disability and Employment: A Comparative Critique of UK Legislation. International Journal of Human Resource Management, 11(4), 807–821. Halder, S. (2008). Rehabilitation of Women with Physical Disabilities in India: A Huge Gap. The Australian Journal of Rehabilitation Counselling, 14(1), 1–15. Handicap International. (2011). Inclusive Employment: How to Develop Projects Which Promote the Employment of People with Disabilities and Other Vulnerable Populations. Villeurbanne, France: Handicap International. Jones, A. (1998). Some Reflections on Clinical Supervision: An ExistentialPhenomenological Paradigm. European Journal of Cancer Care, 7(1), 56–62. Kamoche, K., Beise-Zee, R., & Mamman, A. (2014). Knowledge Appropriation and Identity: Toward a Multi-discourse Analysis. Organization Studies, 35(9), 1373–1392. Kumar, S. G., Roy, G., & Kar, S. S. (2012). Disability and Rehabilitation Services in India: Issues and Challenges. Journal of Family Medicine and Primary Care, 1(1), 69–73. https://doi.org/10.4103/2249-4863.94458. Levy, J. M., & Hernandez, B. (2009). Employment and People with Disabilities. Journal of Social Work in Disability & Rehabilitation, 8(3–4), 99. Maja, P. A., Mann, W. M., Sing, D., Steyn, A. J., & Naidoo, P. (2011). Employing People with Disabilities in South Africa. South African Journal of Occupational Therapy, 41(1), 24–32. McNaughton, D., Bryen, D., Blackstone, S., Williams, M., & Kennedy, P. (2012). Young Adults with Complex Communication Needs: Research and Development in AAC for a “Diverse” Population. Assistive Technology, 24(1), 45–53. Mertens, D. M. (2009). Transformative Research and Evaluation. New York: Guilford. Muster, C. (2017). There Is No “Dis” in Our Abilities: Acknowledging the Experience of the Differently-Abled Community. In S. Halder & L. Assaf (Eds.), Inclusion, Disability and Culture (Vol. 3, pp. 107–132). Inclusive Learning and Educational Equity. Cham: Springer. https://doi.org/10.1007/978-3-319-55224-8_9. Norwich, B. (2014). How Does the Capability Approach Address Current Issues in Special Educational Needs, Disability and Inclusive Education Field? Journal of Research in Special Educational Needs, 14(1), 16–21. OECD. (2017). Youth Not in Employment, Education or Training (NEET) (indicator). https://doi.org/10.1787/72d1033a-en. Accessed 11 December 2017.

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Oglesby, R. A. (2011). The Lived Experience of Multiple Sclerosis in Women of Childbearing Years: An Existential Phenomenological Study. Doctoral dissertation, Pacifica Graduate Institute. Oktan, V. (2012). Psikolojiksağlamlığıngelişimindebir moderator olarakumut. International Journal of Human Sciences, 9(2), 1691–1701. Robeyns, I. (2005). The Capability Approach: A Theoretical Survey. Journal of Human Development, 6(1), 93–117. Ryan, G. W., & Bernard, H. R. (2003). Techniques to Identify Themes. Field Methods, 15(1), 85–109. Sefotho, M. M. (2013). Narratives of Differently Abled Persons: Informing Career Guidance Policy. Ph.D. thesis, University of Pretoria, Pretoria. Retrieved from http://upetd.up.ac.za/thesis/available/etd-04192013-144227/. Accessed 7 January 2017. Sefotho, M. M. (2015a). The Nexus Between Open Distance Learning and the Labor Market. In M. Letseka. Open Distance Learning (ODL) in South Africa (pp. 117–127). New York, USA: Nova Publishers. Sefotho, M. M. (2015b). Mainstreaming Disability in Education Beyond 2015. South African Journal of Education, 35(1), 1–8. Seligman, M. E. P. (2010, October 7). Flourish: Positive Psychology and Positive Interventions. The Tanner Lectures on Human Values. Ann Arbor, MI: University of Michigan. Seligman, M. E. P. (2011). Flourish: A Visionary New Understanding of Happiness and Well-Being. New York, NY: Free Press. Sen, A. (1985). Commodities and Capabilities. Amsterdam, the Netherlands: Elsevier Science. Teddlie, C., & Yu, F. (2007). Mixed Methods Sampling: A Typology with Examples. Journal of Mixed Methods Research, 1(1), 77–100. Tönsing, K. (2017). Fofa 2017—Making Connections. Interface and CAACNewsletter, p. 10. Retrieved from www.caac.up.ac.za. Vaismoradi, M., Jones, J., Turunen, H., & Snelgrove, S. (2016). Theme Development in Qualitative Content Analysis and Thematic Analysis. Journal of Nursing Education and Practice, 6(5), 100.

15 Kicking a Goal for Inclusion in Sports Clubs and Stadia Kate L. Anderson and Susan Balandin

Hot pies and potato-crisps they will eat, they will forswear the Demons, cling to the Saints and behold their team going up the ladder into Heaven, And the tides of life will be the tides of the home-team’s fortunes – the reckless proposal after the one-point win, the wedding and honeymoon after the grand final … (Bruce Dawe 1978)

Australia is well known as a sporting nation. According to the Australian Bureau of Statistics (2012), 65% of Australians aged over 15 years had participated in some sort of sport or recreational exercise K. L. Anderson (*)  School of Health and Social Development, Deakin University, Burwood, VIC, Australia e-mail: [email protected] S. Balandin  Deakin University, Burwood, VIC, Australia e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_15

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in the past year. Even if not playing sport, Australian households spend on average just under $20 per week on sports participation or products. In addition, the sports and recreation industry employs close to 100,000 Australians and enlist help from 2.3 million volunteers each year (Australian Bureau of Statistics 2012). Of all sports, Australian Rules football, which is overseen by the Australian Football League (AFL), has the highest attendance and participation rates in Australia. Many people in Victoria where we live and work follow AFL, which is the second most watched sport in Australia after cricket and the fourth most attended event in the world (Wikipedia 2017). Historically, Australians with disability have been invisible in sport. An exception applies to elite athletes in the Paralympics or Special Olympics, which are of course segregated activities. Nevertheless, there is increasing interest in ensuring that people with disability can engage in the sporting activities enjoyed by their peers without disability. Sports participation is valuable for both physical and mental well-being and can facilitate inclusion and a sense of belonging (Roy 2007; Southby 2013). It encompasses not only playing sport, but also being part of a sporting group as a spectator, supporter, volunteer, or club member. These forms of sports inclusion are protected internationally under the United Nations Convention on the Rights of Persons with Disability (UNCRPD) (2006), particularly article 30 which upholds the rights of people with disability to access mainstream sporting activities, venues, and related services (Roy 2007).

The Value of Sports Inclusion The AFL, like many other sporting organizations, is a major business in Australia offering employment and economic opportunity to the community. This benefit extends beyond players and club employees to include the retail of club-related products and memorabilia. AFL clubs also provide a range of public health and personal development initiatives to children and adults within Australian communities. Australia’s interest in sport is not confined to AFL; children begin to learn and play a range of sport at an early age, both in school and as

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an extracurricular activity. Adults often continue to play sport after they graduate and value watching sport for recreation. Many Australians strongly identify with an AFL or other sports team and hotly contest the merits of their team and the players. Thus for many people in Australia, including those with disability, sports participation and fandom play an important role in personal and social identity (Watson 2002). In addition to the numerous health benefits associated with playing sport, following a sport such as football can facilitate opportunities for social interaction and community participation by people with disability. In Kris Southby’s doctoral research for example (Southby 2013), adults with intellectual disability in England described the benefits of being a soccer fan, including attending matches with friends, having a sense of community and belonging, and having something to talk about with strangers and acquaintances. For participants in Southby’s study, wearing club attire and being able to contribute to banter between clubs or to talk about matches and players gave them the necessary ‘subcultural capitol’ to ensure that their opinions were sought out and valued. Despite this, many sports clubs in Australia and overseas fall short in their provisioning for people with disability, including basic facilities such as wheelchair accessible spaces, bathroom facilities, and in-­stadium captioning (Balandin and Anderson 2015). They also rarely give thought to the inclusion of people with disability as staff or volunteers (Balandin and Anderson 2015). Increasingly, it is recognized that people with disability can and should have access to the range of recreational, health, and economic benefits that sports offer. Australia’s new National Disability Insurance Scheme (NDIS) will provide some citizens with much needed support to access and engage in sport should they so choose. The roll out of the NDIS commenced in July 2016, and it is anticipated that by 2019 more than 450,000 people with disability under the age of 65 years will be supported under this scheme. The NDIS differs from previous disability funding schemes in that it recognizes the right of people with a significant or permanent disability to not only have a ‘reasonable and ordinary’ life, but also to determine, with support if needed, their own goals and pathways to achieving these. This includes having access

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to the sporting facilities and opportunities enjoyed by all Australians. With the growing availability of these supports, the participation of people with disability in a wide range of mainstream sport and recreation opportunities is increasingly feasible. However, support alone does not guarantee that sports stadia will be accessible for people with disability or that all sporting organizations will display a positive attitude to inclusion. The aim of this applied research review was to establish best practices for the inclusion of people with disability in AFL club communities. This chapter will cover some of the ways in which sports providers can promote engaging and meaningful community inclusion for people with disability, while also providing opportunities for skill development or a means to contribute to the economic growth of the community in which they live.

Method For this scoping study, we combined a review of academic and gray literature with expert consultation. Academic publications were sourced via Web of Science, EBSCOHost, ProQuest Central, and Scopus, using combinations of the following search terms: disability/ies, inclusion/ inclusive, stadia/stadium, practice, sport(s), football, spectator(s), spectatorship, and access(ible). We included any original research, review or editorial addressing the participation of people with disability as sports club members, facility patrons, club employees, or spectators. Where an absence of sports-specific evidence was encountered, we also sourced research from the broader field of disability inclusion to reinforce practice recommendations. To ensure we collected the broadest range of perspectives and examples, we considered a diverse range of supplementary resources including: • Newspapers, reports, and blogs sourced via NewsBank and Google, including practice guidelines from a range of disability advocacy organizations.

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• Relevant building standards and guidelines including the Australian Disability [Access to Premises] Standards (Australian Building Codes Board 2014), the Sydney Olympic Park Access Guidelines (Sydney Olympic Park Authority 2011), and the US Department of Justice Accessible Stadiums Guidelines (n.d.). • Relevant product information (e.g., about assistive devices, where these were mentioned in other sources), and • Exemplars from flagship inclusive stadia (e.g., Emirates Stadium in the UK and Barclay’s stadium in the USA). We also consulted with twelve experts in inclusion and sport, including assistive technology and inclusive sports practitioners, club managers, and disability advocates, about the emerging findings from the project. These consultation sessions informed additional, targeted literature and product searches.

Data Analysis The first author reviewed all included literature and formed five core themes, each corresponding to a role that people with disability could play within sports communities: (1) site visitors, (2) community members (e.g., recipients of community programs or sports training), (3) spectators, (4) supporters, and (5) employees. This chapter will focus specifically on the last three roles, as they concern the more personal relationships that form between an individual and club. Subthemes were derived for each role, and recommendations relating to each subtheme were summarized across the literature. Our expert consultants reviewed the recommendations until a consensus was reached. The final recommendations from this study were additionally cross-referenced against the principles of universal design. Universal designs accommodate the needs of a wide range of users, rather than being targeted specifically for people with disability (Balandin and Chapman 2001). For example, the provision of ramps not only benefits people who use wheelchairs but also people with strollers, luggage, and bicycles. Similarly, grab rails in bathrooms and larger toilet stalls

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are appreciated by older people, larger patrons, parents with children, and customers with large or multiple bags, in addition to people with mobility impairment. Thus, ensuring good alignment with universal design is an important issue for inclusive stadia, as the approach accommodates all patrons without singling out or stigmatizing any particular group. Although the focus of this project was the inclusion of people with disability in AFL sports stadia, these findings are equally applicable beyond the AFL arena.

Recommendations for an Inclusive Spectator Experience Without support and good stadium design, many spectators with disability are either unable to attend events in their community, or lack confidence to attend based on negative prior experiences. There is no reason why spectators with mobility, hearing, or vision impairment should not receive the same enjoyment from watching a game or attending a stadium concert than other members of the audience. Stadium technology is becoming increasingly sophisticated, available, and affordable, enabling many venues to provide a range of options for the enhanced participation of diverse spectators. Seven subthemes were identified in relation to this role: seating design, provision for assistance animals, assistive listening systems, captions, sign-language interpreting, commentary service, and viewing enhancement aids.

Seating Design Accessible seating is a key to enjoying the event and one that is often overlooked. Appropriate wheelchair accessible seating must be provided across a range of stadium sections including member and specialty areas and should offer a diversity of viewing and pricing options comparable to those for the general public. This promotes inclusion and at the same time avoids isolating patrons with disability from their companions and other spectators, or ‘grouping’ all spectators with a disability together

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in one area. In addition to seating areas that are wheelchair accessible, stadia should also provide ambulant accessible seating for people who experience difficulty with walking. These seats need to be located on the end of an aisle, up or down as few steps as possible, and easy to enter and exit (e.g., folding armrest, extra room at the front) (Sydney Olympic Park Authority 2011; US Department of Justice, n.d.). Ambulant accessible seats need to be stable with a backrest and strong armrests for weight bearing. All accessible seating areas should have a clear access corridor and be located close to the accessible building exits and amenities. Additional room at the front of the seat better accommodates for a mobility aid, such as a walking frame or stick, or a service or assistance animal. Because attending an event at a stadium is often a social affair, companion seats should be provided next to each accessible area (US Department of Justice, n.d.). People with disability dislike being in segregated areas with no appropriate seating for their friends or support personnel who are with them. Accessible seating areas may be more inclusive when they are distributed throughout the stadium, rather than clustered together in a single section. Local legislation will dictate minimum requirements for accessible seating provisions and grouping requirements, but best-practice designs cater to demand, usually ascertained through a rigorous consultation process with current and future users (Kitchin 2011; Sydney Olympic Park Authority 2011). Wheelchair seating areas need to be level, open spaces that are paved with a stable, smooth, and slip-resistant surface (US Department of Justice, n.d.). Regardless of their configuration, wheelchair accessible seating areas must offer a comparable line of sight to that of standing spectators in front. As described by the US Department of Justice (n.d., p. 2): A comparable line of sight …allows a person using a wheelchair to see the playing surface between the heads and over the shoulders of the persons standing in the row immediately in front and over the heads of the persons standing two rows in front.

Most people attending an event at a stadium move around at some stage, buying food or drinks or exploring the site. All too often, no

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allowance is made for people with disability who will also want to access food and merchandise outlets, use the bathroom, or catch up with friends they see in the crowd. Mobility is facilitated by an accessible route linking the wheelchair seating areas with all other common areas, including retail outlets, bathroom facilities, playing field and performance spaces (Kitchin 2011). For many visitors with disability, the opportunity to recharge equipment such as wheelchairs, scooters, assistive technology, or medical pumps could extend visiting hours substantially. This is easily achieved through the placement of easy-access surge-protected power outlets in some or all of the wheelchair seating areas. Similar charging facilities are now common in international airports and benefit all users of mobile technology, making them another good example of universal design. A key principle in universal design is flexibility in use, which allows resources to be utilized for different purposes according to need and improves overall efficiency of the space. This is easily achieved in wheelchair seating spaces with the provision of fold-down seats. Fold-down seating allows companion seats to be configured according to individual need, and these areas can also be sold to the general public when not required by spectators who use mobility aids. In order to off-set arguments by stadia management that not all wheelchair seating may be sold, some stadia (e.g., the Sydney Olympic Park Authority) recommend that within 7 days of the event, up to 50% of unsold wheelchair seating spaces may be opened to the general public, with the remaining spaces retained as accessible (Sydney Olympic Park Authority 2011). Thus stadia can be inclusive while at the same time protecting their profit margin should specialized accommodations not be taken up fully.

Assistance Animal Provisions Assistance animals (e.g., guide dogs, hearing dogs, seizure-alert animals, and support dogs for older people or those with mobility impairment) are working animals that are trained to cope with noisy and busy environments like football stadia. They are highly adaptable and tolerant. Nonetheless, there are some ways in which stadia can improve the

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comfort and safety of assistance animals and their handlers with disability, thus ensuring a successful and stress-free visit (Level Playing Field, n.d.; Royal National Institute for the Blind 2009). These include: • Allowing assistance animals and their handlers to access all public areas, even when other animals are prohibited. • Providing adequate resting space for assistance animals in accessible seating areas, at reception or ticketing desks, and in any waiting areas. • Providing suitable relief areas for assistance animals within the venue (i.e., a ‘Guide Dog Toilet’ similar to that found at Emirates Stadium). • Providing a water bowl for assistance dogs if requested. • Training staff in assistance dog etiquette, for example, knowing not to feed, pet, or distract working dogs.

Assistive Listening Systems Assistive listening systems can improve the clarity of spoken messages for people with hearing difficulty. This is important at sporting events where so much is happening and joining in with the stadium broadcasts is part of the event culture. There are two main types of systems, one where a message is sent through an external receiver, and one where messages are sent directly to a person’s hearing aid by means of a hearing loop, an induction loop, modulated radio system, or infrared system. In Australia, assistive listening systems need to be provided: • Where an inbuilt amplification system is used (e.g., for public announcements, commentary, performances, etc.), and • At windowed ticket offices/booths where the public is screened from the service provider. As with accessible seating, varying standards will apply in different legal jurisdictions. However, it is important to note that an effective and wide-reaching assistive listening system is likely to benefit a large number of patrons. This is likely to involve most, if not all, of the stadium space—including auditoriums, meeting rooms, and public assembly

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areas. The presence, coverage, and type of system must also be clearly signposted. Furthermore, the Sydney Olympic Park Access Guidelines recommended that, in addition to a permanent system, a portable system should also be available for use in smaller areas as needed (Sydney Olympic Park Authority 2011, p. 30). As with all equipment, assistive listening systems require regular maintenance and should be tested before each event (Level Playing Field 2014). Not surprisingly, spectators are annoyed and disappointed if they cannot be included as expected due to technological breakdown.

Captions Not all individuals with hearing difficulty can benefit from Assistive Listening Devices (Charmatz et al. 2011). In addition to such systems, screens and scoreboards that display public announcements must also be capable of supplementing the public-address system. The use of captions on at least some screens/scoreboards during any live broadcast is advised (Level Playing Field 2014; Sydney Olympic Park Authority 2011). In the USA, it is increasingly common for stadia to include open captions for all public announcements, referee calls, half-time presentations, music, speeches, and commentaries. A lack of caption provision has been the cause of legal action against stadium owners on several occasions (see, e.g., Charmatz et al. 2011; Lower and Petersen 2010). Although open captioning is not yet a legal requirement for Australian stadia, such facilities can greatly benefit patrons with or without hearing difficulty in the noisy stadium environment. There is some debate as to the best location of captions: on the large screens, to ensure that patrons can read and watch simultaneously, or on handheld devices, which are customizable and offer a range of additional features. In some stadia, the spectator screens display pre-prepared slides that augment the standard public-address messages, including emergency evacuation procedures. A simple measure to enhance this existing service would be to locate the public-address system close to the control center for the display screens, thereby allowing the announcer to type the message onto a slide template that could be displayed at the time of the announcement. Alternatively, the stadium

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could investigate the use of a professional stenographer, located on-site or remotely, particularly for shows/concerts where audience members would gain greater benefit from the availability of captions. Such captioning services are relatively inexpensive, and corporate sponsorship is often sourced to fund captioning for games and events. Finally, if the stadium technology is configured to support caption services, external parties hiring the stadium space are more readily able to engage a captioning business at their own expense. Captions can be provided on the large spectator screens, on any LED ribbon displays around the stadium, or through the distribution of wireless handheld captioning devices. Each of these options offers different benefits. For example, the use of the large screens allows patrons to access captioned content without having to hire a dedicated device and allows uninterrupted viewing of game play (Charmatz et al. 2011). Alternatively, handheld devices free up space on the main screen for statistics and advertising and can be used for a wider range of accessibility functions. Many of these devices can be used for additional purposes, such as being a portable FM amplification sets for people with hearing difficulty, streaming the audio/video content broadcast from the main screens, and receiving the radio commentary for patrons with vision impairment. Some devices can even be customized for languages other than English. However, many people may still be wary of technology and reluctant to use it, or may be unable to afford or bring their own device for viewing. It is important to note that many people also prefer to use sign language both for ease of use, and as part of their culture.

Sign-Language Interpreting For events that are heavy in spoken content, patrons who are deaf and use sign language will benefit from the provision of sign-language interpreting. This is becoming a more common feature at large entertainment stadia. For example, AT&T Stadium (Dallas) offers sign-language interpretation of concerts/events with 30 days notice, at the request of patrons. Clearly, offering this at no charge to patrons is part of the stadium’s responsibility for accessibility, but is also a public recognition of the importance of inclusion and the value in diversity.

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Commentary Service In Germany and the UK, many football stadia make use of a dedicated commentary service for patrons with vision impairment. The majority of these run on a voluntary basis, where a trained football fan provides a detailed running commentary that is transmitted via radio signal to receiver headsets in the audience. As one participant in the UK-based Soccer Sight project (Royal National Institute for the Blind 2009) described: ‘I still love the buzz of a match – even though I can’t see now. I follow every kick through my headphones. It’s brilliant, and the adrenaline rush when we score is still the same.’ Although some patrons may already be accessing commentaries on their own portable radio sets, specially designed headsets that provide pre-programmed channels and the clearest possible signal may further enhance the listening experience for spectators with vision impairment (Royal National Institute for the Blind 2009). Headsets can be prebooked with the provision of contact details or a refundable deposit and returned to floor staff on exiting the stadium. Most stadia advertising this service have between 10 and 15 headsets available, although each stadium could seek information from spectators on whether they have an adequate number of headsets available.

Viewing Enhancement and Viewing Aids Simple changes to seating sales can make a substantial impact for patrons with vision impairment. In Australia, one Victorian football fan with vision impairment (Bartl 2010) recommended that a small number of seats near the boundary fence be reserved for patrons with vision impairment who need to sit closer to the action. An alternative to this could be to provide magnification aids for hire at the venue—a range of low- and high-tech options for in-seat magnification is available across a broad pricing spectrum. Another strategy to improve the experience for people with vision impairment is to make use of the live media feed that is already streamed to the stadium screens. This could be delivered to individual patrons with vision impairment in a number of ways:

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• Via a monitor that is temporarily or permanently mounted onto an assigned seat. • Via a handheld device such as those described in the section on captioning, above, or • Via the patron’s own mobile technology (or hired mobile device), utilizing stadium-wide broadcasting or password protected Wi-fi transmission. Ideally, any viewing technology available to hire should offer a zooming function, as well as the option for user-controlled color and contrast adjustments so that individuals could personalize the device for their own requirements on the day. Hirable viewing aids are rarely available in stadia as of yet. One option is to customize existing technology options. For example, some networked stadiums such as the Barclay’s Center in Brooklyn and Sporting City in Kansas offer a live video feed for patrons to watch on their mobile devices. Stadium networking companies provide software that enable patrons to zoom in on live action or replay key moments. Although this is typically marketed toward patrons who do not want to miss any action while waiting in line for food or bathrooms, it could also offer enhanced, customizable viewing options for people with low vision. There are also purpose-built handheld systems on the market that can provide a similar service. However, being able to access the stadium is only part of the story. For keen sports followers and fans, membership holds the key to belonging and feeling included.

The Member Experience Being a member of a club brings additional privileges, feelings of belonging, and of course expense. There are several considerations for club members and supporters with disability, beyond site access and spectator issues. Key engagement areas that will require thought if inclusive club membership is to be successful are the cost of membership, the development of inclusive supporter networks, and facilitating match-day presence of supporters with disability. The member experience included two sub-categories: affordable access and inclusive networks.

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Affordable Access Some sporting clubs around the world, including Australia, offer a companion card rate at little or no extra cost to members with disability. A companion card is an identification card held by some people with disability who require the help of support person. Affiliate organizations provide free entry to support personnel accompanying a paying cardholder (for more information see: http://www.companioncard.gov.au/ affiliates.htm). Considering the higher cost of living and lower income typically experienced by people with disability, additional options for subsidized membership are helpful. As an example of exemplary practice, Arsenal football club in England employs several innovative schemes to facilitate financial access for supporters with disability. Most notable of these is Arsenal’s Purple Membership Scheme, where supporters with a registered disability can choose from a range of membership packages at reduced cost (Kitchin 2011). Arsenal has recently launched an additional ticket transfer service, which allows season ticket holders with a disability to transfer their place at a game to another supporter with disability, should the season ticket holder be unable to attend. This takes into account the possibility that members with disability may miss games in a season due to illness or transport barriers. Such subsidy schemes may help to boost the number of members and season holders with disability at a club and promote a message of welcome and inclusion to people with disability considering membership.

Inclusive Networks Some clubs encourage people of all abilities to join supporters’ networks such as the cheer squad or local supporters’ groups, through the use of accessible and targeted advertising. Inclusion is also promoted by ensuring that supporters’ networks provide a welcoming environment for people with disability, and that any designated meet-up areas comply with access standards. Structured programs, such as the volunteer Match Buddy scheme in the UK, pair up club supporters with and

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without disability allowing them to meet up regularly and enjoy matches together (Level Playing Field 2013). In addition to promoting inclusion and positive attitudes toward disability (Shelvin and O’Moore 2000), these opportunities may offer additional companionship benefits to members without disability who might otherwise attend a match alone. Currently, there is scant research on how integrated club membership impacts on community attitudes toward disability, whereas the research on the impact of involving people with disability in elite sport to create positive attitudes has shown mixed results (Brittain and Beacom 2016; Ferrara et al. 2015; Paradis et al. 2017; Swartz et al. 2016). Consequently, it is important to evaluate not only how increased inclusion in clubs benefits people with disability but also the benefits for the general community.

Stadia, Disability, and Employment This final section provides an overview of how stadia could provide employment to people with disability. Employment is one of the pillars of inclusion, and given the high value placed on sport in many cultures, stadia may have an important role to play. Employment is important to people with disability and is perhaps one of the best indicators of an inclusive society. Paid employment and volunteering experiences can lead to increased self-confidence and sense of belonging, as well as facilitate the development of new social relationships (Lindsay 2011; Lindsay et al. 2012; Wilbanks and Ivankova 2014). People with spinal cord injury have reported that working helps to keep their mind and body active and improves their overall quality of life (Wilbanks and Ivankova 2014). Moreover, engaging in competitively paid inclusive employment leads to better economic wellbeing for people with disability (Wehman et al. 2007) and opens doors to future career progression (Enright and Mora Szymanski 2010). Australian legislation protects the rights of people with disability to gain employment (Australian Human Rights Commission 2012). In practice, however, equal employment in Australia, as in other countries, is not routinely achieved. According to the Disability Employment Australia Web site (2017), one in five Australians of working age has

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a disability, but only 53% of this group participate in the workforce. Injury, illness, and disability are also often associated with other risk factors for poor employment outcomes including socioeconomic disadvantage. Research has also linked personal and leisure interests to improved motivation for return-to-work (Macaden et al. 2010). Sporting clubs and stadia often have a large staff of skilled, semi-skilled, and unskilled workers and may have the capacity to support employees with disability across several life domains, including physical and emotional well-being, recreation and leisure, social relationships, and community participation, while maintaining a focus on employment as a primary outcome. By including people with disability as employees, sports organizations could further enhance their efforts to provide a holistic, community-centered service that considers current and future individual needs. We suggest that sports stadia and clubs have the potential to offer employment to people with disability that would be highly valued and would promote a more inclusive work setting for all employees. Recent Norwegian studies involving people with disability have noted the importance of a person’s employment context, including football clubs, on feelings of self-worth and value (Balandin and MolkaDanielsen 2015; Julnes et al. 2010). We argue that including people with disability on staff at sporting venues in cultures where sport and sports players are revered will spread a positive message in support of inclusion, while at the same time tapping into the economic contribution that people with disability can make to the community. Further, the nature of stadia staging events may be ideally suited to many people with disability as the opportunities for part-time work (and indeed volunteering that may lead to paid employment) are plentiful, particularly on match days or when large events are scheduled.

Conclusion The role of sports stadia in promoting inclusion has received little attention. To date, there has been a focus on the role of both inclusive and segregated sports in promoting health and well-being for people with disability. However, for many members of the community an interest

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in sports means following a team, attending matches or games, and experiencing the adrenaline rush of live entertainment when the home side wins. Our recent research review (Balandin and Anderson 2015) indicated that sports stadia now have the resources to overcome barriers to inclusion, and in many cases are working to ensure that people with disability can access sporting and other live events alongside their peers without disability. Following, playing and enjoying sport is for many people a lifetime activity. People with disability are involved in all aspects of sport, but there is little research to date on how accessible and welcoming sports stadia promote inclusion. Given the role of sport in our society, the interest that sport engenders, and the enjoyment—and despair—that people experience going to live events, it is clear that stadia must work to be inclusive and that people with disability should be encouraged and supported to attend stadium events if they choose.

References Australian Building Codes Board. (2014). Access for People with a Disability. Retrieved December 6, 2014, from http://www.abcb.gov.au/en/majorinitiatives/access-for-people-with-a-disability.aspx. Australian Bureau of Statistics. (2012). Sports and Physical Recreation. Retrieved from http://www.abs.gov.au/. Australian Human Rights Commission. (2012). Employment and the Disability Discrimination Act. Part 1. Retrieved October 15, 2014, from  https://www.humanrights.gov.au/employment-and-disabilitydiscrimination-actpart-1. Balandin, S., & Anderson, K. (2015). Optimising Disability Access and Inclusion at the Geelong Football Club. Melbourne, Australia: Deakin University Press. Balandin, S., & Chapman, R. (2001). Aging with a Developmental Disability at Home: An Australian Perspective. In W. F. E. Preiser & E. Ostroff (Eds.), Universal Design Handbook. New York, NY: McGraw-Hill. Balandin, S., & Molka-Danielsen, J. (2015). Teachers’ Perceptions of Virtual Worlds as a Medium for Social Inclusion for Adults with Intellectual Disability. Disability and Rehabilitation, 37(17), 1543–1550. https://doi.org /10.3109/09638288.2015.1052574. Bartl, A. (2010). Going to the Footy. Retrieved from http://www.divine.vic.gov. au/main-site/lifestyle/sport/going-to-the-footy;storyId,2044.

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Brittain, I., & Beacom, A. (2016). Leveraging the London 2012 Paralympic Games: What Legacy for Disabled People? Journal of Sport & Social Issues, 40(6), 499–521. https://doi.org/10.1177/0193723516655580. Charmatz, M., Hedges-Wright, L. L., & Ward, M. A. (2011). Personal Foul: Lack of Captioning in Football Stadiums. Valparaiso University Law Review, 45, 967–1031. Dawe, B. (1978). Sometimes Gladness: Collected Poems, 1954–1978 (pp. 180– 181). Melbourne: Longman Cheshire. Disability Employment Australia. (2017). Disability Employment Services Sector. Retrieved from http://disabilityemployment.org.au/for-employers/ disability-employment-services-sector/. Enright, M. S., & Mora Szymanski, E. (2010). Research on the Career Development of People with Disability. Work and Disability: Contexts, Issues, and Strategies for Enhancing Employment Outcomes for People with Disabilities (3rd ed.). Austin, TX: ProEd. Ferrara, K., Burns, J., & Mills, H. (2015). Public Attitudes Toward People with Intellectual Disabilities After Viewing Olympic or Paralympic Performance. Adapted Physical Activity Quarterly, 32(1), 19–33. https://doi. org/10.1123/apaq.2014-0136. Julnes, S., Balandin, S., & Molka-Danielsen, J. (2010). An Exploration of Leisure Activities in Real and Virtual Worlds. Journal of Applied Research in Intellectual Disabilities, 23(5), 509. Kitchin, P. (2011). Planning and Managing the Stadium Experience. In L. Trenberth & D. Hassan (Eds.), Managing Sport Business: An Introduction (pp. 350–366). New York: Routledge. Level Playing Field. (2013). Match Buddies Toolkit. Retrieved from http:// www.levelplayingfield.org.uk/sites/default/files/contentfiles/lpf_toolkit_ booklet_may_2013.pdf. Level Playing Field. (2014). Deaf or Hard of Hearing Helpsheet. London, UK. Retrieved from http://www.levelplayingfield.org.uk/sites/default/files/ contentfiles/deaf_or_hard_of_hearing_helpsheet_with_updated_contact_ june_14_0.pdf. Level Playing Field. (n.d.). Making Your Club Accessible: 10 Tips. Retrieved from  http://www.levelplayingfield.org.uk/sites/default/files/contentfiles/ lpf_making_your_club_accessible_a4.pdf. Lindsay, S. (2011). Discrimination and Other Barriers to Employment for Teens and Young Adults with Disabilities. Disability and Rehabilitation, 33, 1340–1350.

15  Kicking a Goal for Inclusion in Sports Clubs …     315

Lindsay, S., Adams, T., Mcdougall, C., & Sanford, R. (2012). Skill Development in an Employment-Training Program for Adolescents with Disabilities. Disability and Rehabilitation, 34, 228–237. Lower, L. M., & Petersen, J. C. (2010). Stadium Accommodations and JumboTrons. Journal of Physical Education, Recreation & Dance, 81, 47–52. Macaden, A. S., Chandler, B. J., Chandler, C., & Berry, A. (2010). Sustaining Employment After Vocational Rehabilitation in Acquired Brain Injury. Disability and Rehabilitation, 32, 1140–1147. https://doi. org/10.3109/09638280903311594. Paradis, K. F., Misener, L. J., McPherson, G., McGillivray, D., & Legg, D. (2017). Examining the Impact of Integrated and Non-integrated Parasport Events on Volunteer Attitudes Towards Disability. Sport in Society, 20(11), 1724–1744. https://doi.org/10.1080/17430437.2017.1329826. Roy, E. C. (2007). Aiming for Inclusive Sport: The Legal and Practical Implications of the United Nation’s Disability Convention for Sport, Recreation and Leisure for People with Disabilities. The Entertainment and Sports Law Journal, 5(1), 4. http://doi.org/10.16997/eslj.75. Royal National Institute for the Blind. (2009). RNIB Soccer Sight: A Guide to Providing a Service for Blind and Partially Sighted Football Supporters. Retrieved from http://www.rnib.org.uk/sites/default/files/soccer_sight_ guide.doc. Shelvin, M., & O’Moore, A. M. (2000). Fostering Positive Attitudes: Reactions of Mainstream Pupils to Contact with Their Counterparts Who Have Severe/Profound Intellectual Disabilities. European Journal of Special Needs Education, 15(2), 206–217. Southby, K. (2013). Social Inclusion Through Football Fandom: Opportunities for Learning-Disabled People. Sport in Society: Cultures, Commerce, Media, Politics, 16, 1386–1403. https://doi.org/10.1080/17430 437.2013.790899. Swartz, L., Bantjes, J., Knight, B., Wilmot, G., & Derman, W. (2016). “They Don’t Understand That We Also Exist”: South African Participants in Competitive Disability Sport and the Politics of Identity. Disability and Rehabilitation, 1–7. https://doi.org/10.1080/09638288.2016.1242171. Sydney Olympic Park Authority. (2011). Access Guidelines (3rd ed.). Retrieved from http://www.sopa.nsw.gov.au/__data/assets/pdf_file/0009/474777/SOPA. United Nations Convention on the Rights of Persons with Disabilities. (2006). https://www.un.org/development/desa/disabilities/convention-on-therights-of-persons-with-disabilities.html.

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US Department of Justice. (n.d.). Accessible Stadiums. Retrieved from http:// www.ada.gov/stadium.pdf. Watson, N. (2002). Well, I Know This Is Going to Sound Very Strange to You, but I Don’t See Myself as a Disabled Person: Identity and Disability. Disability & Society, 15, 509–527. https://doi. org/10.1080/09687590220148496. Wehman, P., Inge, K. J., Revell, W. G., & Brooke, V. A. (2007). Real Work for Real Pay: Inclusive Employment for People with Disabilities. Baltimore: Paul H. Brookes. Wikipedia. (2017). Australian Football League. Retrieved from https://en.wikipedia.org/wiki/Australian_Football_League. Wilbanks, S. R., & Ivankova, N. V. (2014). Exploring Factors Facilitating Adults with Spinal Cord Injury Rejoining the Workforce: A Pilot Study. Disability and Rehabilitation, 50, 387–393.

16 Breaking Down Silos: Women with Disabilities Issues, Voices, and Concerns in Family Pratima Gurung

Background Nepal is a home to 26.5 million people following multilingual, multireligious, and multicultural with diverse geographical region with more than 125 caste and ethnic groups diversified. Social and power structures, institutionalized through a caste system, stratify individuals into unequal positions from and by birth. Exclusion and discrimination are continued on the basis of caste, class, ethnicity, gender, and even geographic location (DFID and World Bank 2006) and in other social forms. Among all these multiple forms of inequity, persons with disabilities are among the most deprived populations in Nepal, historically excluded from mainstream politics and socioeconomic development (Norad 2014). The National Census 2011 reports that 1.94% of the total population of Nepal is living with some kind of disabilities, where

P. Gurung (*)  PadmaKanya College, Tribhuvan University, Kirtipur, Nepal © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_16

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54.5% are male and 45.4% are females whereas the National Living Standard Survey report 2011 states 3.6% with some types of disabilities. However, both figures are quite low and have difference as compared to the 15% disability prevalence rate in developing countries and in the higher prevalence rate of female with male with disability claimed by World Health Organization (WHO and World Report on Disability 2011). Various studies carried out based on impairments, policies, and information on person with disabilities at different level by different stakeholders reflect that there is inconsistency, credibility, and uniformity of disability statistics in Nepal; as a result, it is difficult for service provider (Gurung 2016; Eide et al. 2016). This also results in the lack of reliable data and evidences on women with disabilities in Nepal.

Understanding Disability The overall discourse of disability is still a clandestine issue invisible in social map till today in Nepal. Disability and gender both are socially constructed phenomena in Nepali society. The severity of disability accentuates the individuals because to have disability is not only the disabled body but also stigma associated with it. And stigma often causes downward mobility with prejudice, segregation, shame, and hatred by non-disabled world. They are understood as “sins of past deeds” (Kamal 2011), a “penance to past sins” (Panthi 2004), “abnormal,” “inferior,” and “unproductive human being” situating them in lowest social hierarchy. Furthermore, the disabled condition itself becomes burdensome and subjugates them. The gaze and needs of the non-disabled world defines disabled world in many ways. Similarly, the gender norms are often determined by culture and society in which people live and these norms govern differences in roles, and expectations attribute to men and women (Ridgeway 2004; Kishor 2005) including sexuality and reproduction. Stereotypical assumptions include femininity as inferior, passive and a less valued form of identity. The “othering” of the disabled body and gender body both escort to discrimination. Unfolding all these circumstances, the heterogeneity of girls and women with disabilities by socioeconomic status, ethnicity, age,

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geography, region, and other status creates the second layer of ­multiple discrimination at various levels. That is why women with disabilities undergo intersectional discrimination on several grounds, and they are mainly categorized into two classes: First struggling for rights, few women with disabilities are aware about their rights and they have experiences of social and economic discrimination including abuse, violence, and stigma and are fighting for ensuring their rights; second struggling for life, most women with disabilities are struggling for basic needs like food, social protection, care, affection, and family support. They are unaware or have no choice about the challenges they face within home, with no voices to believe (Gurung 2013a).

Defining Disability Disability is an evolving concept with a complex, dynamic, multidimensional, and contested term; however, the understanding of disability in Nepal is associated mainly with two types of understanding. First, official definition produced by the government of Nepal. It defines disability as those who have long-term physical, mental, intellectual, or sensory impairments or functional impairments, which in interaction with various barriers may hinder full and effective participation in society on an equal basis with others. Grounded on this definition, the recent Disability Act 2017 classifies disability into ten types: physical, disability related to hearing, vision, voice and speech, deaf and blind, mental and psychosocial, intellectual, hemophilia, autism, and multiple disability which has opened a new avenue in disability discourse to work further. In addition, persons with disabilities are further classified into four categories based on the severity of their functional limitation like category A (profound disability); category B (severe disability); category C (moderate disability); and category D (mild disability). The disability discourse in Nepal is influenced by definition provided by government and understands disability from service delivery, social protection, support, and rehabilitation approach. Second those produced by professionals and academics based on theory and experience that are contextual. Professionals and scholars on the

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multiple nuances theorize disability in their writings and produce their own understanding. They conceptualize disability as polysemic, ambiguous, and unstable in meaning mixture of truth and fiction that depend on “who says what to whom, when and where” (Cooker 1999). It is contextual and comprehensive based on the experiences that produce meaning, interpretation, and culture of the given society. Such theoretical and philosophical analyses are grounded with academic paper and writings. The discourse of disability has just started to be an academic course in the curriculum of universities in Nepal (Gurung 2015), and there have been no satisfactory studies and research on history of disability situation and disability movement (Maharjan 2015).

Women with Disabilities in Nepal Women with disabilities occupy a multifarious and marginalized position in feminist, disability and state discourse in Nepal. Girls and women with disabilities are excluded from women movement due to their disability, disability movement due to their gender, and one-third of world context due to poverty in public sphere (Gurung 2015). Similarly, women with disabilities have no role in private sphere. In general, although women and men with disabilities share similar experiences of devaluation, isolation, marginalization, and discrimination, the intersection of disability, gender, patriarchal values and norms associated with women is considered to be one of the most powerful components toward exclusion and isolation beginning from very early stage of her life. The socially constructed myths, stereotypes, and misinformation on gender and disability influence both family and girl and women with disabilities. Wendell describes that disability is not a biological given, like gender it is socially constructed from biological reality. Their status is determined by the social-cultural roles that are beset with multiple challenges and oppression of being disabled in the society and dominated by the able-bodied (Wendell 1997) escorting them to invisible category. Similarly, the gender-power relations and culturally ascribed roles establish women in a subordinate position, dependent, passive, defining with more symbolic role representing honor of the family through health and beauty.

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Due to the social construction of both gender and disability, individuals may choose to rely on one identity more to improve their social standing. For men, choosing to identify more with their gender allows them to be perceived as “dominant” and “powerful” instead of “powerless.” For women, both identities are perceived as “weak” and “inferior.” That is why discrimination on the basis of gender and disability is a fact officially recognized by the UN Convention on the Rights of Persons with Disabilities (UNCRPD) in Article 6 and Nepal has ratified the convention and Nepal’s disability movement has significant influence of UNCRPD and UN systems to bring changes in the lives of person with disabilities. The socially constructed roles depend on socioeconomic and cultural context holding wider Hindu belief giving preference to son than to daughter. This philosophy has got more impetus by modern technology, providing a way to determine the sex of unborn fetus. In a society where there is widespread female abortion, aborting imperfect children will not cause any stir or rancor. While there is an ongoing discussion of the ethical contradictions that prenatal sex testing poses for feminists, prenatal testing to identify and abort children at risk for disabilities does not get addressed (Ghai 2003). That is why parents are engulfed with anxiety and not in a celebrating scenario when a girl with disability is born that is hidden most often in Nepali society. The growth of girl with disability with disabled body undergoes either “overprotection” associated with perfection and beauty or “sheer neglect” associated as “unproductive with human resources,” or “shame” associated with disability, that hampers physical and psychological development devaluing herself and her family. Jhamak Ghimire, a noble literary figure of Nepal, shares her experiences that she was always in subordinate position because she was born as a female and a disabled in her family. She shares her experiences of being disabled and being a female who did not have any rights and her family never took her as a member of family or part of them (Ghimire 2010). Girls and women with disabilities are struggling for their existence and lack collective voice and support inside family or seen as burden or shame to family and kept inside the room or sent to an orphanage, asylum, or rehabilitation center. 90.5% of the households reported that they had faced various problems having disabled child in the households (New Era 2001). The family members feel infamy and never

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include them in daily activities that further position them denying from the “traditional roles” and create what Michele Fine and Adrienne Asch term “rolelessness” (Fine and Asch 1998) inside the family. The primary domestic role for women is considered to wife, mother, and family where most women with disabilities are left out. Home, a symbol of unconditional love among family members and source of life, becomes questions to most girl and women with disabilities because of the societal roles and sheer neglect and discriminatory attitudes and behavior befalling to them. In a series of narrative interview with women with disabilities, parents and other stakeholders’ experiences such as marriage, violence, education, health, and employment were meshed but the role of family and their challenges which they equally share especially by mothers with girl and woman with disability was never an integral part of the conversation. (It is information collected from ground at different stages working on different issues of women with disabilities.) Locating family as center, it has been realized, despite hardships, family is the agency that provides emotional strength. The relatedness within the family sustains the subsistence of a child with disability, whether a boy or a girl. Though there may be a temporary loss of agency, the resilience of close family ties makes it possible to generate the necessary resistance to fight against oppression (Ghai 2003). However, has this value system realized and practiced in good and enabling environment inside family. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) in the preamble “x” and “q” and in article 23 acknowledge family as a natural and fundamental unit of society, and it respects home by realizing that girls and women with disabilities often greater risk both within home; however, there is scant attention paid on the role of family. It has often remained unarticulated and unsearched subjects by public world till the date. Home is a balcony from where every individual understands and observes the world. The quality of home has direct and indirect effect in learning and shaping the child’s mind for quality of life and well-being. The home occupied with pain, stigma, hatred, grief, and isolation, which most girls and women with disabilities are engulfed, has same adverse understanding of the world outside that demeans their competence with society. Due to this reason, most

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girls and women with disabilities issue concerns, and their visibility in private and public discourse is insignificant. So the study aims to look closer the experience of girl and women with disabilities and environment they receive within the family.

The Study This paper is based on research that endeavors to explore and document information from the study Family Discrimination against women with disabilities and their response in 2013 and next field study conducted with women with disabilities in 2015 to find out the situation of women with disabilities at homes. The study had following objectives: Study and describe about familial discrimination against girls and women with disabilities; Examine and find out different types of discrimination against girls and women with disabilities; and Recommend further strategies and affirmative actions to aware family, girls, and women with disabilities and society.

Methodology It has focused mainly on fifty-five women with disabilities of various types. The research instruments included in-depth interviews with women with disabilities and their respective organizations, life histories and survey questionnaire, and participant observation. Six collective settings (organization, college, training skills centers, community home, and hostel) and other individuals setting (home, friends room, workplace, and others) representing from various region/part of the country were selected. In the first step, the research was aimed to conduct a study from sociocultural aspect of women with disabilities and three settings with sample questionnaires were interviewed with six women with disabilities where women with disabilities during the pretest suggested topic on family that were/are crucial for them. So the topic on sociocultural

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aspect was changed focusing on familial discrimination and objective of testing the questionnaire for problems in its content and form and with subsequent improvement was done accordingly. The study by its nature on the discriminatory actions of family members was/is a complex issue to discuss in Nepali society where family is the authority for everything so exploratory descriptive and analytic design has used to find out the history, action, perception, behavior of women with disabilities including the problem within family, ideas and thoughts of women with disabilities about their family members, additional insights of women with disabilities perspective through observation, case study, survey methods, and accessing both primary and secondary information. To find women with physical disabilities at one setting was difficult so Gaetner’s theory (1986) focusing on participants who were staying in the shelter or different organization and Dion and Earn theory (1975) focusing on participants who would share their disability and familial discrimination experiences easily were incorporated. Primary data have been collected using semi-structured interview questionnaire to find out the acceptance of familial discrimination and forms of discrimination whereas unstructured interview has been used with ten key informant interviews from various backgrounds. Secondary data were gathered from various organizations and desk review and other sources. The information was collected through mixed-method to cover the breadth and depth of the study area and issues. Multiple sources of information through informal sittings like programmes, interviews, observation, meetings, informal group discussion and conversation were collected and documented. Similarly formal procedures like respondents semistructured interview, documents, field notes were analysed. Data have been interpreted using both qualitative and quantitative method. Quantitative data have been interpreted quantitatively using SPSS 16 version. The anonymity and privacy of the participants was maintained throughout the research period. Conducting research on topic that is related to family discrimination was challenging because respondents did not want to speak about family matter. So all the names in the study were in pseudonyms. Their right to refuse participation and their rights in data, recordings, and publications were informed. Prior consent was taken from participants.

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Discussion on Women with Disabilities and Family The research findings have been grouped into two: discussion and remarks on familial discrimination. The discussion includes literatures on family and how is it perceived in Nepali society including information obtained from the women with disabilities from fieldwork, and remarks are based on the analysis of literatures on familial discrimination for policy recommendations.

Issues Around Family Family is a primary institution bond of affection made up of different shapes and sizes and support, guidance and space for child. It is a foundation to understand life, affection, and space for bridging community activities and learn identities of individuals and a balcony to observe the world outside but at the same time, family is also a place where most domestic violence and abuse take place and are not safe (Hans and Patri 2006; Thiara et al. 2011). It is a cosmos where children spend much of their spare time and are able to exert some control over their lives. So the article discusses understanding on familial discrimination and its existence within homes, standards of life at homes, behavior and attitudes including safe environment and linking home to community activities to discuss and open avenues for girls and women with disabilities. Studies have reflected that the double dose of discrimination, abuse, isolation, and violation of human rights begins at home from family members, caretakers, and personal assistance where most girls and women with disabilities do not receive attention (Nosek 1997; Abu Habib 1997; Alwis 2009). In this connection, Shakespeare discusses that the development of social and community networks for girl with disabilities is particularly important in the family context, because of their continued exclusion from particular areas of life (Shakespeare 2006). There has been profound silence and hesitant to discuss about

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these matter both from family and girl/woman with disabilities and other stakeholders. In this line, Asha Hans argues family as an institution has been subjected to sociological and psychological examinations, at most of the times, as it has often remained surrounded by controversy and lacks rich discussion. She adds it is important that the private space be made public and the role of family has to be issued for women with disabilities (Hans and Patri 2006).

Family as Private Matter Most family issues have remained an articulated topic as non-interference matter related to private affair till now and there are many reasons for it. First, the feminist movement, activism, and organizations have largely omitted and ignored in feminist campaigns against domestic violence and discrimination (Salthouse and Frohmader 2004). Second disability movement is dominated by male-centric hegemony so the private sphere is commonly assumed to be personal. Domestic violence and discrimination, sexual abuse, reproductive rights, parenting, childcare, and dual management of family have been rarely focused as major agenda in the disability movement (Ghai 2003). Third, lack of documents and evidences from the ground and credibility on women with disabilities statements and opinion remain a challenge (WWDA 1998–1999), and most women are not in position to share and inform. In addition, these evidences rely on the types of disabilities, stigma, and stereotypes related to gender, socioeconomic class, level, and others. In many instances, service provider focuses on the disability rather than the abuse or discrimination (New South Wales Department for Women 1996) to girls and women with disabilities. Fourth, in most countries there has been perception that the state should not interfere in the “private” realm of family ­relations (Bond 2003). Hence, family as an institution has remained without ­discussion in society. The existing research primarily focuses family as a unit and relating persons with disabilities right to found a family or parents of children with disabilities and lack of services and needs to family members (Franklin 1972; Morris 1992; Thomas and Curtis 1997; Crow 2003;

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Prilleltensky 2003; Neville-Jan 2004; Malacredia 2009). In this ­connection, Charlesworth contends sexist laws from both the perspectives: First, they have directly discriminated by excluding women from the public sphere; second, the law has failed to regulate much of what takes place in the private sphere (Charlesworth 1998). It has left the private sphere having discrimination and violence occurred to most women with disabilities. The cycle of negativity begins when a girl-child with a disability is born, including the imposition of social stereotypes of asexuality and passivity, acceptance of abuse as normal behavior, isolation in the home, and dependence on perpetrators of abuse for personal assistance (Steward 1979; Nosek 1997). Moreover, Habib argues that the double discrimination against girl and women with disabilities starts from the family. It begins during early childhood when family allocation of resources to persons with disabilities in the family is very much influenced by their disability; as a result, minimal resources are allocated to girls and women with disabilities as compared to boy and men with disabilities (Habib 1997). Similarly, studies done on the prevalence of violence against women with disabilities in Nepal states that the 60% perpetrators had experience of violence and were usually known to the women— members of their own family (including parents and husband) or close community (NDWA 2008; Puri and Mishra 2015). Therefore, literatures support the fact that discriminatory social and political policies emerge from private sphere (Fine and Asch 1998; Hans and Patri 2006). Few initiatives to understand private policies and framework have been initiated globally. In the past, the fundamental division between the political, public sphere associated with men and the private, domestic world associated with women exists even in international law (Johnstone 2006) and was long evident in international human rights law. Equally, human rights law left the public/private dichotomy untouched and initially focused on civil and political rights (Sullivan 1995), rights that affected only the public sphere. Similarly, the UN system did not consider private acts—perpetrated by private actors that take place in traditionally private spheres such as the home—to be human rights violations. This determination had discernibly negative effects on women’s abilities

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to seek redress for the gender-specific abuses that they suffered (Bond 2003) in the past. Now, there has been shift; international human rights laws apply to women in all spheres of life: at home, in the workplace, and at school. States are responsible for human rights violations that occur to women in “private,” or at the hands of non-state actors. The Convention on the Rights of Eliminations of all forms of Discrimination against Women (CEDAW) and UNCRPD have mentioned that states must work to end discrimination throughout the private sphere.

Nepali Society and Family The family is a powerful and strong unit in Nepali cultures (Rolls and Chamberlain 2004). The traditional family constellation is the basis for social structures that structures to encourage and promote the maintenance of the stability and continuity of the family. Young family members are guided by their parents or by the elders in the family (Shanmugasundaram et al. 2010). In cultures, where the family relationship is highly valued, the individual concept of understanding, perception, and autonomy have less chance to value. Preserving family harmony and bond, no matter they are ruined and shattered internally, is highly prioritized over the individual preferences. Family becomes a unit for decision making and functioning all the system of home. In the framed context of family, to expose the world of family and their behavior in a public discourse is complex to define, sensitive to question, and close to argue (Gurung 2013b) in the Nepali society. There has been minimal realization that private sphere is a foundation for public sphere. The Shadow Report of CEDAW Nepal highlights that the interim constitution and the proposed language of the forthcoming constitution fail to acknowledge discrimination by nonstate actors or the distinction in forms of discrimination experienced by women in private sphere (Shadow Report 2011); however, efforts to internalize those understanding among women with disabilities are still a challenge and research to continue. In this regard, the article emphasizes the discrimination exists at home and it is the beginning that unfolds in many forms of behaviors escorting toward abuse, violence,

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and isolation. Hence, the private sphere has remained a grave social problem, extensive and pervasive in nature, and unarticulated subject both in the women world and disabled world. Breaking down the traditional silos of family with new narratives is a way forward.

Women with Disabilities Are Integral Part Gender and disability manifest in many different forms as structure of inequalities within family. Stereotypes roles of women and perception, lack of opportunity and participation in community activities, incompetence and exclusion from peers and family members and repeated indifferent actions within family sphere is common mainly in family. Conversation with participants has consistently reflected that gender and disability remain an integral and pervasive part in the individual/ family’s psyche that define many activities, behavior, and decision that have an unconstructive effect on the lives of girls and women with disabilities and have remained independent and isolated element most often.

Family and Women with Disabilities Concerns a. Understanding of familial discrimination There is no univocal definition and understanding of familial discrimination, and the definition varies from time, context, and situation of individuals. There were several understandings among the participants. The meaning of discrimination was based on the experiences. Some participants felt hesitant to define them in words, some opined: Familial discrimination is careless concern, denial in access, wear good clothes, education, participation, limited within the four walls with hatred, harassment and offensive words most often………….. Familial discrimination is uncared, neglect behaviour between my brother and sister.

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Repeated actions, behaviour goes like a catastrophe that leads to vulnerability, violence and isolation having no ideas, no thoughts, where to go, what to do, whom to say, just remain silence and just silence………………… Some words related with my disability and restriction to go outside of house, or seeking for services………. no quality time, no information, always a gatekeeper…

b. Family as a beginner Most participants of 67.27% mentioned family and family members as a beginner for several types of indifferent attitudes and activities inside home which varied from family perception, situation, disability (functional), class, ethnic, and others aspects. 16.36% participants stated for society, 12.73% of them for state policies, and 3.64% mentioned for themselves and their disability. Similarly, some participants of 52.7% stated gradual changes among family members about disability and their services are growing, 40% stated that their disabilities are still not accepted in the family and 7.3 stated their disability and gender are accepted by their family members. Simple actions like derogatory words, rejection, and shame originate at home that gradually turn to be hatred, feeling of detachment among the family members reinforcing discriminatory attitudes. c. Suitable setting Having discussion with both family members and girls and women with disabilities, the study analyzed most parents seek organizations to keep their child so that they would receive good services, environment, and learning about disability which is not always true according to the participants. 94.55% participants opined that family members planned their child keeping in organization whereas 5.45% did not have such plan. In addition, 67.27% participants stated home as the best place for a child to live with their family members with love, care, and respect.

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I feel I am forced to live in unacceptable situation in my home because every time I am in center to scold and abuse when difficult situation and shortage and challenges come in my family. If my parents are together, I always find them talking to find institution for me so that they would be remain less burden, I say I look after house

The study also found that more than 60% women with disabilities are living in institution/hostel or in other settings. Such condition demands a shift to enable all families to realize that home is the first place and rights of all children to stay in a good environment and quality time with their parents. d. Family is inspiration and strength and we want strength for us Despite discrimination, most participants understood the crucial role of family. It is inspiration and connection, a lifelong pillar for them and they aspire all the time. 32.7% participants reported that their parents were often supportive with them in their basic needs and services whereas 49.1% participants reported their parents were sometimes supportive, not always and 18.2% reported that they were never supportive to them. I remember, my father has always been a shadow; image of encouragement, enlightens and energy of my life to move ahead. She recalls that her father played a role of mediator in overcoming the social barrier with the society when she was small…..so she is even vocal with peoples when she has to tell her challenges.

For many of them, family is powerful bond that enables them to challenge and contribute in the society, irrespective of poor socioeconomic condition, ignorant, or illiterate. e. Different types of discriminatory behavior Fifteen categories of different type of behavior like offensive words hatred, neglect, and others were defined as discriminatory activities occurring at homes by participants. 98.2% of participants experienced

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offensive words by their family members quite often; 96% experienced gender discrimination and there was overprotection on them; 90.91% participants experienced lack of communication and information related to their several identities they had; 87% participants experienced disability which was often as a barrier in enjoying and exercising rights at home; 81.82% felt neglect and hatred by their own family members like father, brothers, and sisters and were not paid so much care as others. Similarly, 78.18% participants realized physical access and responsibility was barrier to them that their parents often reflected; 72.7% participants felt rejection and mental torture often provided to them in different ways and repeatedly by their family members. 67.32% participants’ expressed economic issue related to registration, citizenship, property, and services to them were indifference inside home. 64.58% participants’ opined families were reluctant in providing education for them; 63.6% participants experienced violence by their own parents, brothers, and stepfather, and other members and relatives; 34.62% participants stated that health was least focused area for them; and lastly 20% participants experienced marriage discrimination. The data with marriage discrimination did not cover all participants because most of them were not married and did not opine their expression. Regarding social participation and engagement, 74.55% participants opined their active engagement in household chores and their family members were involved in most social activities like attending marriage, ceremony, working in institution, earning, expending, saving, and making self-decision including others. With these activities, birth, citizenship card, and property are not registered frequently in the name of girls and women with disabilities so there is high risk of abandonment or hidden inside home. If their names are registered as person with disability and have disability card (red card: severe disability) means they receive disability allowance. Lack of appropriate support and differences in treatment, they explained, had range of thinking on family members that affected girls and women with disabilities in numerous ways. Such a situation had an adverse effect on family members and girls and women with disabilities and their quality of life. Children with disabilities had limited independence from their family members, less quality time to spend with their family members and caring responsibilities all most became shifted to other works and priorities excluding at home.

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Different identities, groups, sex, age, disability, ethnicity, geography, class, status, and others contributed to familial discrimination. The intersections of these identities reinforced higher prevalence of discrimination. 90.9% participants highlighted those aspects, and 87.27% highlighted poverty as one of the reasons that family members often expressed relating with the needs, safe, protection, and security of girl and women with disabilities inside family. Poverty is the burden which girls and women with disabilities carry the greatest part as in Nepali society. 90.9% participants focused exclusion in various forms inside and outside family. The notion of discrimination is multifaceted, and in many cases, intersectional discrimination is difficult to realize by the individuals and others because in most countries laws and understanding covers single dimension of discrimination so victims of intersectional discrimination frequently have difficulty to have the reality of their experience recognized by the existing legal or understanding system. So, the intersection of gender, disability, age, ethnicity, and others dependency leads to discrimination and confinement of women with disabilities in the private sphere and seriously impedes their active presence and participation in public life (European Parliament 2013). f. Causes of familial discrimination The notion of discrimination is felt throughout all realms of lives, and the causes were different. 40% participants highlighted that the lack of education, awareness, and acceptance of disability were primarily important. Most families including girl and women with disabilities did not know early identification and intervention measures and care about disability and access to state-funded services and procedures and remained reluctant to receive it. Most often 16.4% family members felt humiliation and disability was taken as asocial prestige. To accept publicly, having a girl/boy with disability in their family was difficult for them so girls and women with disabilities are most often limited within four walls whereas 27.3% stated for financial burden that increased their burden to look after them and care for them and 10.8% stated stigma and stereotypes associated with disability. Understanding the risk of families with children with disabilities living in poverty, effective financial support mechanisms are needed more to ensure those who are

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most financially vulnerable do not slip into poverty and risk. The financial needs of families with children with disabilities have been notably overlooked in policies that consider social exclusion and inclusion inside the family dynamics. Most women with disabilities were perceived as unproductive and unwanted based on the functional capacity to do was also one cause of familial discrimination. In addition, unequal power relation between family members/siblings and girl/woman with disability, social stigma and shame related with disability, and overprotection and security of girl and women with disabilities were some other causes that family members treated them differently. All these activities inside the family grounded on family’s perception and background, difference among siblings and sibling situation inside family. In addition, family size, rural and village setting, and types of family including their educational status and profession of parents, good-looking behavior, age, ability, and appearance of girl and women with disabilities also justified to act differently by families. Examples of success life stories and contribution that women with disabilities can contribute in family were missing aspect in the intellect of most parents and family members. These experiences need to be addressed holistically breaking down the traditional silos by girls and women with disabilities between family members and society.

Impact of Familial Discrimination The impact of familial discrimination lies at the intersection of gender and disability, ethnicity, economic condition, region, and other status that is fostered by a culture, myth and stereotypes of gender, disability and family that is deeply entrenched in Nepali society which devalues and systemically disempowers girls and women with disabilities at all levels. Many of the experiences in childhood continued into adulthood, and many discriminatory activities inside home shaped toward abuse and violence toward public sphere resulting them toward vulnerability and risk. It continued and boosted in several forms and settings with a popular belief that “such things happen in all families and it is obvious” remain widespread.

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a. Discrimination from family led with pessimism and fear Experiences of repeated unnatural behavior from family members were often more subtle and pervasive that led girls and women with disabilities having no confidence, fear, and in humiliation and pessimist situation. The indifferent behavior we receive inside our home loses our hope, optimism towards outside world. No one believes me at home, who will believe me outside and why???triggers me all the time? I see my family members and who ever query about my situation as my enemy and a lot of questions comes to my mind………..

b. Breaking the traditional family values and system Due to unfolded and repeated discrimination, the participants started seeking alternative beyond family. The family value system and bond to unite family members gradually weakened with the shift of seeking jobs, living in institution, friends and peers where they could stay to get rid of those inhuman activities. Nevertheless, those new avenues were equally more risk while choosing options of family because the level of discrimination they received from home differed as they were in other setting. Now we aspire to live out of home though we know we are unsafe, dependent and uncared, we want to free our mind, to do our work or better dead than alive…

c. Exclusion and isolation led to risk Most participants expressed that isolation frustration and exclusion within home. In such situation, participants have tried to revolt it or remain silence and the discrimination they have faced gradually accumulated and increased toward risk and attempt to suicide.

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Social exclusion and isolation from the family, neglect, made to feel a “burden”-“I am the problem”-led me to psychological and physical distress, and more than attempted to suicide………

d. Disability stigma gets embedded When families are passive and do not address about their child needs, both family and child remain away from information and knowledge about rearing and caring and society treats how the child is groomed. Participants expressed that girl and women with disabilities distinguished by the family members get easily dishonored by society and the weakness and problem and failure to meet family and societal norms become false reality for most people. Each year I think it’s going to get easier and….. each year the fight gets harder…

e. Challenges for social transformation and change When family and child both are embedded and intersected with several societal norms, myths, and stigma, then social transformation remain challenge because family is the central space to bring and realize change which can be shifted to others easily. Discrimination is embedded in our family and surrounded in our society so we all need to know and get aware about it for change because change is for all of us that has to begin first from family and family members for good family environment or bad ………..

Remarks Girls and women with disabilities face lower access to care and support, indifferent and repeated behavior and attitudes increasingly throughout their lives as a familial discrimination. Limited function, myth

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and beliefs, lack of education, dependent, poor socioeconomic and ­marginalized position are some reasons behind it. The intensity of such discrimination is higher among various marginalized groups under disability diversity like indigenous, Dalit, and Muslim girls and women with disabilities due to the multiple identity they have which gets intersected in different forms. In addition, the discourse on family as a private space remained institutionalized and unarticulated that shaped as a culture in the mind-set among peoples. The study reflects familial discrimination as one of the usual type of pervasive activity that hinders girl and women with disabilities to effectively enjoy their rights and receive support and quality life from their family members. Familial discrimination is very complex and subtle to define specially at the private sphere, and most practices are unknown and hidden most often. Most of the times the girls and women with disabilities do not realize and feel that she is discriminated in several forms and the perpetrators; most often do not feel and realize that their behavior is unequal treatment. This is realized only when the level of such attitudes, behavior, and treatment accumulates and has negative consequences in the lives of girl and women with disabilities. Such consequences in most families are simply taken as “things happening to many peoples lives,” “natural and obvious,” and “having no choice” and are often not taken sincerely as it should have. Girls and women with disabilities rely on their “fate” or “no option and alternatives,” and they endure and remain in “silence.” The issue of social protection, family respect, and honor including thoughts like “what will happen after sharing” made silent for most women with disabilities. They accepted the reality of society how disability has shaped each individual minds and behaviors including their family. Family is family and we have no choice nor way, going beyond family is again leading the worst life than we are and people will call me mentally sick if I speak against my family and their and family perception will demean as they areso it is good to be silence and accept what we are for all of us……………

Participants argue that familial discrimination has been shaped as a philosophy and it is intense that nurtures the public spheres actions and perception toward girl and women with disabilities. The nature

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of familial discrimination is distinct than the case of violence. Unlike violence, it is very subtle and difficult to collect evidences, fact and figures, and even file a case against family members. Most often such cases remain inside the home and if it is made public then the members of society make comprise with parent, family members, or woman with disabilities. It is difficult to come up and change such attitudes in one time with a concrete decision and perspectives which mean discourse on family, family-society role with understanding their challenges and limitation has to frame by context, system and behavior. We assume that there will be discussion on family, I am sharing what my father did to me since my early childhood, he abuses and harasses me quite often and I grew up in that whole atmosphere so I didn’t want to enjoy my time with my family. It was hard time to understand it as usual and I am sharing because in a hope that sisters like me will not experience as I am experiencing today…

The existing legal and policy environment in Nepal is generally not supportive for women with disabilities because women with disabilities are lumped into a single domain of women. The intersectional lens that a woman faces as a barrier enjoying her rights has not been addressed. The laws and policies fail to realize and acknowledge the need and support for women with disabilities. There are existing laws and policies that discriminate women with disabilities in different aspects like marriage, culture, social, economic, health, education, family, sexual violence, and sexual harassment. Some examples, the Civil Code (Muluki Ain) 2017 and Domestic violence Crime and Punishment Act 2009, Domestic Violence (Offence and Punishment) Rules (2010), adequately account discriminations and violence faced by girls and women with disabilities. Section 3 in the Civil Code 2017 on family laws article 71.2 nullifies any marriage if anyone is fraud married to someone who cannot speak or hear at all, blind, or is with severe intellectual disability that puts women with disability at the risk of being subjugate to fraud, thus discriminates them. The existing laws for women have challenges in implementation, and the laws are made without enough study and rigorous with in-depth knowledge. There are still discriminatory

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provisions in citizenship, property, participation, discrimination and violence, child marriage, marriage employment, sexual and reproductive rights and rights to found family, definition of family, gender-related stereotypes words, and others in Nepal (Dhungana 2018). At the international level, the government has ratified a number of international conventions and treaties in theory to promote gender equality for all women, and, in particular, ensure that the rights of women with disabilities are promoted, protected, and respected like the Convention on the Elimination of Discrimination against Women (1991), the UN Convention on the Rights of Persons with Disabilities (2010), and others. However, these international instruments have to reflect on the ground at homes to all women with affirmative action. Those rights can only be realized if girls and women with disabilities are being fully ensured respect, love, and care with quality time for addressing their needs and challenges they face in their daily lives and ensuring their participation to family lives (UNCRPD Concluding Observation 2018) in a place where they feel the most safe and from the person whom they are so close.

Recommendations Realization that girls and women with disabilities are unable to participate fully in family and access the services they require which they are entitled is crucial. Girls and women with disabilities need many opportunities to get involved in the family activities as this gives them a full range of experiences and chance to be treated as an equal member of society. Breaking down the traditional silos of family by women with disabilities as agents of their own voice for their rights, sharing their challenges by building synergy among family members, relatives, caretaker/assistant, workplace, and community at large is primary. Women with disabilities, self-respect, and social inclusion inside the family are essential. Their voices to express their feelings and challenges and their rights to enjoy with their families and peer groups should be valued in a suitable environment. By deconstructing the unarticulated family values, by opening avenues through research, on family

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experience, personal experiences of women from different class, background, ethnicity, education, family, work, and others circumstances are basic. Research, not only as a means of evidence-based policy making but also as a way to raise awareness among family members and society, is vital. Comprehensive framework to address the gap in the existing policies to connect both private and public sphere incorporating intersectional approach contributing to the unique experience each individual face should be framed. Similarly, enabling environment with affirmative actions from government and other stakeholders to strengthen family, family value system with education, acceptance, skills and knowledge for girl and women with disabilities as a contributor of society is fundamental. To make it happen, better communication and better realization in any setting is central to better outcomes. Family strength for girls and women with disabilities continues to be in the forefront, let’s take next steps and work together to form a constructive, realistic, and real time for a change first from us as family members to make better home and better society for all of us.

References Abu Habib, L. (1997). Gender and Disability: Women Experiences in the Middle East. London: Oxfam. Alwis, R. (2009). Mining the Intersections: Advancing the Rights of Women and Children with Disabilities Within an Interrelated Web of Human Rights. Pacific Rim Law & Policy Journal Association, 18, 293. Bond, J. E. (2003). International Intersectionality: Theoretical and Pragmatic Exploration of Women’s International Human Rights Violations. Washington & Lee Public Legal Studies Research Paper Series. Emory Law Journal, 52, 71. Central Bureau of Statistics. (2011). National Population and Housing Census, Volume 2. Kathmandu, Nepal: National Planning Commission Secretariat, Government of Nepal. Charlesworth, H. (1998). The Public/Private Distinction and the Right to Development in International Law. Australian Year Book of International Law 9; 190.

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Cooker, M. (1999, September 17). Discriminatory Language, Talking Disability and the Quiet Revolution in Language Change. Presented at Annual Conference of the British Association for applied Linguistic, University of Edinburg. Committee on CRPD. (2018). Concluding Observation in Relation to the Initial Report of Nepal. CRPD/C/NPL/CO/1 found at website http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download. aspx?symbolnoCRPD%2fC%2fNPL%2fCO%2f1&Lang=en. Crow, L. (2003, January 15). Invisible and Centre Stage: A Disabled Woman’s Perspective on Maternity Services. Paper Presented to the Department of Health Open Forum Event of the Children’s National Service Framework (Maternity Module). DFID/World Bank: Unequal Citizens. (2006). Gender, Caste and Ethnic Exclusion in Nepal. Summary Report. Kathmandu, Nepal: DFID/World Bank. Dion, K. L., & Earn, B. M. (1975). The Phenomenology of Being a Target of Prejudice. Journal of Personality and Social Psychology, 32, 944–950. Discrimination Generated by the Intersections of Gender and Disabilities. (2013). Directorate General for External Policies: Policy Department Citizens Rights and Constitutional Department European Parliament. Dhungana, B. M. (2018, March 9). Access to Justice to Women with Disabilities. Paper Presented at Interaction Program on Access to Justice to Women with Disabilities, NDWA, Kathmandu, Nepal. Eide, A. H., Neupane, S., & Hem, K. G. (2016). The National Survey on Living Condition Among Individuals with Disabilities in Nepal. SINTEF A27656, Technology and Society, Departmet of Health Research, 37. Fine, M., & Asch, A. (Eds.). (1998). Women with Disabilities: Essay in Psychology, Culture and Politics. Philadelphia, PA: Temple University Press. Franklin, A. P. (1972). Impact of Disability on Family Structure Security. https:// www.ssa.gov/policy/docs/ssb/v40n5/v40n5p3.pdf. Gaertner, S. L., & Dovidio, J. F. (Eds.). (1986). Prejudice, Discourse and Racism. London, FL: Academic Press. Ghai, A. (2003). (Dis)Embodied Form Issues of Disabled Women. New Delhi: HarAnand Publication. Ghimire, J. (2010). Jeewan Kaanda ki Phool (Life, Whether a Thorn or a Flower). Kathmandu, Nepal: Nepali Literature Forum. Gurung, P. (2013a. July 15–17). Giving Voice to Voiceless: Familial Discrimination Against Women with Disabilities. Paper Presented in an

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International Conference on Women Studies, International Centre for Research and Development, Colombo, Srilanka. Gurung, P. (2013b). A Study on Familial Discrimination Against Women with Disabilidoubtties and Their Response. Social Inclusion Research Fund, SNV, Nepal. Gurung, P. (2015). Discrimination and Exclusion of Women with Disabilities in Nepal. Disabilities Studies Journal, DRCN, 1(1), 75–91. Kathmandu, Nepal. Gurung, P. (2016). Implementation Status of Disability Related Plan and Policies in Nepal, Compendium of Policies Review Report: A Summary. Government of Nepal, National Planning Commission. Hans, A., & Patri, A. (Eds.). (2006). Women, Disability and Identity. New Delhi: Sage. Johnstone, R. L. (2006). Feminist Influences on United Nations Human Rights Treaty Bodies, 28, 148–185. Kamal, L. (2011, September 7). Are You Need Is Law. The Kathmandu Post. http://www.ekantipur.com/the-kathmandu-post/2011/09/06/oped/all-youneed-is-law/225999.html. Kishor, S. (2005). The Heavy Burden of a Silent Courge: Domestic Violence. Revista Panamericana de Salud Pública, 17(2), 77–78. Maharjan, M. R. (2015). Studies on Disability in Nepal: An Overview. Disabilities Studies Journal, DRCN, 1(1). Kathmandu, Nepal. Malacredia, C. (2009). Performing Motherhood in a Disablist World: Dilemmas of Motherhood, Femininity and Disability. International Journal of Qualitative Studies in Education, 22(1), 99–117. Morris, J. (1992), cited in Thomas, C. (1997). The Baby and the Bath Water: Disabled Women and Motherhood in Social Context. Sociology of Health & Illness, 19(5), 622–643. National Disabled Women Association. (2008). Social Inclusion, Livelihood and Violence Against Women, Nepal. Kathmandu, Nepal: Action Aid Nepal and Tribhuwan University. Neville-Jan, A. (2004). Selling Your Soul to the Devil: An Autoethnography of Pain, Pleasure and the Quest for a Child. Disability & Society, 19(2), 113–127. New Era, UNICEF, & National Planning Commission. (2001). A Situation on Analysis of Disability in Nepal. HMG/Nepal, 114–133. New South Wales Department for Women. (1996). Heroines of Fortitude: The Experiences of Women in a Court as Victims of Sexual Assault. Wooloomooloo: New South Wales Department for Women.

16  Breaking Down Silos: Women with Disabilities …     343

Norwegian Agency for Development Cooperation. (2014). Mainstreaming Disability in the New Development Paradigm: Evaluation of Norwegian Support to Promote the Rights of Persons with Disabilities—Nepal Country Study. Norway: NORAD. Nosek, M., et  al. (1997). Abuse of Women with Disabilities: Policy Implications. Journal of Disability Political Studies, 8, 157–158. Panthi, M. R. (2004). The Disability Situation in Nepal. Alliance for Equality of Blind Canadains. http://www.blindcanadians.ca/publications/cbm/22/ disability-situation-nepal. Prilleltensky, O. (2003). A Ramp to Motherhood: The Experiences of Mothers with Physical Disabilities. Sexuality and Disability, 21(1), 21–47. Puri, M., Misra, G., & Hawkes, S. (2015). Hidden Voices: Prevalence and Risk Factors for Violence Against Women with Disabilities in Nepal. BMC Public Health, 15, 261. https://doi.org/10.1186/s12889-015-1610-z. Ridgeway, C. L., & Correll, S. J. (2004). Motherhood as a Status Characteristic. Journal of Sociology Issues, 60(4), 683–700. Rolls, C., & Chamberlain, M. (2004). From East to West: Nepalese Women’s Experiences. International Nursing Review, 5(1), 176–184. Hämtad fråndatabasen CINAHL. Salthouse, S., & Frohmader, C. (2004, September 15–17). ‘Double the Odds’— Domestic Violence and Women with Disabilities. Paper Presented in Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne. Shakespeare, T. (2006). Disability Rights and Wrongs. London: Routledge. Seidman, I. (2006). Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences (3rd ed.). New York and London: Teachers College, Columbia University. Shadow Report. (2011). On the Fourth and Fifth Periodic Report of the Government of Nepal on CEDAW. FWLD. Shanmugasundaram, S., O’Connor, M., & Sellick, K. (2010). Culturally Competent Care at the End of Life: A Hindu Perspective. End of Life Care Journal, 4(1), 26–30. Steward, W. F. R. (1979). The Sexual Side of Handicapped. Cambridge, MA: Woodhead Faulkner. Sullivan, D. (1995). The Public/Private Distinction in International Human Rights Law. In J. Peters & A. Wolper (Eds.), Women’s Rights, Human Rights: International Feminist Perspectives (pp. 126–134). New York: Routledge. Thiara, R. K., Hague, G., & Mullender, A. (2011). Losing Out on Both Counts: Disabled Women and Domestic Violence. Disability & Society, 26(6), 757–771.

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Thomas, C. (1999). Female Forms. Buckingham: Open University Press. Thomas, C., & Curtis, P. (1997). Having a Baby: Some Disabled Women’s Reproductive Experiences. Midwifery, 13, 202–209. Wendell, S. (1997). Towards a Feminist Theory of Disability. In I. L. Davis (Ed.), The Disability Studies Reader. London: Routledge. World Health Organization and the World Bank. (2011). World Report on Disability. Geneva: WHO. Woman with Disabilities Australia (WWDA). (1998–1999). Annual Report. Available at www.wwwda.org.au/annrep99.htm.

Part II Identifying Enablers, Barriers and Challenges in Inclusive Education

17 An Ethnographic Research on Inclusive Education in Colombia: Lessons Learned from Two School Visits Leda Kamenopoulou

Introduction: Background of the Research In this chapter, I present findings from two school visits that I conducted as part of an ethnographic research on inclusive education in Colombia, South America. Inclusive education concerns the participation in education of all, but especially of those children and young people who are the most vulnerable, i.e., those who are either excluded or at risk for exclusion from the education system, because of poverty, disability, gender, ethnicity, race, religion, etc. (Kamenopoulou and Dukpa 2017). The aim of my research was to gather the voices of a range of local professionals in relation to the main challenges and opportunities for inclusive education within their context. I was particularly interested to explore (a) inclusive education in practice, (b) teacher preparation for inclusive education, and (c) local understanding of inclusive education. The overall findings that emerged from L. Kamenopoulou (*)  Senior Lecturer in Special and Inclusive Education, University of Roehampton, London, UK e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_17

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the analysis of the interviews and the site visits are reported elsewhere (see, Kamenopoulou 2018a). Here, I will focus on inclusive education in practice, and I will present two very different schools that I experienced in Colombia, from my perspective as a researcher and educator coming from the Global North. In particular, I have chosen to describe two very different settings that I visited, namely one state school in an extremely deprived area of the capital and one elite private school. I will finish by discussing current possibilities and challenges in relation to the inclusion of children with Special Educational Needs/Disabilities (SEN/D) in education in Colombia. I have been engaged in academic work centered on different aspects of inclusive education within a range of contexts for almost 15 years, out of which the latter 6 have seen me focusing almost entirely and much more systematically on the status and progress of inclusive education within those countries that are called “developing” or “Global South” countries (see Kamenopoulou et al. 2015; Kamenopoulou and Dukpa 2017; Kamenopoulou 2018b). After several years of researching the academic literature pertinent to the topic, it became clear to me that (a) there is extremely limited research on inclusive education in many of these contexts and (b) the limited research suggests that these countries have many challenges to overcome before they can achieve full realization of inclusive education. In relation to the former, Grech (2013) argues that Global North-produced literature on disability has neglected the Global South despite the fact that the majority of disabled people live there (WHO 2011). In relation to the latter, during the past three decades, an increasing number of Global South countries have embraced inclusive education at the level of policy and have committed to working toward internationally agreed goals like the Sustainable Development Goals (UN 2015). However, at the same time these contexts have to battle with many problems such as poverty, social inequality, corruption, war, and conflict, and under these circumstances inclusive education is not easily achieved (Stubbs 2008). Because of the dearth of literature on inclusive education in many of these contexts and because of their very particular characteristics, more research is warranted to explore context-specific variables that shape the experiences of children with disabilities as well as other marginalized children within school and society.

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Colombia is a rather unique South American country of remarkable size and diversity. To put it in context, Colombia is about 10 times the size of Greece and more than 2 times the size of France. The mountain range of the Andes runs through it creating two separate, vast valleys. It is also characterized by rich cultural and ethnic diversity, and although everyone speaks the Spanish language, there are many indigenous languages that have survived as well as many different customs and traditions. Moreover, the Colombian social context is very complex, due to the internal armed conflict that has lasted for over 50 years, the paramilitary and guerrilla violence, the illegal drug trade, and the history of deep social and economical inequalities. As a result, in Colombian schools some unique groups of children and young people can be found. For example, internally displaced children whose number in Colombia is the largest worldwide (Global Internal Displacement Database, n.d.) are one example of the very special populations and needs that exist within this context. Another quite unique group are child soldiers (see Paez 2003). In reality, as Moreno and Gabel (2008) point out, the complexity of factors that may affect learning outcomes within the particular Colombian context and the interactions of variables like social class, economic status, race, gender, and disability, can make the realization of inclusive education very challenging. In Colombia, inclusive education has been a legal right since 1994 (Ley 115, 1994). Furthermore, in 2011 the country ratified the Convention on Rights of Persons with Disabilities (UN 2006), thus embracing inclusive education in theory. However, evidence shows that the participation of all children in education is far from a reality in this context and that certain groups of children remain excluded from the education system (Beltrán-Villamizar et al. 2015). One such group are children with SEN/D, a staggering 43% of which is currently out of school, according to the National Department of Statistics of Colombia (DANE 2010). Quite like other Global South contexts, there is a dearth of systematic research on this topic and very little has been written about inclusive education in Colombia. After being able to identify only a handful of studies relevant to the subject, I decided to conduct a qualitative research study in order to explore in more detail the status of inclusive education in this country as well as the current possibilities and

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challenges for this context. During fieldwork, I visited local universities and schools in the capital city of Bogotá, and I conducted a total of 35 in-depth qualitative interviews with a range of professionals, including teachers, Head teachers, academics, students, and teacher trainers. All interviews and communications took place in the local Spanish language, and I have only translated selected quotations for the sake of the readers. As I already mentioned, the foci of my research were: (a) inclusive education in practice, (b) teacher preparation for inclusive education, and (c) local understanding of inclusive education, and with a view to investigate the current challenges and opportunities for inclusive education in this context. In this chapter, I describe and reflect on two of the research settings that I visited, based on my ethnographic notes and my discussions with the school Head teachers. I will call these School One and School Two, and I will describe them in terms of the size and nature of their population, the staff expertise, the organization of provision for SEN/D, and the use of inclusive strategies. I will close with a discussion of current possibilities and challenges for inclusive education in Colombia on the basis of the differences and similarities of these two schools.

School One School One was in an area of Bogotá, right in the middle of the city. My link person in Colombia was to accompany me in order to introduce me to the Head and other teachers, whom I would interview. When she gave me the address of the school, she told me that we were to meet the Head at 7 a.m., and she made a point of warning me that I should not wait outside in the street in case I arrived earlier than our agreed 6.45 a.m. I was to go inside the school and wait. I was taken aback by this warning, because I have visited Bogotá many times in the past, and I consider it a very safe city. My companion explained to me that the area had quite a bad reputation for violence and crime. As I learned later during my discussions with the school staff, the population of the school included mainly children of people who worked and lived in the same area like the craftsmen and women from the two

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adjacent open markets, and many indigenous people or others who had been displaced from rural areas and forced to end up in the capital. This is because the area offered these people the possibility to rent cheap accommodation for short periods of time. Colombian people told me that they considered it a “no go” area during the night, because it was also a hot spot for prostitution and drug dealing. So there I was, one crisp April morning feeling quite aware that I was preparing for a school visit that was looking like it was going to be unlike any other. I am saying that, because as a student and researcher, I have carried out hundreds of school visits, but I had never been told before that it was not safe to hang around in the area outside a school. The Head put it very plainly in the first two minutes of our one to one interview: We are in one of the most vulnerable zones of Bogotá, one of the most vulnerable zones. I could tell you that this is the most vulnerable zone that exists in this city. For a very fundamental reason: because unlike other world capitals, in this locality, in this moment, in less than 4 blocks from where you are sitting, is the biggest red light zone of the city. (Head of School One)

The unique nature of the population of the school, which included a lot of children of families, who were victims of displacement and violence, as well as children of mothers who were sexual workers, was in contrast with the overall school environment which seemed pretty standard according to my observation notes: The school was reasonably well resourced with an IT room, a library, two laboratories, one for physics and one for chemistry, a sensory room, and a games room. However, the sheer volume of the school’s population took me aback: We have 2 shifts; we cater for two big populations. We start at 6.20 am. At 12.20 pm 500 kids finish school. At 12.20 pm 500 students start and they go at 6.30 pm. I have a group of teachers in the morning and at 12.30 pm another group arrives. (Head of School One)

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The age range was from 5 years (in grade 0) to 22 years (in grade 11). Within this school of more than 1000 pupils, an impressive 240 had SEN/D, out of which 86 were in the autistic spectrum. The majority of pupils graduated between 15 and 17 years old, and children with SEN/D usually graduated later, i.e., between 18 and 22 years old. When I asked the Head to give me a profile of SEN/D children enrolled in the school, he gave me the following broad description of the school’s SEN/D population: We have children in the autistic spectrum, [we have] everything, children with very profound difficulties, who for example are not verbal but are learning (how to be verbal); we have children with cognitive difficulties; we have children of Afro-Caribbean descent; indigenous children, children of sexual workers; children of families who live in the streets; children of people who work in the food markets, because we are in between two street markets.

This is quite a diverse group of children who would benefit from support and SEN/D provision; hence, it is natural to wonder how a school of such a remarkable size managed to address so many and diverse needs. The maximum class size limit according to Colombian law is 40, but I was told that it is common to find classes with anything between 50 and 60 pupils. Taking the school’s vision and mission statement as a starting point, it declared that: “Children with SEN have to be understood as diverse and we want them to be in this school because we do it (organise provision) in this way (as diverse). ” This commitment to inclusive education I was told had made the school popular even with families who lived outside of Bogotá or wealthy families who could afford to place their children in an elite private school, but who instead chose to send their children to School One. The Head told me that admissions had to be frozen 2 years before the time of the research because children with SEN/D comprised a 14% of the school’s population, which is over the recommended 10%. We have children with autism or with cognitive deficit who decide to study in this school, but who are children of people living outside of this

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local authority, […] children of parents who work in the University, who could very well afford to pay a school for their children costing 1000 dollars per month, but here they pay absolutely nothing. But they study in this school because they believe in the social process of this school.

In terms of how provision for SEN/D was organized, I will start from the adult-pupil ratio. Each school that is of an academic character as opposed to a technical one in Colombia can request 1.36 t­eachers per class, while each pupil with SEN/D counts as three pupils. For the whole population of 1100 pupils, there were 60 members of teaching staff. However, because this school defined itself as inclusive and accepted pupils with SEN/D, it had the advantage that it could request a “support teacher” (docente de apoyo) for every 30 pupils. As a result, the school deployed 14 support teachers at the time of the research who were additional to the 60 members of teaching staff. These support teachers were not assigned to a class and could be of different relevant professional backgrounds, e.g. clinical or educational psychologists or special needs teachers, and they were responsible for supporting curricular adaptations in different and flexible ways as the Head explained: What the psychologist does is to come and help [the teacher] design a pedagogic strategy that teaches the same thing with differentiated instruction and expecting a differentiated learning that will be assessed in a differentiated way.

Moreover, this group of support teachers met every 15 days to exchange ideas and pedagogical strategies, and the meeting was led by the Head of the School. In addition, at least one support teacher was always present in subject teams’ meetings, and they furthermore took part in the pupils’ termly evaluation during which process they discussed with the class teacher which strategies had been successful or unsuccessful with specific children. The clinical and educational psychologists were also responsible for cases of children referred to them by the class teachers for assessment and for screening all children at school entry, even if they already had the compulsory SEN/D statements (diagnósticos) issued separately by their health service provider.

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Support teachers did not do support by withdrawal as a general rule, and this did happen nevertheless on certain occasions: We do time out in this school only when a child starts being in any way disruptive, especially those children with autism. (Head of School One) On some occasions we have had to do it. We have had occasions when the child themselves tell the support teacher: ‘I want to go and work with you on a different activity’. (Head of School One)

To sum up, despite the challenging range of needs of School One’s population and its limited state-funded budget, it had chosen to adopt an inclusive approach, based on a well-organized system of identifying and supporting SEN/D. Within this context, SEN/D were addressed mainly within the classroom, and support by withdrawal was rarely used and only in the case of disruptive behavior. The organization of provision for SEN/D was overseen by the Head of the School, and curricular adaptations and other differentiation strategies necessary were the responsibility of support staff in collaboration with the classroom teachers.

School Two School Two was a private school that opened its gates 23 years ago, and it was in a lower-middle-class area of Bogotá situated at the north and very close to some of the wealthiest parts of the capital. The school was not serving the local community though, but it accepted students from all localities, as long as they could afford the expensive fees. Classes that the children had the opportunity to attend there included theater, arts, Thai Chi, yoga, skating, music, chess, English, and those who needed extra support could also benefit from individual and group support schemes, a multi-sensory and an IT room, and other types of pedagogical strategies, as I will explain shortly.

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The total number of students enrolled at the time of research was 300, out of whom around 80 had SEN/D and another 15 “exceptional talent,” which I see as the equivalent of the term “gifted and talented” that we use in the UK and is also considered as another type of SEN. This made SEN/D children nearly one-third of the total school population. Interestingly, not only was the school evidently a very popular choice of placement for SEN/D children, but also there was a huge range of types of SEN/D, including Cerebral Palsy, Downs, Williams, and other syndromes, ASD, ADHD, and Cognitive Deficits. Moreover, an astonishing 85 teachers and administrative staff were working at the school at the time of research: Which is the biggest strength of this school? Let’s just say that in order to be able to work the way we work, it is because there are many teachers. (Head of School Two)

Indeed, the way learning took place in this school was much unlike any other I have ever visited, and this also applied to its provision for SEN/D. Each class had a maximum of 20 students, and the teaching staff had a range of different backgrounds, e.g. chemical engineers, ­language teachers, and arts teachers. The school did not employ ­special needs teachers at all. The school used a unique method, which they called “self directed learning” (autoaprendizaje) and was based on the simple idea that every child can require more or less time to meet their learning goals. The age range of the pupils was from preschool (age 5) to secondary (age 16), but many bright students managed to complete secondary school by 13 or 14 years, thanks to this flexible approach to learning, described by the Head as follows: To be clear with you, here everything is flexible. This means it is not like usual when children have to learn the same, this unit, this week, no. Every child has in some way their own process. And one child can complete 2 school years earlier or later. Here they can graduate before or after (the usual age), or a lot before or a lot after, every child has their own process.

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When children reached the secondary school level, they had ­certain number of hours per week on what they called taller autodidáctico (TAO), which is self-directed learning and during these hours the teacher was merely present in the room for answering any queries, and the room functioned as a library. The children choose the subjects they wanted to undertake as TAO, and they had to organize their learning and to meet their learning outcomes by themselves, all of this at their own pace. When they were ready, they requested an exam that would assess if they had met the learning outcomes. This approach was described to me as an “educational innovation,” and unsurprisingly this radical school was popular with a lot of middle class, wealthy, and well-educated Colombian parents. What is more interesting is that as a result of this flexible approach, organization of SEN/D provision in this school was exactly the same as organization of provision for all pupils. This is because this total flexibility was reflected not only on teaching and learning methods, but also and very crucially on assessment and evaluation methods used for all pupils. When a child felt that they were ready to take an exam on one of their chosen topics of self-directed learning, they gave notice to the school for the exam to take place on the following day. School staff different from the class teacher who were especially deployed for this role and were called “analysts” would be responsible for marking the exam paper on the same day and for sending the results to the pupil by the following morning. I was particularly impressed by how well organized the school was in letting the analysts know if a child had SEN/D: So here for example (showing me a marked exam paper), it says FL, it is a flexible exam, which is much easier than others. Can you see that it is the same topic as for this child? But it is flexible, so for example we have here this one with ‘D’, that signifies a child with lack of attention so the person who is marking knows why a child did not finish. (Head of School Two)

Within this tailored approach, children with SEN/D did not do anything different from others, and all class teachers were expected to address SEN/D as part of their daily practice. It was stressed to me

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many times that the work they did with the children was not therapeutic but pedagogical: Teachers have assigned in their workload pedagogical support for x number of students. From the beginning we give them a list (of pupils) with whom they have to work. (Head of School Two)

The high volume of work that this flexible approach can generate for teachers was made possible by the small class sizes: I tell new teachers, you have 20 pupils, but this is because you are responsible for 20, not for a group of 20, but for 20 different people. (Head of School Two)

I also found interesting and worthy of mention the fact that classroom teachers sometimes benefited from the support of some of the older peers, who are required by Colombian law to complete some hours of social service when they are between 14 and 17 years, as the Head explained: Children in the eleventh grade in Colombia, tenth and eleventh, they do what we call social service. This is 80 hours that they have to give to institutions or helping as stewards. The children of our school do this here. How? They work with children with needs depending on the strength of each (older) student.

However, at the same time as being expected to address the needs of all SEN/D children in their classrooms, it is worthwhile to emphasize that all teachers were given support in the form of a full week’s induction and frequent training sessions offered by specialists in areas of health: We offer an induction (to all new members of staff), and of course we train them. Here we offer a lot of on-going training with doctors, therapists, phono-audiologists, and other health professionals. (Head of School Two)

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The school placed a lot of importance on all teachers attending these training sessions because they had to be prepared in case they had to work with SEN/D children: Even if I do or don’t have in my class a child with Down’s syndrome, in any case everybody prepares because at some point this child will come to their class. So if a psychologist offers us a workshop on the sexual development of children with Down’s syndrome, for example this topic interests all of us […] these are things that are going to be useful for all of us as educators. (Head of School Two)

In terms of inclusive strategies, there was a “coordinator of pedagogical support,” who was a phono-audiologist, who advised and supported teachers, as well as a psychologist, who, for example, led staff induction sessions and further professional development and training. In terms of inclusive strategies in class, a lot of emphasis was placed on time and the idea of providing extra time to each pupil with SEN/D to complete tasks and therefore allowing them to achieve relevant learning outcomes at their own pace. Moreover, the school followed a flexible approach to studying from home, in the case of children who were dealing with hospital appointments and on-going health issues: Look, children with Cerebral Palsy here, they have operations every now and then as they grow up, mainly for their legs. Here when children have to go through this, the route, that is school transport, goes, picks up the books, the teacher sends the homework, the child does it at their home, [the bus driver] goes, picks up, simply put, the school bus driver does not pick up the child but their school bag and they come back, and the teachers also do home visits. (Head of School Two)

In summary, School Two adopted an approach to teaching and learning that was tailored to all pupils’ different needs. Self-directed learning and differentiated instruction and assessment also formed a central part of the school’s approach. Within this context, SEN/D were not seen by teachers as something different or special, but as something falling within the spectrum of individual differences that all children have.

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This fully inclusive approach was only made possible with frequent training on SEN/D and inclusive topics for teachers and with small class sizes. Sadly, all this would not have been possible at all without the expensive fees that only wealthy Colombian families could afford.

Reflections: Challenges and Opportunities for Inclusive Education in Colombia When compared to each other, these two quite unique schools come across as very different in many ways, but they also share much in common, and I argue that those similarities and differences can provide a good indication of key challenges and opportunities for inclusive education in today’s Colombian schools. On the one hand, it clearly emerged that both school Heads had a common passion for inclusion and a belief in differentiation as the key to the successful inclusion of children with SEN/D. It has been demonstrated that school leaders’ commitment to inclusive education is a crucial factor enabling the implementation of inclusive practices and contributing to an overall inclusive school ethos (Ainscow and Sandill 2010). Both schools moreover had a well-organized system for identifying and addressing SEN/D and employed many professionals other than teachers, who were responsible for different aspects of SEN/D provision such as psychologists and various health professionals. However, it is worthwhile to stress that School Two did not employ any special needs teachers, that is, teachers whose undergraduate training is exclusively on SEN/D and that their way of thinking about inclusive education was far removed from anything to do with special education. This approach echoes the arguments against the need for special pedagogies when teaching children with SEN/D proposed by Norwich and Lewis (2007) and for the importance of a continuum of inclusive approaches that can benefit all pupils. It is also aligned with the more recent conceptualization of inclusive education as concerning the needs of all pupils, not just of those with SEN/D (Kamenopoulou 2018b). On the other hand, it is fair to point out that the schools differed significantly in terms of how much room they had for flexibility when addressing different pupils’ needs. More specifically, the curriculum and

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the learning processes in School Two were completely learner-centered: The range of subjects offered was truly impressive, as well as the way in which they fully embraced inclusion by applying self-directed learning, and differentiated instruction and assessment across the board. This would simply not have been an option for School One that at the same time had to deal with larger class sizes and much more limited resources. It is clear from the data that School One followed a truly inclusive and well-organized approach, but at the same time, they were challenged in terms of personnel, adult-pupil ratio, and lack of time. Teachers in the private school had the advantage of small class sizes and excellent on-going support as well as access to a lot of relevant training. Given this, it does seem reasonable to argue that School Two’s impressively flexible approach to teaching and learning, which consisted of differentiation applied to all pupils without discrimination, would be the most beneficial for pupils with SEN/D. This brings to the fore issues relating to the cost of organizing provision and resources for SEN/D in schools and also highlights the powerful role that the social, economic and education status of parents can play in shaping the educational experiences and outcomes of SEN/D children in Colombia. I argue that one of the challenges that this context currently faces in the realization of inclusion is the simple fact that the life chances of children with SEN/D in Colombia can be dramatically different depending on variables like the social class, the economic status, and the educational background of their parents. I have written about the role of context-specific factors like the inequalities and the marginalization of people with SEN/D more extensively in a recent edited collection of research on disability and inclusive education in countries of the Global South (see Kamenopoulou 2018b). In specific relation to Colombia, it needs to be noted that the education system relies heavily on private institutions, a status quo that is argued to “simply reproduce the social structure” and to block any chances for equality of opportunity (Patrinos 1990, p. 165). Uribe et al. (2006) in their article support this view and highlight some significant differences in quality between the public and private sectors in Colombia. Despite their differences, however, my conclusion based on my ­findings is that in both schools, inclusion was central in the agenda and was taken seriously. I found examples of good practice and evidence of successful inclusive strategies in both schools. This was also supported

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by the fact that both schools were extremely popular with parents of children with SEN/D, due to their successful inclusive approaches and overall inclusive ethos. This serves to show that it is possible, even for normal state schools in Colombia like School One—that have to deal with high student numbers and a range of vulnerable populations— to adopt an inclusive approach and to welcome all SEN/D children in their classrooms. The necessary prerequisites for this to happen according to my research seem to be: (a) commitment to inclusion on the part of the senior leadership team and (b) a well-organized system for addressing SEN/D and offering on-going support to teachers. The Head of School One stressed that many of the children who come to his school have been rejected by other schools that choose not to adopt an inclusive approach on the basis of the argument that they do not have the expertise or resources to address even the least profound SEN/D. The Head of School One completely disagreed with this view and argued that with some differentiation every school can address all needs. Having had the privilege of visiting a school like School One, in one of the most deprived areas of the capital of Colombia, I would argue that even in very complex circumstances, there is still every possibility that inclusive education is implemented with a high degree of success. Acknowledgements   This research was part funded by a Santander Overseas Research Grant and the University of Roehampton provided funding for the transcriptions of the interviews. I am grateful to Professor Marisol Moreno Angarita for her warm hospitality during my fieldwork in Bogotá, as well as the invaluable support she provided before, during, and after data collection.

References Ainscow, M., & Sandill, A. (2010). Developing Inclusive Education Systems: The Role of Organisational Cultures and Leadership. International Journal of Inclusive Education, 14(4), 401–416. Beltrán-Villamizar, Y. I., Martínez-Fuentes, Y. L., & Vargas-Beltrán, A. S. (2015). El sistema educativo colombiano en el camino hacia la inclusión. Avances y retos [The Colombian Educational System on the Road to Inclusion. Developments and Challenges]. Educación y Educadores, 18(1), 62–75.

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Departamento National de Estadistica (DANE). (2010). Poblacion con registro para la localizacion y caracterizacion de las personas con discapacidad. Online. Available at www.dane.gov.co/index.php/poblacion-y-registros-vitales/discapacidad. Global Internal Displacement Database. (n.d.). Retrieved September 3, 2017, from Internal Displacement Monitoring Centre Website http://www.internal-displacement.org/global-figures. Grech, S. (2013). Disability, Childhood and Poverty: Critical Perspectives on Guatemala. In T. Curran & K. Runswick-Cole (Eds.), Disabled Children’s Childhood Studies: Critical Approaches in a Global Context (pp. 89–104). Basingstoke, UK: Palgrave Macmillan. Kamenopoulou, L. (2018a). Inclusive Education in the Global South: A Colombian Perspective: When You Look Towards the Past, You See Children with Disabilities, and if You Look Towards the Future, What You See Is Diverse Learners. Disability and the Global South, 5(1), 1192–1214. Kamenopoulou, L. (Ed.). (2018b). Inclusion and Disability in the Global South: Research from Belize, Bhutan, Malaysia and Philippines. London, UK: Palgrave Macmillan. Kamenopoulou, L., Buli-Holmberg, J., & Siska, J. (2015). An Exploration of Student Teachers’ Perspectives at the Start of a Post-graduate Study Programme on Inclusion and Special Needs Education. International Journal of Inclusive Education, 20(7), 743–755. Kamenopoulou, L., & Dukpa, D. (2017). Karma and Human Rights: Bhutanese Teachers’ Perspectives on Inclusion and Disability. International Journal of Inclusive Education, 22(3), 323–338. Ley 115 de. (1994, February 8). [Congreso de la Republica de Colombia]. Por la cual se expide la ley general de la Educación. Moreno Angarita, M., & Gabel, S. L. (2008). Politics, Inclusion and Disabled Children: The Colombian Context. In S. L. Gabel & S. Danforth (Eds.), Disability & the Politics of Education: An International Reader (pp. 225– 236). New York: Peter Lang. Norwich, B., & Lewis, A. (2007). How Specialised Is Teaching Children with Disabilities and Difficulties? Journal of Curriculum Studies, 39(2), 127–150. Paez, E. (2003). Child Soldiers in Colombia, South America. Enabling Education Review, EENET. Online. Available at http://www.eenet.org.uk/ resources/eenet_newsletter/news7/page11.php. Patrinos, H. A. (1990). The Privatization of Higher Education in Colombia: Effects on Quality and Equity. Higher Education, 20(2), 161–173.

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Stubbs, S. (2008). Inclusive Education Where There Are Few Resources. Oslo: Atlas Aliance. United Nations. (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations. United Nations. (2015). Transforming Our World: The 2030 Agenda for Sustainable Development. New York: United Nations. Uribe, C., Murnane, R. J., Willett, J. B., & Somers, M. (2006). Expanding School Enrollment by Subsidizing Private Schools: Lessons from Bogotá. Comparative Education Review, 50(2), 241–277. World Health Organisation and World Bank. (2011). World Report on Disability. Geneva: WHO.

18 Toward Inclusive Education in Singapore Vasilis Strogilos and Levan Lim

Introduction Singapore, an island city-state, is an economically advanced country in Southeast Asia. Well-known for its meritocratic ideals and approach to governance, Singapore, has created a competitive education system in which, as Lim (2012) notes, students are differentiated into diverse pathways based mainly on academic abilities In the recent PISA (2016) results, Singapore topped in tests in education rankings for maths, literacy, and science reflecting the country’s strong commitment to ­educational achievement and excellence. An important discussion has also been noted in recent years on the improvement of the education V. Strogilos (*) · L. Lim  National Institute of Education, Nanyang Technological University, Singapore, Singapore e-mail: [email protected] V. Strogilos  Southampton Education School, University of Southampton, Southampton, UK © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_18

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of students with disabilities both in mainstream and special schools (e.g., Lim et al. 2014; Poon 2015; Yeo et al. 2011). Although there is a lack of special education legislation, educational, and social services for students and persons with disabilities are constantly progressing reflecting, as Poon et al. (2013) argue, the changing needs of Singapore as a developed nation. As in every other country in the world, the number of students with disabilities has increased in mainstream schools. As Lim (2016) indicates, 13,000 students with disabilities were attending mainstream schools in 2013, whereas their number has risen to 18,000 in 2015. Although it is difficult to explain this big increase, as Lim (2016) notes, the Ministry of Education (MOE) attributes the increasing number of students with disabilities in mainstream schools to the greater awareness of disability in Singapore. Singapore has a strong ideological support for inclusion and the development of an inclusive society in which values such as “social acceptance,” “social participation,” and “social harmony” are strongly featured in the political discourse. However, the primary service delivery model for the education of students with disabilities is “special education” in categorically oriented special schools, which, as Walker (2016) notes, it provides a separate school system for these students.

Inclusion and Inclusive Education The inclusion of students with disabilities in mainstream education has been prioritized in many education systems around the world as a requirement for social inclusion and cohesion. Many countries have signed the Salamanca Statement on Principles, Policy, and Practice in Special Needs Education and a Framework for Action (UNESCO 1994) and United Nations Convention on the Rights of Persons with Disabilities (UNCRPD 2006). In addition, many international organisations (e.g., European Agency for Special Needs and Inclusive Education, United Nations) have encouraged countries to move toward the development of inclusive education so as to improve the quality of education for all students. Even though inclusive policies for students and persons with disabilities have been established in many developed

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and developing countries (WHO and World Bank 2011), as Winzer and Mazurek (2014) note, there are still dozens of complex theoretical, methodological, and practical matters that are surrounding the implementation of the UNCRPD and its inclusive doctrine dissemination. Among these matters, one could note that the implementation of international policies on inclusive education is closely related to the different understandings of disability and the meaning of inclusion in different societies. In Stangvik’s (2014) words, global policies are heavily dependent on local values and, according to Strogilos and Avramidis’ (2017, p. 108) international review on inclusion and support services, “more research is needed in order to understand the cultural development of services in local contexts and the impact of the inclusion movement, as it has been conceptualized by international organizations”. Inclusion and inclusive education are complex issues which presuppose a philosophy of acceptance in which all people are valued and treated on equal terms (Strogilos and Avramidis 2017). More than that, inclusion is seen as a value to enhance school development through meaningful academic and social participation for all students. As such, it involves the development of practices which aims to reorganize schools as places of equal opportunity for all students to participate and learn. Thus, inclusive education involves changes from the policy and structural level to the level of schooling through changes to the curriculum and teaching strategies. As Booth and Ainscow (2011, p. 9) argue “Inclusion is about increasing participation for all children and adults. It is about supporting schools to become more responsive to the diversity of children’s backgrounds, interests, experience, knowledge and skills.” Thus, the focus is not merely on the improvement of the skills of the students with disabilities, but mainly on the improvement of teaching for all students.

Current Policy on Disability and Inclusion in Singapore Joining many other countries, Singapore signed the UNCRPD in 2012 and ratified it in 2013 in recognition of the need to further promote the human rights of its citizens with disabilities.

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Three important policy documents titled “1st Enabling Master plan 2007–2011,” “2nd Enabling Master plan 2012–2016,” and “3rd Enabling Master plan 2017–2020” by the National Council of Social Services (NCSS) describes Singapore’s vision of inclusion and the necessary actions to address the needs of persons with disabilities and their families. In particular, Enabling Master plan 2012–2016 (NCSS 2012, p. i) initiated four important guiding principles for policy to support the needs of persons with disabilities and their families: (i) to take an inclusive approach toward persons with disabilities; (ii) to recognize the autonomy and independence of persons with disabilities; (iii) to take an integrated approach with the support of the People, Public, and Private sectors; and (iv) to involve the community as a source of support and empower families to care. The committee of this enabling master plan was of the view that Singapore must undergo a reform in the governance of special education including the integration of students with disabilities in the Compulsory Education Act. It was only recently that the Minister of Education announced that education will become compulsory for all the students with disabilities in 2019 (Teng and Goy 2017). The 3rd Enabling Master plan (NCSS 2016, p. 11), while noting the progress that has been made in the lives of persons with disabilities, urged for more support and full participation for these persons and their families: “The Committee envisions Singapore to be a caring and inclusive society where persons with disabilities are empowered to achieve their fullest potential and participate fully as integral and contributing members of society.” This last enabling master plan undoubtedly promotes inclusion and provides several useful recommendations to enhance the quality of life of persons with disabilities and their families (e.g., to build the capacity and capability of disability service providers to enhance service quality; to synergies partnerships within and across health, education, and social service to better support persons with disabilities and their caregivers). Clearly, both enabling master plans aim to provide substantial and useful support for persons with disabilities and their families. However, the latest master plan seems to promote the idea of inclusion (as it has been conceptualized by international organizations) more clearly in comparison with the previous ones. In particular, the 3rd Enabling Master plan (NCSS 2016) refers to the changes that need to be implemented

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in the social processes to include the persons with disabilities and their families in a better alignment with the international inclusion movement and its emphasis on “participation restrictions” and “activity limitations” (WHO 2011). However, both master plans need to be supported by policies which will also promote the development of inclusive education for students with disabilities. This legislation is currently missing in the Singapore education policy threatening the implementation of an inclusive society as it has been envisioned in the two above master plans. To the contrary, of this inconsistency, several positive initiatives and developments have already been taken to enhance the education of students with disabilities in mainstream schools over the last fifteen years. Even though the education of students with disabilities in Singapore is not supported by inclusive legislation as in most developed countries (e.g., Department for Education and Skills [DfES] 2004; US Department of Education 2001), several initiatives are currently in place with regard to mainstream teachers’ training on special and inclusive education (see below). In March 2015, the MOE published a booklet titled “Bringing out the best in every child.” In this booklet, MOE provided an overview of the Singapore education landscape explaining how the available programs and curricula cater for all students. In particular, in this booklet, the MOE stated that “we have created a variegated education landscape with diverse pathways to provide our students with a variety of learning opportunities so as to best cater to their different interests, strengths, and learning needs” (MOE 2015, p. 5). Apparently, this is an important step in the introduction of inclusive education in mainstream schools since a variegated landscape can include the individual needs of all students including those with disabilities.

Research on Inclusion and Disability in Singapore In recent years, several changes have occurred in the education of students with disabilities worldwide due to the promotion of inclusive education. Even though there is an increasing number of students with

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mild disabilities educated in Singaporean mainstream schools, indicating the country’s willingness to move toward inclusion, as described above, inclusive education has not yet been formally featured in any official policy documents. Contrary to the absence of mandatory provision for inclusive education, many students with mild difficulties are educated in mainstream schools. However, we need to note that the widespread assumption for a child with disabilities to be able to join a mainstream school is his/her ability to cope with the mainstream curriculum. Apparently, such a view contradicts with the reorganization of the school system as a prerequisite to inclusion (Booth and Ainscow 2011) and aligns with an integrative approach to the education of students with disabilities in which the student needs to be “fixed” to fulfill the requirements of an inflexible school (Vislie 2003).

Attitudes Toward Disability and Inclusion A survey was commissioned in 2016 by the Lien Foundation (2016) with over 1000 participants in order to explore the views of Singaporeans toward students with disabilities. Among many important findings, the survey revealed that 71% of the respondents were supportive of the idea of inclusive education and half of them (52%) believed that children with and without disabilities would benefit equally from attending the same classroom. One in four parents reported that their children are friends with children with disabilities but only one in ten Singaporeans are sure about how to interact with children with special needs, and only 30% of them agreed that Singapore is an inclusive society when it comes to children with disabilities. Based on the above findings, Lien Foundation (2016) concluded that even though there is a broad-based support for inclusion, Singapore may not be as inclusive as its people think, and thus, new laws to enhance social support are needed. The few existing studies on inclusion in Singapore have mainly investigated the attitudes of mainstream teachers toward disability and inclusion providing evidence of neutral to negative feelings toward the education of students with disabilities in mainstream settings. For

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example, in Poon et al.’s (2016) survey, most secondary mainstream teachers reported neutral attitudes toward inclusion. Among the factors associated with the teachers’ attitudes as significant predictors of their willingness to include students with SEN in their classrooms were their confidence in teaching or supporting students with SEN, their level of training in special needs, and their experience in teaching these students. The authors concluded that Singaporean schools should focus on ways to develop the confidence of their personnel to support students with disabilities such as training in special needs and mentoring. In a similar survey conducted by Thaver and Lim (2014), pre-service mainstream teachers reported little or no knowledge and experience with disability, and generally negative attitudes toward the inclusion of students with disabilities. In addition, the participants indicated special schools as better places for the education of students with disabilities and they were not favorable to including students with physical disabilities, sensory impairment, learning disabilities, and behavioral problems in mainstream schools. The authors explained the negative attitudes of pre-service mainstream teachers on the history of limited participation of people with disabilities in the life of mainstream community. Positive and negative experiences relating to the inclusion of students with disabilities were also reported by mainstream teachers in Yeo et al.’s (2016) study. In their focus group interviews with 202 teachers in 41 primary mainstream schools, the teachers indicated more negative than positive experiences. Among the positive, experiences were the satisfaction with students’ progress and new learning for teachers, whereas stress from challenging behaviors and the instructional difficulties of catering adequately for diverse needs in the same classroom were reported as the most dominant negative ones. At the pre-school level, inclusive education in Singapore is very limited and according to Yeo et al.’s (2011, p. 153) findings, there are several barriers that teachers face to implementing inclusion initiatives. In their small-scale research study in a pre-school setting which included teachers, parents, and therapists, the authors identified several barriers to inclusion such as person-related hindrances, structural obstacles, gaps in program delivery, and limited specialized training and resources. However, what these authors also found was that teachers with a “can

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do” attitude provided the strongest support for inclusion. They argued that therapists can help teachers with thoughtful considerations on their practical classroom constraints and consequently enhance the development of positive attitudes toward the inclusion of students with disabilities. The above existing studies suggest that it is important to understand teachers’ views and experiences with implementing inclusive strategies as situated within their own school and classrooms contexts where there may be presenting conditions and factors that affect their use. We agree with Yeo et al.’s (2016) note that little is known through research about the experiences that teachers encounter with inclusive education in Singapore. However, even though one could argue that there is some preliminary evidence of the birth of inclusive education in Singapore, more needs to be done both at the policy and practice level to enhance the education of students with disabilities alongside their peers.

Teachers and Allied Educators as Agents of Inclusion Several important initiatives (e.g., special resources, facilities) are currently provided by the MOE to support the students with disabilities in mainstream classrooms. Along with providing extra funding for students with disabilities in mainstream schools, the MOE has initiated several changes to schools’ infrastructures to support the education of these children. The two most important ones are the mainstream teachers’ training in special needs and the employment of allied educators for learning and behaviour support AEDs (LBS). As Poon et al. (2013) indicate, all primary schools in Singapore are staffed by at least one learning support coordinator each for literacy (LSC) and mathematics (LSM). LSCs and LSMs are mainstream education teachers who have received training in special needs from the National Institute of Education (NIE) to support students at risk of literacy and numeracy failure in first and second grades. In addition to this, other teachers (approximately 10% of all primary and 20% of all secondary schools) are also trained in special needs (TSN) to further support students with

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disabilities in mainstream schools. Although, TSN teachers might not directly support students with disabilities after their training, as Poon et al. (2013, p. 61) note, their role varies since “some continue to serve their role as teachers with special training, others have been entrusted with the responsibility of establishing and maintaining school support structures such as case management teams and special committees, or mentoring other teachers and school professionals.” Currently, there are no available research data with regard to their role in the schools and the effectiveness of their work. It was in 2004, when Prime Minister Lee Hsien Loong first talked about his vision of an inclusive society in Singapore which he explicitly stated to include persons with disabilities. To this end, a new educator profession, named AEDs (LBS) was created to support the education of students with disabilities in mainstream schools. However, even though all AEDs (LBS) have a diploma in special education similar to the one special school teachers have, the AEDs (LBS) do not experience a special educator’s status. As Lim et al. (2014) note, the AED’s (LBS) role sits in-between the roles of “special educator” and “paraprofessional.” Based on their job description provided by the MOE (2017), AEDs (LBS) provide structured and systematic support to students with mild special educational needs (SEN) in order to integrate them better in the mainstream schools. The support they provide is both in learning and behavior and it is quite common to find one (or maximum two) AED (LBS) in each school. The AEDs (LBS) collaborate with teachers and parents and provide in-class support or individual/small group withdrawal sessions to students with dyslexia, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), or other disabilities. Although one could argue that AEDs (LBS) currently act as agents of inclusion for students with disabilities, they have to support a large number of students with disabilities in each school. According to Lim et al.’s (2014) research study in a sample of 30 newly qualified AEDs (LBS), the participants indicated many different roles and tasks that they have to assume and implement in their schools which led to some confusion in the understanding of their identity. It is indicative that the AEDs (LBS) reported that they have to implement multiple roles

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such as that of “special educator, individual tutor, student counselor, parent counselor, social worker, advocate, community partner, teachercollaborator, teacher assistant, teacher-resource, consultant to teachers, relief teacher, and administrative support” (p. 130). In addition to the conflated identities that the AEDs (LBS) noted in this study, they also spoke about their difficulties in working with students with diverse needs and difficulties to support their integration within the school community (e.g., some of them referred to issues of trust and lack of collaboration). In general, we agree with Yeo et al.’s (2016) recommendation that more opportunities should be provided for mainstream teachers to co-teach with AEDs (LBS) in order for mainstream teachers to be able to observe specialist support in action. We also agree with their recommendation for changes in the role of AEDs (LBS) to that of a consultant for mainstream teachers.

Integration Versus Inclusion Inclusive education is based on the principle that mainstream local schools should provide access to education for all children (UNESCO 1994). According to the UNCRPD, which Singapore ratified in 2013, inclusive education is to be understood as a fundamental human right of every child. In realizing this human right for every child/person, State Parties are to ensure that persons with disabilities are not excluded from the mainstream education system on the basis of disability and can access an inclusive, quality, and free education on an equal basis with others in the communities in which they live. Noting that, there exists different interpretations of what inclusive education can mean in practice, Article 24 of the CRPD (2016) expressly recognizes the differences between exclusion, segregation, integration, and inclusion (para 11). Exclusion refers to the denial or prevention (direct or indirect) of students from accessing education in any form. Segregation is described as the provision of separate environments for students with disabilities in isolation from students without disabilities. Integration is defined as a “process of placing persons with disabilities in existing mainstream educational institutions, as long as the

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former can adjust to the standardized requirements of such institutions” (para 11, p. 4). In contrast, inclusion “involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide for students of the relevant age range with an equitable and participatory learning experience and environment that best corresponds to their requirements and preferences” (para 11, p. 4). In light of these definitions and what we have shared in the previous sections of this chapter, we now provide our insights in terms of what needs to occur and change in Singapore based on what we have shared previously to realize the UNCRPD’s vision and practice of inclusive education for students with disabilities. While it is laudable that mainstream education continues to absorb increasing numbers of students with disabilities since 2005 when greater supports in terms of the professional development of teachers and the AED (LBS) scheme were introduced, access to the mainstream education system remains limited and elusive to many students with disabilities who are educated in a separate special education system. The “standardized requirements” of the current mainstream education system assume students to adjust to rigorous academic and curricular demands that make it difficult for students with higher support needs to have a meaningful education as well as achieve success. Mainstream education in Singapore therefore clearly follows an integration model whereby access is afforded to students with milder disabilities who can cope with its demands and expectations, a trend which has been observed by Vislie (2003) in Western European countries. Viewed from the lens of inclusive education, many children with disabilities in Singapore are hence excluded from the mainstream education system on the basis of their disability unless systemic reform changes amounting to “a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility” (para 2.9, p. 3) occur. This in-depth transformation of mainstream education into an inclusive education system, as envisioned by the UNCRPD’s definition of inclusion, appears unlikely because of

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entrenched features of the current educational landscape which, when viewed from the inclusive education lens, pose significant challenges and barriers to its implementation within education and society.

Diverse Pathways: Separate Lives? Singapore’s variegated education landscape with diverse pathways (MOE 2015) to cater to differences in interest, strengths, and learning needs among students has witnessed the government providing generous amounts of funding of the diverse educational pathways. Although these diverse educational pathways prepare their respective students, grouped primarily on ability, interests, and learning needs, to enter society as successfully as possible, the opportunities for how diverse groups of students are interacting across and forming understandings of and relationships with other students from other groupings and pathways can be limited. Hence, a pitfall of such diverse educational pathways for different groupings of students is the reduction of opportunities for interaction and relationship building among students from diverse pathways. A dual system of education whereby students with and without disabilities attend separate education system, i.e., special education and mainstream education schools, has been a long-standing arrangement in Singapore’s education landscape (Lim and Quah 2004; Lim and Nam 2000; Lim et al. 2008). Although the boundaries of these two systems have blurred beginning since 2005 with the broadening of educational access through additional supports for more students with disabilities, the mainstream education system remains largely unchanged in accommodating the needs of students with greater support needs. The reasons for this separate education system are manifold. These students’ learning needs are presumed to be best met within special education schools where special education teachers are trained to support individualized educational support to address their learning needs. Mainstream classroom learning environments, which typically cater to forty children per class, do not currently have collaborative teaching, such as co-teaching, and instead rely on a single teacher who would normally feel compelled to follow the syllabi of the mainstream curriculum.

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Unlike many countries with both mainstream and special education systems under the purview of one ministry that oversees the running and operation of both mainstream and special education schools, i.e., the MOE, Singapore’s special education schools, though heavily funded by the MOE, belong to and are operated by voluntary welfare organizations. This entrenched history of the affiliation of special education schools with the welfare sector appears to run contrary to the UNCRPD’s claim of persons with disabilities having the right to access a mainstream education system on an equal basis with others in the communities in which they live. Being outside, the mainstream education system also presents limited opportunities for students from special schools to continue along a continuum of placements to lesser restrictive environments within mainstream education since the option of special education classes (e.g., for students with higher support needs) within a mainstream school is constrained by the dual education system arrangement. As evidenced in the attitudinal research in Singapore reviewed earlier in this chapter toward persons with disabilities, many Singaporeans hold negative perceptions and attitudes about their inclusion within mainstream community life, and this pervasive general societal attitude can be attributed to many Singaporeans having grown up in a separate education system apart from their fellow Singaporeans with disabilities (Lim et al. 2008). While there are many Singaporeans who support the idea of inclusive education, as indicated in the Lien Foundation (2016) survey, the lack of knowledge and understanding of benefits in interacting with and including children with disabilities testify to the reality that many Singaporeans lack the personal practical knowledge and experience in growing up with and having relationships with persons with disabilities during the formative school years.

Concluding Remarks: Realizing the UNCRPD in Singapore To begin to realize UNCRPD’s vision of an inclusive education for all in Singapore, the overarching systemic structures that hold differing requirements and conditions for different groupings of students, such as

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for students with disabilities, need to be foremost and explicitly recognized and acknowledged as barriers to inclusion as well as reproducing exclusionary attitudes. In their efforts to establish an inclusive education system, many countries around the world have engaged in education reforms with varying magnitudes of systemic change in order to reduce exclusionary practices and promote the full participation and inclusion of students within mainstream education who have been excluded or are at risk of being marginalized. Systemic change efforts to mention a few have included the merger of both mainstream and special education into a unitary education system, the dismantling and/or relocation of special education services and supports, the conversion of special education schools into resource schools to support inclusion, budgetary reallocation to develop inclusive education, and the retraining of teachers in inclusive pedagogies. Before Singapore ratified the UNCRPD in 2013, its progressive realization toward inclusive education can be seen as having been initially enabled through the vision of an inclusive society announced by PM Lee Hsien Loong, who explicitly mentioned the inclusion of persons with disabilities within society in his 2004 inauguration speech. Since then, Singapore has invested vast amount of attention and effort through policies, education, campaigns, infrastructural improvements (e.g., public transportation), and greater supports to include more students with disabilities within mainstream schools, and several master plans to chart the roadmap toward an inclusive society for people with disabilities. The recent extension of the compulsory education act to students with disabilities (Teng and Goy 2017) is yet another milestone in Singapore’s journey toward inclusive education. What is needed further to enhance the progressive realization of inclusive education is the continuous focus within Singapore to highlight and address exclusionary practices, conditions, and structures that constitute barriers to inclusion for both persons with and without disabilities.

References Booth, T., & Ainscow, M. (2011). Index for Inclusion. Bristol: Centre for Studies on Inclusive Education.

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Department for Education and Skills (DfES). (2004). Every Child Matters. London: DfES. Lien Foundation. (2016). Inclusive Attitudes Survey. Retrieved November 1, 2017, from http://www.lienfoundation.org/sites/default/files/FINAL%20 -%20Inclusive%20Attitudes%20Survey%20Part%201_30May16.pdf. Lim, L. (2012). Meritocracy, Elitism, and Egalitarianism: A Preliminary and Provisional Assessment of Singapore’s Primary Education Review. Asia Pacific Journal of Education, 33(1), 1–14. https://doi.org/10.1080/021887 91.2012.711294. Lim, J. Q. (2016). Rising Number of Students with Special Needs in Mainstream Schools. Channel News Asia. Retrieved November 1, 2017, from http://www.channelnewsasia.com/news/singapore/rising-number-ofstudents/3033364.html. Lim, L., & Nam, S. S. (2000). Special Education in Singapore. Journal of Special Education, 43(2), 104–109. Lim, L., & Quah, M. L. (2004). Foresight via Hindsight: Prospects and Lessons for Inclusion in Singapore. Asia-Pacific Journal of Education, 24(2), 193–204. https://doi.org/10.1080/02188791.2004.10600209. Lim, L., Thaver, T., & Slee, R. (2008). Exploring Disability in Singapore: A Personal Learning Journey. Singapore: McGraw-Hill. Lim, S. M. Y., Wong, M. E., & Tan, D. (2014). Allied Educators (Learning and Behavioural Support) in Singapore’s Mainstream Schools: First Steps Towards Inclusivity? International Journal of Inclusive Education, 18(2), 123–139. https://doi.org/10.1080/13603116.2012.758321. Ministry of Education. (2015). Bringing Out the Best in Every Child. Singapore: Ministry of Education. Ministry of Education. (2017). Allied Educators (Learning and Behaviour Support). Retrieved October 30, from https://www.moe.gov.sg/careers/ allied-educators/learning-behavioural-support. NCSS. (2012). 2nd Enabling Master plan 2012–2016. Retrieved October 30, 2017, from https://www.msf.gov.sg/. NCSS. (2016). 3rd Enabling Master plan 2017–2021. Caring Nation-Inclusive Society. Retrieved October 30, 2017, from https://www.ncss.gov.sg/NCSS/ media/NCSS-Documents-and-Forms/EM3-Final_Report_20161219.pdf. OECD. (2016). PISA 2015 Results in Focus. OECD. Retrieved October 30, from https://www.oecd.org/pisa/pisa-2015-results-in-focus.pdf. Poon, K. K. (2015). Context, Service Provision, and Reflections on Future Directions of Support for Individuals with Intellectual Disability in Singapore.

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Journal of Policy and Practice in Intellectual Disabilities, 12(2), 100–107. https://doi.org/10.1111/jppi.12121. Poon, K., Musti-Ra, S., & Wettasinghe, M. (2013). Special Education in Singapore: History, Trends, and Future Directions. Intervention in School and Clinic, 49(1), 59–64. https://doi.org/10.1177/1053451212472230. Poon, K. K., Ng, Z., Wong, M. E., & Kaur, S. (2016). Factors Associated with Staff Perceptions Towards Inclusive Education in Singapore. Asia Pacific Journal of Education, 36(sup1), 84–97. UNESCO. (1994, June 7–10). The Salamanca Statement and Framework for Action on Special Needs Education: Adopted by the World Conference on Special Needs Education; Access and Quality. Salamanca, Spain, UNESCO. Stangvik, G. (2014). Progressive Special Education in the Neoliberal Context. European Journal of Special Needs Education, 29(1), 91–104. https://doi.org/ 10.1080/08856257.2013.859819. Strogilos, V., & Avramidis, E. (2017). The Cultural Understanding of Inclusion in Diverse Settings: Support Services and Collaboration. In M. T. Hughes & E. Talbot (Eds.), The Wiley Handbook of Diversity in Special Education (pp. 87–114). Chicago: Wiley. Teng, A., & Goy, P. (2017). Children with Moderate to Severe Special Needs to Be Part of the Compulsory Education Act. The Straits Times. Retrieved November 1, 2017, from http://www.straitstimes.com/singapore/education/ children-with-moderate-to-severe-special-needs-to-be-part-of-compulsory. Thaver, T., & Lim, L. (2014). Attitudes of Pre-service Mainstream Teachers in Singapore Towards People with Disabilities and Inclusive Education. International Journal of Inclusive Education, 18(10), 1038–1052. https://doi. org/10.1080/13603116.2012.693399. United Nations. (2006). Convention on the Rights of Persons with Disabilities and Optional Protocol. New York: Author. United Nations. (2016). Convention on the Rights of Persons with Disabilities. New York: Author. US Department of Education. (2001). No Child Left Behind Act. Washington, DC: US Department of Education. Vislie, L. (2003). From Integration to Inclusion: Focusing Global Trends and Changes in the Western European Societies. European Journal of Special Needs Education, 18(1), 17–35. https://doi.org/10.1080/08856250820000 42294. Walker, Z. (2016). Special Education Teacher Preparation in Singapore’s Dual Education System. Teacher Education and Special Education, 39(3), 178–190. https://doi.org/10.1177/0888406415622251.

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Winzer, M., & Mazurek, K. (2014). The Convention on the Rights of Persons with Disabilities: Notes on Genealogy and Prospects. Journal of International Special Needs Education, 17(1), 3–12. https://doi. org/10.9782/2159-4341-17.1.3. World Health Organization (WHO). Health Topics: Disability. Retrieved from www.who.int/topics/disabilities/en/. World Health Organization (WHO) and World Bank. (2011). The World Report on Disability. New York: Author. Yeo, L. S., Chong, W. H., Neihart, M. F., & Huan, V. S. (2016). Teachers’ Experience with Inclusive Education in Singapore. Asia Pacific Journal of Education, 36(sup1), 69–83. https://doi.org/10.1080/02188791.2014.934781. Yeo, L. S., Neihart, M., Tang, H. N., Chong, W. H., & Huan, V. S. (2011). An Inclusion Initiative in Singapore for Preschool Children with Special Needs. Asia Pacific Journal of Education, 31(2), 143–158.

19 The Role of Self-Advocacy in Academic Access for Students Who Are Deaf or Hard of Hearing in Higher Education Magda Nikolaraizi, Christina Kofidou and Merv Hyde

Introduction A growing number of students who are deaf or hard of hearing (SDHH) attend mainstream higher education institutions (HEIs) (Bisol et al. 2010; Hyde et al. 2016; Noble 2010; Richardson et al. 2010; Wooten 2014). Despite this increase, HEIs pose several barriers to SDHH, which impede their academic access, their participation during lectures, and ultimately their learning (Antia et al. 2007; Chute 2012; Foster et al. 1999; Lang 2002; Noble 2010; Powell 2011; Schmitz 2009; Tsach and Most 2016).

M. Nikolaraizi (*) · C. Kofidou  Department of Special Education, University of Thessaly, Volos, Greece e-mail: [email protected] M. Hyde  School of Education, University of the Sunshine Coast, Sunshine Coast, Australia e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_19

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Communicating effectively is a vital skill in the higher education environment (Powell 2011) and is closely associated with the academic participation and engagement of SDHH (Oliva et al. 2016). Communicating and participating in classroom discussions and being engaged in active and interactive learning activities are associated with learning processes (Tsach and Most 2016), the academic achievement (Knoors and Hermans 2010), and the academic outcomes of SDHH (Antia et al. 2009; Hyde et al. 2009; Lang 2002; Powell et al. 2013). Unfortunately, SDHH often face many communication challenges regarding their academic participation (Antia et al. 2007; Lang 2002; Foster et al. 1999). These challenges may be attributed to several factors, such as the communication practices of faculty staff, the adequacy and quality of support services, the audiovisual accessibility of lecture rooms (Antia et al. 2007; Foster et al. 1999), the communication and academic skills of the SDHH (Hyde et al. 2016; Richardson et al. 2000; Stinson et al. 1996), their self-regulation skills (Albertini et al. 2012), and their self-advocacy skills (Cawton et al. 2009; Lang 2002; Layton and Lock 2003; Luckner and Becker 2013). The aim of the current chapter is to examine the role of self-advocacy in the academic access of SDHH and specifically in enabling them to deal with communication challenges during lectures that may impede their academic access in higher education. The first part of the chapter presents research findings in relation to the communication barriers that impede the academic access of SDHH during lectures. Second, the nature and the role of self-advocacy are described in relation to the academic access of SDHH. Finally, the importance of promoting self-advocacy from an early age and across all levels of education is underlined as well as the need for further research in relation to self-advocacy intervention among SDHH.

Communication Barriers During Lectures for Students Who Are Deaf or Hard of Hearing Bell (2013) analyzed the experiences of SDHH who communicated orally in tertiary education in South Africa. The students faced many barriers in communicating and learning that were associated with factors

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such as poor acoustics, large class sizes, poor lighting, and limited support services. Further, additional barriers were attributed to lecturers who sometimes were willing to support the SDHH but did not know how to do so, while other times they knew what to do, but forgot to use important practices that could enhance the students’ access and participation. While some lecturers unintentionally used some inclusive educational practices, such as small group discussions or electronic slide shows in class, other lecturers spoke while moving around the classroom or writing on the board, presented videos with no subtitles, and were unwilling to provide electronic copies of notes. Further, during examinations, instructions were provided to students orally, instead of being written, which was time-consuming and stressful for the students. The critical role of lecturers in the communication access and participation of SDHH was also underlined by Powell (2011). The participants from 31 New Zealand tertiary institutions commented on communication challenges during tutorial sessions and during class dialogues. While some instructors were willing to help students and were aware of deafness and its implications, other instructors were unaware of students’ needs, they did not lecture at an effective pace, they were reluctant to wear an FM microphone, moved around the class while talking, and did not provide the sign language interpreters with lecture content on time in order to be prepared for the class. Further, some SDHH participants were not satisfied with peer note taking because the note takers lacked the expected level of professionalism and provided meager notes or notes were not offered in a timely manner. Additionally, some students noted that interpreters were often unavailable in some classes, or not suitably skilled and adequately qualified in order to interpret in university conceptual settings. The interpreters’ lack of appropriate training was also identified in a study by Bisol et al. (2010) which involved undergraduate deaf women who were profoundly deaf and communicated in Brazilian Sign Language. Another challenge reported by the participants in this study concerned the fact that many people talked at the same time in some class groups and the instructors wrote and talked simultaneously or wrote on the board very quickly, which made it very difficult for the students to keep pace with the lesson.

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Hyde et al. (2009) examined the experiences of a large number of current and former SDHH at a large Australian university. In their study, some students referred to difficulties in receiving and understanding information in “hearing classrooms” and also complained about some instructors’ limited understanding of their hearing loss. The students also reported that instructors were often speaking while walking around the classroom and didn’t repeat other students’ comments, questions, or answers. Smith (2004) also stressed that students’ success and satisfaction with college were closely associated with the nature of support services, such as interpreting and note taking. Some participants felt satisfied with interpreters and note takers, while others were disappointed, because of lack of skills among support staff or their lack of professional behavior. Due to their communication barriers, many students reported that they were reluctant to participate during lectures and they preferred small classes with fewer students in them. Further concerns regarding students’ challenges in classroom participation were also evident in a study by Foster et al. (1999). The students in this study reported their reliance on interpreters to communicate with their teachers and peers and also referred to the lack of interpreters, their inadequate level of sign language proficiency, and their ignorance of the content of the instructional material. Further, they felt concerned about the instructors’ pace of teaching as well as the fact that the lecturers made few modifications to facilitate students’ access and participation in lectures, or in some cases they considered that support for the SDHH students was the responsibility of other professionals, such as the interpreters or note takers. The importance of quality sign language interpreting was also highlighted by Stinson et al. (1996). These researchers noted challenges regarding the communication access of SDHH in postsecondary education, such as interpreters’ sign language proficiency and lecturers’ pedagogical effectiveness, the complex logistics of lipreading, being understood by instructors and peers, keeping up with the pace of the class, following in-class conversations, and participating actively in group discussions. The participants commented that many students talked quickly at the same time and this caused a gap between the

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SDHH understanding and the rapidly evolving classroom discourse. They also reported a feeling of separation from the class, because they had to sit together, in specific positions in front of the class that enabled them to see the instructor and the interpreter. They admitted feeling separated from other aspects of instruction as well, as a result of only being able to approach tutors who could use sign language, instead of being able to directly approach their instructors at any stage. Some studies of the communication challenges limiting the academic access of SDHH have pointed to the beneficial role of technology in enhancing communication and learning. Indeed, Breivik (2007) had suggested that deaf people were early adopters of digital technologies and that these were quickly taken up by deaf people with good effect in national and transnational contexts. Research regarding the use of C-Print captioning, which produces a simultaneous and storable text display of spoken information (Elliot et al. 2001; Hyde et al. 2016; Stinson et al. 2014) indicated that the students who used C-Print did not have to attend classes and write notes at the same time and also had subsequent access to complete, permanent, clear, and detailed information. In particular, the use of the latest C-Print technology enabled students to view C-Print captions on mobile devices such as smart phones and tablets, improved their communication access because of the small size, portability, and easily read display of the mobile device (Hyde et al. 2016). Also, Lartz et al. (2008) stressed that assistive technology provided solid, tangible, and comprehensive information instead of the ephemeral and transitory information associated with oral or signed communication. Therefore, students had more time to process the information and felt more autonomous and included. The use of such voice-to-text technology does, of course, assume an advanced level of literacy by SDHH. It also assumes that the staff compiling the real-time C-Print notes are professionally trained and competent in the subject discipline. The use of distance education or online courses has also been suggested as helping some SDHH to deal with communication barriers because they did not have to worry about missing out on information from lectures and they had more time to think and compose their responses, which facilitated their communication and reinforced their

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active participation without the necessity for a third party. Some challenges concerned the need to coordinate multiple sources of information, such as from instructors and interpreters as well as the need to respond to a text-based learning environment, which could be challenging for some students (Lartz et al. 2008; Long et al. 2007; Powell 2011). Based on the above studies, SDHH continue to face several communication barriers in their academic access in higher education. Many of the barriers, as described above, are associated with the accommodations provided by lecturers (Foster et al. 1999; Lang 2002; Lang et al. 1993, 1994) as well as the availability and capacity of interpreters and note takers (Bisol et al. 2010; Foster et al. 1999; Johnson 1991; Lang 2002; Lawson 2012; Marschark et al. 2005, 2006, 2008; Napier and Barker 2004; Nussbaum et al. 2012). Although there is little doubt that the roles of lecturers and interpreters as well as other external and environmental factors can create potential communication barriers to optimal academic access for SDHH, in this chapter the emphasis is placed on the role that SDHH, themselves, can play to deal with these barriers and specifically how SDHH can self-advocate to address some of these communication barriers during lectures to enhance their academic access. The following section examines the meaning of self-advocacy and how it may be related to the academic access of SDHH.

The Meaning of Self-Advocacy and Its Relevance to the Academic Access of SDHH Self-advocacy entails speaking out on one’s behalf (Hourston 2011; Lundström 2008; McNamara 2009; Schreiner 2007), knowing your rights and responsibilities, standing up for them, and making and communicating choices about your own life and circumstances (Pennell 2001; Smithdas 1994). Based on a review by Test et al. (2005a), self-advocacy is approached and is defined from various perspectives as a goal for education, as a civil rights movement, and as an ability or skill. Self-advocacy is considered as a component of the larger

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construct of self-determination (Adams and Proctor 2010; Fiedler and Danneker 2007; Ginevra et al. 2013; Stoner et al. 2006; Thoma and Wehmeyer 2005) and is sometimes used interchangeably with the term “self-determination” (Hammer 2004; Ryan and Griffiths 2015). Self-determination is a combination of skills, knowledge, and beliefs that enable a person to be proactive, achieve goals, make choices, take decision, and be self-regulated and autonomous (Field et al. 1998; Ginevra et al. 2013; Wehmeyer 2014). Both self-advocacy and selfdetermination share common characteristics, such as self-knowledge and identifying one’s needs, being autonomous, making decisions, expressing needs and desires, and communicating these effectively (Fiedler and Danneker 2007; Hendrix 2015; Test et al. 2005b). These characteristics are themselves embedded in the broader issue of identity formation for young DHH people, which is a dynamic phenomenon influenced by many factors (Bat-Chava 2000; Foster and Kinuthia 2003; Leigh et al. 1998; Maxwell-McCaw 2001; Nikolaraizi 2007; Nikolaraizi and Hadjikakou 2006) and constructed within the interplay among many variables and experiences. These may include their ethnic origins, sexual orientations, family and educational experiences, cultural, linguistic, vocational and social traditions and experiences, and their state of emotional well-being. Their hearing loss, per se, is an instrumental part of this broader set of factors influencing their identity formation and their development of capacity for self-advocacy. Within identity formation, the concept of resilience has received particular attention as it also relates to self-advocacy. Benard’s (2004) analysis of resilience identified a number of skills and attributes associated with this characteristic: 1. Higher levels of social competence and the ability to interact well with others. 2. Problem-solving skills—students who can think through requirements for change and address their challenges and adversities. 3. A sense of autonomy and self-efficacy—a sense of responsibility, independence, and confidence in their own capacity to deal with challenging circumstances.

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4. A sense of purpose, hope, or meaning allied with an optimistic perspective about their future and what is needed to survive and thrive. These broader descriptions help to position an understanding of self-advocacy among populations of students with a disability. Test et al. (2005b) developed a conceptual framework to describe self-advocacy in relation to persons with a disability, in which the basic components of self-advocacy included knowledge of self, knowledge of rights, communication, and leadership. Knowledge of self is the understanding of one’s own abilities, limitations, and characteristics of the disability. Knowledge of rights is the knowledge of one’s rights as a citizen and as a student with a disability. Communication is a person’s ability to communicate effectively through assertive behavior and leadership and their ability to advocate effectively for their own needs and the common good. A similar view is also shared by Stuntzner and Hartley (2015) who state that self-advocacy for a person with a disability comprises the following set of skills: having a clear understanding of one’s disability, being knowledgeable of one’s personal strengths, limitations, and abilities, being aware of the accommodations or services needed, realizing the importance of standing up for what one needs in relation to the disability and communicating effectively the services or facilities needed. Also, according to Stodden et al. (2003), self-advocacy means that students are able to communicate their needs and decide what support they need to achieve their goals. In particular, SDHH with self-advocacy skills are the ones who are aware of the type and the degree of their hearing loss and its impact in their education (Clark and Scheele 2005), their current and desired levels of access and participation, their communication capacities (Luckner and Becker 2013), and their performance relative to others (Luckner and Muir 2002). SDHH with self-advocacy skills are the ones who express their views about learning processes and advocate for communication accessibility and necessary accommodations, such as preferential seating, lighting, and note taking (Clark and Scheele 2005). They are the ones who identify their individual needs and express these effectively to their instructors, interpreters, and staff members; set goals; negotiate

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with others; and resolve problems (English 2012; Luckner and Becker 2013; Powell 2011). SDHH with self-advocacy skills are the ones who can recognize the role of interpreters and ask interpreters for clarifications when needed; they provide them with the necessary feedback in order to affirm; they understood the conveyed message; they work with interpreters in order to get prepared for in-class presentations and use them effectively during lectures and during course assessment tasks (Clark and Scheele 2005). In summary, SDHH with self-advocacy skills are the ones who are aware of their communication challenges, the resources they need, communicate their needs, ask for resources, and know how to advocate for themselves if these resources are inadequate or missing (Bell 2013; Cawthon 2013; Chute 2012; Lartz et al. 2008; Luckner and Becker 2013; Luckner and Muir 2002; Mathisen 2013; Powell 2011). The skills described above could play an important role in promoting better access for SDHH to higher education, and although there is no research evidence regarding SDHH, the available research in relation to students with disabilities shows that self-advocacy contributes to students’ readiness to engage in higher education, it helps their adaptation and resilience, and it facilitates communication with their instructors and helps them accomplish effective independence within higher education (Adams 2007; Adams and Proctor 2010; Garrison-Wade 2012; Cano-Smith 2009; Getzel and Thoma 2008; Merchant and Gajar 1997; Milsom and Dietz 2009; Murray et al. 2014; Skinner and Lindstrom 2003). However, although self-advocacy plays an important role in the access of SDHH to higher education, these students often seem to be reluctant to identify themselves as deaf or hard of hearing, to express their learning and communication needs, and to ask for support or use available support services that may enhance their communication access (Bell 2013; Hyde et al. 2009; Richardson et al. 2004). These reported behaviors may be partly associated with the desire of students to deny or hide their communication needs, not “stand out” as different or risk being stigmatized, but they are more likely linked to the students’ poor self-advocacy skills (Bell 2013; Hyde et al. 2009; Richardson et al. 2004). Students with disabilities, including people

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who are deaf or hard of hearing, often, do not have the opportunities to develop and practice self-advocacy skills from an early age at home or at school, because parents or teachers identify their needs, decide what types of services are appropriate for them, seek these services, and provide them with all the necessary resources. As a result, students learn to depend on others, and when they move from this structured, supportive, and guided educational process to a self-directed path in higher education with its greater emphasis on autonomy and individual responsibility, they are not aware of their needs, they do not know how to communicate their needs, and they do not know which resources are appropriate or how to advocate for them. In transition into higher education, they frequently do not self-advocate and often expect others to advocate for them and that support services should be provided without having to ask for them, based on their secondary or primary education experiences (Adams and Proctor 2010; Barnard-Brak et al. 2010; Daly-Cano et al. 2015; Hadley 2006, 2011; Hyde et al. 2009; Izzo and Lamb 2002; Luckner and Becker 2013; Powell et al. 2013; Rojas 2007; Stodden et al. 2003; Test et al. 2005b; Trainor 2005). An expectation of services and learning accommodations is to an extent within their rights as learners, but in the environment of higher education with its emphasis on self-regulation, autonomy, and independent activity, rights need to be accompanied by a level of self-awareness and advocacy from the students themselves. Parents and teachers can play a critical role in encouraging children and students by promoting self-advocacy skills (Daly-Cano et al. 2015; Murray et al. 2014; Murray and Naranjo 2008). Therefore, there is a need to promote self-advocacy from an early age enabling students with disabilities to become self-advocates as early as possible, well before their experience with higher education.

The Importance of Self-Advocacy Intervention Self-advocacy intervention requires a team effort that involves the individual, the parents, teachers, counselors, and other service providers, starting the process of development in self-advocacy early, promoting

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an understanding among individuals of their hearing loss and its consequences, and providing tools that help individuals who are deaf or hard of hearing identify and understand their needs, the challenges related to their hearing loss, their rights, and the strategies that they can use to face these challenges (Nussbaum et al. 2012). Enhancing self-advocacy can be accomplished through guidance, experiential activities, direct and accurate instruction, role-playing and structured practice opportunities (Campbell-Whatley 2008; Durlack et al. 1994; Van Reusen et al. 1989; Luckner and Becker 2013), by being engaged in educational and vocational planning meetings, volunteer and school-sponsored work experience and taking part in social activities and family activities (Nussbaum et al. 2012; Pocock et al. 2002), by seeking children’s feedback about their learning experiences, and by encouraging them to express their own wants and needs (Stoner et al. 2006). Further, the involvement of self-advocacy goals in Individual Education Plans (IEP) and students’ participation in IEP teams can help them identify the accommodations that they need and understand to whom and how to communicate with them (Cawthon et al. 2009; Hammer 2004; Hendrix 2015). Unfortunately, there is limited research regarding self-advocacy intervention for SDHH. The most representative study in relation to SDHH concerned early education (Hendrix 2015) and examined pre-school to year three teachers’ perceptions regarding the self-advocacy skills of their SDHH and also the nature of any self-advocacy approaches that they encouraged. The results of this study revealed that many children had experienced negative impacts on their academic development as a consequence of their low levels of self-advocacy skills and that there was a significant correlation between the self-advocacy skills taught and encouraged in the classroom and levels of skills proficiency displayed by DHH children. A number of studies examined self-advocacy interventions among students with disabilities in primary or secondary education. Castro (2015) studied the perceptions of five students with mild to moderate learning disabilities and their teachers concerning a self-advocacy intervention in general education classrooms through the implementation of a systematic self-advocacy intervention. After the implementation of

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the self-advocacy intervention, themes were produced relating to positive changes made, the continuing difficulties students with learning disabilities faced in self-advocacy behavior and effective strategies to improve self-advocacy behavior for students with learning disabilities included in general education classrooms. For example, the students stated that they liked learning about accommodations; they took more active roles after the self-advocacy training, such as making more eye contact, asking more questions, and asking for additional accommodations. Teachers agreed that students were more confident in class in asking for help, they made more eye contact, they became more vocal, and they were more comfortable and joking with the teacher and reminded them more often to differentiate instruction in lessons. Also, students reported that they needed more practice to improve their self-advocacy behavior and teachers reported they would like to be included in further self-advocacy training. A study by Prater et al. (2014) examined the effectiveness of self-advocacy training implemented with four high school students with learning disabilities attending both special education classrooms and general education classrooms. Four lessons were taught to the students. The specific skill taught was modeled by the teacher and then practiced by the students. The purpose of the self-advocacy training was to help the participants recognize an accommodation needed, ask for the accommodation appropriately, and put the accommodation into effect. The acronym FESTA helped the students remember the steps to request accommodations: face the teacher, maintain eye contact, request the accommodation, state the reason the accommodation was needed, and thank the teacher. The results of the study showed the effectiveness of the self-advocacy training, because all of the students asked for every accommodation needed after receiving training. Also, the teachers recognized the need to teach self-advocacy skills so that students understand their strengths and needs, identify which accommodations are necessary for them, and also learn how to request them. Test et al. (2005a) reviewed 25 studies that concerned self-advocacy intervention studies from 1972 to 2004. Based on the findings of the studies, it was found that individuals of varying ages and disabilities could be taught self-advocacy skills. Further, researchers underlined

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the need for increasing methodological rigor in implementing and reporting self-advocacy intervention studies. An updated review was presented by Roberts et al. (2014) who examined 18 empirical studies that concerned self-advocacy interventions for students with mild to moderate disabilities in primary or secondary education from 2004 to 2012. Some of the reviewed practices used to teach self-advocacy skills were through curricula, peer tutoring, writing strategies, and direct instruction, whereas most of the studies used quantitative designs, had high school participants with learning disabilities, and took place inside a school setting. It was also found that only one study measured post-program data, while no study examined the relationship between ethnicity and self-advocacy. Finally, few studies investigated self-advocacy predictors through empirical observation, while only one study in the single-case and group experimental design categories could be characterized as of “high quality” and no study could be characterized as “acceptable” in terms of research design. This review presented some general implications for practitioners underlining the need for parents and teachers to provide more opportunities to their children to ask for support and practice self-advocacy skills through the completion of leadership plans. A series of studies (Cease-Cook et al. 2013; Hammer 2004; Lancaster et al. 2002; Test and Neele 2004; Van Reusen et al. 1989; Van Reusen and Bos 1994) examined the role of a self-advocacy strategy originally validated by Van Reusen et al. (1989) in enhancing the participation of students with disabilities in secondary education in education and transition planning meetings. In these studies, after the self-advocacy intervention, the students increased and improved their participation in IEP meetings and could provide better information regarding their strengths, their weaknesses, and their needs. Durlak et al. (1994) investigated the effectiveness of a training program designed to teach self-determination and self-advocacy skills to eight high school students between 15 and 17 years with learning disabilities. The results of the study suggested that all students acquired and maintained new skills of self-determination, and specifically self-advocacy, through direct instruction, and afterward generalized these skills to general education classrooms.

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In addition to the above intervention studies that concerned students with disabilities in secondary, primary, or pre-school education, some studies examined the role of self-advocacy training for students with disabilities in higher education. Walker and Test (2011) conducted a self-advocacy intervention involving three African American male students with a learning disability and/or an ADD/ADHD diagnosis attending college in order to help them identify strategies that lead to better transition outcomes and self-advocacy skills. The results from the study illustrated the relationship between the self-advocacy intervention and student’s ability to request accommodations in a roleplay situation, students’ ability to express their support needs in meetings with their instructors and the overall effectiveness of the intervention. All students felt that the self-advocacy intervention positively affected their ability to advocate for themselves by requesting accommodations in an academic setting. Lock and Layton (2001) developed an individual self-advocacy plan, as an organizer for a group of incoming US college freshmen with learning disabilities to guide them toward communicating their needs in their discussions with their lecturers. The students, together with their instructors and their academic advisors, discussed their own strengths and weakness and the accommodations to pedagogy and support that could be important for their success. The students also discussed some of the concerns expressed by lecturers and considered responses to develop shared responsibility regarding accommodations. Finally, the students participated in practice events involving communicating their needs to their lecturers. Students expressed satisfaction with the self-advocacy planning process and felt that it helped them understand their innate processing skills, prepare their discussions with their instructors, and communicate their needs. Also, instructors reported that they became more aware of their students’ needs. A training program for self-advocacy and conflict resolution skills was evaluated by Palmer and Roessler (2000). The program involved 50 students with disabilities enrolled in two- and four-year postsecondary institutions and aimed to help students ask for classroom accommodations. The control group comprised 26 individuals and an experimental group of 24 individuals. After the intervention, the experimental group

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showed higher levels of self-advocacy, conflict resolution behaviors, and higher levels of social competence compared to the control group. Roessler et al. (1998) implemented a single subject, multiple baseline design to assess a self-advocacy training program that aimed to assist three college students with disabilities to advocate to their instructors for classroom accommodations. The researchers used one orientation lesson and seven lessons depicting 17 target behaviors, such as introducing oneself, stating one’s disability in functional terms, stating previous accommodations used and the desire to use similar accommodations in the class, explaining the sources of the accommodations, questions about the acceptability of accommodations, affirming approval or disapproval, reviewing a request, and closing by expressing appreciation. Results in this small study indicated that training in self-advocacy skills had positive effects on the acquisition, maintenance, and generalization of the target behaviors, and the students reported taking pleasure in their participation in the program. The above studies, both the ones that included students from preschool, primary, or secondary education as well as the ones from higher education indicate the dynamic role that self-advocacy can play in enhancing the academic access of students with disabilities. However, the above studies do not consider the needs of SDHH specifically and also largely reflect US education systems. Thus, there remains an urgent need for further research across education systems internationally to determine the features of the most effective approaches to developing the capacities of SDHH for self-advocacy in higher education settings.

Conclusions In conclusion, SDHH face many communication barriers regarding their academic access, which often are associated with the roles of lecturers, interpreters, and support services (Bisol et al. 2010; Foster 1989; Foster et al. 1999; Lang 2002; Marschark et al. 2005, 2008; Polich 2001). In order to deal more effectively with the different types of barriers, SDHH are required to self-advocate. Specifically, SDHH need to be aware of their needs, communicate their needs to their lecturers,

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and ask for resources and support services (Cawthon 2001; Hyde et al. 2009; Lartz et al. 2008; Lang 2002; Luckner and Becker 2013; McCarthy 2007). The development of self-advocacy skills needs to be promoted as early as possible considering that children at different ages can be taught and also expected to develop different levels of self-advocacy skills (Campbell-Whatley 2008; Lartz et al. 2008; Wehman and Kregel 2004). Parents and teachers play a critical role in encouraging children and students who are deaf or hard of hearing to develop and use self-advocacy skills (Daly-Cano et al. 2015; Murray et al. 2014; Murray and Naranjo 2008) across all levels of education and especially in higher education, where students are expected to be aware of their needs as individuals, communicate these needs in an effective manner, and take initiatives that enhance their academic access and engagement. The issue of the importance of self-advocacy skills for all students including SDHH in higher education has been well established. It is also well established that students’ capacity for self-advocacy is positioned in the broader contexts of their own identity development and their degree of resilience in facing challenging circumstances. What is less clear is how self-advocacy may be best achieved in a manner that reflects the identity of the SDHH as emerging adults. Their selfadvocacy needs to be strategic and structured to ensure that HEIs accommodations to recognize and support students’ learning, communication, and their sense of belonging in this education sector.

References Adams, K. S. (2007). Visibility of Disability, Attributional Style, Psychosocial Adjustment to Disability, and Self-Advocacy Skill in Relation to Student Adaptation to College. Dissertation in Partial Fulfillment for the Degree of Doctor of Philosophy. Available from The Florida State University DigiNole Commons. The Florida State University, Tallahassee, FL. FSU_migr_etd0113 (IID). Adams, K. S., & Proctor, B. E. (2010). Adaptation to College for Students with and Without Disabilities: Group Differences and Predictors. Journal of Postsecondary Education and Disability, 22, 166–184.

19  The Role of Self-Advocacy in Academic Access …     399

Albertini, J. A., Kelly, R. R., & Matchett, M. K. (2012). Personal Factors That Influence Deaf College Students’ Academic Success. Journal of Deaf Studies and Deaf Education, 17, 85–101. https://doi.org/10.1093/deafed/enr016. Antia, S. D., Jones, P. B., Reed, S., & Kreimeyer, K. H. (2009). Academic Status and Progress of Deaf and Hard-of-Hearing Students in General Education Classrooms. Journal of Deaf Studies and Deaf Education, 14, 293–310. https://doi.org/10.1093/deafed/enp009. Antia, S. D., Sabers, D. L., & Stinson, M. S. (2007). Validity and Reliability of the Classroom Participation Questionnaire with Deaf and Hard of Hearing Students in Public Schools. Journal of Deaf Studies and Deaf Education, 12, 158–171. https://doi.org/10.1093/deafed/enl028. Barnard-Brak, L., Lechtenberger, D., & Lan, W. (2010). Accommodation Strategies of College Students with Disabilities. The Qualitative Report, 15, 411–429. Bat-Chava, Y. (2000). Diversity of Deaf Identities. American Annals of the Deaf, 145, 420–428. Bell, D. (2013). Investigating Teaching and Learning Support for Students with Hearing Impairment at a University in the Western Cape. Doctoral dissertation, Stellenbosch University. https://doi.org/10.13140/rg.2.1.2069.9687. Bernard, B. (2004). Resiliency: What We Have Learned. San Francisco, CA: WestEd. Bisol, C. A., Valentini, C. B., Simioni, J. L., & Zanchin, J. (2010). Deaf Students in Higher Education: Reflections on Inclusion. Cadernos de Pesquisa, 40, 147–172. https://doi.org/10.1590/s0100-15742010000100008. Breivik, J.-K. (2007). Deaf Identities in the Making: Local Lives, Transnational Connections. Washington, DC: Gallaudet University Press. https://doi. org/10.1080/15017410601185622. Campbell-Whatley, G. D. (2008). Teaching Students About Their Disabilities: Increasing Self-Determination Skills and Self-Concept. International Journal of Special Education, 23, 137–144. Cano-Smith, J. M. (2009). Self-Advocacy Experiences of College Students with Learning Disabilities and/or Attention Deficit Hyperactivity Disorder. Doctoral dissertation, University of Denver. Retrieved from https://digitalcommons.du.edu/cgi/viewcontent.cgi?article=1109&context=etd. Castro, A. P. (2015). High School Students with Learning Disabilities: SelfAdvocacy Skills in the General Education Classroom. Master’s thesis, California State University. Retrieved from https://digitalcommons.csumb. edu/cgi/viewcontent.cgi?article=1516&context=caps_thes.

400     M. Nikolaraizi et al.

Cawthon, S. W. (2001). Teaching Strategies in Inclusive Classrooms with Deaf Students. Journal of Deaf Studies and Deaf Education, 6, 212–225. Cawthon, S. W. (2013). Accommodations Quality for Students Who Are d/ Deaf or Hard of Hearing. American Annals of the Deaf, 158, 438–452. Cawthon, S. W., Nichols, S. K., & Collier, M. (2009). Facilitating Access: What Information Do Texas Postsecondary Institutions Provide on Accommodations and Services for Students Who Are Deaf or Hard of Hearing? American Annals of the Deaf, 153, 450–460. Cease-Cook, J., Test, D. W., & Scroggins, S. (2013). Effects of the CD-Rom Version of the Self-Advocacy Strategy on Quality of Contributions in IEP Meetings of High School Students with Intellectual Disability. Education and Training in Autism and Developmental Disabilities, 48, 258–268. Chute, P. M. (2012). College Experience for Young Adults with Hearing Loss. Deafness and Education International, 14, 60–65. Clark, G., & Scheele, L. (2005). Informal Inventory of Independence and Self-Advocacy Skills for Deaf/Hard of Hearing Students (Measurement Instrument). Retrieved from http://successforkidswithhearingloss.com/ wp-content/uploads/2011/12/Informal-Inventory-of-Independence-andSelf-Advocacy-Skills-for-Deaf-Hard-of-Hearing-Students.pdf. Daly-Cano, M., Vaccaro, A., & Newman, B. (2015). College Student Narratives About Learning and Using Self-Advocacy Skills. Journal of Postsecondary Education and Disability, 28, 213–227. Durlak, C. M., Rose, E., & Bursuck, W. D. (1994). Preparing High School Students with Learning Disabilities for the Transition to Postsecondary Education: Teaching the Skills of Self-Determination. Journal of Learning Disabilities, 27, 51–59. Elliot, L. B., Stinson, M. S., McKee, B. G., Everhart, V. S., & Francis, P. J. (2001). Perceptions of the C-Print Speech-to-Text Transcription System. Journal of Deaf Studies and Deaf Education, 6, 285–298. English, K. (2012). Self-Advocacy for Students Who Are Deaf or Hard of Hearing (2nd ed.). University of Akron. Retrieved from http://gozips.uakron. edu/~ke3/Self-Advocacy.pdf. Fiedler, C. R., & Danneker, J. E. (2007). Self-Advocacy Instruction: Bridging the Research-to-Practice Gap. Focus on Exceptional Children, 39, 1–20. Field, S., Martin, J., Miller, R., Ward, M., & Wehmeyer, M. (1998). A Practical Guide for Teaching Self-Determination. Reston, VA: Council for Exceptional Children.

19  The Role of Self-Advocacy in Academic Access …     401

Foster, S. (1989). Reflections of a Group of Deaf Adults on Their Experiences in Mainstream and Residential School Programs in the United States. Disability, Handicap & Society, 4, 37–56. https://doi. org/10.1080/02674648966780031. Foster, S., & Kinuthia, W. (2003). Deaf Persons of Asian American, Hispanic American, and African American Backgrounds: A Study of Intraindividual Diversity and Identity. Journal of Deaf Studies and Deaf Education, 8, 271–290. Foster, S., Long, G., & Snell, K. (1999). Inclusive Instruction and Learning for Deaf Students in Postsecondary Education. Journal of Deaf Studies and Deaf Education, 4, 225–235. Oxford. Garrison-Wade, D. (2012). Listening to Their Voices: Factors That Inhibit or Enhance Postsecondary Outcomes for Students’ with Disabilities. International Journal of Special Education, 27, 113–125. Getzel, E. E., & Thoma, C. A. (2008). Experiences of College Students with Disabilities and the Importance of Self-Determination in Higher Education Settings. Career Development for Exceptional Individuals, 31, 77–84. Ginevra, C., Nota, L., Soresi, S., Shogren, K., Wehmeyer, M. L., & Little, T. D. (2013). A Cross-Cultural Comparison of the Self-Determination Construct in Italian and American Adolescents. International Journal of Adolescence and Youth, 4, 501–517. https://doi.org/10.1080/02673843.201 3.808159. Hadley, W. M. (2006). L.D. Students’ Access to Higher Education: SelfAdvocacy and Support. Journal of Developmental Education, 30, 10–16. Hadley, W. M. (2011). College Students with Disabilities: A Student Development Perspective. New Directions for Higher Education, 154, 77–81. Retrieved from http://dx.doi.org/10.1002/he.436. Hammer, M. R. (2004). Using the Self-Advocacy Strategy to Increase Student Participation in IEP Conferences. Intervention in School and Clinic, 39, 295–300. https://doi.org/10.1177/10534512040390050601. Hendrix, A. (2015). Self-Advocacy Skills in Children Who Are Deaf or Hard of Hearing: Listening and Spoken Language Teacher Perceptions in Preschool Through Third Grade Settings. Master’s thesis, Utah State University. Retrieved from http://digitalcommons.usu.edu/cgi/viewcontent.cgi?article= 1500&context=gradreports. Hourston, S. (2011). Self-Advocacy for People with Learning Disabilities: A Guide for Adult Educators. Vancouver, BC: Learning Disabilities and Whole Life Learning Project, Literacy BC.

402     M. Nikolaraizi et al.

Hyde, M., Nikolaraizi, M., Powell, D., & Stinson, M. (2016). Critical Factors Toward the Inclusion of Deaf and Hard-of-Hearing Students in Higher Education. In M. Marschark, V. Lampropoulou, & E. K. Skordilis (Eds.), Diversity in Deaf Education (pp. 441–472). London: Oxford University Press. Hyde, M., Punch, R., Power, D., Hartley, J., Neale, J., & Brennan, L. (2009). The Experiences of Deaf and Hard of Hearing Students at a Queensland University: 1985–2005. Higher Education Research & Development, 28, 85–98. https://doi.org/10.1080/07294360802444388. Izzo, M., & Lamb, M. (2002). Self-Determination and Career Development: Skills for Successful Transitions to Postsecondary Education and Employment. Journal of Vocational Special Needs Educators, 24, 26–36. Johnson, K. (1991). Miscommunication in Interpreted Classroom Interaction. Sign Language Studies, 70, 1–34. Gallaudet University Press. https://doi. org/10.1353/sls.1991.0005. Knoors, H., & Hermans, D. (2010). Effective Instruction for Deaf and Hardof-Hearing Students: Teaching Strategies, School Settings, and Student Characteristics. In M. Marschark & P. E. Spencer (Eds.), The Oxford Handbook of Deaf Studies, Language, and Education (Vol. 2, pp. 57–71). New York: Oxford University Press. Lancaster, P. E., Schumaker, J. B., & Deshler, D. D. (2002). The Development and Validation of an Interactive Hypermedia Program for Teaching a Self-Advocacy Strategy to Students with Disabilities. Learning Disability Quarterly, 25, 277–302. https://doi.org/10.2307/1511358. Lang, H. G. (2002). Higher Education for Deaf Students: Research Priorities in the New Millennium. Journal of Deaf Studies and Deaf Education, 7, 267–280. https://doi.org/10.1093/deafed/7.4.267. Lang, H. G., Dowaliby, F. J., & Anderson, H. (1994). Critical Teaching Incidents: Recollections of Deaf College Students. American Annals of the Deaf, 139, 119–127. Lang, H. G., McKee, B. G., & Conner, K. N. (1993). Characteristics of Effective Teachers: A Descriptive Study of Perceptions of Faculty and Deaf College Students. American Annals of the Deaf, 138, 252–259. Lartz, M. N., Stoner, J. B., & Stout, L. (2008). Perspectives of Assistive Technology from Deaf Students at a Hearing University. Assistive Technology Outcomes and Benefits, 5, 72–91. Lawson, H. R. (2012). Impact of Interpreters Filling Multiple Roles in Mainstream Classrooms on Communication Access for Deaf Students. Master’s thesis, University of Tennessee. Available Online http://trace.tennessee.edu/ utk_gradthes/1274.

19  The Role of Self-Advocacy in Academic Access …     403

Layton, C. A., & Lock, R. H. (2003). Reasoning and Self-Advocacy for Postsecondary Students with Learning Disabilities. Learning Disabilities, 12, 49–55. Leigh, I. W., Marcus, A. L., Dobosh, P. K., & Allen, T. E. (1998). Deaf/ Hearing Cultural Identity Paradigms: Modification of the Deaf Identity Development Scale. Journal of Deaf Studies & Deaf Education, 3, 329–338. Lock, R. H., & Layton, C. A. (2001). Succeeding in Postsecondary Ed Through Self-Advocacy. Teaching Exceptional Children, 34, 66–71. Long, G. L., Vignare, K., Rappold, R. P., & Mallory, J. (2007). Access to Communication for Deaf, Hard-of-Hearing and ESL Students in Blended Learning Courses. International Review of Research in Open and Distance Learning, 8, 1–13. Luckner, J. L., & Becker, S. J. (2013). Fostering Skills in Self-Advocacy: A Key to Access in School and Beyond. Odyssey: New Directions in Deaf Education, 14, 34–38. Luckner, J. L., & Muir, S. (2002). Suggestions for Helping Students Who Are Deaf Succeed in General Education Settings. Communication Disorders Quarterly, 24, 23–30. Lundström, F. (2008). Mapping Self-Advocacy Initiatives for People with Intellectual Disability in Ireland. Dublin: Citizens Information Board (CIB). Retrieved from http://www.citizensinformationboard.ie/downloads/advocacy/SelfAdvocacyMapping_rpt_Oct2008.doc. Marschark, M., Leigh, G., Sapere, P., Burnham, D., Convertino, C., Stinson, M., et al. (2006). Benefits of Sign Language Interpreting and Text Alternatives for Deaf Students’ Classroom Learning. Journal of Deaf Studies and Deaf Education, 11, 421–437. Marschark, M., Sapere, P., Convertino, C. M., & Pelz, J. (2008). Learning via Direct and Mediated Instruction by Deaf Students. Journal of Deaf Studies and Deaf Education, 13, 546–561. https://doi.org/10.1093/deafed/enn014. Marschark, M., Sapere, P., Convertino, C. M., & Seewagen, R. (2005). Access to Postsecondary Education Through Sign Language Interpreting. Journal of Deaf Studies and Deaf Education, 10, 38–50. https://doi.org/10.1093/deafed/eni002. Mathisen, M. (2013). A Rural School Educator Builds Student Learners Through Access to Curriculum, Self-Advocacy, and Connections to the Deaf Community. Odyssey: New Directions in Deaf Education, 14, 14–16. Maxwell-McCaw, D. L. (2001). Acculturation and Psychological Well-Being in Deaf and Hard-of-Hearing People (Doctoral dissertation). Dissertation Abstracts International, 61(11-B), 6141. George Washington University.

404     M. Nikolaraizi et al.

McCarthy, D. (2007). Teaching Self-Advocacy to Students with Disabilities. About Campus, 12, 10–16. https://doi.org/10.1002/abc.225. McNamara, G. (2009). The Concept of Advocacy for People with Learning Disabilities in Ireland. Unpublished master’s dissertation, National University of Ireland, Galway. Merchant, D. J., & Gajar, A. (1997). A Review of the Literature on SelfAdvocacy Components in Transition Programs for Students with Learning Disabilities. Journal of Vocational Rehabilitation, 8, 223–231. Milsom, A., & Dietz, L. (2009). Defining College Readiness for Students with Learning Disabilities: A Delphi Study. Professional School Counseling, 12, 315–323. Murray, C., Lombardi, A., & Kosty, D. (2014). Profiling Adjustment Among Postsecondary Students with Disabilities: A Person-Centered Approach. Journal of Diversity in Higher Education, 7, 31–44. Murray, C., & Naranjo, J. (2008). Poor, Black, Learning Disabled, and Graduating: An Investigation of Factors and Processes Associated with School Completion Among High-Risk Urban Youth. Remedial and Special Education, 29, 145–160. Napier, J., & Barker, R. (2004). Accessing University Education: Perceptions, Preferences, and Expectations for Interpreting by Deaf Students. Journal of Deaf Studies and Deaf Education, 9, 228–238. Nikolaraizi, M. (2007). Analysing the Concept of Deaf Identity. Hellenic Journal of Psychology, 4, 185–204. Nikolaraizi, M., & Hadjikakou, K. (2006). The Role of Educational Experiences in the Development of Deaf Identity. Journal of Deaf Studies and Deaf Education, 11, 477–492. Noble, H. (2010). Improving the Experience of Deaf Students in Higher Education. British Journal of Nursing, 19, 851–854. https://doi. org/10.12968/bjon.2010.19.13.48863. Nussbaum, D., Waddy-Smith, B., & Doyle, J. (2012). Students Who Are Deaf and Hard of Hearing and Use Sign Language: Considerations and Strategies for Developing Spoken Language and Literacy Skills. Seminars in Speech and Language, 33, 310–321. Oliva, G. A., Lytle, L. R., Hopper, M., & Ostrove, J. M. (2016). From Social Periphery to Social Centrality: Building Social Capital for Deaf and Hard-of-Hearing Students in the 21st Century. In M. Marschark, V. Lampropoulou, & E. K. Skordilis (Eds.), Diversity in Deaf Education (pp. 325–354). London: Oxford University Press.

19  The Role of Self-Advocacy in Academic Access …     405

Palmer, C., & Roessler, R. (2000). Requesting Classroom Accommodations: Self-Advocacy and Conflict Resolution Training for College Students with Disabilities. Journal of Rehabilitation, 66, 37–42. Pennell, R. L. (2001). Self-Determination and Self-Advocacy: Shifting the Power. Journal of Disability Policy Studies, 11. https://doi.org/10.1177/ 104420730101100404. Pocock, A., Lambros, S., Karvonen, D., Test, D. W., Algozzine, B., Wood, W., et al. (2002). Successful Strategies for Promoting Self-Advocacy Among Students with LD: The LEAD Group. Intervention in School and Clinic, 37, 209–216. https://doi.org/10.1177/105345120203700403. Polich, L. (2001). Education of the Deaf in Nicaragua. Journal of Deaf Studies and Deaf Education, 6, 315–326. https://doi.org/10.1093/deafed/6.4.315. Powell, D. R. A. (2011). Floating in the Mainstream: New Zealand Deaf Students’ Learning and Social Participation Experiences in Tertiary Education. Doctoral dissertation, Griffith University, Brisbane, Australia. Retrieved from https://www120.secure.griffith.edu.au/rch/file/50908dc2-8eda-37b0aeb7-913daa656a3a/1/Powell_2011_02Thesis.pdf. Powell, D. R. A., Hyde, M. B., & Punch, R. (2013). Inclusion in Postsecondary Institutions with Small Numbers of Deaf and Hard-ofHearing Students in New Zealand. The Journal of Deaf Studies and Deaf Education. https://doi.org/10.1093/deafed/ent035. Prater, M. A., Redman, A. S., Anderson, D., & Gibb, G. S. (2014). Teaching Adolescent Students with Learning Disabilities to Self-Advocate for Accommodations. Intervention in School and Clinic, 49, 298–305. https:// doi.org/10.1177/1053451213513958. Richardson, J. T. E., Long, G. L., & Woodley, A. (2004). Students with an Undisclosed Hearing Loss: A Challenge for Academic Access, Progress, and Success? Journal of Deaf Studies and Deaf Education, 9, 427–441. Richardson, J. T. E., MacLeod-Gallinger, J., McKee, B. G., & Long, G. L. (2000). Approaches to Studying in Deaf and Hearing Students in Higher Education. Journal of Deaf Studies and Deaf Education, 5, 156–173. https:// doi.org/10.1093/deafed/5.2.156. Richardson, J. T. E., Marschark, M., Sarchet, T., & Sapere, P. (2010). Deaf and Hard-of-Hearing Students’ Experiences in Mainstream and Separate Postsecondary Education. Journal of Deaf Studies and Deaf Education, 15, 358–382. Roberts, E. L., Ju, S., & Zhang, D. (2014). Review of Practices That Promote Self-Advocacy for Students with Disabilities. Journal of Disability Policy Studies, 26, 209–220. https://doi.org/10.1177/1044207314540213.

406     M. Nikolaraizi et al.

Roessler, R. T., Brown, P. L., & Rumrill, P. D. (1998). Self-Advocacy Training: Preparing Students with Disabilities to Request Classroom Accommodations. Journal on Postsecondary Education and Disability, 13, 20–31. Rojas, C. (2007). Students with Learning Disabilities and Their Perceptions in Relation to Their Abilities to Self-Advocate: Implications for Secondary and Post-secondary Education: A Qualitative Analysis. Doctoral dissertation, University of Arizona. Retrieved from http://arizona.openrepository.com/ arizona/bitstream/10150/194493/1/azu_etd_2412_sip1_m.pdf. Ryan, T. G., & Griffiths, S. (2015). Self-Advocacy and Its Impacts for Adults with Developmental Disabilities. Australian Journal of Adult Learning, 55, 31–53. Schmitz, K. L. (2009). The Role of Teachers in the Academic English Literacy Acquisition Experiences of Deaf College Students. L1—Educational Studies in Language and Literature, 10, 71–85. Schreiner, M. B. (2007). Effective Self-Advocacy: What Students and Special Educators Need to Know. Interventions in School and Clinic, 42, 300–304. https://doi.org/10.1177/10534512070420050701. Skinner, M. E., & Lindstrom, B. D. (2003). Bridging the Gap Between High School and College: Strategies for the Successful Transition of Students with Learning Disabilities. Preventing School Failure, 47, 132–137. https://doi. org/10.1080/10459880309604441. Smith, J. A. (2004). Deaf Students in Collegiate Mainstream Programs. Deaf Studies Today!, 1, 298–307. Smithdas, M. J. (1994). Self-Advocacy: Attaining Personal Stature. In T. Carr (Ed.), Self-Advocacy. HKNC-TAC News, 7, 2–3. ERIC Document ED 375560. Stinson, M. S., Elliot, L., & Easton, D. (2014). Deaf/Hard-of-Hearing and Other Postsecondary Learners’ Retention of STEM Content with Tablet Computer-Based Notes. Journal of Deaf Studies and Deaf Education, 19, 251–269. https://doi.org/10.1093/deafed/ent049. Stinson, M. S., Liu, Y., Saur, R., & Long, G. (1996). Deaf College Students’ Perceptions of Communication in Mainstreamed Classes. Journal of Deaf Studies and Deaf Education, 1, 140–151. Stodden, R. A., Conway, M. A., & Chang, K. B. T. (2003). Findings from the Study of Transition, Technology and Postsecondary Supports for Youth with Disabilities: Implications for Secondary School Educators. Journal of Special Education Technology, 18, 29–44.

19  The Role of Self-Advocacy in Academic Access …     407

Stoner, J. B., Angell, M. E., House, J. J., & Goins, K. (2006). SelfDetermination: Hearing the Voices of Adults with Physical Disabilities. Physical Disabilities: Education and Related Services, 25, 3–35. Stuntzner, S., & Hartley, M. (2015). Balancing Self-Compassion with SelfAdvocacy: A New Approach for Persons with Disabilities. Annals of Psychotherapy and Integrative Health, 12–28. Retrieved from http://www. annalsofpsychotherapy.com/articles/2015/PDF/Stuntzner_Hartley.pdf. Test, D. W., Fowler, C. H., Brewer, D. M., & Wood, W. M. (2005a). A Content and Methodological Review of Self-Advocacy Intervention Studies. Exceptional Children, 72, 101–125. Test, D. W., Fowler, C. H., Wood, W. M., Brewer, D. M., & Eddy, S. (2005b). A Conceptual Framework of Self-Advocacy for Students with Disabilities. Remedial and Special Education, 26, 43–54. https://doi.org/10 .1177/07419325050260010601. Test, D., & Neale, M. (2004). Using the Self-Advocacy Strategy to Increase Middle Graders’ IEP Participation. Journal of Behavioral Education, 13, 135–145. Thoma, C. A., & Wehmeyer, M. L. (2005). Self-determination and the Transition to Postsecondary Education. In E. E. Getzel & P. Wehman (Eds.), Going to College: Expanding Opportunities for People with Disabilities (pp. 49–68). Baltimore: Paul H. Brookes. Trainor, A. A. (2005). Self-Determination Perceptions and Behaviors of Diverse Students with LD During the Transition Planning Process. Journal of Learning Disabilities, 38, 233–249. Tsach, N., & Most, T. (2016). The Inclusion of Deaf and Hard-of-Hearing Students in Mainstream Classrooms: Classroom Participation and Its Relationship to Communication, Academic, and Social Performance. In M. Marschark, V. Lampropoulou, & E. K. Skordilis (Eds.), Diversity in Deaf Education (pp. 335–380). London: Oxford University Press. Van Reusen, A. K., & Bos, C. S. (1994). Facilitating Student Participation in Individualized Education Programs Through Motivation Strategy Instruction. Exceptional Children, 60, 466–477. Van Reusen, A. K., Deshler, D. D., & Schumaker, J. B. (1989). Effects of a Student Participation Strategy in Facilitating the Involvement of Adolescents with Learning Disabilities in Individualized Education Program Planning Process. Learning Disabilities, 1, 23–34. Walker, A. R., & Test, D. W. (2011). Using a Self-Advocacy Intervention on African American College Students’ Ability to Request Academic Accommodations. Learning Disabilities Research & Practice, 26, 134–144. https://doi.org/10.1111/j.1540-5826.2011.00333.x.

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Wehman, P., & Kregel, J. (2004). Functional Curriculum for Elementary, Middle, and Secondary Age Students with Special Needs (2nd ed.). Austin, TX: Pro-Ed. Wehmeyer, M. L. (2014). Self-Determination: A Family Affair. Family Relations, 63, 178–184. Wooten, P. M. (2014). A Phenomenological Study of Online Learning for Deaf Students in Postsecondary Education: A Deaf Perspective. Doctoral dissertation, Liberty University. Retrieved from http://digitalcommons.liberty.edu/ cgi/viewcontent.cgi?article=1880&context=doctoral.

20 Identification of Specific Learning Disorders and Specific Language Impairment: Issues and Experience in India Pritha Mukhopadhyay, Lipica Bhattacharya and Prasanta Kumar Roy

Introduction Specific Learning Disorder (SLD) is a common developmental disorder that affects a sizeable portion of the school-aged population and has a serious impact on child’s education and psychosocial outcome (Tomblin et al. 1997; Snowling 2000). A person with SLD is characterized by average or above average intelligence with adequate exposure to learning situation, having no sensory problem (like visual impairment or hearing impairment). They have age-appropriate adaptive ability in other domains of life. It is a heterogeneous disorder with disparate cognitive and neuropsychological underpinning (Fenwick et al. 2016). P. Mukhopadhyay (*)  Department of Psychology, University of Calcutta, Kolkata, India L. Bhattacharya  Apollo Gleneagles Hospital, Kolkata, India P. K. Roy  Department of Clinical Psychology, Institute of Psychiatry, Kolkata, India © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_20

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World Health Organization (WHO 1992) identified Specific Developmental Disorders of Scholastic Skills or SLD as those conditions where patterns of scholastic skills acquisition are interrupted since early stages of development and this cannot be attributed to lack of adequate opportunity to learn or to any brain trauma. According to DSM-V (APA 2013), the very definition of SLD considers at least three conditions under this generic term of SLD, namely Specific Disorder in Reading (SRD), Specific Disorder in Written Expression (SWD), and Specific Disorder in Mathematics (SMD). Specific Language Impairment (SLI) is another developmental disorder which also causes scholastic difficulties. SLI manifests itself as a difficulty in acquiring and comprehending language despite otherwise normal intellectual functioning, normal hearing, and an adequate learning environment (Leonard 1998). This condition manifests as deficits in semantic, syntactic, morphological, phonological, and lexical abilities along with difficulties in pragmatics of language. It is a form of developmental language disorder in which children demonstrate unexpected difficulties with the acquisition of spoken language. There is substantial literature now showing that children with SLI are at considerable risk for social and behavioral problems (Beitchman et al. 1986; Rice et al. 1991) as well as educational difficulties (Catts 1993; Hall and Tomblin 1978). This is a condition that overlaps with SLD due to their shared deficit in underlying cognitive processes with an adverse impact on academic performance. It may be the reason why Indian Association of Clinical Psychologists (IACP) has emphasized a lot on taking a detail case-history while diagnosing SLD (John et al. 2013).

Objectives • Understanding of the dilemma in the assessment and diagnosis associated with SLD and SLI in Indian context. • Keeping in mind the overlapping symptoms between SLI and SRD, a type of SLD, which overrepresented the SLD population, this is an attempt to explore the deficit in underlying processes of cognition, perceptual motor and language in SRD and SLI with existing tools

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and with tasks of the tool currently in the course of development by the authors (Mukhopadhyay et al. 2014) for differential diagnosis between SRD and SLI. A narrative approach has been selected starting with case examples and test findings obtained in our research to reach these objectives.

Eye-Opener Soham, a ten-year, eleven-month-old boy, reading in grade-V, was brought by his parents with the complaints of deterioration in study due to frequent errors in grammar, careless errors in mathematics, poor recall of learned facts. Parents attributed it to the child’s low ­motivation to study and inattentiveness. The child was assessed in a psychiatric clinic for Attention Deficit Hyperactive Disorder (ADHD) and was put on anti-ADHD medicines. He responded well to the medicines initially but the aforesaid problems regarding scholastic skills persisted. In the primary classes up to grade three he fared well in examinations but with increasing content of the syllabus his performance dipped. When his parents came to the authors, a detailed assessment was planned and the child was found to have average intelligence. The complaints were of difficulty in learning to comprehend, to express in verbal and written forms and poor recall of learnt materials, though case-history revealed his adequate age-appropriate academic exposure. The history indicated the necessity of assessment of the child for SLD. The assessment was done on NIMHANS Battery for SLD (Kapur et al. 2002). It revealed that the boy had average reading, spelling, computation skills, but significant difficulty in comprehension and written expression skills. Behavior Rating Inventory of Executive Function (BRIEF, Gioia et al. 2000) revealed his difficulties in executive functions of planning, response inhibition, and set-shifting. He was also referred for language assessment to speech and language therapists who assessed his language. The clinical evaluation and thorough assessment of intelligence and language parameters detected him as having SLI with deficit in semantic language.

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Trina’s grade-II annual examination performance was shocking for her parents. She was well-prepared but her examination script did not reveal so. Her performance was good in class-I. Though she was finishing most of her work in class but in grade-II she would often attempt only fill in the blanks and single word answers during examination. On probing she said the questions look different in examination. She is seven years three months old when referred for vision testing followed by IQ assessment. She had no refractory error and had average intellectual functioning. Considering her scholastic difficulties, SLD assessment was conducted that revealed mild difficulty in reading but gross difficulty in auditory and reading comprehension. At home, she was usually provided with questions and answers which she used to memorize. May be based on this memorized image, in the previous class (grade-I) she used to write in examination by recognizing the learnt questions as sentence image and the answers also came into her mind in an image form. In class-II, the questions are often reframed during examination. Her poor reading and comprehension skills became a hindrance to meet this requirement. Since she studied in an English medium school though her mother tongue is Bengali, she showed signs of reading difficulty and slow acquisition of English language. An educative supposition based on her performance in test situation suggests that had she been in a Bengali medium school, she could have had difficulty only in reading but not in language comprehension as now she faces due to second language-based teaching-learning process. Both these cases highlight how much confusing the diagnosis of SLD can be. They might be understood as if having a completely different types of neurodevelopmental conditions (like in Soham’s case, he was initially identified as ADHD, then SLD and finally, his problems could be explained with SLI). The situation of Trina might be more confusing. If clinician misses her difficulty with second language, she might be identified as having language disorder though that is not the case. Here the role of detail history can be understood. The third case is another example showing how a person with SLD when put in a school with the medium of instruction in second language which is not the mother tongue of the vulnerable child and when it is not identified and properly intervened, it can culminate in psychological problems for which one has to suffer for the rest of his/her life.

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It is a story of Monika, a young lady of twenty-four years who came to visit doctors to cure her persisting severe backache. She was assessed for all types of neurological, orthopedic conditions and intervened for the same. With no persisting progress she was referred to psychiatrist to rule out somatization with depression. She was diagnosed to have depression. She was put on anti-depressants and sent for psychotherapy. In her sessions with the therapist it was revealed that she had not completed school, while all her siblings were university graduates. They were working and settled in their personal lives. Old report cards revealed consistent poor performance in language-based subjects since grade-II. She had repeated two grades and had to leave school in gradeVIII. She studied in an English medium school. She belonged to a Rajasthani-speaking Jain family. She said she realized that her inability to read was the cause for her dropping out of school but she did not know how to help herself. She focused on her craft skills and mastered it well but could not get a degree or formal training as she did not have a school-leaving certificate. She belongs to a business family but her pain was a hurdle for them to think in terms of self-employment which led her to be at home. She was sent for an SLD and IQ assessment that revealed her average intellectual functioning with specific reading and spelling disorder.

Sociocultural and Cognitive Aspects of Learning Problems Scientific literatures have identified lots of overlapping conditions between SLD (irrespective of its category) and SLI (Bishop and Snowling 2004; Catts et al. 2005). Professionals dealing with them, especially in India, have to be more cautious while assessing and labeling SLD and SLI due to two important factors. At first, presence of multilingualism in society that compels one to be exposed to more than one language even when the child is vulnerable to cope with it. Secondly, poor socioeconomic condition which is a hindrance to adequate learning exposure. Confusion in differential diagnosis of SLD and

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SLI from the scholastically backward children is primarily due to multilingualism and underexposure. India is an ancient country with a history of metamorphic evolution of languages and scripts. Popular language like Sanskrit was written in Devanagari script as well as in Tamil script. South Indian languages are a mix of Tamil and Sanskrit. In medieval India, Persian was the official language written in Arabic script leading to evolution of Urdu which is a mix of Persian and Hindustani. Many more such languages have evolved, with scripts or without scripts (Agnihotri 2007). In India, formal education is imparted in 24 languages. Country with such varied language systems demands a high expertise of the clinician in language, cognitive and scholastic skills required for academic persuasion, to assess and specify the exact cause of scholastic difficulties among persons with learning disabilities. A few tools to assess SLD in regional languages have been developed but many more are needed. India, as a nation, has gone through the transition of having no legal recognition of SLD to a nation with the new Rights of Persons with Disabilities Act, 2016 (RPWD Act 2016) that promises to provide all the required services to people with disabilities. Yadav and Agarwal (2008) reported prevalence of SLD as 2.25% in rural Allahabad of India. Padhy et al. (2016) in a recent study from a city of North India reported prevalence as 3.08%. Other recent studies from different corners of India observed a rise in prevalence (4–8%) of SLD in last 10 years (Arun et al. 2013; Dhanda and Jagawat 2013; Mehta 2011). Government of India had also recognized the different need of the SLD children. The RPWD Act, 2016 has included more categories of “Children With Special Educational Needs” (CWSEN). This revised act includes SLD as a disabling condition and has specified NIMHANS Index for Specific Learning Disability prepared by Kapur et al. (2002) as the assessment tool to certify this condition. This tool is in English and Kannada, leaving SLD population in other languages in a state of despair. In India, researchers have tried to identify SLD by developing a range of scales. Kapur et al. (2002) developed NIMHANS Index for SLD that assesses pre-academic and academic skills of school going children. Swarup and Mehta (1991) came with a Behavioural Checklist

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for Screening the Learning Disabled, whereas Sankaranarayana (2003) used Reading Achievement Tests that focuses on identification of problem associated only with reading. Recently, the IACP (John et al. 2013) came up with a practice guideline for assessment of SLD. IACP recommended that a proper developmental history along with assessment of cognitive ability by using standardized intelligence test to be more pertinent in India as primary assessment for suspected SLD. Subsequently, assessment of children’s academic achievement (e.g., using NIMHANS Index for SLD) and information processing skills are to be planned to reach to a diagnosis as per IACP guideline. As mentioned above, India is a multilingual country and the regional languages are very rich and maintain their own identity. Assessment of SLD in regional languages is of utter necessity. Also children in India irrespective of their mother tongue are mostly exposed to the medium of instruction as either in English or in Hindi. English gets a priority as it is almost a universal language and essential for higher education in country and abroad; good books are written in English and English is a necessity at all levels of office work. Fluent English-speaking person is prioritized in selection at a higher position in any office or institute. Next to it is Hindi which is considered as the national language. There is also a significantly large population who often study in the official language of the state which is not same as their mother tongue. For example, medium of instruction in schools for Santal- and Bodo-speaking children of West Bengal is primarily Bengali. School education in India is also affected due to poor health condition, undiagnosed sensory impairment, first-generation learning, as well as untreated psychological problems. These causes also explain ability-achievement discrepancy and to be ruled out to diagnose SLD or SLI. Considering the skill deficits in SLI with language acquisition, most prominently for the second language (Grimm and Schulz 2014), or SLD in scholastic skills (like reading, comprehension, verbal and written expression, spelling and mathematics) is the resultant of deficit in one or more processes of learning as observed by Booth et al. (2007). Some of these underlying processes are discussed below.

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In Search of Behavioral Neurology The Research Acquisition of the scholastic skills requires the brain to process multimodal information and to integrate into a whole in order to form a pattern and to execute upon it. The information processing theory attempts to describe and understand how sensory input is perceived, transformed, reduced, elaborated, stored, retrieved, and used by human brain. This machinery includes attention mechanisms for bringing in information, working memory for actively manipulating information and long-term memory for passively holding information so that it can be used on purpose in future (Potter 2017). Unfortunately, there is a lack of appropriate tools in many languages in India that can tap down the underlying information processing deficit at early age of education. To fill up this gap, the authors of this paper took a project for early identification of the cognitive deficits associated with neurodevelopmental conditions with special emphasis on persons with SRD and SLI. Some of the preliminary findings with the summary of methods of this work have been presented here to explain the behavioral neurology of the conditions. In course of this research, two clinical groups (SLD and SLI) and a non-clinical group have been investigated. In SLD, the SRD representation was more compared to any other types of SLD. A cross-sectional comparison of SRD and SLI and a community control has been reported by the authors Mukhopadhayay et al. (2018). The following methodology has been adopted in our study.

Method Total of 60 children participated in the study. All had Bengali as mother tongue and were attending English medium schools. The clinical sample consisted of children with a diagnosis of SRD but no language disorder (n = 15, male-13, female-2, mean age 6.07 ± 0.80, IQ 103.06 ± 7.77) and Language Disorder (SLI) with no reading disorder (n = 15,

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male-12, female-3, mean age 6.33 ± 0.82, mean IQ 98.00 ± 2.26) as per DSM-V (APA 2013). They were selected by trained psychologist, special educators and speech and language pathologist. The total research has been carried out in Department of Psychology, University of Calcutta in collaboration with the speech therapists of private speech therapy clinics and special education centers. In the departmental clinical setup, they were administered Binet-Kamath Test (Kamat 1967) to assess IQ and those who scored 85 and above were administered NIMHANS-SLD battery (Kapur et al. 2002), Receptive and Emergent Expressive Language Test-3rd Edition (REEL-3, Bzoch et al. 2003) and Cognitive & Language Tasks (Mukhopadhyay et al. 2014). Another group of 30 children between 5 and 9 years of age were selected from English medium schools of Kolkata as healthy community control, after being screened with Behavioural Checklist for Screening the Learning Disabled (BCSLD, Swarup and Mehta 1991) to ensure that they did not have any kind of SLD. Since tools were in different languages clinical acumen was relied upon for selection. The tasks developed by the authors were in regional language and were used for assessment diagnosis and intervention programming.

Research Outcome On a verbal learning task, lists of words were presented to the participants for recall. The nature of recalling among the children with SLI showed their difficulty in recalling the word when preceded by many other words compared to the SLD and community control indicating their greater vulnerability to proactive interference. The SLI, due to delayed processing of the information, engaged full attentional resources for a considerable period of time on the first sets of stimuli. Thereby, when the next sets of stimuli entered in their information processing channel, the latter items remained unattended (as attention resource is not abundant in us) and unknowingly ignored with the possibility of omission of the processing of the presented stimuli. This interpretation gets confirmed from their high omission error in the auditory attention task. This failure of subsequent series of information to follow the

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preceding stimuli within a short period of time perhaps prevents the nervous system from initiating a persistent synaptic strength to form the required long-term potentiation (LTP). Thus, the processed information does not become prominent enough to get the status of the signal value. The finding suggests that in real-life situation, this deficit interferes with their automatic processing of language which is an essential part of language acquisition as it demands automatic retrieval to utilize on purpose. The poor performance of the children with SLI on auditory comprehension task suggested their difficulty in simultaneous processing. The task had the demand on listening to a multiple-step instruction and its execution. The finding gets confirmation from the following observation. In Bengali language, suffixes in verbs change with change in tense for, e.g., lekha-write (root word), present tense: likh+chhi, past tense: likhh+ e+chhi, and future tense: likh +bo requires ability for maintenance of continuous simultaneous connectivity between the experience and required change in language structure for effective use of language. Owing to deficit in simultaneous processing, it is difficult for the SLI to identify and comprehend the constant change in the patterns of morphology and syntax following morphological and syntactic rules of the language along with the corresponding changes in ongoing experience, barring them to make the language a part of the procedural learning which is essential to be well equipped in language skills. In case of SRD, lesser deficit in simultaneous processing of auditory verbal information and in procedural learning compared to the SLI may have acted as buffer for them to develop SLI. However, SRD showed difficulty in developing visual gestalt of the word as assessed on cognitive, language, and scholastic assessment tasks in this study (Mukhopadhyay et al. 2018). The SRD needed to invest much more attention onto the decoding task itself (either from concrete structure of each letter to form the letter or from letter to form word) leaving very little resource left to be utilized for constructing meaning of the word as observed by many researchers (Reed and Vaughn 2010; Elosúa et al. 2013). The SRD’s impairment in forming the visual gestalt prevented them from achieving holistic reading and confines them to reading words by letter. But meaning is inherent in the word and not

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in the letters that adversely affect their reading comprehension (Reed and Vaughn 2010). The assessment tool developed by the authors of this study, has revealed phonological memory deficit in SRD perhaps owing to impairment in formation of stable word—image. The lack of integration between visual image and the phonological image interfered both the decoding as well as the phonological and visual processing; thus, substantiating the impairment in automaticity in reading in SRD (Taylor et al. 2013; Lam et al. 2017).

Summing Up In case of both SRD and SLI conditions, deficit in simultaneous processing was present. SLI had difficulty predominantly in simultaneous processing of auditory information, whereas, SRD in visual information. Both groups had difficulty in connecting meaning to letter and words. In case of SLI difficulty was in attaching meaning and responding to words heard due to dissociation with their dynamic experience preventing verbal language to be the part of their procedural learning. In case of SRD though deficit in auditory processing in comparison with normal peers was noted but no deficit in procedural learning helped them to associate their dynamic experience to learning unlike their SLI peers.

Intervention from Assessment For Soham, Individualized Education Plan (IEP) was designed by the special educator along with language therapist to be executed by parents. His intervention program incorporated exposure to cognitive-linguistic tasks and scholastic skill training. His performance was recorded every week for four months. No significant change was noted in school performance during the intervention phase of the first two months, but with consistent intervention his performance showed a positive change by the end of third month. School reported his improvement in classroom interaction and in written expression. After four months, his

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performance was recorded every month for 18 months followed by only home-based training for another year. At present, he is in grade-VIII and is coping in school with mild difficulties of inattention. This reveals that the scholastic performance that has been adversely affected in child with SLI can be improved with judiciously planned interdisciplinary intervention program. For Trina, an IEP was made in consultation with her parents and home tutors. She was put on an oral English language training along with reading training with special focus on auditory-memory tasks and comprehension. Her training was executed by a special educator and speech language pathologist. Her performance was recorded every week for twelve weeks followed by monthly evaluation of progress for next six months. For the next nine months, she was evaluated every third month to check her academic progress on the skills she was being trained. With input in oral English language, she showed progress in class work by the end of the first four weeks and by ninth month her performance matched the class average. However, she achieved age-appropriate reading efficiency not before eighteenth month. Now she is in class-V and her scholastic skills are at par with her class average. This case-history and assessment revealed that a person with SRD gets adversely affected because of poor reading skills and deficit in language comprehension. The casework reveals that the clinician when focused on both reading and language intervention, it speeded up the process of coping with a long-term positive impact. For Monika, a trial of remedial training was done for three months but she lost motivation to practice the skills as she said it was difficult for her to learn correct English as she has got used to telegraphic phrases in English. She was, however, later rehabilitated as a volunteer in a special school to help the vocational unit (craft items). She was productive and was absorbed as an assistant to the craft teacher. After three months into her work, her pain symptoms gradually reduced and by six to eight months she was off all kinds of painkillers and muscle relaxants. By one year, she was off anti-depressants too. Though it cannot be ascertained that her SLD was the cause of her present psychiatric and pain problems but definitely it is an important contributory factor to her vulnerability. Now she is married with two kids. Her pain

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symptoms relapsed temporarily after the birth of her first child. She was put back on anti-depressants and was put on therapy. Presently she is a happy mother of two with only a lingering anxiety about her children not inheriting her difficulties.

Conclusion Identifying the underlying deficits in mechanisms of information processing in persons with SLD can help in better intervention planning to improve their performance that subsequently help to regain their lost self-esteem that happens in consequence of this “wait-to-fail” approach (Vaughn and Fuchs 2003). Late identification results in the delayed diagnosis of SLD/SLI only when it is reflected through poor scholastic performance at 3rd and 4th grade levels in USA (Lyon et al. 2006), and much later in India where awareness is remarkably less and identification of this condition is mostly overlooked. The delay causes loss of valuable instructional time that would likely to make a significant difference in gradient of stepping up for a child with a deficit in specific cognitive function in SLD. Lack of awareness of the community about children with SLD or SLI, lack of expertise of the teachers and even professionals to detect and impart training to the SLD or SLI children, poor insight of the teachers when and where to refer these children for detection and intervention are major hurdles for diagnosis of children with SLD and SLI. Another major issue is providing no objective instruction to the schools regarding the implementation of government rules that assures assistance to the SLD children in regular class and at the board level of examination. These are the scenario in Indian school system. Poor teacher–student ratio in the schools in most parts of the country is another feature that disables the teachers to attend to the individual problem of a student and to cater according to their need. The root of the problem for the children’s poor academic performance is never addressed. Thereby, neither the parents nor the teachers develop any notion that the academic under-achievement could be the outcome of any disability (unless due to gross intellectual deficit).

422     P. Mukhopadhyay et al.

The poor academic progress is rather perceived as the outcome of the child’s lack of motivation and will. Though this poor awareness is more perceptible in semi-urban and rural schools but there they are allowed to be in the system of education though not intervened. On the other hand, very stringently high standards are set by parents and school authorities as an index of academic achievement in urban areas. Often parents and schools either blame each other for failure or blame the child. The children are not sent to the developmental therapists like psychologists, speech language pathologist, special educators at an appropriate time for evaluation so that the intervention can be utilized by children when they have maximum neuroplastic flexibility and may improve within the range of their plasticity limit. In other countries, the special educators, speech language pathologists, and psychologists are the integral part of the very education program of the school but the scenario is different in most of the school systems in India. The openness in the school system which is present in the developed countries was also present in India not only at pre-colonial time but also even few decades back when the students were not undervalued to move in their own pace in the school. Now with the special focus on the educational belief of readying children only for adapting to the competitive world and also due to insecurity of the parents regarding child’s failure to survive academically (which is very much linked to getting job and other type of financial independence in future) compel them to emphasize more on evaluation and performance in examination rather than on the process of learning. Thus the age milestones for acquiring scholastic skills in terms of “must be educated” through development of scholastic skills within a given period of time in an expected pace cannot be the criteria in modern era for a lifelong disorder. This can lead to more false positive diagnosis that is the risk of diagnosing a child with maturational lag as SLD. Also the development of a tool for early detection of SLD in regional language with an understanding of the deficit in underlying cognitive and language processing and scholastic skills may enhance their skill at least at a low normal range enabling them to be with the mainstream. Moreover, children belonging to the same category of SLD might have

20  Identification of Specific Learning Disorders …     423

a different pattern of deficit among one and other. Thus the traditional expectation of considering a condition as disability when it is 2 standard deviation (SD) below the norm may not be applicable here for all the domains of cognition, perception, motor, or language. It does not mean that those domains are functioning at an optimal level when it is within 1 or 1.5 deviation level. It could have significant contribution in causing deficit in the child in the scholastic domain of the tool which is functioning below 2 SD level. Early detection may help them to get early certification that in turn helps in receiving all the assistance legally due to them and prevents secondary psychological difficulties. We need an education system that aims to cater to the needs of all students. It is necessary to serve their bare minimum necessity to help these children walking through life without being dependent onto others as far as practicable.

References Agnihotri, R. K. (2007). Identity and Multilinguality: The Case of India. In A. Tsui & J. Tollefson (Eds.), Language Policy, Culture and Identity in Asian Contexts (pp. 185–204). Mahwah, NJ: Lawrence Erlbaum. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Arun, P., Chavan, B. S., Bhargava, R., Sharma, A., & Kaur, J. (2013). Prevalence of Specific Developmental Disorder of Scholastic Skill in School Students in Chandigarh, India. The Indian Journal of Medical Research, 138, 89–98. Beitchman, J. H., Nair, R., Clegg, M., Ferguson, B., & Patel, P. G. (1986). Prevalence of Psychiatric Disorders in Children with Speech and Language Disorders. Journal of the American Academy of Child Psychiatry, 25(4), 528–535. Bishop, D. V. M., & Snowling, M. J. (2004). Developmental Dyslexia and Specific Language Impairment: Same or Different? Psychological Bulletin, 130(6), 858–886. Booth, J. R., Wood, L., Lu, D., Houk, J. C., & Bitan, T. (2007). The Role of the Basal Ganglia and Cerebellum in Language Processing. Brain Research, 1133, 136–144.

424     P. Mukhopadhyay et al.

Bzoch, K. R., League, R., & Brown, V. L. (2003). Receptive-Expressive Emergent Language Test Third Edition (REEL-3). St. Antonio: Pearson. Catts, H. W. (1993). The Relationship Between Speech-Language Impairments and Reading Disabilities. Journal of Speech, Language, and Hearing Research, 36(5), 948–958. Catts, H. W., Adolf, S. M., Hogan, T. P., & Weismer, S. E. (2005). Are Specific Language Impairment and Dyslexia Distinct Disorders. Journal of Speech, Language, and Hearing Research, 48, 1378–1396. Dhanda, A., & Jagawat, T. (2013). Prevalence and Pattern of Learning Disabilities in School Children. Delhi Psychiatry Journal, 16(2), 386–390. Elosúa, M. R., García-Madruga, J. A., Gil, L., Gómez-Veiga, I., & Villa, J. O. (2013). Improving Reading Comprehension: From Metacognitive Intervention on Strategies to the Intervention on Working Memory Executive Processes. Universitas Psychologia, 12(5), 1425–1438. Fenwick, M. E., Kubas, H. A., Witzke, J. W., Fitzer, K. R., Miller, D. C., Maricle, D. E., et al. (2016). Neuropsychological Profiles of Written Expression Learning Disabilities Determined by Concordance-Discordance Model Criteria. Applied Neuropsychology: Child, 5(2), 83–96. Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2000). Test Review Behavior Rating Inventory of Executive Function. Child Neuropsychology, 6(3), 235–238. Grimm, A., & Schulz, P. (2014). Specific Language Impairment and Early Second Language Acquisition: The Risk of Over-and Underdiagnosis. Child Indicators Research, 7(4), 821–841. Hall, P. K., & Tomblin, J. B. (1978). A Follow-Up Study of Children with Articulation and Language Disorders. Journal of Speech and Hearing Disorders, 43(2), 227–241. John, A., Sadasivan, A., Sukumaran, B., Bhola, P., David, N. J., & Manickam, L. S. S. (2013). Practice Guidelines: Learning Disability. Indian Journal of Clinical Psychology, 40(1), 65–68. Kamat, V. V. (1967). Measuring Intelligence of Indian Children (4th ed.). London: Oxford University Press. Kapur, M., John, A., Rozario, J., Oommen, A., & Uma, H. (2002). Assessment of Specific Learning Disabilities (Nimhans Battery for Sld). In U. Hirisave, A. Oommen, & M. Kapur (Eds.), Psychological Assessment of Children in the Clinical Setting. Bangalore: Vinayaka Offset Printers. Lam, S. S., White-Schwoch, T., Zecker, S. G., Hornickel, J., & Kraus, N. (2017). Neural Stability: A Reflection of Automaticity in Reading. Neuropsychologia. http://dx.doi.org/10.1016/j.neuropsychologia.2017.07.023.

20  Identification of Specific Learning Disorders …     425

Leonard, L. B. (1998). Children with Specific Language Impairment. Language, Speech, and Communication. Cambridge, MA, US: The MIT Press. Lyon, G. R., Fletcher, J. M., Fuchs, L., & Chhabra, V. (2006). Learning Disabilities. In E. Mash & R. Barkley (Eds.), Treatment of Childhood Disorders (3rd ed., pp. 512–591). New York: Guilford. Mehta, M. (2011). Use and Abuse of Specific Learning Disability Certificates. Industrial Psychiatry Journal, 20(2), 77–78. https://doi. org/10.4103/0972-6748.102471. Mukhopadhayay, P., Bhattacharya, L., & Roy, P. K. (2018). A Comparative Study on Deficits of Cognitive Processing Skills Among Children with Specific Reading Disorder and Specific Language Impairment. Asia Pacific Journal of Advanced Research, I(LVIV), 331–339. Mukhopadhyay, P., Roy, P. K., & Bhattacharya, L. (2014). Development of Diagnostic Tool for Specific Learning Disability Based on Information Processing Approach for Early Detection. Unpublished Research Project, University of Calcutta. Padhy, S. K., Goel, S., Das, S. S., Sarkar, S., Sharma, V., & Panigrahi, M. (2016). Prevalence and Patterns of Learning Disabilities in School Children. The Indian Journal of Pediatrics, 83(4), 300–306. Potter, C. (2017). Developing Automaticity in Children with Learning Disabilities: A Functional Perspective Part Two: Programme Methods and Materials. In Learning Disabilities—An International Perspective. InTech. Reed, D. K., & Vaughn, S. (2010). Reading Interventions for Older Students. In T. A. Glover & S. Vaughn (Eds.), Response to Intervention: Empowering All Students to Learn. A Critical Account of the Science and Practice (pp. 143–186). New York, NY: Guilford Press. Rice, M. L., Sell, M. A., & Hadley, P. A. (1991). Social Interactions of Speech, and Language-Impaired Children. Journal of Speech, Language, and Hearing Research, 34(6), 1299–1307. Sankaranarayanan, A. (2003). Cognitive Profiles of Children Learning to Read English as a Second Language. In P. Karanth & J. Rozario (Eds.), Learning Disabilities in India (pp. 77–90). New Delhi: Sage. Snowling, M. J. (2000). Dyslexia (2nd ed.). Oxford: Blackwell. Swarup, S., & Mehta, D. H. (1991). Behavioural Checklist for Screening the Learning Disabled. Mumbai: S.N.D.T. Women’s University Centre of Special Education, Juhu Campus. Taylor, J. S., Rastle, K., & Davis, M. H. (2013). Can Cognitive Models Explain Brain Activation During Word and Pseudoword Reading? A

426     P. Mukhopadhyay et al.

Meta-Analysis of 36 Neuroimaging Studies. Psychological Bulletin, 139, 766– 791. https://doi.org/10.1037/a0030266pmid:23046391. The Rights of Persons with Disabilities Act. (2016). Gazette of India (ExtraOrdinary). Available from http://www.disabilityaffairs.gov.in/upload/ uploadfiles/files/RPWD/ACT/2016.pdf. Tomblin, J. B., Records, N. L., Buckwalter, P., Zhang, X., Smith, E., & OBrien, M. (1997). Prevalence of Specific Language Impairment in Kindergarten Children. Journal of Speech, Language, and Hearing Research, 40, 1245–1260. Vaughn, S., & Fuchs, L. S. (2003). Redefining Learning Disabilities as Inadequate Response to Instruction: The Promise and Potential Problems. Learning Disabilities Research and Practice, 18, 137–146. World Health Organization. (1992). The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva: World Health Organization. Yadav, D., & Agarwal, V. (2008). A Baseline Study of Learning Disabilities: Its Prevalence, Teacher Awareness and Classroom Practices. In K. Thapa, G. M. Aalsvoort, & J. Pandey (Eds.), Perspectives on Learning Disabilities in India (pp. 221–238). New Delhi: Sage.

21 Developing Inclusive Education Policy in Sierra Leone: A Research Informed Approach Richard Rose, Philip Garner and Brenna Farrow

Introduction The provision of education that is equitable and addresses the needs of all learners has been identified as a priority internationally (Mitchell 2005; European Agency for Development in Special Needs Education 2009). The Jomtien World Conference on Education for All (UNESCO 1990) set the goal for achieving universal primary education (EFA) and served as a catalyst for an international movement toward inclusive practice. The subsequent Salamanca Statement and Framework for Action on Special Needs Education (UNESCO 1994) built upon this early initiative and promoted principles that have been endorsed in further international agreements and national policies. The United Nations Convention on the Rights of Persons with Disabilities (2006) has specifically focused upon a potentially vulnerable population and has placed an emphasis upon the need to ensure that all individuals, R. Rose (*) · P. Garner · B. Farrow  University of Northampton, Northampton, UK e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_21

427

428     R. Rose et al.

regardless of need or ability, gain access to education and social opportunities alongside their able bodied peers. More recently, the UNESCO Policy Guidelines on Inclusion in Education (2009) reinforced educational, social and economic justification of the need of nation states to work toward inclusive practices, so that all children are educated together. The international literature in support of inclusive education is considerable (Armstrong et al. 2010; Rose 2010; Timmons and Walsh 2010). It covers all aspects of policy and practice, including educational leadership (Hoppey and McLeskey 2013; ASEPA 2017), curriculum planning (Davis and Florian 2004; Tilstone and Lacey 2000), identification and assessment (Engh and Rose 2014; Galloway et al. 2013), training and professional development (Dwyfor-Davies and Garner 1997; Rose and Garner 2010), inter-agency collaboration (Todd 2007; Lacey 2012) and extensive coverage of the challenges, and controversies that characterize the educational landscape in the twenty-first century (Hornby et al. 2013; Norwich 2008). This chapter reports on the response of administrators in one country, Sierra Leone, to the demands to provide a more inclusive approach to education that aims to ensure access to all learners, regardless of their needs or abilities. In particular it identifies a process which attempted to support a democratic and participatory approach to understanding the current situation of children with disabilities in Sierra Leone and their families, and a pathway for the development of inclusion policy.

Sierra Leone: The National Context Sierra Leone, located on the Atlantic Coast of West Africa has a population of approximately 6.1 million. Having gained independence from the UK in 1961 the country has developed an economy based upon mineral extraction and agriculture. However, despite being rich in natural resources which should provide significant economic benefits, exploitation, corruption and poor planning means that the majority of the population live in poverty (Maconachie and Binns 2007). Education in Sierra Leone is officially compulsory for all children

21  Developing Inclusive Education Policy in Sierra Leone …     429

between the ages of six and fifteen, though this has never been achieved and a significant proportion of children in this age group are not enrolled in school. Acivil war (1991–2002) resulted in the destruction of almost 1300 schools, a situation that continues to inhibit opportunities to provide education for all children.

Education for Children with Disabilities in Sierra Leone In order to understand the current situation for children with disabilities in Sierra Leone a review of the literature was undertaken. This focused upon documents which provided within country data and that met a criterion for a high weight of evidence (Gough et al. 2012). This process revealed that only a limited corpus of literature related to special and inclusive education has been generated within Sierra Leone, a situation that is not surprising given the relatively recent attention given to inclusion as a concept in Africa (Mariga et al. 2014). Having completed this nation specific review, it was possible to draw conclusions about in-country provision in the context of a wider pan-African situation and alongside the international literature. When considering the findings from research reported in the literature from Sierra Leone, it is necessary to place these within the context of the political and socioeconomic challenges that have characterized the situation within the country since the period of internal conflict (1991–2002) and that had a devastating impact upon the national economy and infrastructure (Bellows and Miguel 2006; UNICEF 2014). Throughout the conflict thousands of children, both boys and girls, were directly deployed as soldiers or exploited as child laborers or through sexual exploitation by armed groups. The physical and psychological damage inflicted by such a situation has inevitably had a negative impact upon the ability to reinstate a secure and effective system of education (Denov 2010). Internationally provision for children with disabilities or those from other marginalized groups has often been addressed only after the

430     R. Rose et al.

establishment of systems aimed at addressing the needs of the general school population. The development of education policy aimed at including children who have previously had little opportunity to engage with formal schooling has therefore often become a matter of making adjustments to existing provision rather than seeking a radical realignment of national education systems (Eleweke and Rodda 2002; Peters 2007). This may be seen as an indication that the concept of inclusive education is becoming embedded within education systems, resulting in structural shifts in the way that provision is reformulated so that every child can receive an appropriate education. However, in some instances inclusive education policy has been interpreted as an add-on requiring teachers to make compromises in the delivery of well-established curriculum structures and pedagogical approaches (Norwich 2014). Where this has been the case inclusive education has at times met with resistance and policy has been slow in its transition into effective classroom practice (Graham and Jahnukainen 2011). In considering the challenges faced in gaining consistency within the education system in Sierra Leone, Wang (2007) identified a series of issues that policy makers needed to prioritize. This study, based on data, previous studies, official reports, and documents available up to the 2004/2005 school year, considered key issues, including access, quality, equity, management and finance, and the impact of each of these on the provision of basic education. A strength of Wang’s report was its focus upon the adoption of feasible, affordable, and sustainable policy options and a recognition that socioeconomic restraints required a timetable for change that was realistic and based upon a vision that should be shared by policy makers and those charged with the delivery of change. One of the major challenges facing policy developers within Sierra Leone is the lack of adequate data reporting the number of children out of schools, and providing an overview of the needs of individuals and groups or the reasons why they are facing difficulties in accessing formal schooling (Guo 2014). There is a general consensus within the literature that the provision of more in-depth and accurate data will be essential in any effort to effect change in the education system within the country. The United Nations Development Programme report (UNDP 2010) provided an analysis of the situation in Sierra Leone which was highly

21  Developing Inclusive Education Policy in Sierra Leone …     431

critical in its discussion of the impact of poor governance upon the provision of education and social welfare infrastructure. Political and economic isolation resulting from widespread corruption was seen as an inhibiting factor preventing progress toward a more equitable society. The UNDP report highlighted discrimination against minority groups and women as endemic and a significant challenge faced by those attempting to lead change. The authors of the report suggested that lessons learned from previous evaluations of interventions by the UNDP had led to an increase in interventions and initiative aimed at promoting change, but that this was unlikely to succeed without an increase in government ownership of the programs being provided. Several areas were identified for development including improved political processes and democratic governance, decentralized policy, increases in gender equality and the participation of women at all levels, improved human rights concerning peace and the recovery of community and human security. Each of these can be identified as critical factors in promoting an inclusive society. A later report (United Nations Development Programme (UNDP) 2013), indicated little progress or change since 2010, with the average expected years of access to formal schooling remaining at 7.3. In the same report the national Gender Inequality Index which assesses opportunities, including education provided for girls, ranked Sierra Leone in 139th place out of 148 countries. The free primary education policy, introduced in Sierra Leone in 2000, led to rapid progress in terms of access to schooling. However, research conducted in 27 schools and reported by Nishimuko (2007) indicated that the quality of the education provided had been compromised due to the rapid increase in the number of enrolled children that was not accompanied by adequate planning or resourcing. High teacher-pupil ratios, shortages of teaching and learning materials, inadequate school buildings and furniture, and low motivation on the part of teachers were seen as pervasive. Nishimuko (2007) identified the importance of non-governmental organizations (NGOs) in supplementing government efforts to expand educational access of acceptable quality, especially when the government’s capacity to deliver education was weak. A more recent study conducted by Foran (2017),

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has emphasized the additional challenges and disadvantages confronting girls with disabilities in respect of accessing and completing education in Sierra Leone. Her findings state that gender issues have been largely overlooked and so long as this remains the case, discrimination and marginalization will continue to obstruct opportunities for girls to receive an appropriate education. Even though considerable effort had been directed in both policy and practice terms to secure ‘education for all’ in Sierra Leone, by 2006 the World Bank (2007) stated that 20–30% of children were out of school and that the additional costs at post-primary level, made school unaffordable for many. UNICEF in a more recent report (2014) found little change, suggesting that 23% of children were out of education and that the policy of providing basic primary education for all had not been realized. Children in poverty tend to drop out of school after the primary phase of schooling, with this being more common for girls than boys. The Sierra Leone Education Country Status Report (Ministry of Education, Science and Technology (MEST), UNESCO and Regional Bureau for Education in Africa 2013) highlights that the biggest hurdle to children’s access and ability to finish education is poverty. This report is of particular significance for having directed some consideration to two issues at the heart of inclusive education. In the first instance, it indicated that child mental health and well-being issues are under reported: this has become a major focus of attention for many national systems, and is viewed as being a core aspect of inclusive provision. The second theme mentioned is that of special educational needs and disability (SEND). Few issues concerning these children are mentioned in the report. However, those references that are made are directed toward the National school for the deaf, Cheshire homes, the union for disability issues and schools for the blind indicating a high dependency upon charitable intervention or segregated school provision. The report identifies other areas where barriers to effective educational inclusion have been identified including that of teacher education. Here it is noted that poor remuneration does not attract the best candidates into teaching, and that, as a consequence the education system does not produce many qualified teachers who have a commitment

21  Developing Inclusive Education Policy in Sierra Leone …     433

to educating all children. This suggestion is endorsed by UNESCO (2009) with an indication that 40% of teachers are under-qualified, while there is a notable shortfall in the provision of in-service training generically, and of specialist input on matters of disability in particular. Furthermore, the Afri Map study indicates the possibility of corruption concerning the recruitment, retention, teaching and training of staff (MEST, UNESCO and Regional Bureau for Education in Africa 2013). Pai (2014) states that there has never been a conception of universal education in Sierra Leone, and recommends that education must be adapted to different subpopulations within the country, as the Bunumbu Project (Banya 1986, 1989) did for rural Sierra Leoneans in the 1970s–1980s, to better meet the needs of all children. Pai’s recommendation that only by well defining the specific constituents of a target group and fulfilling their precise needs can myriad small-scale programs ultimately aggregate to meet the diverse demands and desires of Sierra Leonean society at large may well be important as the country endeavors to embrace a philosophy of education for all. Issues of stigma, discrimination and marginalization have been identified as significant factors in the denial of educational opportunities to children with disabilities in several parts of West Africa (Baffoe 2013). Avoke (2002) reports that in Ghana negative attitudes and the application of pejorative labels are common features in the treatment of children with disabilities. His views are endorsed by Fefoame (2009) who suggests that high levels of ignorance about the causes of disability are further exacerbated by a traditional belief that children may be possessed or that parents are being punished for previous misdemeanors. While the literature surrounding the education of children from marginalized groups in Sierra Leone provides a negative impression of the situation for many children, it is important to acknowledge the current efforts being made by the MEST, often in partnership with NGOs to bring about change. The research reported in this chapter is just one example of the progress toward creating a more inclusive education system in Sierra Leone.

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Methodology The MEST, in issuing a tender for the development of an inclusive education policy required that data should be collected in order to provide an informed overview of the expectations of service users and providers. This was achieved through the development of interviews and focus groups (N = 121) that were conducted with key stake holders in four regions of the country (see Table 21.1). Field workers who were familiar with the national education system and local languages were provided with training in the use of instruments that had been developed by the research team through a one day workshop held in Freetown, the capital city of Sierra Leone. Following ethical approval teams were sent into the field, under the direction of the principal investigator to conduct interviews that were semi-structured in nature (Gillham 2005), in order to encourage probing of respondents, with questions formulated in direct response to the research questions provided by MEST and The Education Network for Children with Disabilities (ENCD) who have a national overview of matters related to disability and special educational needs. All interviews were either recorded digitally or through the collation of field notes. Informed consent was obtained from all participants in the research process prior to collection of their data. Table 21.1  Four regions from which data were collected Region

Districts

Population (2004 census)

Western

Western Urban Western Rural Kailahun Kenema Kono Bombali Kambia Koinadugu Port Loko Tonkolili Bo Bonthe Moyamba Pujehun

772,873 174,249 358,190 497,948 335,401 408,390 270,462 265,758 453,746 347,197 463,668 139,687 260,910 228,392

Eastern

Northern

Southern

21  Developing Inclusive Education Policy in Sierra Leone …     435

Data were collated and analyzed by the research team through a process of thematic coding (Creswell et al. 2003), in order to identify emergent key issues. Initial themes were scrutinized and subjected to a process of code reduction to ensure that those issues which were most commonly emerging from the data could be emphasized and then organised thematically. This process resulted in the establishment of sixteen codes, each of which recurred throughout the data to be highlighted as those most representative of views expressed. These were then grouped under four themes as discussed in the findings section of this chapter. During the analysis process all data was anonymized and data maintained securely in encrypted files accessible only by members of the research team.

Findings The analysis of data from interviews and focus groups (N = 121) with key service providers was undertaken independently by the three authors of this chapter who were able to identify 16 key issues identified as inhibitors of progress toward the establishment of inclusive education in Sierra Leone (see Table 21.2). Careful scrutiny of the interview transcripts enabled definitions to be applied to each of the identified issues and to group these under the four thematic headings. These regularly recurring issues were seen by the research team as providing the foundation upon which an inclusive education policy could be formulated following a process of further consultation and clarification with colleagues in the country. The research team were committed to hearing the voices of a variety of respondents and to ensuring that a range of perspectives were obtained. The data collection process enabled the research team to gain the opinions and insights of 268 individual respondents (see Table 21.3). Service providers included a range of professionals from within the education, medical and caring professions, while equal weighting was given to the opinions of parents and persons with disabilities including some who were currently receiving education.

436     R. Rose et al. Table 21.2  Key issues within the four themes Key issue Definition of findings Theme 1: the teaching and learning environment Initial assessment of Limitations of early assessment and provision of infordisability/SEN mation for schools Pedagogical resources Lack of adequate teaching resources, to provide appropriate access to learning for children with disabilities Physical access Physical access a problem for some students National curriculum Limitations of the National Curriculum in providing for children with disabilities Assistive technology Limited access to assistive technology (including hearing aids) Post school provision Need for further development of vocational education and training Budget Allocation of Government budget to education is inadequate to support development Theme 2: professional development and support Teacher training Training deficient at both initial teacher training and continuing professional development level in equipping teachers to address the needs of children with disabilities Teacher confidence/ Teacher lack of skills inhibits confidence in addressing competence disability/SEN issues Support from NGOs NGO support is currently critical in providing support for learners with disabilities and their families Theme 3: dissemination of information and expertise Communication Communication across agencies (including ministries) responsible for supporting children with disabilities/ SEN is limited Research Limited research base to inform development in the area of disability/SEN Theme 4: other exclusionary factors Regional variations An indication that there are variations across regions that may impact upon provision SEN excluded Children with disabilities are known to be not attending schools and only a few SEN/Disabilities are recognized—(these tend to be sensory or physical). No recognition of intellectual difficulties, ASD, SEBD School recognition Some schools not recognized and teachers in nonapproved schools are not paid. These have a good number of learners with disability/SEN Exclusion of girls from Difficulties in enrolling and retaining girls in education education

21  Developing Inclusive Education Policy in Sierra Leone …     437 Table 21.3  Categorisation of respondents in interviews and focus groups Designation

Western Eastern Northern Southern Interviews/ focus groups N=

Education 6 3 7 13 officers/ MEST School 1 0 7 8 principals (mainstream and special) Teachers 2 2 4 9 Medical pro- 2 0 2 1 fessionals Parents 1 2 4 5 School 0 0 0 2 pupils with disabilities Disabled 2 1 4 4 people’s organizations NGO repre- 1 0 5 5 sentatives Faith group 0 0 3 6 representatives University 1 0 0 2 representatives Civic repre- 0 0 5 1 sentatives Social 0 0 1 0 worker Total numbers of interviews/focus groups and individuals providing data

Individuals providing data

28

50

16

16

17 5

28 5

12 2

84 2

11

43

11

15

9

9

3

4

6

10

1

2

121

268

The qualitative data collated through this research not only enabled the researchers to identify where these pressure points upon current provision exist, but also in some cases to identify practices that have endeavored to address these and strengthen provision for children with disabilities and special educational needs.

438     R. Rose et al.

Field visits were made to schools in each of the four districts which allowed for both contextual information to be collated and also to verify the data provided by interviewees. As a result of the field work it was possible to provide both a report of the findings in relation to each of the 16 issues and to make some recommendations for actions that would need to be taken if a policy of inclusive education is to succeed. Shortcomings in terms of procedures (school enrolment, assessment of disability or special educational need, communication between education professionals and parents), resource provision (teaching materials, assistive technology), school environment (toilet facilities, accessibility), and the preparedness of teachers and other professionals to meet the needs of a diverse population (teacher training and professional development) were all identified through the research. Recommendations were made by the research team in respect to both actions to be taken to address these inhibitors, and the ways in which they might be incorporated into a national inclusion policy.

From Research Findings to Policy Development Following the development of a research report and recommendations, the Principal Investigator returned to Sierra Leone in order to present the findings and recommendations to service providers and users in each of the four districts of the country (see Table 21.1). The purpose of this second round of consultations was to enable individuals and groups within the country to discuss the implications of the findings and recommendations and to consider the practicalities of implementing a national policy. One day workshops were conducted in each of the four regions at which the researcher gave a presentation of the report which had been circulated to attendees in advance. Following an opportunity to ask questions or seek clarifications, each workshop provided an opportunity for attendees to work in groups to provide a critical commentary on the findings and to make observations about how a national inclusion policy might be presented and implemented. Further consideration was given to the roles and responsibilities that individuals and groups would

21  Developing Inclusive Education Policy in Sierra Leone …     439

need to take in order to ensure that the policy had influence upon ­practice. Each group made a series of observations and recommendations which were collated as field notes for refinement of the policy document and clarification of points made within the research report. Following this round of consultations, the research team made amendments to the report and these were returned to participants from the consultation workshops in order to ensure that their recommendations had been fairly interpreted and reflected in the revised documentation. Once final comments were received the substantive research report and recommended inclusive education policy were submitted to MEST.

Discussion In this chapter we have emphasized a process which attempted to demonstrate a democratic and representative approach to policy development. Inclusive education policy should impact the lives of professionals and families in a positive manner and should therefore be seen to be practicable and focused upon the needs of all parties. It is our contention that this is best achieved through a process that involves service users and providers at all stages of information seeking, development and implementation (see Fig. 21.1). In the process adopted for this research, six distinct phases of development and consultation can be identified. At phase 1, having clarified the project brief with the commissioners of the research, the instruments were initially developed by the research team. These were then presented to colleagues in Sierra Leone in order to ascertain the suitability of the instruments and to identify any potential difficulties during the field work stage. Local field workers were trained in the use of the instruments with the research team recognizing that their knowledge of the country, its culture and languages was likely to be a critical factor in obtaining trustworthy data. This phase was also important in demonstrating respect for local expertise and ensuring that individuals who may eventually be required to implement aspects of an inclusive education policy felt valued and that their knowledge and experience was recognized.

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Fig. 21.1  The consultation process

The experiences and opinions of both service users and providers hold the key to the likely success of implementing any policy. At phase 2 of the project significant efforts were made to ensure that these critical individuals and groups were fully involved and enabled to express their feelings and ideas to field workers. Verbatim recording of data enabled the research team at phase 3 to make an initial interpretation of the views and experiences of these individuals and groups on the basis of thematic analysis. This interpretation was used to inform an initial report and a series of recommendations for action. At phase 4 this report and recommendations was presented in country for critical scrutiny and analysis. An important component of this phase was the provision of a forum for service users and providers where they could express their views to their peers and shape the changes that they felt necessary if an eventual policy was to be practically implemented within Sierra Leone. It also enabled them to consider who should accept responsibility for the implementation and monitoring of all various aspects of the policy and to discuss a possible timetable and priorities for action. Following this detailed in-country consultation, phase 5 saw a re-writing of the report and policy and its return to colleagues who

21  Developing Inclusive Education Policy in Sierra Leone …     441

had attended the workshops to ensure that fair representation had been made in the amended documentation. This led to the final phase 6 with the research team issuing documentation for presentation to MEST in which they were confident that the views of service users were fairly represented and presented, and that a policy could be implemented that is seen to be practical and fit for purpose. The advantages of this process have been outlined here, though it is acknowledged that there are certain drawbacks to following a path such as this which endeavors to seek the participation of so many individuals. Firstly, with so many professionals, families and others involved it is not always easy to gain a consensus. The experiences of individuals vary considerably and not all would seek similar provision or outcomes. As arbiters in the process the researchers and those in positions of authority are inevitably called upon to make decisions which they hope reflect interests and aspirations of individuals and groups who will ultimately be affected by any decisions taken. Similarly, the process here described is time consuming and would be unrealistic in situations where immediate action was seen as essential. However, we would suggest that in democratic societies a process that involves and respects the views of as many interested parties as possible is important and that this is ultimately more likely to result in increased support for those who will be charged with the implementation of policy and the development of services. In writing this chapter we have attempted to emphasize the advantages of policy development on the basis of empirical research and a democratic process. While we suggest that there are many advantages top this approach for education policy makers and those working on the ground, we would also observe that there are important lessons to be learnt for researchers who like to define their work as being emancipatory or inclusive.

References Armstrong, A., Armstrong, D., & Spandagou, I. (2010). Inclusive Education: International Policy and Practice. London: Sage. ASEPA. (2017). Leading Learning 4 All. Retrieved from https://www.leadinglearning4all.edu.au/. Accessed February 10, 2017.

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Avoke, M. (2002). Models of Disability in the Labelling and Attitudinal Discourse in Ghana. Disability and Society, 17(7), 769–777. Baffoe, M. (2013). Stigma, Discrimination & Marginalization: Gateways to Oppression of Persons with Disabilities in Ghana, West Africa. Journal of Educational and Social Research, 3(1), 187–198. Banya, K. (1986). Education for Rural Development: The Case of Sierra Leone. Compare, 16(2), 175–188. Banya, K. (1989). Education for Rural Development: Myth or Reality? International Journal of Educational Development, 9(2), 111–126. Bellows, J., & Miguel, E. (2006). War and Institutions: New Evidence from Sierra Leone. The American Economic Review, 96(2), 394–399. Creswell, J., Plano-Clarke, V., Guttman, M., & Hanson, W. (2003). Advanced Mixed Methods Research Designs. In A. Tashakkori & C. Teddlie (Eds.), Handbook of Mixed Methods in Social and Behavioral Research. Thousand Oaks: Sage. Davis, P., & Florian, L. (2004), Searching the Literature on Teaching Strategies and Approaches for Pupils with Special Educational Needs: Knowledge Production and Synthesis. Journal of Research in Special Educational Needs, 4(3), 142–147. Denov, M. (2010). Coping with the Trauma of War: Former Child Soldiers in Post-conflict Sierra Leone. International Social Work, 53(6), 791–806. Dwyfor-Davies, J., & Garner, P. (1997). The Views of Newly Qualified Teachers Concerning SEN Provision in ITE Courses. In J. Dwyfor-Davis & S. P. Garner (Eds.), At the Crossroads: Special Educational Needs and Teacher Education. London: David Fulton. Eleweke, C. J., & Rodda, M. (2002). The Challenge of Enhancing Inclusive Education in Developing Countries International. International Journal of Inclusive Education, 6(2), 113–126. Engh, K. R., & Rose, R. (2014). Assessment for Learning in Inclusive Schools. Oslo: Norwegian Ministry of Education and Research. European Agency for Development in Special Needs Education (EADSNE). (2009). Teacher Education for Inclusion: International Literature Review. Odense: EADSNE. Fefoame, O. (2009). Barriers to Education: A Voice from the Field. Retrieved from  http://www.sightsavers.net/in_depth/policy_and_research/education/13072_Barriers%20to%20education%20-%20a%20voice%20 from%20the%20field.pdf. Accessed August 5, 2017. Foran, S. (2017). Gender and Disability Assessment and Research CommunityBased Education Project. Sierra Leone. London: Sightsavers.

21  Developing Inclusive Education Policy in Sierra Leone …     443

Galloway, D. M., Armstrong, D., & Tomlinson, S. (2013). The Assessment of Special Educational Needs: Whose Problem? London: Routledge. Gillham, B. (2005). Research Interviewing: The Range of Techniques. London: McGraw-Hill. Gough, D., Oliver, S, & Thomas, J. (2012). An Introduction to Systematic Reviews. London: Sage. Graham, L. J., & Jahnukainen, M. (2011). Wherefore Art Thou, Inclusion? Analysing the Development of Inclusive Education in New South Wales, Alberta and Finland. Journal of Education Policy, 26(2), 263–288. Guo, M. (2014). The Vicious Circle of Data Gaps, Lack of Prioritization and Low Capacity: A Study on Post-conflict Education in Sierra Leone. Independent Study Project (ISP) Collection. Paper 1837. Retrieved from http://digitalcollections.sit.edu/isp_collection/1837. Accessed August 5, 2017. Hoppey, D., & McLeskey, J. (2013) A Case Study of Principal Leadership in an Effective Inclusive School. The Journal of Special Education, 46(4), 245–256. Hornby, G., Howard, J., & Atkinson, M. (2013). Controversial Issues in Special Education. London: Routledge. Lacey, P. (2012). Support Partnerships: Collaboration in Action (2nd ed.). London: Routledge. Maconachie, R., & Binns, T. (2007). Beyond the Resource Curse? Diamond Mining, Development and Post-conflict Reconstruction in Sierra Leone. Resources Policy, 32(3), 104–115. Mariga, L., McConkey, R., & Myezwa, H. (2014). Introducing Inclusive Education in Low Income Countries: A Resource Book for Teacher Educators, Parent Trainers and Community Development Workers. Cape Town: Atlas Alliance and Disability Innovations Africa. Ministry of Education, Science and Technology, UNESCO and Regional Bureau for Education in Africa. (2013). Sierra Leone: Education Country Status Report; an Analysis for Further Improving the Quality, Equity and Efficiency of the Education System in Sierra Leone. Dakar: UNESCO. Mitchell, D. (2005). Contextualizing Inclusive Education: Evaluating Old and New International Paradigms. London: Routledge. Nishimuko, M. (2007). Problems Behind Education for All (EFA): The Case of Sierra Leone. Educate, 7(2), 19–29. Norwich, B. (2008). Dilemmas of Difference, Inclusion and Disability: International Perspectives and Future Directions. London: Routledge. Norwich, B. (2014) Recognising Value Tensions That Underlie Problems in Inclusive Education. Cambridge Journal of Education, 44(4), 495–510. Pai, G. (2014). Particularizing Universal Education in Postcolonial Sierra Leone. Current Issues in Comparative Education., 16(1), 62–73.

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Peters, S. J. (2007). “Education for All?” A Historical Analysis of International Inclusive Education Policy and Individuals with Disabilities. Journal of Disability Policy Studies, 18(2), 98–108. Rose, R. (2010). Confronting Obstacles to Inclusion: International Responses to Developing Inclusive Education. London: Routledge. Rose, R., & Garner, P. (2010). The Professional Learning of Teachers Through Experience in an International and Intercultural Context. In C. Forlin (Ed.), Teacher Education for Inclusion: Changing Paradigms and Innovative Approaches. London: Routledge. Tilstone, C., & Lacey, P. (2000). Role of Learning Support Assistants in the Inclusive Learning of Pupils with Severe and Profound Learning Disabilities. Journal of Intellectual Disability Research, 44(3–4), 488–492. Timmons, V., & Walsh, P. N. (2010). A Long Walk to School: Global Perspectives on Inclusive Education. Rotterdam: Sense. Todd, L. (2007). Partnerships for Inclusive Education. London: Routledge. United Nations Educational, Scientific and Cultural Organisation. (1990). World Declaration on Education for All and Framework for Action to Meet Basic Learning Needs. Paris: UNESCO. United Nations Educational, Scientific and Cultural Organisation. (1994). The Salamanca Statement and Framework for Action on Special Needs Education. Paris: UNESCO. United Nations Educational, Scientific and Cultural Organisation. (2006). The Convention on the Rights of Persons with Disabilities. Paris: UNESCO. United Nations Educational, Scientific and Cultural Organisation. (2009). Ensuring Access to Education for All: Guidelines for Inclusion. Paris: UNESCO. United Nations Development Programme (UNDP). (2010). Human Development Report Sierra Leone. New York: United Nations. United Nations Development Programme (UNDP). (2013). Human Development Report Sierra Leone. New York: United Nations. United Nations International Children’s Emergency Fund (UNICEF). (2014). The Republic of Sierra Leone; Annual Report. New York: UNICEF. Wang, L. (2007), Education in Sierra Leone: Present Challenges, Future Opportunities. Washington, DC: World Bank Publications, 2–3 and 35. Retrieved from https://openknowledge.worldbank.org/handle/10986/6653. Accessed August 8, 2017. World Bank. (2007). CSR (Country Status Report) Education in Sierra Leone: PresentChallenges, Future Opportunities. Africa Human Development Series. Washington, DC: World Bank.

22 Inclusive Education in Japan: Current Trends and Teachers’ View Hiroko Furuta

Introduction This chapter describes the current trends focusing on developments toward inclusive education in Japan. After ratifying the Convention on the Rights of Persons with Disabilities (CRPD) in 2014, a government-aided scheme was initiated for developing an inclusive education system. Japan’s special education began in 1878 when the first school for the deaf and blind was established in Kyoto. Seventy years later, the compulsory special education system began in 1948 which was limited to children with visual and hearing impairments. In 1979, it was, finally, extended to include all children with disabilities. In addition to special education in special schools and special classes in regular schools, another program of resource rooms was established in 1993. Resource rooms provide individual or small group lessons several hours a week to students with mild disabilities. H. Furuta (*)  Kumamoto University, Kumamoto, Japan © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_22

445

446     H. Furuta

In Japan, inclusive education began sprouting up in many places from the 1970s. It was basically a parents’, as well as teachers’, movement resisting the rigid special education system which distributed children’s schools by their degree of disability. Inclusive education emerged in Japanese formal education when special education was replaced by Special Needs Education (SNE) which was based on the partial amendment of the School Education Law in 2007. Comparing with special education which was conducted only in special schools and classes, SNE has additionally been implemented in regular schools and classrooms. At the same time SNE started focusing on students with Learning Disabilities (LD), Attention Deficit Hyperactivity Disorder (ADHD) and High Functioning Autism. Thus the 2007 SNE reform was a significant step toward inclusive education in Japan. After 2007 SNE reform, there were several major changes to education for students with disabilities: (1) appointment of an SNE coordinator in a school (kindergarten up to high school), (2) employment of a support assistant for SNE in regular schools, (3) additional roles for Schools for SNE (former special schools) to provide advice and supports to students with disabilities at local regular schools, (4) hearing of parents’ opinions by the local education board at the time of school placement, and (5) a comprehensive SNE certificate system for the teachers. Out of the children under compulsory education (six year’s primary and 3 year’s middle school), 0.7% (70,939) attended Schools for SNE in 2016. In addition, 2.2% (217,839) attended SNE classes in regular schools and 1.0% (98,311) received their special support services in the resource rooms (Ministry of Education, Culture, Sports, Science and Technology: MEXT 2017). Previous studies on inclusive education in Japan after the 2007 SNE reform are as follows: Nagano and Weinberg (2012) propose potential barriers to inclusive education from a legal perspective. As for teachers’ attitude and training towards inclusive education, Forlin et al. (2014) used a questionnaire to survey undergraduate students and suggested the need for improved teacher preparation, while Song (2016) concluded that Japanese teachers were confident with teacher-to-teacher collaboration from a

22  Inclusive Education in Japan: Current Trends and Teachers’ View     447

comparative survey between Korea and Japan. Finally, Futaba (2016) analyzed inclusive education in relation to Japanese collectivistic school culture and reported an example of a school where diverse students were accepted by school staff under an adhocratic culture. Regarding the development of an inclusive education system, Ainscow and Sandill (2000) argued that it does not arise from a mechanical process and rather requires a process of social learning within particular organizational contexts. It should be, therefore, essential to review inclusive education practices in Japan in a particular context and from the viewpoints of stakeholders in it. Firstly, this chapter describes the Development of Inclusive Education System (DIES) scheme. Secondly, a case of a model project conducted under DIES scheme in a city of southern part of Japan is discussed with the viewpoints of reasonable accommodation (RA) coordinators, as well as teachers’ ideas toward the DIES project and inclusive education.

Development of Inclusive Education System (DIES) Scheme Japan signed the CRPD in 2007 and finally, after some of compliance efforts, ratified it in 2014. One of the issues on the road toward ratification was the inclusive education system of Article 24 of the CRPD. A special committee was set up in the Subdivision of Elementary and Lower Secondary Education of Central Council for Education in 2010. A report titled “Fostering Special Needs Education to Establish an Inclusive Education System for Realizing a Cohesive Society” was released in 2012. The reports states five points; (1) creating an inclusive education system, (2) guidance and decision about schools for enrolment, (3) enhancing reasonable accommodation and the preparation of a fundamental environment, (4) preparation for a diverse place of learning and promotion of collaboration among schools, and (5) raising the expertise of teachers. Thus, Japan has made a decision to form an inclusive education system towards building a cohesive society (MEXT 2013).

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The following year, in 2013, MEXT commenced a model project over a span of three years named “Developing Inclusive Education System (DIES)” scheme (MEXT 2014a). To implement this model project, 65 facilities were selected as pilots, including local municipalities, schools and educational institutes in Japan. The purpose of this project was: (1) to consolidate good practices of providing reasonable accommodation to children with disabilities; (2) to implement exchange and a cooperative learning platform; and (3) to conduct research utilizing resources from school clusters.

A Case of DIES Model Project Project Outline Y city was one of those designated municipalities to implement the DIES model project by MEXT. It is located in a prefecture on the island of Kyushu in the southern part of Japan and has a population of 55 thousand. In the academic year 2015/2016 when surveys were conducted, there were 17 elementary and six middle schools with around 4100 students. In addition, there were three prefectural and one private high schools. There were no SNE schools in the city until 2013 when a branch of prefectural school for SNE was set up in the premises of a prefectural high school located in the city. Finally, there were 27 kindergartens and day care centers. Since the branch of a SNE school only had a high school section, 3.7% of elementary school students and 3.0% of middle school students were learning in SNE classes in regular schools in 2013 (Yamaga City Education Board 2015). These values were apparently higher than the national average of 1.6% for elementary and middle schools (MEXT 2014b). Y city had implemented the DIES project with a focus of utilizing the resources in school clusters. Y City’s education board set up the SNE Coordination Committee to implement this DIES project. Table 22.1 shows the members included in this committee from the education, health and social welfare sectors and advocacy organizations.

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Under the DIES project, two newly established posts were introduced. Firstly, a lead coordinator was appointed from SNE coordinators in each middle school area. SNE coordinators are teachers who, in addition to teaching, are in charge of coordinating special needs education inside the school and with outside professionals. A lead coordinator plays the leading role of the SNE coordinators in schools. When this DIES project started, there was at least one SNE coordinator in each school, appointed by the principal. Secondly, an RA coordinator was appointed in each middle school area and will be discussed later. Hereafter, the DIES project in Y city is described in three main areas: school clusters, incremental support in providing reasonable accommodations and incremental case meetings. Figure 22.1 shows the school cluster model in each middle school area. This figure clearly shows that each middle school area has a general meeting personnel from kindergarten or day care centers up to middle school. They also collaborate with SNE schools, high schools and the prefectural education center as well as medical and welfare sectors. Table 22.1  Members included in the SNE coordination committee Sector

Post

Education

Principals

Municipal officers SNE coordinators

Health Welfare

Labor Advocacy

Parents’ organizations

Kindergarten (1), Elementary (1), Middle school (1), Prefectural high school (1), Private high school (1), School for SNE outside the city (1) City Board of Education (1), Department of Compulsory Education, Prefecture (1) SNE leader coordinator (2), SNE coordinator in a school for SNE (1), SNE coordinator in a prefectural high school Medical doctor (1), Public health nurse (1), City welfare board (1), City child welfare board (1), City day care center (1), Private day care center (1), Care and rehabilitation center for children with disabilities (1) Public employment security office (1) Te-wo-tsunaguIkusei-kai (New Inclusion, Japan), Y City branch (2)

Note Table created by Furuta and Ohsugi (2016) based on Yamaga Education Board (2015)

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Middle school

School for SNE

Elementary school

High school

Day care center

- SNE coordinator meetings - Meeting to strengthen collaboration between kindergartens, elementary and middle schools - Middle school area training meetings - Universal design for learning in regular classrooms - Upgrading case meetings - Support for transition e.g. from kindergarten to elementary school - Upgrading the education support plans etc.

Medicine

Elementary school

Welfare Kindergarten

Elementary school Medicine Prefectural Education Center

Fig. 22.1  The school cluster model in each middle school area (Note Figure created by Furuta and Ohsugi (2016) based on Yamaga Education Board (2015))

Table 22.2 shows the incremental support in providing reasonable accommodation. Three stages of support are available based on the educational needs of a student. In any of these stages, the Individualized Instruction Program (IIP) that includes precise plans on teaching a particular student, and Individualized Education Support Plan (IESP) for collaborating with related organizations on a longer term should be carefully planned. According to the statistics released by Y city education board, the rate of implementation of the IIP and IESP programs were lower in kindergartens, 67% in the first year as compared to 100% at elementary and middle schools. However, in the second year, 100% of kindergarten had implemented both plans under the DIES model project (Yamaga City Education Board 2015). Table 22.3 shows the three stages of incremental case meetings. Since case meetings create a burden on teachers especially with their busy

22  Inclusive Education in Japan: Current Trends and Teachers’ View     451 Table 22.2  Providing reasonable accommodations: incremental support Stage to provide supports

Individual support in regular classrooms

Class-wide support in regular classrooms

Support in the special setting

Type of support

• Use of materials • Individual assis• Class teaching tance in regular and aids which in easily underclassrooms meet the stustood form • Resource rooms dent’s needs • Accommodating • Modification of • SNE classes learning teaching forms environments • Universal design • SNE assistants for learning Plan and do: Individualized Education Plan and Individualized Education Support Plan Note Table created by Furuta and Ohsugi (2016) based on Yamaga Education Board (2015)

Table 22.3  Incremental case meeting Stage

Short case meeting in a regular school

SNE case meeting at Middle school the school area: SNE coordiSNE meeting in a regu- nator meeting lar school

Members to attend the meeting

• Classroom teacher • Teachers and staff involved • SNE coordinator • RA coordinator

• School administrator • Classroom teacher • Teachers and staff involved • SNE coordinator • RA coordinator Caregiver

• SNE coordinator • RA coordinator

Note Table created by Furuta and Ohsugi (2016) based on Yamaga Education Board (2015)

schedules, short case meetings with teachers who are directly involved with a student with special needs were set up as initial meetings in the DIES project in Y city. Then the results of these short meetings would be further discussed at the school’s SNE case meeting, and finally at the SNE coordinator meeting in the middle school area.

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RA Coordinators in a DIES Project In this section, the author discusses the experiences of RA coordinators who were introduced to the DIES model project. Seven RA coordinators (three male and four female) were appointed to the DIES project in Y city. The survey was conducted in two phases in March 2016. In the first phase, a questionnaire was delivered to the seven RA coordinators. The questionnaire was made of five closed questions and six open questions. Closed questions were designed to obtain (1) background information related to the RA coordinators such as previous working experiences, (2) information about their duties as RA coordinators such as the way they coordinate within the schools and with other schools, and with institutions (hospitals and day care centers). In the open questions, RA coordinators were asked to write down ‘good examples’ of their practice, their way of organizing case meetings in schools and utilizing of IIP or IISP, their way of coordinating basic environmental arrangements, their personal evaluation as RA coordinators, and future tasks of the project. In the second phase, they were interviewed individually to clarify some points mentioned in the questionnaire. Among the seven RA coordinators, five were retired teachers; two were retired school administrators, one was teaching in the prefectural school for SNE and two were teachers in the SNE class in regular schools. There were also retired staff of the prefectural education board. Finally, there was a parent of a child with disabilities, who was also on the education board committee in a city other than Y city. Two of seven RA coordinators had worked in Y city and were connected with people in the middle school area where they were attached, while others were outsiders who had not developed human networks before their appointments. These RA coordinators were employed on a part-time basis. Of the seven RA coordinators, one was acted as liaison between the Y city education board office and other RA coordinators. The six RA coordinators were assigned to one of the six middle school areas. These six RA coordinators’ answers are described below.

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The RA coordinators provided suggestions for the reasonable accommodation, in regular and SNE classrooms of primary and middle schools, as well as the kindergarten and child care centers. It was also revealed that these RA coordinators coordinated people in and between school and between schools/kindergarten/child care centers; with the SNE coordinators in their attached areas; with social welfare and medical sectors; with the parents of children with special educational needs; with professionals (in the school for SNE, support centers for people with developmental disabilities and universities). In addition, they planned and implemented training in each school and in the middle school area. Examples of RA coordinator’s operations that they considered to be effective are as follows: • Structuring the class teaching stream and decreasing the amount of stimulus in the classroom top revent stifling the learning of a student with ADHD. • Case meetings using a strategy sheet based on applied behavior analysis. At the same time, some RA coordinators suggested teaching methods for students with disabilities such as showing a card when the student is expected to be silent in the regular classroom. Some pointed out that it was good to have RA coordinators appointed from retired teachers as well as those who were not teachers so that topics could be discussed from different angles and wider perspectives. It was also suggested that in some cases, RA coordinators acted as a mediator between the parents and teachers by providing face-to-face consultation with parents and conveying this information to the teacher. Finally, the RA coordinators raised the following future tasks for the DIES project: firstly, raising awareness regarding reasonable accommodations of school personnel, since they felt only teachers directly involved with the DIES project understood its significance; secondly, changing the perception of disabilities to a more positive attitude.

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Teachers’ Ideas on the DIES Project and Inclusive Education In order to identify teachers’ ideas on DIES model project and inclusive education, interviews were conducted with 21 teachers over two days in July 2015. Among these 21 teachers, 10 (7 male and 3 female) were in two elementary schools and 11 (10 male and 1 female) were working in two middle schools. Two middle school areas were selected by the city education board according to the location. One was selected from urban areas and another from rural areas. Among the interviewees, three were school administrators, seven were head teachers, three were subject teachers, two were class teachers, two were SNE coordinators and one was an SNE class teacher. Their teaching experience is as follows: four teachers, 1–10 years; three, 11–20 years; nine, 21–30 years; and five, more than 30 years. The interview was conducted by the main researcher of a research project. These interviews were video-recorded and a sign language interpreter was involved during the interviews, helping to facilitate communication between teachers and researcher. Semi-structured interviews were conducted. The following five questions were asked regarding: (1) background information related to working experiences as teachers, (2) personal experiences to interact with people with disabilities, (3) participation in trainings on special needs education in the previous year, (4) ideas on DIES project or learning in the regular classroom together for both students with SNE and their peers, and (5) what they think most important in teaching. Of the questions asked at the interview, ideas on DIES projects and inclusive education are analyzed below. Some of the comments and ideas from teachers regarding the DIES project are as follows. A teacher described a meeting they had as part of the DIES project in the school. Every Friday morning, we have a 20 minutes Student Understanding Meeting. Here, we share information on students, discuss the present situation and good ways to cope with the students. You know, we have less

22  Inclusive Education in Japan: Current Trends and Teachers’ View     455

than 100 students in this school. So, we (the teachers) know all the student and can easily promote new initiatives. (Middle school head teacher)

It is suggested that teachers think the size of the school is a factor which affects the smooth implementation of the DIES project in the school through teacher meetings. Then, a school administrator described an RA coordinator’s role in promoting the DIES project in school: Both the school’s SNE coordinator and the visiting RA coordinator have a great influence on us. People like this, who are really motivated to make a change, inspire us to take action. (Middle school administrator)

The above comment suggests that in some schools, RA coordinators bring substantial power to help and collaborate with busy SNE coordinators. It also implies that this school administrator recognizes the potential of stakeholders such as RA coordinators and SNE coordinators to promote inclusive education under the DIES model project and support them. On the other hand, an SNE coordinator pointed out a shortcoming of implementing the DIES project as not having a clear goal for each school regarding the project and therefore each teacher conducts their own methods in the classroom. This brings into question as to whether the leadership practices took place or not and at different levels in the school that is essential for developing inclusive education systems (Ainscow and Sandill 2000). Some teachers mentioned that they found positive and negative aspects of inclusive education for students with disabilities. One of the merits is that students with disabilities develop socialization skills through learning with their peers; however, by the same standards these same students with disabilities are unable to keep up with the pace of learning in the regular classrooms. The teachers suggested that a students’ special educational needs should be met by individual instruction in a special setting. There is a conflict of needs between socialization vs. learning.

456     H. Furuta

I think it is not enough for them (the students with special needs) to stay together with the students without disabilities. Slower learners can learn many things on their own. (Elementary school administrator)

A middle school administrator raised a concern on the limitation of providing reasonable accommodation to students with severe disabilities. Thus, almost all teachers admit the necessity of special settings that include teaching methods tailored to the student’s special educational needs. This may reflect the tradition of a dual regular and special education system (Forlin et al. 2014) in teachers’ mind in Japan. Next, the author discusses ideas from teachers regarding inclusive education as a whole. Some teachers feel that experiencing inclusive education during childhood in school is essential to nurture a concept of society in which we all live together. A teacher noted: For me inclusive education means to know each other, and to develop relationships with others for everyone to live in harmony and easy. We do not know anything about other people unless we do things together. Through school education, children can understand each other through interactions. (Elementary school head teacher)

Some teachers also understood inclusive education in relation to their past teaching practice of Education for Human Right (EHR). A teacher mentioned: EHR forms the basis of my teaching. In my EHR practices, I discuss with my colleagues on students in need. A deeper understanding of EHR should be developed over only learning new things. (Middle school head teacher)

One middle school administrator also mentioned that EHR calls upon students to see peers with special educational needs as one of them. In Japan, EHR was started as Dowa education which targeted assisting students from Buraku (outcast in Japan) villages in the 1960s. In 2000, Dowa Education was replaced by EHR with the enactment of the Law

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for the Promotion of Education for Human Rights and Dissemination of Human Rights. With the presence of Buraku villages, a home for Hansen’s disease sufferers and so on, teachers have been strongly encouraged to introduce EHR in their teaching throughout the prefecture where Y city is located. In this three-year model project, most aspects of the DIES project focus on strategies and methodologies to be used in schools, as mentioned in the last section, while concepts and philosophies of inclusive education and reasonable accommodation are in the background. In other words, as Ainscow and Sandhill (2000) stated, considerable process of social learning, including a series of struggles to establish ways of working, is further necessary in the school community. On this point, it may be effective to examine inclusive education in relation to EHR, which is already a well-established concept and practice in school education.

Conclusion Current trends to develop an inclusive education system in Japan which occurred hand in hand with ratifying the CRPD in 2014 was described. Inclusive education emerged when the former special education system was replaced by SNE in 1997, however the term “inclusive education” has only seen formal usage by MEXT in the report published in 2012. Findings from an analysis of a case of DIES model project in a city were as follows: First, it emphasized developing an organizational structure and ways to establish collaboration between related personnel. Establishment of SNE Coordination Committee as well as utilizing a middle school cluster model gave a clear idea in terms of organization. Setting up ways to provide reasonable accommodations, in addition to holding case meetings opened a path to practice. The model project also made use of the link between people and resources in middle school area which were under-utilized before this project began. Forlin et al. (2014) surveyed the move toward inclusive education in Japan and pointed out that it was promoted through collaboration and support between teachers.

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This research added a new finding related to organizational structures created after the DIES Project started. Second, the DIES model project became activated by putting an RA coordinator into each middle school area. They occupied somewhat a neutral position as an outsider of the school community and are hired fully for this role which differed from an SNE coordinator whose responsibilities include teaching. However, the status of RA coordinators after termination of this model project is unknown. It would be a major concern for the future development of an inclusive education system in Japan. Third, under this model project, it was revealed that teachers, a majority of them having more than 10 years teaching experiences, saw changes implemented by the DIES project, such as the presence of an RA coordinator and short meetings in a rather positive way. At the same time, some of them clearly recognized the significance of inclusive education both for students with and without disabilities especially for understanding the diversity of people in society. However, it was suggested that teachers were not confident of providing reasonable accommodation to enable students with special needs to face and work out their needs. Also, there was a conflict on which side of needs of students with special needs they should consider more, learning needs or socialization. The former may be more effectively handled in a separate setting and the latter can be better promoted in regular classrooms. Effective training, in which knowledge and experience of teachers in SNE schools are introduced for teachers in regular schools, is recommended. Finally, it was suggested that efforts were insufficient to encourage teachers under the DIES model project to understand inclusive education from various aspects of education in their areas. As Ainscow and Sandill (2000) mentioned, becoming more inclusive is a matter of thinking and talking, reviewing and refining practice, and attempting to develop a more inclusive culture. Some teachers tried to understand this on the ground of EHR. To promote a secure inclusive education system, continued efforts to implement an organization structure and collaborations as well as knowledge and insight to deepen understanding of inclusive education is indispensable.

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Acknowledgements   Special thanks go to the Education Board, teachers and RA coordinators in Yamaga city, Kumamoto prefecture. The author would like to thank Prof. Nariki Ohsugi, Kogakkan University with whom interviews with the RA coordinators were conducted. The author also would like to extend her gratitude to Dr. Adrian Yap Yei Mian, former graduate student of Waseda University and Prof. Kazuo Kuroda of the same for inviting me to join part of the research project.

References Ainscow, M., & Sandill, A. (2000). Developing Inclusive Education Systems: The Role of Organizational Cultures and Leadership. International Journal of Inclusive Education, 14(4), 401–416. http://www.tandfonline.com/doi/ abs/10.1080/13603110802504903. Forlin, C., Kawai, N., & Higuchi, S. (2014). Educational Reform in Japan Toward Inclusion: Are We Training Teachers for Success? International Journal of Inclusive Education, 19(3), 314–331. https://doi.org/10.1080/13 603116.2014.930519. Futaba, Y. (2016). Inclusive Education Under Collectivistic Culture. Journal of Research in Special Educational Needs, 16(s1), 649–652. Furuta, H., & Ohsugi, N. (2016). Developing Inclusive Education System in Japan: A Case of Yamaga City, Kumamoto. Bulletin of Bulletin of the Faculty of Education, Kumamoto University, 65, 139–144. http://reposit.lib.kumamoto-u.ac.jp/handle/2298/35864. Ministry of Education, Sports, Science, and Technology. (2013). Outline of Report on the Promotion of Special Needs Education for Developing an Inclusive Education System Leading to the Creation of Cohesive Society. NISE (National Institute of Special Needs Education) Bulletin, 12, 22–27. Ministry of Education, Sports, Science, and Technology. (2014a). Inkurusibukyoiku sisutemukochikumoderujigyou [Model Project to Develop Inclusive Education System]. Retrieved August 31, 2017, from http://www. mext.go.jp/a_menu/shotou/tokubetu/main/006/h25/1339782.htm. Ministry of Education, Sports, Science, and Technology. (2014b). National Demographic Data for Schooling of Children. NISE (National Institute of Special Needs Education) Bulletin, 13, 24.

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Ministry of Education, Culture, Sports, Science, and Technology. (2017). Tokubetsusien kyouikushiryou [Survey on Special Needs Education]. Retrieved from http://www.mext.go.jp/a_menu/shotou/tokubetu/material/1386910.htm. Nagano, M., & Weinberg, L. A. (2012). The Legal Framework for Inclusive Education of Students with Disabilities: A Comparative Analysis of Japan and the United States. International Journal of Special Education, 27(1), 128–143. Song, J. (2016). Inclusive Education in Japan and Korea—Japanese and Korean Teachers’ Self-Efficacy and Attitudes Towards Inclusive Education. Journal of Research in Special Educational Needs, 16(s1), 643–648. Yamaga City Education Board. (2015). Heisei 25/26/27nendo MonbukagakusyoSitei InkurusibuKyoikuSisutemuKochikuModeruJigyo: YamagashiKyoiuIinkai Seika Houkokusyo (Progress Report, Yamaga City Education Board: 2013–2015. MEXT Model Project to Develop Inclusive Education System). Yamaga City.

23 Positive Behavior Support Model for Inclusion of Children with Autism Spectrum Disorder Santoshi Halder

Introduction Individuals with disabilities often engage in various challenging behaviors that negatively affects not only their own lives but also the lives of others around them (Kates-McElrath and Axelrod 2008; Meador and Osborn 1992). It has been reported by extensively regarding the major proportion of children with disabilities that engaging in problem behavior (Lewit and Schuurmann Baker 1996) that widely interferes not only their education, but also their social interaction, employment and independent living and mostly their quality of life at large (Crone and Horner 2003). It has been pointed out by many researchers that many of the interventions are not effective and are also time consuming (Crone and Horner 2003; Kates-McElrath and Axelrod 2008) as many interventions are developed without identifying the function of problem behavior. Identifying the source or function of the behavior following S. Halder (*)  Department of Education, University of Calcutta, Kolkata, India © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_23

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evidence based strategy thus is of paramount importance for addressing the challenging behavioral needs of children with disabilities for further designing and developing intervention programmes that would yield effective result. Without identifying the contingencies of the challenging behavior in various settings would not lead to effective planning and intervention. Trial based functional analysis has been established as a standard and scientific way to identify the behavior contingencies as researched worldwide (Wilder et al. 2007). The trial based functional analysis provides the scope to minimize the time and target the child in his/her natural setting rather than a clinical or simulated setting. However the benefits of such an effective strategy has not been exposed and utilized by most settings in most countries in spite of the simplicity and convenience of implementation.

Children with Autism Spectrum Disorder and Challenging Behavior In spite of the abilities of the children with autism spectrum disorder (ASD) research strongly establishes the abilities of the children and adults with ASD. The ‘sprinter’s skills’ as termed by researchers in the field of autism research accepts and agrees the potentialities of these people in various areas if their skills are identified and honed at a very early stage. Extensive literature is available on the specific areas of the people with ASD that can yield significant result and contribution to society and global development. However the abilities of these people with ASD are sometime laidback or remain unidentified or unexplored even throughout life due to the overlapping severe behaviors. In most cases they are not given access to the mainstream schools or inclusion classroom due to their strong behavior needs and for the teacher being incapable to address their needs. Functional based analysis to identify the function of behavior is one of the strategies in which the function of the behavior of the particular child is analyzed quite systematically and scientifically and with much ease in a natural setting (Rispoli et al. 2015).

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Functional Behavior Analyses (FBA) The development of the FA (Iwata et al. 1982/1994) has been termed as “gold standard” (Mace 1994) and a milestone of the science of applied behavior analysis. Previous to the FA, a person was needed to attempt multiple behavioral interventions to identify which one is effective. Research establishes that most of the behaviors desirable or undesirable are learned in a social natural context and gets shaped either by the antecedents or the consequences of the behaviors as termed as positive or negative reinforcement contingencies. FBA is used to identify the type and source of reinforcement for challenging behaviors as the basis for intervention to target the problem behaviors. The basic idea behind FA is to analyze the functional relations between the problem behavior and the environmental events and to identify the reinforcement contingencies so that interventions through the three strategies (i.e. altering antecedent variables, altering consequent variables and teaching alternative behaviors) can be designed to decrease the problem behavior and increase adaptive behavior by altering these contingencies (Cooper et al. 2007; Gettinger and Stoiber 2006; Tiger et al. 2008). Due to the number of limitations to conduct a traditional FA, for e.g. the need of the technical traits and skills of the person in a clinical setting needed to conduct and interpret (Lang et al. 2008), also the risk of increase of the problem behavior etc. there has been need of another alternative way to identify the function of behavior and henceforth application of Trial based functional analysis has been found to be an effective strategy yielding similar results as traditional FA (Bloom et al. 2011; Beavers et al. 2013; Jensen 2011).

Trail Based Functional Analysis Trial-based functional analysis (Bloom et al. 2011) is extensively researched worldwide functional analysis method that is an attempt to bridge the gap between research and educational application (Bloom et al. 2011; Kurtz et al. 2003; Rispoli et al. 2014; Sigafoos and Saggers 1995). The trial-based FA is derived from Sigafoos and Saggers (1995)

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in which researchers use a discrete trial format in a classroom setting to determine whether the function of aggressive behavior is for attention, demand or escape, alone, and tangible, the usual typical functions as derived most broadly (Cooper et al. 2007; Jensen 2011; Iwata and Dozier 2008). The present study is an attempt to implement the Trial based FA to identify the function of challenging behavior of a 7 year child with ASD in a special school setting in eastern part of India.

Methodology Objectives of the Study Identify the function of the self-injurious behavior through trial-based FA, in classroom setting. Validate the outcome of the trial-based FA on the basis of function-based intervention.

Participant Seven year old child diagnosed with developmental disability was selected from the special education center as a participant for the study who engaged in repeated and frequent self-injurious head hitting behavior. The study was conducted in a child with no vocal repertoire.

Target Behavior Trial-based FA was implemented by the researcher/author of the study and data was collected on the problem behavior of the child during each control and trial segment as planned. The target behavior (self-­injurious behavior) under study for the child was head hitting behavior. Head hitting in the present study may be operationally defined as hitting of head against any part of his/her own body/other person/solid stationary object/item.

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Research Design AB design (i.e. basic single subject design) was implemented for the ­trial-based FA in classroom setting. The child was exposed separately to different test and control conditions to explore which type of condition (i.e. attention, demand, alone, and tangible) the child engages in problem behavior in the highest level. All the trials and sessions were conducted at the child’s classroom setting within his regular classroom routine. The trial-based FA and function-based intervention was held during classroom routines in different phases for effective result.

Ethical Consideration The study was conducted adhering to the ethical norms. As there is always a possibility or potential risk of problem behavior or the intensity of the behavior getting increased during the assessment period the parents were informed prior to the whole experiment procedure and informed consent was undertaken from the parents along with consent from the center director was also sort. The parents were also conveyed that in any threatening situation anytime during the assessment period the session may be terminated immediately.

Experimental Procedures Trial-Based FA The Trial-based FA is broken down into broadly 4 different trials, such as attention, demand, alone, and tangible and occurs throughout the daily routine of the child either classroom or home etc. Each type of condition included for the child was conducted (both control and test segments of each trial) throughout a one-week period. In order to shorten the length of the assessment the study consisted of 4-min each trials (2-min control condition and 2-min test condition). Graphical representation was plotted on the basis of the data retrieved to identify the conditions under which the targeted behavior occurred as a function

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of problem behavior. Ten sessions for each condition were conducted at a stretch of five days. The duration of the whole procedure was about 45 days.

Trial-Based FA Conditions The Trial based function condition as evidence based and followed extensively all over the world and found effective in classroom settings (Jensen 2011; Iwata and Dozier 2008). In the attention condition during the control segment, the researcher engaged with the child, and a moderately preferred item/activity was available. Reinforcements were identified with preference assessment with the child before the trial-based FA. The teacher delivered attention continuously throughout the segment. At the end of the control segment, the test segment began and the teacher turned away from the child saying she had to do some work. In the demand condition during the control segment, the child was seated without access to preferred items or task materials. If the child engaged in target behavior no consequences was provided and the trial was terminated. In the test segment, the teacher placed tasks/demand using the prompting sequence. If the child engaged in problem behavior, the teacher terminated the segment and said, “Okay, you don’t have to work.” In the Tangible condition during the control segment, the researcher was with the child, with the most preferred item/activity. Problem behavior produced no consequences and segment termination. At the test segment, the teacher removed the preferred item or activity from the child for 2 minutes. If problem behavior occurred, the teacher gave back the preferred item/activity to the child immediately and the segment was terminated. In the Alone condition instead of a control and test segment, the alone trials consisted of two consecutive 2-min test segments in which the child was left alone, without leisure or task materials/any preferred items/activities.

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Function-Based Intervention After the function of the behavior was identified from the trials, a function-based intervention was developed for the child based on the results of the trial-based FA based on evidence based best-practices and research in the field (Jensen 2011; Tiger et al. 2008). Function-based intervention sessions were conducted for 2 hours session for 5 days a week for 3–4 weeks. Sessions were conducted in the net area in the center during different types of activities like free play while the motivating operation (MO) was in operation. After baseline sessions were completed, intervention was implemented until stable behavior was reached to determine the effectiveness of the intervention. If the problem behavior decreased during the intervention phase, based on the outcome of the trial-based FA, it was assumed that the trial-based FA conducted accurately determined the function of the problem behavior. The function-based intervention comprised of a combination of various evidence based strategies in different successive phases—Functional communication training (FCT), Differential reinforcement of alternative behavior (DRA) and extinction (EXT).

Intervention Phases The first three phases were implemented for the tangible function and the subsequent phases for demand function. All of the intervention sessions continued for 2 hours every day for a few weeks (2–3 weeks) until a substantial decrease in problem behavior was noted. Same trainer along with the researcher conducted the sessions in FA and intervention sessions. Baseline: Baseline data was taken until a stable baseline was reached and visible.

Intervention for Tangible Function Setting/Environment. In order to target the tangible function intervention was held mostly in net area where the child had access to all the preferred tangible items/activities. As far as possible all escape

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motivating operations (M.O.), stimuli/stimulus were removed from the environment. Absolutely no demand other than the intervention was placed on the child. Environment was enriched with various most preferred reinforcers (like, tactile items, rice play, Spinning chair, sand etc. carefully selecting after reinforcement assessment) and kept within the reach of the child. The objective was to provide the child more alternative choices. Functional communication training (FCT). FCT is among the most common and effective differential reinforcement programs described in the operant literature which has been highly effective in reducing problem behavior (Berg et al. 2007; Carr et al. 2009; Lambert and Bloom 2012; Tiger et al. 2008; Wacker et al. 2011) in children with communication needs and challenging behaviors. FCT is a differential reinforcement (DR) procedure in which an individual is taught an alternative response that results in the same class of reinforcement identified as maintaining problem behavior while the problem behavior is typically placed on extinction (i.e., reinforcement no longer follows problem behavior). A functional analysis was conducted to identify the environmental events that serve as reinforcers for problem behavior and the conditions that evoke problem behavior. A physical prompt with a progressive prompt delay was used to teach the socially acceptable alternative communicative response and simultaneously strengthening that communicative response by the reinforcer maintaining the problem behavior. The subject was taught to request the functional reinforcer using the alternative communicative response and finally the target was to extend FCT across settings. Whenever the child indulges in head hitting behavior he was redirected/taught to mand for the same item appropriately through manual signs as the child was non verbal when the experiment started. This was continued until the child was able to mand independently appropriately (mastery achieved) without indulging in head hitting behavior. The child was thus taught all possible mands (For e.g.: teach mand for ‘swing’, ‘push’, etc.) through manual signs and reinforced immediately for the communicative response with the reinforcer maintaining the problem behavior.

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Differential reinforcement of alternative behavior (DRA). This intervention involves delivering reinforcement for a behavior that serves as a desirable alternative to the behavior targeted for reduction and withheld following instances of the problem behavior (Cooper et al. 2007). The participant was asked to do ‘hands in pocket’ and was differentially reinforced. In DRA the trainer reinforces occurrences of a behavior that provides a desirable alternative to the problem behavior but is not necessarily incompatible with it (Cooper et al. 2007). The child was taught at every 2 minutes an alternative behavior (i.e.‘hands in pocket’ which was already in the child’s repertoire) and reinforced immediately with the reinforcer maintaining the problem behavior. Reinforcement was delivered continuously for the alternative behavior. The Mastery criteria was that the child should be able to engage in alternative positive/ socially approved behavior independently (mand properly) instead of engaging in self-injurious behavior (i.e. head hitting behavior). Extinction. This intervention also comprised of discontinuing any reinforcement of a previously reinforced behavior (Cooper et al. 2007). These included extinction by ignoring and turning away from student when he engaged in SIB while reinforcing other appropriate behaviors at the same time. As a consequence if the child indulges in head hitting behavior reinforcement was terminated maintaining the problem behavior. In case of severe head hitting the child was physically blocked from head hitting. Schedule of reinforcement. The intervention started with a dense schedule of reinforcement gradually thinning subsequently with intermittent schedule of reinforcement in the next intervention phases. In 1st phase reinforcement was provided at fixed ratio 1 (FR1) for FCT and fixed Interval (FI) at 5 seconds for DRA, in the 2nd phase at FR10 for FCT and FI at 10 seconds and in the 3rd phase at FR30 for FCT and FI at 30 seconds and successively in the next phases. In the 2nd phase the child was taught frequently at every opportunity to ‘wait’. Also the child was asked to walk around for a while with hands in pocket and reinforced for every independent response. The target was to increase the time while putting his hands in pocket and differentially reinforcing it with the reinforce maintaining the problem behavior.

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In the third phase the reinforcement was thinned so the response ratio was increased.

Inter-Observer Agreement (IOA) Inter-observer agreement was done keeping with the guidelines of single subject design research (Cooper et al. 2007). Two observers who were specialized in behavioral analyses and had experience in the field of developmental disabilities for at least 1 year were recruited for IOA recordings. lOA data were taken during 100% of trial-based FA sessions. The lOA during the trial-based FA was 100%. lOA was taken during 70% of sessions during the function-based intervention. lOA during the function-based intervention ranged between acceptable range (i.e. 95 and 100%). Data were considered in the probe sheets as per 80% of agreement between the two observers. The IOA as calculated for all of the assessments ranged from 90 to 100% which clearly states strong reliability of all of the assessments done for the study.

Treatment Integrity An independent observer who was trained by the researcher recorded data 30–40% of all the trial-based FA sessions and the intervention sessions across all conditions to determine whether there was integrity during the entire procedure. Trial-based FA treatment integrity ranged between 95 and 100%. Function-based intervention treatment integrity ranged between 80 and 90%. Thus the treatment integrity was found to be within the acceptable range (Cooper et al. 2007).

Results Figure 23.1 displays the results of FCT for the participant. Data was analyzed by comparing the percentages obtained during control segments to the percentages obtained during test segments. Based on the

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Percentage of Selfinjurious behavior

selected data it was indicated that problem behavior was high and stable and that subject’s problem behavior occurred in the demand and tangible conditions only. No problem behavior occurred in the alone and attention conditions. It was found through the Trial-based FA that the child engaged in the head hitting behavior at the highest level (100%) during the test segment of the tangible conditin. The problem behavior was recorded also during the test segment of the demand trials (36.36%) and during the control segment (18%) of the demand trials. However no head hitting behavior was recorded in control or test segments for the alone and attention conditions. Henceforth as the data shows that problem behavior occurred mostly in the test segment of the tangible conditions, it can be concluded that problem behavior was mostly maintained by getting access to his most preferred activity/item/ tangible followed by escape from demand in some cases (Fig. 23.1). Figure 23.2 displays the results of function-based intervention for the participant. Result shows FCT responses and DRA for the subject in an hour. During intervention when the subject acquired the FCT response while differentially reinforcing alternative behavior, the problem behavior decreased. The graph (Fig. 23.2) clearly demonstrates the increase in

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FCT and DRA while substantially decreasing the head hitting behavior (SIB) of the child. The head hitting behavior in baseline was 161 which drastically decreased to 5 on average for an hour during intervention which establishes a clear and string effectiveness of the function-based intervention based on Trial based FA. Thus Trial based FA can be a 1st and essential step forward for addressing the challenging behavior of the children with ASD.

Discussion The study reconfirms the efficacy of trial-based FA to establish the function of head hitting behavior of a child with ASD in a natural classroom setting as also established by earlier researchers (Bloom et al. 2011). The trial based FA as an adaptation of the traditional FA may be especially useful for early childhood settings because it allows brief assessment trials in regular scheduled classroom activities throughout the day (Sigafoos and Saggers 1995). Identifying the function of problem

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behavior permits interventionists to implement differential reinforcement procedures effectively as a key component of intervention (Pelios et al. 1999). The study also suggests that function-based interventions can be successful in the classroom natural setting as stressed by earlier researchers (Reichow et al. 2013; Lambert et al. 2012). The present research findings establish a strong base for the teachers and practitioners for the application and significance of trial-based FA as compared to the traditional FA for identifying the function of challenging behaviors. Thus trial-based FA allows a reduction in implementation, assessment time and swift implementation of functional intervention to address the problem behavior. In the present study the researcher was able to identify two primary functions for problem behavior and successfully treated using a function-based intervention plan. These results demonstrated that interventions based on the outcome of trial-based FAs could reduce problem behavior and increase alternative functional communication in an early childhood setting. Trial based functional analyses can be implemented in classroom and home setting or any other natural settings in order to identify the function of the problem behavior of the child. Research in trial based functional analyses appears to be a promising means of assessing challenging behavior in applied setting and deserves continued attention in empirical research. Results of numerous earlier studies showed consistently that FCT decreased the occurrence of problem behavior substantially (Harding et al. 2009). In the present study, the participant learned to communicate appropriately through socially accepted manual signs rather than problem behavior as established by earlier researchers (Hanley et al. 2003). This two-step approach to treatment, conducting a functional analysis followed by functional communication training, has proven to be a very effective intervention model to reduce the problem behavior displayed by persons with developmental disabilities including ASD (Asmus et al. 2001; Kurtz et al. 2003; Wacker et al. 1998) which can eventually lead to access in an inclusion classroom and provide more scope for social development for people with ASD who have communication and socialization deficit. Children with ASD due to their communication needs (i.e. either no communication or partial

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communication) are not allowed the common mainstream classroom/ schools in many regions and there is a lot of inhibitions from the parents of typical children along with teachers to enroll these children in spite of their various positive traits in many countries. Addressing the behavior needs of these children and teaching them socially approved ways to communicate can help them get access to regular or mainstream/inclusive classroom (Dufrene et al. 2007; Kodak et al. 2013).

Delimitation of the Study Although the researcher did treat all functions successfully with an immediate follow up, but that is not included in this report due to limited time. Also the study was conducted in the natural classroom setting and extending the intervention in other setting like home is not included in the study which could have yield more interesting results for concrete generalizations. A multiple baseline study with multiple samples would have proved the effectiveness of the result most strongly but due to limitation of time it could not be performed. Due to limited time the intervention for demand function of the target behavior is not reported as a part of this project. Note. All raw data, and any related documents are kept confidential. Acknowledgements   The author acknowledges the guidance and support by Ms. Julliane Bell, BCBA, for all through the experiment. Also sincere thanks to Behavior Momentum India (BMI) and the Autism Center, (NGO) Kolkata for the enthusiasm and support all through.

References Asmus, J. M., Ringdahl, J. E., Sellers, J. A., Call, N. A., Andelman, M. S., & Wacker, D. P. (2001). Use of a Short-Term Inpatient Model to Evaluate Aberrant Behavior: Outcome Data Summaries from 1996 to 2001. Journal of Applied Behavior Analysis, 37, 283–304. Beavers, G. A., Iwata, B. A., & Lerman, D. C. (2013). Thirty Years of Research on the Functional Analysis of Problem Behavior. Journal of Applied Behavior Analysis, 46(1), 1–21.

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Berg, W. K., Wacker, D. P., Harding, J. W., Ganzer, J., & Barretto, A. (2007). An Evaluation of Multiple Dependent Variables Across Distinct Classes of Antecedent Stimuli Pre and Post Functional Communication Training. Journal of Early and Intensive Behavioral Intervention, 4(1), 305–333. Bloom, S. E., Iwata, B. A., Fritz, J. N., Roscoe, E. M., & Carreau, A. B. (2011). Classroom Application of a Trial-Based Functional Analysis. Journal of Applied Behavior Analysis, 44(1), 19–31. Carr, J. E., LeBlanc, L. A., & Love, J. R. (2009). Experimental Functional Analysis of Problem Behavior. In W. T. O’Donohue & J. E. Fisher (Eds.), Cognitive Behaviour Therapy: Applying Empirically Supported Techniques in Your Practice (2nd ed., pp. 211–221). Hoboken, NJ: Wiley. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied Behavior Analysis (2nd ed.). Upper Saddle River, NJ: Pearson Education. Crone, D. A., & Horner, R. H. (2003). Building Positive Behavior Support Systems in Schools: Functional Behavioral Assessment. New York, NY: Guilford. Dufrene, B. A., Doggett, R. A., Henington, C., & Watson, T. S. (2007). Functional Assessment and Intervention for Disruptive Classroom Behaviors in Preschool and Head Start Classrooms. Journal of Behavioral Education, 16, 368–388. Elsabbagh, M., Divan, G., Koh, Y., Kim, Y. S., Kauchali, S., Marcín, C., et al. (2012). Autism Research, INSAR, Global Prevalence of Autism and Other Pervasive Developmental Disorders. Gettinger, M., & Stoiber, K. C. (2006). Functional Assessment, Collaboration, and Evidence-Based Treatment: Analysis of a Team Approach for Addressing Challenging Behaviors in Young Children. Journal of School Psychology, 44, 231–252. Hanley, G. P., Iwata, B. A., & McCord, B. E. (2003). Functional Analysis of Problem Behavior: A Review. Journal of Applied Behavior Analysis, 36, 147–185. Harding, J. W., Wacker, D. P., Berg, W. K., Lee, J. F., & Dolezal, D. (2009). Conducting Functional Communication Training in Home Settings: A Case Study and Recommendations for Practitioners. Behavior Analysis in Practice, 2(1), 21–33. Iwata, B. A., & Dozier, C. L. (2008). Clinical Application of Functional Analysis Methodology. Behavior Analysis in Practice, 1(1–9), 35. Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., & Richman, G. S. (1982/1994). Towards a Functional Analysis of Self-Injury. Journal of Applied Behavior Analysis, 27, 197–209.

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Jensen, J. (2011). Classroom Application of Traial-Based Functional Analysis in an Early Childhood Education Setting. A Thesis in Masters in Science, Department of Special Education and Rehabilitation, Utah State University. Kates-McElrath, K., & Axelrod, S. (2008). Functional Assessment in Public Schools: A Tool for Classroom Teachers. Speaker’s Journal, 8.9, 83–96. Kelly, M. L., Reitman, D., & Noell, G. R. (2003). Practitioners Guide to Empirically Based Measures of School Behavior. New York: Kluwer Academic Plenum Press. Kodak, T., Fisher, W. W., Paden, A., & Nitasha Dickes, N. (2013). Evaluation of the Utility of a Discrete-Trial Functional Analysis in Early Intervention Classrooms. Journal of Applied Behavior Analysis, 46(1), 301–306. Kurtz, P. F., Chin, M. D., Huete, J. M., Tarbox, R. S. F., O’Connor, J. T., Paclawskyj, T. R., et al. (2003). Functional Analysis and Treatment of SelfInjurious Behavior in Young Children: A Summary of 30 Cases. Journal of Applied Behavior Analysis, 36, 205–219. Lambert, J. M., & Bloom, S. E. (2012). Trial-Based Functional Analysis and Functional Communication Training in an Early Childhood Setting. Journal of Applied Behavior Analysis, 45(3), 579–584. Lambert, J. M., Bloom, S. E., & Irvin, J. (2012). Trial-Based Functional Analysis and Functional Communication Training in an Early Childhood Setting. Journal of Applied Behavior Analysis, 45(3), 579–584. Lang, R., O’Reilly, M. F., Lancioni, G., Machalicek, W., Rispoli, M., & Chan, J. (2008). A Comparison of Functional Analysis Results When Conducted in Contrived Versus Naturalistic Settings. Journal of Applied Behavior Analysis, 41, 441–445. Lewit, E. M., & Schuurmann Baker, L. (1996). Children in Special Education. Special Education for Children with Disabilities, 6, 139–151. Mace, F. C. (1994). The Significance and Future of Functional Analysis Methodologies. Journal of Applied Behavior Analysis, 27, 385–392. Meador, D. M., & Osborn, R. G. (1992). Prevalence of Severe Behavior Disorders in Persons with Mental Retardation and Treatment Procedures Used in Community and Institutional Settings. Behavioral Residential Treatment, 7, 299–314. Pelios, L., Morren, J., Tesch, D., & Axelrod, S. (1999). The Impact of Functional Analysis Methodology on Treatment Choice for Self-Injurious and Aggressive Behavior. Journal of Applied Behavior Analysis, 32, 185–195. Reichow, B., Boyd, B. A., Barton, E. E., & Odom, S. L. (2013). Handbook of Early Childhood Special Education. Sage, 25(1), 35–48.

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Rispoli, M., Ninci, J., Neeli, L., & Jaini, S. (2014). A Systematic Review of Trial Based Functional Analyses of Challenging Behaviour. Journal of Physical Developmental Disabilities, 26, 271–283. Rispoli, M., Burke, M. D., Hatton, H., Ninci, J., Zaini, S., & Rodriguez, L. (2015). Training Head Start Teachers to Conduct Trial – Based Functional Analyses of Challenging Behavior. Journal of Positive Behavioral Interventions, 17, 235–244. Sigafoos, J., & Saggers, E. (1995). A Discrete-Trial Approach to the Functional Analysis of Aggressive Behavior in Two Boys with Autism. Australia & New Zealand Journal of Developmental Disabilities, 20, 287–297. Tiger, J. H., Hanley, G. P., & Bruzek, J. (2008). Functional Communication Training: A Review and Practical Guide. Behavior Analysis in Practice, 1, 16–23. Wacker, D. P., Berg, W. K., Harding, J. W., Derby, K. M., Asmus, J. M., & Healy, A. (1998). Evaluation and Long-Term Treatment of Aberrant Behavior Displayed by Young Children with Disabilities. Journal of Developmental and Behavioral Pediatrics, 19, 260–266. Wacker, D. P., Harding, J. W., Berg, W. K., Lee, J. F., Schieltz, K. M., Padilla, Y. C., et al. (2011). An Evaluation of Persistence of Treatment Effects During Long-Term Treatment of Destructive Behavior. Journal of the Experimental Analysis of Behavior, 96, 261–282. Wilder, D. A., Harris, C., Reagan, R., & Rasey, A. (2007). Functional Analysis and Treatment of Noncompliance by Preschool Children. Journal of Applied Behavior Analysis, 40, 173–177.

24 Inclusive Practice Through Layers of Learning Intervention Lorraine Graham and Jeanette Berman

Introduction Much of the practice that supports the inclusion of students with ­disabilities around the world is anchored in international conventions, such as the United Nations Convention on the Rights of People with Disabilities (UNCRPD) (United Nations General Assembly 2007), the Sustainable Development Goals (SDG) (UN 2015) and in national regulations such as the Australian Disability Discrimination Act (1992) and Disability Standards for Education (Commonwealth of Australia 2005). These legal obligations focus on ensuring inclusive and quality education for all and promoting lifelong learning, as articulated in Sustainable Development Goal 4. In turn,these legal obligations were

L. Graham (*)  Melbourne Graduate School of Education, Carlton, VIC, Australia e-mail: [email protected] J. Berman  University of New England, Armidale, NSW, Australia © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_24

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translated into education system policies and practices; for example, the Australian Professional Standards for Teachers (AITSL 2011) includes as one of its standards that teachers must “meet the specific learning needs of students across the full range of abilities” (Standard 1.5). This clearly makes inclusive practice core business for all teachers.

From Special Schools to Inclusive Schools Learning intervention for students with disabilities has traditionally been the responsibility of a segregated section of the education system, with placement in special education schools or units seen as “the intervention.” There is an assumption inherent here that all learning needs will be met in specialist settings, since there is an inferred match between the nature of the disability and the type of teaching provided. Instead, evidence-based learning intervention, that is, intentional action that supports learning in all classrooms, is foundational to formulating an inclusive and educationally effective approach for students with disabilities. Inclusive classroom teachers draw on their theoretical and practical understandings of child development and learning, as well as their expertise in teaching, to provide instructional opportunities that match students’ learning needs. They employ approaches, such as differentiation, to shape learning opportunities and choose teaching strategies for a range of students in response to identified learning needs. Inclusive teachers also gather evidence of the difference their teaching makes for students’ learning (see Berman and Graham 2018; Hattie 2009, 2011; Mitchell 2014). In addition, specialist teachers and other educational professionals, (e.g., educational psychologists, speech pathologists, and other allied health workers) carry out casework, usually with a focus on individual students who have disabilities or learning difficulties. These professionals collaborate with classroom teachers to adapt and design learning opportunities and to select teaching strategies that are most likely to meet the needs of individual students within the class. Specialist teachers also contribute to the general consideration of other evidence-based intervention approaches. These may be provided in small groups or

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individually, to complement the classroom learning. A key aspect of learning intervention, then, is the combination of responsive teaching and educational casework that underpins the strategic and careful use of evidence-based intervention in classrooms, small groups, and individually, as shown in Fig. 24.1. Responsive teaching and educational casework are not solo tasks. They are aligned to support the best possible teaching with the main aim of enhancing learning within classrooms. They draw on the skills of many professionals as an inherent part of developing intervention for learners experiencing difficulties or disabilities. The roles of educational and allied health professionals include assisting teachers and families to make decisions about the most appropriate focus and level of intervention; establishing ways to assess subsequent learning; and, evaluating the intervention as the basis for subsequent decisions about action. Combining the expertise of the professionals interested in the learning and development of students is important. It enriches the decision-making process and creates a sense of shared responsibility for implementing intervention. Indeed, if the collective efficacy of the professionals involved in supporting any student with a learning difficulty or disability is as powerful as is suggested by Hattie (2016), then such collaborative efforts stand to make a considerable positive difference. The provision of appropriate learning opportunities and the use of the most suitable teaching strategies are at the heart of effective teaching.

Fig. 24.1  Responsive teaching and educational casework (Berman and Graham 2018)

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Teachers who are successful in including students with disabilities tend to see all of their students as having individual needs (Shaddock et al. 2007). Such effective teachers focus on a class of individual learners. They also draw on expertise available through educational casework, where possible, and consider any small group or individual intervention provided for students as complementary to the main game of learning in inclusive classrooms. A key aspect of learning intervention practice, therefore, is the strategic and careful use of different groupings and contexts for learning: We see these as constituting “layers of intervention.” This conceptualization of “layers of learning intervention” derives from the Response to Intervention (RtI) model that is used as a system framework in many schools (e.g., Fletcher and Vaughn 2009; Fuchs and Fuchs 2006).

From Response to Intervention to Layers of Learning Intervention Originally, RtI was designed to replace the conventional process for diagnosing learning disabilities (LD) within the United States’ legislative context. Two key ideas drove the development and adoption of this framework. First, that education should not wait for a diagnosis of learning disability before providing appropriate evidence-based intervention. Second, that the process of diagnosing LD should be able to draw on the information gathered during the provision of intervention. The usual representation of the RtI model is a triangle divided into three tiers (Fig. 24.2). The tiers reflect the proportion of students who are proposed to learn effectively in response to increasingly targeted and intensive learning intervention. Tier 1 refers to foundational classroom teaching that results in effective learning for most (about 75–90%) learners. Tier 2 denotes the situation when some changes are made to cater for learners who did not learn “as expected” from classroom teaching. Five to 15% of learners are successful when these kinds of changes are made. Tier 3 is associated with the provision of individual intervention for the 1–5% of learners who do not learn successfully from the instruction provided in Tier 1 or from Tier 2.

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Fig. 24.2  Tiers of evidence-based intervention (Berman and Graham 2018)

The RtI multi-tiered model of learning intervention can be ­ nderstood as the provision of increasingly focused intervention based u on the premise that if this doesn’t work, then let’s do something more targeted and intense. RtI has also been characterized as a wait-to-fail model that assumes all is going well instructionally, until a student fails according to certain criteria. However, since responsive teachers and educational caseworkers design and implement interventions that support students at all three tiers of the model, such linear thinking is not necessarily helpful. Instead, we prefer the conceptualization of inclusive practice as fluid and flexible. For example, layers do not operate in isolation; instead, they combine to provide learners with instructional opportunities that are tailored to individual and group learning needs. All layers are considered as part of the wider design of appropriate intervention, from universal classroom instruction and responsive differentiation, to small group and individually focused evidence-based intervention that may be short or long term. Figure 24.3 depicts how these layers of learning intervention work together. Providing layers of learning intervention depends on high-level collaboration between classroom teachers and educational casework professionals. While the classroom teacher maintains a whole-class focus,

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Fig. 24.3  Layers of learning intervention (Berman and Graham 2018)

the educational casework professional emphasizes individual student’s needs. These orientations come together in the following ways: • In layer 1, teachers provide evidence-based inclusive teaching, incorporating multiple modes of access to the curriculum. They notice how students are responding through careful monitoring and evaluative assessment. Using this information to make decisions, teachers use increasingly responsive differentiation to design learning opportunities and select teaching strategies that match the actual variability of learning needs in the class. In this way they target group and individual learning needs. • In layer 2, teachers use short-term, flexible, small group, and individual teaching as part of their class program, or elsewhere, to support classroom teaching. • In layer 3, longer-term individual or small group intervention complements classroom teaching. In this layer, teachers collaborate with other professionals to make individualized adaptations for students, in light of educational casework that involves specialized assessment and expertise (Berman and Graham 2018).

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In the following sections, we unpack each of the layers of learning intervention and describe some of the basic instructional approaches that characterize this model of inclusive teaching and learning.

Layer 1: Responsive Classroom Teaching The foundational layer of learning intervention is responsive class teaching. The ultimate aim of responsive teaching is to ensure that every learner’s needs are met. Teaching groups of students still relies on conventional learning opportunities, although increasingly teachers provide information through multimedia, rather than relying primarily on spoken or written forms. In order to optimize access to the curriculum for all learners, responsive teachers provide multiple means for students to access information, to engage with it, and to respond to it. They often use the Universal Design for Learning framework, as described below.

Universal Design for Learning The Universal Design for Learning model (UDL: Meyer et al. 2014; CAST 2017) grew out of consideration of how everybody can access the built environment. It relies on the idea that if a building is fully accessible by people who rely on wheels and wheelchairs for mobility then it will be accessible to everybody. This same notion of making the curriculum and classroom learning activities accessible for all learners underpins UDL. Using UDL approaches emphasizes how students access the curriculum. It is based on three principles: • Providing multiple means of representing the curriculum material to allow access for all (e.g., through considering perception, language, mathematical expressions and symbols, and comprehension); • Providing multiple means of engagement (e.g., through considering options related to physical action, expression and communication, and executive functioning); and

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• Providing multiple ways for learners to manage and express their learning (e.g., through recruiting interest, sustaining effort and persistence, and developing self-regulation) (CAST 2011, p. 5). Such an approach acknowledges that aspects of the social and physical environment and interactions of learners with these environments may “define” and contribute to “disabilities” in many instances. It is, therefore, important to reduce any barriers associated with educational settings, before considering other compensatory or alternative strategies to meet learners’ needs. Specifically, the UDL approach means that learning opportunities in classrooms can be designed with more variety than previously. Indeed, responsive teachers are prepared to teach a range of learners in any group, and act proactively by providing multiple ways for students to become engaged with content, to access what they need, and to demonstrate their learning. At the same time, responsive teachers also notice which learning opportunities and teaching strategies are most successful for their students, so that future teaching is increasingly tailored to students’ learning needs. Finding out about students as learners depends on effective assessment. Assessment events like tests or assignments are not the only way of providing evidence of what each student knows and can do, however. Observing students’ use of learning strategies and actively engaging in teaching–learning interactions provides valuable evidence about how students engage with their learning environment; relate to others; think; manage themselves; and, actively learn. A general sensitivity to how life experiences may affect learners is fundamental to being an effective, responsive teacher and to building strong relationships with students. This kind of mindset is also fundamental to responsive differentiation.

Responsive Differentiation Differentiation aims to not only reduce the barriers to learning that are often associated with particular impairments or conditions, but to shape learning opportunities and teaching strategies to be most effective for individual students. The process of considering what “helps” and what “hinders” learning is important. It is, in fact, fundamental to designing classrooms learning activities that are not in themselves barriers to

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learning. For example, a written orientation toward the delivery of task instructions reduces access for any students who struggle with reading and interpreting text information. In contrast, responsive teachers use many strategies to, (i) prepare students for the task, (ii) support their access at the time, or (iii) facilitate the achievement of the primary aim of any given lesson (that may have nothing to do with written literacy). Another example along these lines is the teaching or re-teaching of vocabulary and key concepts so that these are not barriers to learning when students engage in classroom learning activities. This strategy can support students with literacy or language difficulties, as well as those learners who simply require more time to make sense of new ideas and concepts. Although the practice of universal design and differentiation both grew out of a need to provide alternatives for learners who struggle to access learning, these approaches can be used by teachers to engineer instruction in such a way that each learner is stretched and becomes increasingly independent. In addition to these kinds of planning considerations, it is also important to making on-the-spot adaptations when learners indicate that they either need more assistance with a learning activity or that they have mastered what was planned and need extension.

Making Planned Adaptations The focus on adaptations or adjustments to teaching plans is derived from the idea that there is some form of general teaching that is appropriate for most learners and that it can simply be changed for those learners who are not “typical.” An elementary approach to differentiation is to teach to the “middle” of the class, while planning to extend some students and re-teach others. In the “layers of intervention” model, we want to move away from such a normative approach to one that begins with the intended learning outcomes of the curriculum and then immediately prompts teachers to generate a range of learning opportunities appropriate for all their students. Although teachers might start this process with a large range of learning opportunities, as they get to know their students, they will refine the range of learning opportunities so that their responsive teaching becomes more targeted

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to students’ particular needs. The evidence generated by student responses to particular learning opportunities and teaching strategies will support this process. As well, planned adaptations are made based on information provided by previous teachers, other professionals, parents, and the students themselves. Teachers may have access to comprehensive reports and files of information about particular learners that provide insights to inform planned adaptations. This information is about what learning opportunities and teaching strategies have been most effective in the past. Often such suggested strategies are included in individual learning plans. As well, collaboration with the professionals involved in educational casework, particularly those who have had longer-term involvement with an individual student can provide valuable insights into what has worked in previous situations, and what has not. This approach of planning adaptations or adjustments is in tune with the legislative framework of expectations within which teachers work. Specifically, teachers have “an obligation to make reasonable adjustments where necessary to ensure that students with disabilities are able to participate in education and training on the same basis as students without disabilities” (Commonwealth of Australia 2005, p. 2). Reference to the student in these Disability Standards reflects the importance of insights from students and their families into what may be best to use at any particular time. Families have known the full developmental journey of the student, and can bring longitudinal evidence to teachers’ planning. Students also can provide insights from within their own experiences. Finally, responsive teachers bring their professional knowledge and expertise to the task of filtering and framing information and generating effective strategies. Another key basis for making planned adaptations is the body of research evidence related to intervention that is relevant to any particular learner’s situation. Rigorous research may provide directions and suggestions that can be considered in relation to what is known about a learner’s needs at any specific time. Responsive teachers and educational casework professionals need to consider this evidence in light of what may be relevant, thus making considered decisions about what planned adaptations may be most appropriate.

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Making on-the-Spot Adaptations Teachers also make on-the-spot adaptations to differentiate instruction throughout all their teaching interactions. Sometimes there will be mismatches between what teachers anticipate will be engaging and appropriate for students and what works on any particular day. In such cases, teachers have to be expert at making spontaneous adjustments and adaptations to ensure success for students. Effective teachers also make on-the-spot adaptations all the time to tailor interactions with learners in their classes. Such decisions about how to organize responsive differentiation are based on teachers’ knowledge of what students bring as individual learners, as well as how they fit together as a group of learners. In essence, what we are describing here is how teachers teach in response to what they know about their groups of learners and each learner individually and the complex professional act of matching learning opportunities to the learning needs of their students. Spontaneous adaptation is also a function of teachers’ perceptions of what is happening for any individual or group of students, as well as what might be possible to change in order to make the learning more effective. Often these sophisticated decisions are supported by a high-order understanding of learning, of teaching, and of learning–teaching interactions that may not be clearly conscious. In such circumstances, it is important that teachers take time to consider what on-the-spot changes were made and what led to those decisions. Often such reflection can provide insights into students’ learning needs that may not have emerged from more contrived assessment situations.

Layer 2: Small Group and Individual Short-Term Intervention Learning in the second layer of learning intervention involves small group teaching or individual teaching for short periods of time. There are many reasons for such an organization of learning opportunities, including the priorities and resources of the governments, education systems, communities, families, and schools, and the perceived needs of particular students. Learning opportunities in small group work

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mirror those available in classrooms, but provide an increased intensity of teaching to better prepare students for a class lesson, or to reinforce learning from a previous occasion. Many schools organize intensive and targeted small group or individual teaching for short periods of time to meet students’ short-term needs. This type of intervention is central to an approach which seeks to find an intensive, explicit systematic intervention that can compensate for delays or disorders in learning caused by both the inherent nature of learning, the learner and associated environmental factors such as absences or illnesses. Such short-term intervention is crucial for some hierarchical domains of the curriculum, including the vital skills of using spoken and written language and the number system. Because such short-term intervention is often used to “plug” what are seen as “gaps,” there is often an expectation that it will fix the problem and then the student will be able to keep up with the others. However, learners who do show delays in learning at one time tend to have delays at other times in their learning journeys. In many cases it may be that the interaction between the student and the learning environment is the issue, and this cannot be “fixed” by short-term intensive teaching for the student alone. Aligning short-term intervention with classroom teaching is essential to provide sustainability of effective learning to allow the transfer and maintenance of what is learnt in short-term intervention into classroom learning over time. The students in need of small group or individual short-term intervention will not always be the same students and so responsive, flexible grouping is required. Such responsive grouping is deliberate and based on what is known about the learners as a group and as individuals. Sometimes the small group work will be skills-focused and may be best arranged with groups of students with the same skills. At other times there will be need for a more heterogeneous group of learners in order to provide a range of ideas to work with and extend. Teachers need to plan the groupings that will support the attainment of intended learning outcomes and to make decisions about whether students work with teachers, with tutors, or peers. Not all small group or individual intervention is developed in response to student learning needs, however. Sometimes short-term interventions are triggered by an availability of government grants or changes

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in funding priorities. In such situations, it is important to consider the best ways to provide useful, relevant short-term intervention for groups or individual students who could benefit from more intensive teaching. It is always useful to remember that small group and individual intervention can be valuable at any time for any learners, as it creates the opportunity for consolidation and depth of learning. Instead of thinking about which students are struggling, the question to ask can be, “Which students would benefit from intensive teaching at this time”?

Layer 3: Small Group or Individual Longer-Term Intervention The third layer of learning intervention involves small group or individualized intervention for longer time periods. The students for whom this kind of support occurs most frequently are usually those who have been involved in long-term educational casework. These students may have significant disabilities or developmental delays that have been recognized as needing intervention throughout their school years. They can also be learners who experience significant ongoing learning and/or behavioral difficulties for a variety of reasons. For these students, small group and individual intervention with specialist teachers and pediatric allied health workers (e.g., psychologists, speech pathologists, occupational therapists, and physiotherapists) is usual and continues to be a part of the layers of learning intervention experienced by them throughout school. These students will constantly experience learning intervention across all layers; responsive teaching and differentiation in the classroom, as well as small group, and individual intervention. Sometimes a professional such as a speech pathologist provides consistent small group or individual intervention. Sometimes the intervention is facilitated by whoever is employed at the time, often a teaching assistant. Although teaching assistants can be involved in students’ learning across all layers of intervention, their input is often most significant in layer 3. Teaching assistants can become very familiar with the learning needs and engagement profiles of individual learners. They are, however, always reliant on professional guidance and support from educators in order to respond effectively to learners’ instructional needs.

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Flexible Use of Layers of Learning Intervention The mixture of individual, small group, and large group learning at the heart of the “layers of learning intervention” model emphasizes that it is essential to have strong links between what is being taught in individual or small group sessions and what is being taught in the classroom. For example, strategies such as pre-teaching during intervention sessions can be used strategically to prepare learners for content that is to be introduced later in the class. Similarly, small group or individual teaching can assist by consolidating classroom learning for many students, not just the students who have disabilities. Responsive teachers use flexible groupings to provide different types of learning opportunities for their class across many lessons. They plan who will facilitate the learning for their students in what kind of grouping, and change arrangements depending on the students’ needs and the nature of the learning activities (Graham et al. 2002). All learning intervention has to be aimed at making classroom teaching as effective as possible. This constant link between layers 2 and 3, and the base layer of classroom teaching is represented in Fig. 24.4. The use of small group and individual intervention can be within classroom-differentiated instruction, or separately, and may be appropriate for short-term or longer-term intervention. The way that schools set up processes for creating and managing different layers of intervention is influenced by a number of key factors that can support the alignment between classroom teaching and specialist intervention, including: • physical set up; • resources, in terms of professional and paraprofessional staff; • school-based systems and procedures designed to support all learners; • the provision of spaces and places for whole class, small group, and individual intervention; and • relationships with families and the outside services that may be involved with students who have disabilities. In many schools and school systems there is a move toward deploying specialist teachers (including special educators) as consultants rather

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Fig. 24.4  Flexible use of individual and small group teaching connected to the classroom program

than intervention teachers. In these schools, specialist teachers may teach to provide support in classrooms. This is a typical approach used in many education systems that are working toward inclusion. Such an approach places the expertise of the special educator in classrooms for as much time as possible, and expects considerable collaboration to occur between teachers and other professionals, such as psychologists or speech pathologists. The aim is to increase the capacity of all involved to better support the classroom learning of all students. Certainly, inclusion aims to build teacher capacity so that all learning needs can be met in usual daily practice, but extending this goal into the belief that everything has to happen in the same room is simplistic. Determining an appropriate space for each learning activity is part of effective decision-making in learning intervention. It is often not effective to organize all small group and individual teaching in classrooms for pragmatic reasons, such as space and noise. Instead, careful consideration of the best place or space for teaching and learning is important.

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Summary In this chapter we have presented a model of “Layers of Learning Intervention” that we describe as working together to support inclusive classroom teaching and learning for students with disabilities. The foundation layer is the provision of universal instruction that is designed to maximize access to learning for all. Extending this access requires careful, differentiation of learning opportunities, and teaching strategies that are managed by a responsive teacher in order to provide appropriate challenges for all learners. Complementing differentiated classroom instruction are two layers of small group and individual intervention. Short-term intervention is instigated by classroom teachers, or within educational casework and aims to support learning in the classroom. Longer-term individual or small group intervention is common for students who have identified disabilities and who may also be supported by allied health professionals or by teaching assistants within classrooms. All of these layers can be used flexibly and aim to better support classroom learning for all learners. This model for multi-layered intervention for students with disabilities in the Australian context responds to an important goal of inclusive education: It aims to make the interaction between any student and the school environment as supportive of learning as possible. The traditional focus on diagnostic assessment to inform intervention is circumvented by the actions of responsive classroom teachers who create learning opportunities and select teaching strategies that reduce potential barriers to students’ learning. As well, by responding directly to the specific learning needs of individual students, classroom teachers in collaboration with other professionals in educational casework, shape and reshape the learning environment to optimize all students’ access to the curriculum and positive learning outcomes.

References Australian Government. (1992). Disability Discrimination Act 1992. Australian Institute for Teaching and School Leadership [AITSL]. (2011). Australian Professional Standards for Teachers. Carlton South, VIC: Education Services Australia.

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Berman, J., & Graham, L. (2018). Learning Intervention: Educational Casework and Responsive Teaching for Sustainable Learning in Inclusive Schools. London, UK: Routledge. Centre for Applied Special Technology [CAST]. (2011). Universal Design for Learning Guidelines Version 2.0. Wakefield, MA: CAST. Centre for Applied Special Technology [CAST]. (2017). About Universal Design for Learning. Retrieved from http://www.cast.org/our-work/aboutudl.html#.WZN6OHcjGV4. Commonwealth of Australia. (2005). Disability Standards for Education, 2005 Plus Guidance Notes. Barton, ACT: Australian Government Press. Fletcher, J. M., & Vaughn, S. (2009). Response to Intervention: Preventing and Remediating Academic Difficulties. Child Development Perspectives, 3(1), 30–37. Fuchs, D., & Fuchs, L. S. (2006). Introduction to Response to Intervention: What, Why, and How Valid Is It? Reading Research Quarterly, 41(1), 93–99. Graham, L., Berman, J., & Bellert, A. (2002). Practical Literacy Programming for Students with Disabilities: Making IEPs Work in the Classroom. In B. Gordon (Ed.), Practical Literacy Programming (pp. 121–135). Sydney, NSW: Primary English Teachers Association (PETA). Hattie, J. (2009). Visible Learning: A Synthesis of Over 800 Meta-Analyses Relating to Achievement. Abingdon: Routledge. Hattie, J. (2011). Visible Learning for Teachers: Maximising Impact on Learning. London: Routledge. Hattie, J. (2016, June). Shifting Away from Distractions to Improve Australia’s Schools. Jack Keating Memorial Lecture. University of Melbourne. Meyer, A., Rose, D., & Gordon, D. (2014). Universal Design for Learning: Theory and Practice. Wakefield, MA: CAST Professional Publishing. Mitchell, D. (2014). What Really Works in Special and Inclusive Education: Using Evidence-Based Teaching Strategies (2nd ed.). London: Routledge. Shaddock, A. J., Hook, J., Hoffman-Raap, L., Spinks, A. T., Woolley, G., & Pearce, M. (2007). How Do Successful Classroom Teachers Provide a Relevant Curriculum for Students with Disabilities in Their Mainstream Class? Retrieved from http://www.dest.gov.au/schools/losd. United Nations General Assembly. (2007). Convention on the Rights of People with Disabilities. Geneva, Switzerland: United Nations. UN General Assembly. (2015). Transforming Our World: The 2030 Agenda for Sustainable Development, 21 October 2015, A/RES/70/1. Retrieved from https://www.refworld.org/docid/57b6e3e44.html. Accessed 11 January 2019.

25 Inclusion in Home, Social, and Educational Settings for Children with Autism in India—Enablers and Challenges Sridhar Aravamudhan and Smita Awasthi

Introduction Autism in Indian Context The epidemic rise in the diagnosis of autism worldwide, have left families and societies struggling to cope with a plethora of problems associated with the disorder. The challenges are more intense in India because of a severe shortage of mental health professionals and behavioral experts. The Center for Disease Control (CDC), United States, publishes estimated prevalence of autism among the nation’s children. The estimates are for four years prior to the report date. In 2018, their reported prevalence estimates for 2014 had climbed to 1 in 59, up from

S. Aravamudhan (*) · S. Awasthi  Behavior Momentum India, Bengaluru, India e-mail: [email protected] S. Awasthi e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_25

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1 in 166 in 2000 (“CDC increases estimate of autism’s prevalence by 15 percent, to 1 in 59 children | Autism Speaks” 2018). In India, prevalence studies have been limited with studies done in different regions with different screening stools arriving at varying estimates. Raina et al. (2015) stated that an extensive PubMed search for prevalence figures of autism in India failed to turn up any results. Using the Indian Scale of Assessment for Autism (ISAA; Deshpande et al. 2015) they studied all 1–10-year-old children in the northwestern state of Himachal Pradesh (n = 11,000) in India and reported a prevalence of 0.9 per 1000 or 9 per 10,000 (1 in 1111). A survey conducted in a semi-urban population of South India by Poovathinal et al. (2016), arrived at a rate of 23.3 per 10,000 (1 in 429). Rudra et al. (2017) studied 11,849 school going children aged 3–8 years in Kolkata from 28 schools in 3 boroughs or municipal wards. The study was conducted in several stages using SCDC, a brief screening tool, Social Communication Questionnaire (SCQ), and ADOS. They arrived at a prevalence estimate in this age group of 0.23% or 23 in 10,000 or 1 in 435. In another study, toddlers aged between 13 and 24 months in the state of Kerala, who were born between April 1, 2014 and March 31, 2015 were screened using M-CHAT-R (Jaisoorya et al. 2018). The authors also used a “Best Seven” (Robins et al. 2010) from M-CHAT-R. Their estimates were 5.5% of toddlers at risk for ASD using M-CHAT-R and 2.7% using “Best Seven.” Even the lower 2.7% translates to 1 in 37 for toddlers. This is much higher than other estimates. The population of 0–24-yearolds as per the 2001 census was 553,620,834 (Census of India 2018). A prevalence of even 1 in 400 would translate to 1.4 million persons affected by autism in India. Problems with respect to awareness, infrastructure, and availability of interventions abound. Despite the high prevalence, autism was recognized as a disability by the Government of India as late as 2016. The Government of India, through the Ministry of Social Justice and Empowerment’s Department of Empowerment of Persons with Disabilities, issued guidelines for awarding a disability certificate through a Gazette on April 25, 2016. Singh (2018), referring to a recent National Mental Health Survey, points to the abysmally low levels of mental health professionals in India and a treatment gap

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which is as high as 83% for any mental disorder. There are no ­available statistics suggesting resource availability for pre-treatment services such as screening and diagnosis. Despite optimistic calculations, nearly 90% of the children on the spectrum could thus remain undiagnosed and without intervention. Further, 72.2% of the population lives in rural areas with only 25% of health infrastructure, medical manpower, and other resources (Kumar 2011). Thus, what is known about affected children in rural areas will be even lesser. The lack of insurance funding or government support for early intervention programs means that parents of children with autism must manage to fund privately. The breakdown of the joint-family system and the disability itself also comes in the way of child management, making it difficult for both parents to hold full-time jobs limiting earning capacity. In an urban Indian city, the cost of evidence-based interventions could be anywhere from INR 15,000–60,000 per month ($231–923 per month). Almost 18% of the population in India has a maximum income of INR 6807 ($105) per month while 60% of the population earns a maximum of INR 27,235 per month or $419 per month (Vanneman and Dubey 2013). Thus, quality interventions can be afforded only by a small proportion of families who are richer among the rich in India! This chapter will discuss the meaning of inclusion of young children with autism in social and educational contexts in India identifying some of the key enablers and barriers to successful inclusion.

Methodology The chapter uses a mixed-methods approach comprising of 2 shortterm case studies and 3 longitudinal case studies of children with autism covering their experiences from periods ranging from 3 to 15 years. The case studies used a combination of Single-Subject Experimental data from behavioral intervention centers and interviews with parents on how the interventions affected the social or educational inclusion of their children. Case studies are appropriate when a researcher wants to address a descriptive question (Gay et al. 2009) and help understand behavioral conditions through the perspective of the actor (Tellis 1997).

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They include qualitative and quantitative results, focus on the process and reflect on the results of the phenomenon of interest while using reconstruction and analysis of cases being studied. Case study results though generalized to theory are not generalized to population or universes. Multiple cases can be used to replicate, pattern match and thus strengthen the confidence in the theory. In this study, embedded within case studies are experiments that evaluate the effect of an intervention using Single-Subject Experimental Design (SSED). In SSED designs, different conditions are applied to the same system, usually, one individual (Sidman 1960). Some commonly used conditions are baseline (when no intervention is in effect), intervention, and follow up. Both authors have extensive experience in educating, teaching skills to children with autism and promoting their inclusion in social and educational settings. They have an immersive experience with each of the case studies presented.

Participants in Case Examples and Longitudinal Case Studies Purposive sampling was used and participants for case studies were selected based on the specific contexts, enablers, and barriers the authors proposed to explore. The participants were children with autism enrolled in intervention centers founded by the second author for lengths of time ranging from 12 months to several years. At the time of enrollment, the ages of participants were between 3 and 12 years. The names and any unique identifying information of participants have been changed on parent’s request.

Meaning of Inclusion The meaning of social inclusion is often discussed in terms specific to inclusion in educational settings ignoring the home environment and community settings. Social exclusion refers to exclusion from social aspects of a broader community due to a disadvantage and social

25  Inclusion in Home, Social, and Educational Settings …     501

inclusion is defined as the opposite of social exclusion (Little 2017). This study will use the broader definition of social inclusion as well as inclusion in educational settings. The authors, during their meetings with parents of school going children with an autism diagnosis, would ask why the parents opted for mainstream school placements instead of 1:1 intensive behavioral interventions. From the responses, it appears that such school placements in the Indian context are often based on wishful thinking that the sheer availability of a large community of peers will facilitate the acquisition of social skills, improve eye contact, observational learning, and that the core symptoms of autism will mysteriously disappear. Placements in job roles occur with the expectation of acquiring skills with a minimal focus on training in other parameters such as following instructions from peers, seniors, following routines, and reporting problems. Thus, placement decisions are guided by emotion and the need to appear “normal” due to societal where awareness of the disability and support is low. This also causes families to withdraw and become increasingly isolated. The second author presents her view that while designing interventions for inclusion, a functional account of inclusion needs to be taken rather than just inclusion in form. Placing a person in an “inclusive” setting may serve no purpose if there are no visible and measurable gains in the social and educational goals sought.

Overview of Challenges to Inclusion One of the problems, with the population of children with autism, is that the lack of pre-requisite skills militates against their inclusion in many contexts and oftentimes it may be against the interest of the person to be “placed” in a context. A simple example is that it may be difficult for a parent to take the child to the local park if the child cannot wait for his or her turn for the swing or could push other younger children down. Similarly, a student who cannot sit in one place for more than a few minutes or does not pay attention to adult instructions or instructional stimuli such as the classroom board is not likely to benefit from classroom instruction. Sharma et al. (2009) list three essentials for

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implementation of reforms in inclusion as policy support, well-trained, educators and provision of ongoing support in the form of specially trained educational consultants and resources. At an individual child level, successful inclusion will require three processes to go hand in hand. First, all efforts must be made to improve the pre-requisite skills in the person with autism, foremost among these would be a reduction in inappropriate behaviors. A child engaging in vocal stereotypy such as making a humming noise intermittently will be distracting in a classroom. Second, the selection of contexts and environments must be carefully made to maximize the possibility of success. Finally, the people in the environment will need sensitization and training to make adaptations to better include the person with autism. The following case studies will explore how different pivotal behaviors can be targeted for a positive step toward inclusion.

Short-Term Case Study 1—Social Inclusion—Bheem Wants Everything “NOW” Research question: Can impulse control be taught to children with autism? Does impulse control help with social inclusion?

Method Participant: Bheem (name and region changed), a 7-year-old boy, had a diagnosis of autism and lived in one of the larger cities in Northern India. He could not speak, but could correctly identify most everyday objects, communicate his needs with 6 signs, write a few familiar words when dictated, and carry out simple instructions. A functional assessment revealed that impulsivity posed a serious problem. Experimental design: A SSED with a baseline and intervention condition was used to train him to wait appropriately with highly preferred edibles and play items in view until permission was given to access them. Procedure: A therapist would start a trial by keeping a preferred item such as a toy or a piece of cookie on the table, say “wait,” and allow access to the item after 3 seconds. A countdown timer was used. If he

25  Inclusion in Home, Social, and Educational Settings …     503

tried to reach for it before permission was granted, the therapist ­gently placed her hands between him and the item, preventing access and ended the trial. As he learned to wait for the targeted duration without reaching or grabbing, the therapist stopped placing her hands between him and the item and merely gave the instruction “wait.” The waiting duration criterion for access to tangibles was gradually increased to 5, 10, 20 seconds and finally to full 3 minutes. If Bheem waited for the entire targeted duration of the trial, his duration of appropriate waiting was recorded as equal to the target duration. On the other hand, if in any trial, he reached for the item before the targeted duration, the duration up to the time of such reaching from the beginning of the trial was recorded as the duration of waiting. For each day, the average of the waiting time over 5 trials was calculated and plotted on a graph. Subsequently, in an interview, parents feedback was sought on the value of the intervention and its effect on his behavior in social settings. Result: Around the 90th day he could wait for 3 minutes for most of his preferred items. The progress from no waiting to waiting for 3 minutes is presented in Fig. 25.1. Intervention repeated with cake: At the end of this intervention which was successful with many snacks and toys, Bheem’s parents requested that the same treatment be replicated with cake. They explained that when he goes to attend other children’s birthday parties he starts crying and flopping on the ground as soon as cake is laid out on the table instead of waiting for his turn. The same intervention was run, this time specifically with pieces of cake (Fig. 25.2).

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Result: In 17 days, Bheem was able to wait appropriately for 3 full minutes with a piece of cake in sight before permission was given for him to eat it. Training to request appropriately: Bheem also underwent communication training using signs (Sundberg and Partington 1998) to request and acquired the ability to ask for 15 preferred items or activities in a 3-month period. Findings from meeting with parents post-intervention: Parents reported that they were able to take him to several outdoor settings as he stopped throwing tantrums when his favorite snack could not be given immediately. He also started using signs to indicate what he wanted rather than cry or tug at adult’s hands.

Short-Term Case Study 2—Social Inclusion— Tiara Trained to Eat with Peers Research question: Can an opportunity for inclusion in a specific setting be achieved in stages based on rewarding progress in successive stages?

Method Participant: Tiara was a 4-year-old girl. She was adamant and could cry in a loud pitch for nearly 30 minutes in protest when asked to

25  Inclusion in Home, Social, and Educational Settings …     505

transition or when denied any favorite activity. She would not eat a morsel of food over a 5-hour period when she was brought for intensive behavioral intervention. Procedure: Her training to eat a full meal along with peers went through several phases. In phase 1, food was paired with her favorite activities and she was given small pieces of roti (Indian bread) to eat when she was listening to music, was on the swing or when engaged in other preferred activities. Once she started eating a few bits at some place, which could be anywhere in the clinic, eating in a table– chair format was targeted. She would initially refuse to sit and eat in a table–chair format, although, her crying during eating had stopped. In phase 2, a reward system based on Premack principle (Mitchell and Stoffelmayr 1973) was used to train her to eat sitting in a chair with food on the table. According to Premack principle, a low preference task can be strengthened by having a high preference activity following the low preference task. Her training started with eating 2 pieces of roti (low preference task) sitting on the chair, followed by access to swing or merry-go-round for 20 seconds after which she would be led back to the table to continue eating. Her duration of crying during lunch and pieces of roti (of total 16 pieces) consumed during 45-minute lunch break were noted during different phases of the intervention. In subsequent phases, Tiara was trained to eat with one peer seated across the table and finally at the community lunch table with more than a dozen peers. Results: The actual improvements in eating and reduction in crying across different phases in the center setting are presented in Fig. 25.3. Results from parent interviews: Tiara’s learning to eat lunch with others supported her inclusion efforts at school as she was able to eat appropriately with peers during lunch while ensuring she did not appear awkward. The success of the intervention also resulted in the family being able to take Tiara to eat out at restaurants and visit relatives and friends for meals. She could also participate in social occasions during parties and events where groups had sit-down meals thus enabling her inclusion.

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Research Questions Pertaining to 3 Longitudinal Case Studies In the three longitudinal case studies that follow the attempt is to generate hypotheses based on the following research questions: 1. What are some of the challenges parents face in their attempts to ensure inclusion of their child with learning disabilities in educational and social settings? 2. What are the facilitators or enablers? 3. What is the role of behavioral interventions in facilitating inclusion? What are some of the barriers to inclusion? 4. How can relatives and friends play the role of enablers?

Participants in 3 Longitudinal Case Studies Parents of 3 children Jhulon, Jassi, and Kay participated in the study. All the three children had ASD diagnosis. Dr. Kom, mother of Jhulon was a gynecologist by profession. Jassi’s mother was a homemaker. Kay’s mother was a software professional and father was working in the center where Kay was undergoing behavioral interventions.

25  Inclusion in Home, Social, and Educational Settings …     507

Procedures Used in Longitudinal Case Studies For all the studies, depth interviews over 2–3 sittings of 1 hour each were conducted individually with parents of the children with autism by the first author. He used a semi-structured questionnaire. The questions covered demographic information about their children and parents were encouraged to talk about their child’s early childhood, social inclusion issues, barriers, facilitators, and then about inclusion in school and social settings. The interviewer did not interrupt except to ask for occasional clarifications and to request them to elaborate on certain points with actual instances. As the parents were not comfortable with the interview being recorded the interviewer took detailed notes. The notes were used to construct the narrative. The narratives were then shared with the respective interviewees and changes were made to specific parts based on their additional feedback. The author also reviewed clinical records to get data on some of the skills acquired in their early intensive behavioral intervention program to examine the bearing they may have had on his educational and social inclusion.

Longitudinal Case Study—1—Jhulon Participant: Dr. Kom is a gynecologist by profession and Jhulon’s mother. She worked intensively on his language and communication program in her home setting under the guidance of the second author in his early years. Dr. Kom’s Narration—The early years: Jhulon was diagnosed with ASD at the age of 18 months. Dr. Kom started working on early behavioral intervention at home under guidance from the second author. He also received behavioral intervention services in the second author’s clinic for three years. Once the diagnosis of autism was confirmed by age 2, they made several changes to home routines including a delay in planning for a second child. She, along with a home therapist worked on communication training, teaching Jhulon to request for what he wanted. She also focused on cooperation and language targets under the direct guidance of the second author. She worked on teaching him

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to request items, objects, or activities of interest using manual sign language, with her saying the name of the item or activity. Over time, he started saying the words himself and thus his first instances of speech emerged. Soon he learned to speak in phrases and short sentences of 5–6 words. She also used joint attention to teach him objects, actions, and rhymes. In every area Dr. Kom targeted, Jhulon progressed. She modified targets and continued intensive training with 21–30 hours of intervention each week. For instance, while working on receptive identification of body parts, she would present the name of a body part such as “Head,” guide his hand to touch his head until he learned to touch his head independently when instructed. In a similar manner, he was taught to receptively identify other body parts such as elbow, shoulders, tummy, nose, toes, and knees. Teaching imitation involved training him to perform the same action an adult did. Teaching labeling involved teaching him to accurately name objects in his environment and in messy arrays when an adult pointed to a specific item and asked: “what is this?”. He was also taught to respond to simple instructions which involved performing one action when asked to do so. Examples include “Clap your hands.” “nod head,” and “bend.” He was taught to point at the correct item in an array when an adult named one. For example, when the adult said spoon, he would touch or point at the spoon in an array that had other objects as well. His time taken for acquisition of an illustrative set of skills described above is presented in Fig. 25.4. 5HFHSWLYH%RG\3DUWV

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25  Inclusion in Home, Social, and Educational Settings …     509

Dr. Kom continues—Jhulon’s inclusion in educational settings: At the age of 3, Jhulon’s parents looked for a pre-kindergarten placement and much to their dismay 8 out of 10 schools declined admission. The 20% that were open to the idea frankly admitted that they were not aware of autism or its associated challenges. When he did get admission, parents found that they were not allowed to observe him in the classroom. They received inadequate feedback on his performance. A teacher in a typical classroom had to address nearly 30–40 typically developing children and possibly one child with autism or learning disability like Jhulon. Some children can fidget, wander off their seats, talk to peers, or otherwise distract the teacher even as the teacher was working hard to cover the day’s lesson plan within 40 minutes. In such a situation, it is not often that the teacher would be able to pay attention to the child with a learning disability. An experienced and skilled teacher could manage the student behaviors well, but, an inexperienced teacher could struggle. Jhulon had difficulty with staying seated for durations beyond 20–30 minutes and could not write words intelligibly. Over time, Dr. Kom realized that the teachers who had good class control were better able to attend to her son. They would listen to and act upon suggestions such as giving him extra breaks or accepting spoken answers. However, if a teacher was new or was struggling with the rest of the class, making an extra effort for Jhulon was out of question. Jhulon attended school without extra support until Grade 2. Thereafter, a paraprofessional was needed to support him. The para professional’s role was to prompt him to attend to instructional material and to the teacher. With additional coaching at home, he is currently in the 50th percentile in terms of academic performance in his class in grade 5. Dr. Kom on Jhulon’s social inclusion in the school setting: Jhulon’s social interaction improved as he acquired language and communication skills. However, he would connect only with those who took interest in him. He connected very well with a teacher who listened to his stories around doodles. His ability to communicate his feeling, his strong likes, and dislikes helped him make friends. For example, once, Jhulon said that he did not like to visit a crowded restroom. From then on, during

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breaks, his peers would check and let him know when the restroom was less crowded. With support from peers, Jhulon joined group and recreational activities which were part of his curriculum. Jhulon’s social inclusion in community settings: Initially, Dr. Kom would go to the park late in the evening when it was less crowded, and she completely avoided going to birthday parties. In early years, he had no speech and so he could not communicate his anxiety or misgivings. With the manual sign training paired with words spoken by adults described earlier, as he started acquiring speech, he learned to explain what bothered him. It then became possible to negotiate with him by making special accommodations. Parents could request the hosts, if it was a small party, to avoid bursting balloons. If he did not like the ambient noise he could have a seat at the corner and look out through the window. His extended family played an important role in his social inclusion. Four of his cousins who were 2–3 years older would engage in activities of his choice. They would encourage him to sing funny rhymes in his native language, do the kind of pretend play he liked such as performing a surgical operation or applaud him as he spouted movie dialogues. With a college-going cousin, he cracked jokes and got one of his aunts to sing folk songs for him. With the efforts of many relatives, Jhulon was included in social interactions in a limited but safe environment. Jhulon’s experiences illustrate how teaching to speak and communicate one’s needs and 1:1 language instruction can make a difference to the inclusion experience of a child. Advocacy among the extended family and friends was necessary to get their support to provide a socially inclusive environment for the child.

Longitudinal Case Study 2— Jassi Method: A depth interview was conducted with Jassi’s mother. The procedure was identical to the one followed in the Jhulon case study. This was followed by an interview with Jassi’s case manager at the center where he was undergoing behavioral interventions. Findings from Jassi’s Mother’s interview: Jaswinder Singh (Jassi) was born in a small city a month ahead of schedule and had a low

25  Inclusion in Home, Social, and Educational Settings …     511

birthweight. Jassi’s developmental milestones were on time except for speech. His experiences are narrated by his mother. Around age 2, he could only say one word “Ma” (meaning mother). When he was around 2.9 years he started school. They seemed to think something was amiss and asked his parents to meet a psychiatrist. The psychiatrist thought everything was all right with the child and did not feel anything was amiss. Around this time his younger sister was born and thereafter his speech started appearing slowly. When he was 4 years old, the family shifted to the Middle East where he joined another school. By the time he was 6 years old, when he had completed 2 years in Kindergarten, his school principal said that they would not be able to place him in grade 1. He recommended that Jassi be sent to a school catering to special needs children as he might be on the autism spectrum. Jassi’s parents had never heard the term “autism” and while coping with this new information, they decided that Jassi’s mother should move to India with both children to seek better services for their special child while his father would continue his job in the Middle East. A neurologist in India confirmed Jassi’s diagnosis on the autism spectrum. Jassi was enrolled in a center, Behavior Momentum India, run by the second author for 25 hours/week where therapists worked intensively on pre-requisite skills, sitting span, and language skills. Jassi soon improved enough to get enrolled in a mainstream classroom and his 1:1 therapy was reduced to 10 hours/week. After three years, his mother reported that placement in a mainstream school did not really seem to help Jassi. While his educators at school were extremely sympathetic they also avoided placing any demands on him, asking questions or interacting with him. He could sleep in the class on several occasions as he had autism. He was often left alone when other children were taking tests. Some necessary special accommodations were, however, made for him such as an adult reading out math problems or accepting oral answers from him. Parent’s repeated requests for a shadow teacher or paraprofessional were rejected by the school, as such support was provided only to children with learning disabilities who could be disruptive. The fees and expenses for a child with special needs can be high. Living independently in a new city without a social network, financial worries, and an uncertain future have caused high levels of stress for mother.

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In terms of social inclusion, mom found it difficult to find opportunities for Jassi to socialize, as, their neighbor’s children would not interact with him, have been observed to tease him. As his skill levels were low, they would not include him in their games. As the family came from a conservative background, many relatives did not know autism and tended to label the child “mental” (a pejorative term for mad persons). Jassi’s mother avoided attending events within the family or with friends as it would have meant facing difficult social situations. She restricted her socialization to a very limited circle of 5–6 friends who understood Jassi, related to him, treated him with dignity, and could be trusted to be non-judgmental. Jassi’s mother is of the view that the government and society need to make necessary arrangements for autistic children’s inclusion given the high prevalence. This could be through quotas for children with special needs in schools, special subsidies for transport, and training of teachers to help children with autism better. Jassi’s case manager at behavioral intervention center added with his narrative. When they started out, Jassi was a very shy boy who walked with his head down and smiled shyly whenever anyone asked him a question. Their assessments showed that he had acquired some skills over the years but most of them would only meet the criteria set for one-year-old though he was 7. At the center they began to teach language, cooperation, and early numeracy skills with 1:1 behavioral interventions based on positive reinforcement procedures (rewarding successes), prompts and prompt fading techniques. His progress was monitored using mastery of learning units, which were essentially measurable student behaviors in response to an adult instruction. For instance, saying “cup” when shown a picture of a cup and asked, “what is this?” would be one learning unit. Saying “cup has a rim, a base, and a handle” when asked, “tell me parts of a cup” would be another learning unit. Saying his date of birth when asked, counting the number of objects presented, and writing alphabets on instruction are other examples of learning units. His acquisition pace was quite rapid, and he went on to acquire nearly 700 learning units in a one-year time frame (see Fig. 25.5) with 25 hours per week of behavioral interventions. This improved his skills to the level of a 3-year-old within a year but much needed to be done.

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Jassi then moved to a mainstream school nearby in grade 1 but continued to undergo 1:1 behavioral interventions at the center at a reduced 10 hours per week. When he was in Grade 2 the behavioral language, communication, and social skills assessments revealed that there were many language and pre-academic skills in which he lacked fluency and confidence. For instance, he could write numbers in sequence but at a much slower pace and with many errors compared to his peers (29 correct per minute with 6 errors compared to his peer group who could do 60 per minute correct with no errors). Though he could read alphabets he did not know phonics, a pre-requisite to reading. Over a one-year period, 28 different fluency building targets were introduced. These required him to complete literacy and numeracy tasks at speeds comparable to typically developing peers with minimal errors. These were guided by the principles and use of semilogarithmic charting conventions of Precision Teaching (Binder 1988). He was rewarded for improved speed and accuracy in each of these tasks. These were tasks such as labeling actions, perspective taking, more-less-equal identification, number identification up to 100, discriminating between consonants and vowels, saying the phonic sounds associated with consonants, identifying words given component sounds, and single-digit addition. As he started performing these tasks at fluent rates set for each task, his performance on more complex tasks also improved. The acceleration of correct responses per minute and a concomitant reduction in errors for three illustrative targets are shown in Fig. 25.6.

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Fig. 25.6  Illustrative examples of improvement in speed and accuracy in component academic skills—labeling instructor actions, writing 1–20, labeling phonic sounds

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A grade 1 level assessment, using an assessment tool called GLAD (Grade Level Assessment Tool; Narayan 1997) was then conducted. The tool is useful in assessing the level of academic performance of primary school children in English, Hindi, and Mathematics (Malhotra et al. 2009). It helps identify children with learning problems that lead to underachievement in schools. The tool has been tested with 1197 children from 5 schools across 2 states and the distribution of scores was found to be normal and acceptable (Narayan 1997). Jassi could score 122/165 (69.7%) in English and 156/180 (87%) in Math grade 1. Hindi was not tested as it was not a subject of study for him. Since then additional and more advanced targets in handwriting, reading, and math were worked on using precision teaching procedures to close the gap between his actual skill levels and the grade level material he faced in school. Jassi’s success with grade level material underscores the importance of building fluency in component skills to the level of a good performer in the peer group. This applies to use of language concepts, following instructions, reading speeds, writing speeds, and speed in carrying out mathematical operations. Jassi could have gained with some parallel and simultaneous targeting of conversational skills and game playing skills for better inclusion in relative’s networks and peer groups.

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Longitudinal Case Study 3—Kay Kay was a 12-year-old girl with autism when she was enrolled in one of the behavior intervention clinics of the second author in western India (name and region changed). She is now a 19-year-old. This case study is narrated by both parents. Like most other parents they did not know what the word “autism” meant when their pediatrician first pronounced it while referring them to a neurologist. When she was 3 years old, problems had already started manifesting. The child would be oblivious to people around her, would not make eye contact and would be breaking into a run most of the time even indoors. She had no speech or other modes of communication at that time and had no friends to play with. It was very difficult to even understand if she was forming a bond with family though her parents, grandparents, and a few cousins would shower love and be protective. She was incontinent which made it difficult to plan outdoor trips or visits to friend’s places and parties. When she was 4 years old the family migrated to a European country because of a job-related transfer. While her father stayed at home for about 2 years to organize schooling and therapy for her, they were also supported by grandparents who would fly in from India and stay for the permissible 6-month period to provide additional care for the child. In the new country, there was much more awareness about autism and special arrangements were available in most public places such as parks and tourist attractions. She was non-vocal and had profound difficulties. So, going to a “normal” school was out of question. She started in a nursery and later went to a special school in the neighborhood. It was a very respected special school with great facilities such as a children’s gym, indoor hydrotherapy pool etc. The teachers and staff were kind to the children and safety and security of the child was accorded a very high priority in everything they did. However, the child did not learn to request anything she wanted using pictures or signs. Nor could she identify objects in her environment when given an instruction or in any way label them. Her parents then engaged a parent consultant experienced in behavioral interventions to help provide educational goals and design teaching procedures

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for her. They hired students from a nearby university to visit home and provide 1:1 therapy for 2 hours daily under the guidance of the consultant. Over a seven-year period, the child learnt to request a few things such as her favorite foods, snack, swing, and going out to garden using pictures and some signs. She also learnt to label some everyday objects using signs. One major improvement was that she seemed to become a lot calmer. In her diet, milk and wheat-based products were completely removed during this period because of which her potty accident episodes seemed to come under control. Her urinary incontinence continued sporadically and toilet training was not entirely successful. As it was a new country, there were very limited social networks for parents and occasionally some visitors would drop in for brief periods. The child could not be included in these interactions. She seemed to enjoy accessing certain facilities when they were not crowded such as visits to the local park, travel, long car rides with family, boating trips, and restaurant visits. Taking her out required high levels of alertness from accompanying adult. Only her father would take her out as she could engage in dangerous behaviors such as running away, opening the door of a moving car, and grabbing an ice cream or other such edibles from strangers. Her father would have to physically intervene to stop. When in distress, she could hit, scratch, or injure other people nearby and so taking her out by public transport was stressful. When Kay was 12, the family returned to India. She was enrolled in a Behavior Momentum India center providing 1:1 behavior therapy for 5 hours a day and she started making gains in several skill areas. Comprehensive language and behavioral assessments across 18 domains such as cooperation, joint attention, receptive language, requesting, labeling, echoing back, answering questions, and visual performance were carried out. This helped identify goals and plan customized interventions with much clarity. The first breakthrough came in 6 months’ time when she started speaking using partial speech sounds. Her speech emerged as word approximations such as “osa” for dosa (an Indian breakfast snack), “pafa” for perfume, and “wateh” for water. She went on to learn to use speech sounds to communicate 20 such needs. The rate

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of acquisition of requests using signs initially and speech sounds (that were word approximations) is presented in Fig. 25.7. Kay’s experiences exemplify the point that inclusion means different things to different persons affected and one benchmark may not fit all. Even a person who could not speak at all until her teens could benefit from training in a range of skills in a 1:1 setting. Her inclusion experience, though at a rudimentary level compared to others is still enormously significant for her, her parents, well-wishers, and the society. Acquisition of rudimentary speech to communicate her needs clearly represented a leap in improved inclusion at home, in her 1:1 educational setting, and in social settings such as visits to relatives’ places. She also started labeling most everyday objects using sign language and speech sounds. She received home tutoring for 15 hours a week with guidance from both the authors. As the years rolled by, she started to learn functional living skills and leisure skills such as playing games on iPad, cutting and slicing vegetables, folding her clothes, making her bed, arranging things around her home, and walking a kilometer (she would not walk more than 5–6 minutes earlier). The higher intensity of 1:1 intervention helped in many other ways. Kay started bonding with her mother. When she was 15 years old, she started looking visibly happy and calm when her mother was at home in the living room. She would ask for hugs and cuddles using a combination of signs and sounds. She would often seek out and insist that mom sit next to her. Thereafter this extended to relatives and friends who visited often. She is now taken to selected people’s home where she is being taught to sit appropriately in the living room, enjoy a snack or drink offered by hosts, and share her favorite sweets with children in their homes. She is now 19 years old and many challenges still exist. While she may never go to a regular school or university and access mainstream education, her parents are keen to see improvements in appropriate behaviors in outdoor settings, an improvement in stamina, ability to perform tasks for longer durations that can help in developing occupational skills, and interest in a few games or activities that can help in developing relationships.

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Conclusions It is important to realistically assess the level of inclusion achieved without being carried away by the mere appearance of inclusion. If a child is “left alone” at home or remains ignored in the classroom then exclusion is already maintained. This chapter examined the inclusion of younger children with autism in home, educational, and social contexts. The first recommendation is the need to prioritize cooperation, joint attention, reduction of inappropriate behaviors, and making requests. Systematic assessments of skill deficits and functional assessment of inappropriate behaviors need to be carried out to address and facilitate improved inclusion in multiple contexts. Additionally, improvements in cooperation, joint attention, and requesting skills have a force multiplier effect which accelerates learning in other skill domains. Second, as seen from the case studies of Jassi and Jhulon, children with autism in general education classrooms in India, even those labeled high functioning, may not be able to assimilate academic concepts at the pace at which a typical classroom teacher delivers them. School teachers, aides, and facilitators of special needs children require specialized training for improved integration. Such training could make schools more receptive to accepting students on the spectrum. Parent training on skills necessary for school inclusion may further enhance inclusion efforts. Third, in addition to efforts in the classroom setting, additional training outside the classroom, in a 1:1 format using procedures such as precision teaching (Binder 1988) could help address deficits in component skills that help the child catch up with grade level material being taught in the classroom. Fourth, as is seen from Jhulon’s and Jassie’s case studies, education and advocacy for extended family and friends about autism are imperative for making the Indian society an inclusive society. The mental health of a family facing psychological pressures, guilt, and a range of counterproductive emotions is impacted adversely if the society is not supportive.

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Fifth, accepting disability with dignity and providing support to impacted families is the sign of a civilized society, where, media and government can both play a larger role. The media can run campaigns for differently abled, especially people with autism, cite success stories and build sensitivity and awareness. Recently, the Times of India, on April 11, 2017 carried an article (Sengupta 2017) that highlighted, how insensitive airline staff were toward a boy with autism. One of them asked the mother why she was traveling with someone who is unfit to travel. A simple accommodation such as allowing priority in the queue for security check could have solved the problem. If media generates awareness and as a result, if malls, airports, railway stations, movie halls, restaurants, and other such public places adopt autism-friendly policies and procedures it could help the inclusion cause greatly. The government should take steps toward skill development through the Ministry of Skill Development and Entrepreneurship. Insurance agencies could be encouraged to support evidence-based intensive interventions at a young age and develop awareness and acceptance campaigns to support inclusion. A lot of clutter and confusion exist around myriad fads and pseudoscientific practices that are touted as effective in “curing” autism or addressing the core features of autism. Media, government and not for profits need to focus on disseminating information about interventions that have a strong scientific evidence base of being successful in teaching cooperation, communication, language, social, and academic skills. It is also important to enlist engagement from the larger society and corporates to sponsor education for children with autism from low and middle-income families given the high costs of 1 teacher:1 student behavioral interventions.

Limitations of the Study This study has certain limitations. It does not address the entire range of possible options to improve effectiveness in inclusive practices. For instance, Harrower and Dunlap (2001) enumerate several evidence-based strategies such as peer-mediated interventions, selfmanagement strategies, and antecedent management strategies such

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as priming and prompt delivery. The study provides Single-Subject Experimental data to support for some of the inferences drawn in each case study. Future studies could explore a formal structured inclusion assessment followed by experimental procedures which can study these strategies in Indian classroom context. The recommendations made for media and public policy touch upon the surface of the problem. With so much to be done, the role of media, Charities, and government in facilitating interventions for a more inclusive society can be a subject of many separate studies.

References Binder, C. (1988). Precision Teaching: Measuring and Attaining Exemplary Academic Achievement. Youth Policy, 10(7), 12–15. CDC Increases Estimate of Autism’s Prevalence by 15 Percent, to 1 in 59 Children | Autism Speaks. (2018). Retrieved from https://www. autismspeaks.org/science-news/cdc-increases-estimate-autismsprevalence-15-percent-1-59-children. Census of India: Age Structure and Marital Status. (2018). Censusindia.gov. in. Retrieved November 15, 2018, from http://censusindia.gov.in/Census_ And_You/age_structure_and_marital_status.aspx. Deshpande, S., Chakraborty, S., Thomas, P., Bhatia, T., & Nimgaonkar, V. (2015). Assessment of Severity of Autism Using the Indian Scale for Assessment of Autism. Indian Journal of Psychological Medicine, 37(2), 169. https://doi.org/10.4103/0253-7176.155616. Gay, L. R., Mills, G., & Airasian, P. W. (2009). Educational Research: Competencies for Analysis and Interpretation (pp. 444–445). Upper Saddle Back, NJ: Merrill Prentice-Hall. Gururaj, G., Varghese, M., Benegal, V., Rao, G. N., Pathak, K., Singh, L. K., & Misra, R. (2016). National Mental Health Survey of India, 2015– 16: Summary. Bengaluru: National Institute of Mental Health and Neurosciences. Harrower, J. K., & Dunlap, G. (2001). Including Children with Autism in General Education Classrooms: A Review of Effective Strategies. Behavior Modification, 25(5), 762–784.

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Jaisoorya, T. S., Preethi, J., Shobana, S., Sunil Kumar, G., Manoj, L., Gokul, G. R., … Thennarasu, K. (2018). Toddlers at Risk for Autism Spectrum Disorders From Kerala, India – A Community-based Screening. Asian Journal of Psychiatry, 31, 10–12. https://doi.org/10.1016/j.ajp.2017.12.016. Kumar, A. (2011). Mental Health Services in Rural India: Challenges and Prospects. Health, 3(12), 757–761. https://doi.org/10.4236/ health.2011.312126. Little, C. (2017). Social Inclusion and Autism Spectrum Disorder. In Supporting Social Inclusion for Students with Autism Spectrum Disorders: Insights from Research and Practice (p. 9). Oxfordshire, England: Taylor & Francis. Malhotra, S., Rajender, G., Sharma, V., & Singh, T. B. (2009). Efficacy of Cognitive Retraining Techniques in Children with Learning Disability. Delhi Psychiatry Journal, 13(2), 334–338. Mitchell, W. S., & Stoffelmayr, B. E. (1973). Application of the Premack Principle to the Behavioral Control of Extremely Inactive Schizrophrenics. Journal of Applied Behavior Analysis, 6(3), 419–423. https://doi. org/10.1901/jaba.1973.6-419. Narayan, J. (1997). Grade Level Assessment Device for Children with Learning Problems in Schools. Retrieved from http://niepid.nic.in/Grade%20 Level%20Assessment%20Device%20For%20Children.pdf. Poovathinal, S. A., Anitha, A., Thomas, R., Kaniamattam, M., Melempatt, N., Anilkumar, A., & Meena, M. (2016). Prevalence of Autism Spectrum Disorders in a Semiurban Community in South India. Annals of Epidemiology, 26(9), 663–665.e8. https://doi.org/10.1016/j.annepidem.2016.07.003. Raina, S., Kashyap, V., Bhardwaj, A., Kumar, D., & Chander, V. (2015). Prevalence of Autism Spectrum Disorders Among Children (1–10 Years of Age)—Findings of a Mid-Term Report from Northwest India. Journal of Postgraduate Medicine, 61(4), 243–246. https://doi. org/10.4103/0022-3859.166512. Robins, D. L., Pandey, J., Chlebowski, C., Carr, K., Zaj, J. L., Arroyo, M., … Fein, D. A. (2010). M-CHAT Best7: A new scoring algorithm improves positive predictive power of the M-CHAT. Paper presented at the International Meeting for Autism Research (IMFAR), Philadelphia, USA. Rudra, A., Belmonte, M. K., Soni, P. K., Banerjee, S., Mukerji, S., & Chakrabarti, B. (2017). Prevalence of Autism Spectrum Disorder and Autistic Symptoms in a School-Based Cohort of Children in Kolkata, India. Autism Research, 10(10), 1597–1605. https://doi.org/10.1002/aur.1812.

25  Inclusion in Home, Social, and Educational Settings …     523

Sharma, U., Moore, D., & Sonawane, S. (2009). Attitudes and Concerns of Pre-service Teachers Regarding Inclusion of Students with Disabilities into Regular Schools in Pune, India. Asia-Pacific Journal of Teacher Education, 37(3), 319–331. Sengupta, J. (2017, April 11). Airline & Security Staff Insensitive to Autistic Boy: Mom. The Times of India. Retrieved from https://timesofindia.indiatimes.com/city/pune/airline-security-staff-insensitive-to-autistic-boy-mom/ articleshow/58117289.cms. Sidman, M. (1960). Tactics of Scientific Research. New York: Basic Books. Singh, O. P. (2018). Closing Treatment Gap of Mental Disorders in India: Opportunity in New Competency-based Medical Council of India Curriculum. Indian Journal of Psychiatry, 60(4), 375. Sundberg, M. L., & Partington, J. W. (1998). Teaching Language to Children with Autism or Other Developmental Disabilities. Danville, CA: Behavior Analysts Inc. Tellis, W. (1997, July). Introduction to Case Study. The Qualitative Report, 3(2). Retrieved from http://www.nova.edu/ssss/QR/QR3-2/tellis1.html. Vanneman, R., & Dubey, A. (2013). Horizontal and Vertical Inequalities in India. In J. Gornick & J. Markus (Eds.), Income Inequality: Economic Disparities and the Middle Class in Affluent Countries (p. 445). Stanford, CA: Stanford University Press.

26 Barriers and Enablers to Inclusion of University Students with Disabilities in India and Australia Poulomee Datta, Santoshi Halder, Joy Talukdar and Tania Aspland

Introduction Over the past two decades, until recently, a plethora of research studies have been conducted to investigate the barriers experienced by students with disabilities at primary and secondary school levels. Hadley (2006) reported that there has been an increase in the number of students with disabilities entering the higher education contexts. The experience of such students within higher education contexts has received very little attention. Crosling et al. (2009) identified that the retention of students in higher education contexts is a major area of concern. Research by Shevlin et al. (2004) recognized that physical access and assistive provision were serious impediments to the full participation of students

P. Datta (*) · J. Talukdar · T. Aspland  Australian Catholic University, Sydney, Australia e-mail: [email protected] S. Halder  Department of Education, University of Calcutta, Kolkata, India © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_26

525

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with disabilities in Irish higher education environments. Similarly, Fuller, Healey‚ et al. (2004) pointed to issues of parity and staff development in making practical adjustments for students with disabilities in one university in the UK. Some sporadic research has highlighted on the barriers and challenges particularly experienced by deaf and hard of hearing students in higher education contexts. Lang in 2002 pointed to a multitude of barriers that deaf students experienced in the classroom with hardly any possible resolutions to their difficulties. Powell et al. (2013) too identified that deaf and hard of hearing students in higher education institutions at New Zealand experienced many challenges and difficulties in accessing the support and services designed for them. Of significance, these students encountered major difficulties in participation in classes and becoming socially included into campus life and activities. Hyde et al. (2009) also recognized some challenges and difficulties related to accessing the higher education curriculum experienced by deaf and hard of hearing students enrolled at an Australian university. It is astonishing that these students were part of an extensive deaf student support program and yet had to endure some challenges and barriers related to their access and participation. Goode (2007) highlighted that the transition for students with disabilities from school to university was fraught with difficulties. Ryan and Struhs (2004) too claimed that attitudinal barriers exist that encumber the full participation of students with disabilities in nurse education programs. It is appalling that in nurse education programs where nurses are expected to be more sensitive toward people’s needs, such barriers and discrimination existed toward people with disabilities. Yet, another study by Fuller, Bradley, et al. (2004) identified issues to teaching and assessment impacting on access of students with disabilities in higher education settings. They concluded the need for further research to delve into the experiences of students with disabilities in higher education contexts. In an attempt to fulfil this gap, this study, explicitly aimed at including students’ voices, offers some insight into students’ experiences not only of the barriers and but also of the enablers to an inclusive learning environment within higher education contexts. The point of difference with the literature and the current study is the inclusion of enablers to access and participation of students with disabilities in university educational environments.

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Disability can pessimistically impact on every aspect of a student’s development, influencing academic performance, social relationships, self-concept (Halder and Datta 2012) and ultimately the ability to access the same educational outcomes as nondisabled peers (Shiu 2001). In spite of such explicit negative influences of disability, research conducted to identify the barriers and particularly, the enablers faced by university students with disabilities and their experiences is limited. The major aims of this project are to identify the barriers and enablers experienced by students with disabilities to access and participation in higher educational institutions in two different countries—India and Australia. To that end, the central research questions that emerge from the above aims are: What are the major barriers and enablers identified by students with disabilities to access and participation in University educational environments? What strategies can be effective to facilitate the access and participation of students with disabilities in University educational environments?

The Indian Context: Higher Education and Students with Disabilities Inclusive education, in the true sense addresses the learning needs of all with or without disabilities including those who are marginalized and excluded from the mainstream to learn together through appropriate access and support services. The Persons with Disabilities Act 1995 indicates that persons with disabilities (PWDs) should have access to education at all levels. As per Census of India (2011), 6–7% of India’s population is differently abled and it is estimated that this number will increase due to poverty, malnutrition, emergence of new diseases, drug-abuse, roadaccidents, armed-conflict, violence, poor health care and service, and other factors leading to disability (World Bank Report 2007). Though it is only after the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) been signed (2007) and ratified (2009) by India that the concept of reasonable accommodation and

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accessibility started getting discussed and demanded by students with disabilities in the Indian context. The results from various research and literature reviews reveal the frequency and the intensity of challenges of students with disability in education in India. In spite of the 3% reservation enacted by the PWD Act (1995), the National Centre for Promotion of Employment of PWDs (NCPEDP 2004) shows that only, a negligible figure (0.1% at the university level and 0.51% at the primary and secondary level) of students with disabilities are in mainstream educational institutions. Despite changes in legislation and the development of programs for students with disabilities in many Western countries, in recognition of the importance of higher education for individuals, families, and society at large there are ample research findings of conflicting cases of achievements/performance, high rates of failure, dropouts, gap in social inclusion and longer study period than the students without disabilities (Bonela 2014; Foreman et al. 2001; Dutta et al. 2009; Mpofu and Wilson 2004). Most of these are perceived as the result of inadequate accessibility in higher education institutions, architectural barriers, lack of support services, adverse social attitudes and social isolation, lack of responsive behavior as well as low financial support (Foreman et al. 2001; Jung 2003; Johnson 2006; McKenzie and Schweitzer 2001; Mpofu and Wilson 2004). In spite of entitlement to various provisions many students with disabilities are unable to access those accommodations due to negative attitudes and ill-treatment by faculty and administrative staff (Barazandeh 2005; Jung 2003; Johnson 2006; Kraska 2003). It goes without saying that providing students with disabilities the opportunity to study in higher education institutions enhances their chances of employment participation thereby meeting the nation’s economic, political, social goals, equity needs and reduces social exclusion (OECD report on inclusive education at work). It is indeed surprising that to date India doesn’t have a comprehensive policy for differently abled people. Nevertheless, it is indeed an achievement that now the government, policymakers, and some of the higher educational institutions at least are recognizing the potentials of differently abled people and are

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expressing their willingness to take steps to provide equity and access to the PWD. Under the University Grants Commission (UGC) XI th Plan, grants are available for all higher Educational Institutions for improving physical accessibility to make the campuses disabled-friendly. Unfortunately, it is limited to very few institutions, particularly regulated by the government (University Grants Commission, Ministry of Human Resource and Development, etc.). Thus the fact remains that on an average there is rarely any massive visibility of differently abled students in higher education. While there are various international policies and frameworks for the education of children with disabilities there is a gap which persists in application and practice. In-depth research through individual cases study analysis perhaps may be a reasonable step forward to explore the participation and inclusion of students with disabilities in higher education for understanding individual needs for following up with appropriate interventions and suitable accommodations.

The Australian Context: Higher Education and Students with Disabilities The Australian government policy “post-Bradley” prioritizes providing opportunities for all capable people from all backgrounds to participate to their full potential in higher education initiatives and be supported to do so. In this endeavor, it seeks to provide students with a stimulating and rewarding higher education experience. The “Go8 Equity Strategy” reflects that it should be broader than the Government’s participation target of 20% of undergraduate enrolments in higher education by 2020. The principal areas of focus encompass individuals from low socioeconomic and disadvantaged backgrounds and students with a disability or persistent medical condition. Alongside the Go8 Equity Strategy, the Disability Support Program (DSP) was established to provide support and access to students with disabilities in higher education environments. “The program assists in providing educational support and/or equipment to domestic students with disability with high cost needs” (Department of Education and Training, 2018, para. 12).

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Most universities in Australia have a specialized unit to manage and provide provision to students with disabilities. The DSP is the key Commonwealth Government funding mechanism that assists higher education providers to meet their legal obligations under two important instruments: the Disability Discrimination Act, 1992 (DDA) and the Disability Standards for Education, 2005 (Department of Education and Training, 2015). The introduction of the Disability Discrimination Act (1992) and Disability Standards for Education (2005) in Australia, has led to organizational and legislative changes that have improved access and participation for students with a disability in higher education (Fuller, Healey, et al. 2004). The Disability Discrimination Act requires that reasonable accommodation is made for students with disabilities to enable full access to learning opportunities. Under the Disability Standards for Education, higher education providers must make adjustments to ensure that students with disability have the same or similar choices and opportunities as students without disability. While there are policies and programs in place to support students with disabilities enrolled at the universities, the Parliament of Australia investigated that still many students continue to be disadvantaged (Parliament of Australia, 2004). There are significant costs related to a disability, for example, the cost of one-on-one care, transport and assistive technologies (Parliament of Australia, 2004). It is practically impossible for students with disabilities to meet these expenditures especially if they are unable to work part-time. With the introduction of the several policies and bodies to support students with disabilities in higher education contexts, there has been a growing awareness among education providers of the benefits of inclusive learning and teaching which has removed further barriers. Despite this progress, universities, faculties, and individual staff are often at ­different places on a continuum in terms of attitudes toward students with disabilities and skills in inclusive teaching and learning (Fuller, Healey, et al. 2004). Recent research substantiates that higher educational institutions are often finding it challenging to meet best practice in supporting students with disabilities (National Centre for Student Equity in Higher Education, 2017). While change at the legislative level

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is evident, further research is required from the individual student’s level or point of view.

Methodology The current study employed qualitative methodology because it is a good way to tap into participant’s thoughts and experiences. Sampling was purposive, aimed at illuminating the richness of individual experience (Vickers 2001). Semi-structured open-ended interviews were the method of data collection. Open-ended questions allowed participants to voice their experiences related to access and participation at the university unconstrained by any perspectives of the researchers or past research findings (Creswell 2008). Themes were identified and the interviews were analyzed under set themes. Interviews were audio-taped and lasted approximately 1½ hour and produced transcriptions worth of 500–2000 words. Informed consent was obtained from all participants at the start of the research and interviews were transcribed verbatim.

Participants Participants selected for this study were all first- to third-year university students in India and Australia. Each participant from India was given the alphabet R, followed by a number in the chronological order of their participation. Similarly, participants from Australia were provided the alphabet P, followed by a number in the order of their participation. Twelve students from India and four students from Australia participated in this research. The participants in the two different countries/ contexts were matched in terms of the following: Disability: Students who were diagnosed with visual, hearing and physical impairment were selected from both contexts. In reference to visual impairment, those that had low vision and were blind met the study inclusion criteria. Similarly, for hearing impairment, those students diagnosed with hard of hearing and deafness were included in

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the study. For physical impairment, the ones diagnosed with cerebral palsy were included. Age: Participants from both contexts were between the age ranges 19–23 years old. Gender: Participants from both countries represented a 50% male– female ratio.

Data Analysis Data was analyzed using NVivo 11. The data was thematically united (using the “Node” function in NVivo) and the researcher(s) adopted an iterative approach to ascertain relationships among the responses— similarities and differences in the form of excerpts and expressions. Common “themes” in the student experiences were identified. The extent to which the aims were achieved in the context of the “barriers,” “enablers,” and the “strategies” to access and participation of students with disabilities in higher education contexts were then assessed on the backdrop of existing literature in the field to ascertain similarities and dissimilarities.

Results The results have been reported separately under two broad heads: “The Indian Context” and “The Australian Context”. It also revealed the underlying perspectives elicited by the participants which led to developing the respective themes and naming them accordingly.

The Indian Context Access to University Disability Services When students were asked whether they had access to disability services at the university, the following themes emerged from student responses.

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Braille Support The findings revealed that six out of 12 students claimed that they did not have access to Braille printing or Braille textbooks. They preferred instructions and content to be provided in the Braille format. The following quotes demonstrate these sentiments conveyed by students: No Braille system in our college. I would prefer this. (R1) Library does not have a separate Braille section. Also there is absence of Braille books, Braille printers, talking computers, Braille text, etc. (R2) Our College do not have Braille system. (R4)

On the contrary, one of the students confirmed that the library in his university accommodated Braille printers and Braille books for the production of Braille literature. However, he too expressed concern on its accessibility and availability and conveyed that Braille books were very limited in numbers.

Human Support In relation to human support, six out of 12 students believed that they received adequate support from university teachers especially those with a background in special education, professional staff and other students in regards to their disability needs. The following quotes are evidence of this perspective: In my University all teachers, professors in special education, students support me very much. They support me for everything I need. (R3) All teachers specialising in special education, professors, friends support me. (R7) Due to my disability I always get full support from my department. In every activity my teachers, friends cooperate with me. (R9)

However, two students perceived that they did not receive any help from university lecturers and other non-teaching staff in relation to their specific needs. One of the two students argued that personal

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assistants should be provided to students with physical disabilities. The following quote substantiates this claim: No personal assistant is there to support the students who have walking difficulties, climbing stairs in case the lift is not working. This should be introduced. (R10)

Four of the students perceived the non-availability of a scribe in the classroom as a hindrance to learning. These perspectives are portrayed in the following quotes: There is no availability of a writer in our University. (R2) There is no writer in our University for the students who are visually impaired and this is a problem in my learning. (R6)

Physical Support In regard to students’ access to physical services at the university, six out of 12 students believed that they were provided with lift facilities, hostel amenities for students with disabilities, well-equipped classrooms with special tables and chairs for students with physical disabilities and ground floor classes for easy access for students with physical disabilities. These perspectives are outlined in the following quotes: Residential hostel facilities are available within our campus. (R2) In our university classes are held on the ground floor. (R8) Lift is available. (R1) Classrooms are well furnished with chairs, table, desks, blackboard and other necessary equipment. (R9)

Two out of the six students further highlighted the introduction of chauffeur driven cars for students with vision impairment within university campuses which helped them to travel independently and safely on campus. The following quotes capture this view:

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Within our University campus there is car for students with visual impairment which helps us to go anywhere we want to go say to the office of the university, principal’s room etc. within the campus. (R2) Toto car is available within our university campus. It takes us where we want go within the campus. We have phone numbers of drivers and we contact them when we want to go anywhere. (R6)

However, the remaining six students articulated their views on the non-accessibility of physical services at the university. They said that there were no ramps, elevators and/or lifts for students with disabilities, buildings were dilapidated, no provision of residential hostel facilities, classrooms were ill-equipped with insufficient lights and desks at an inappropriate height for students in a wheelchair, no free spaces in the movement path within classrooms, narrow aisles and crowded hallways. They further highlighted that classroom doors were too heavy to open for students with disabilities (automatic door buttons should be there for easy access), car parking space was not available for the disabled, wheelchair facilities, spare walking sticks and walking frames were not provided by the university. The following selective quotes are evidence of these assertions: Classrooms are not well equipped with sufficient lights. Artificial lights are used. (R5) Lift facilities are not available. (R7) Lack of ramps or elevators. (R11) Passageways were another concern for students. There was too little space between desks within classrooms, narrow aisles and crowded hallways. (R10) Even the doors were too heavy for students like us to open unaided. The doors did not have any automatic door buttons to have easy access. (R10)

Technological Support In regard to accessing technological services at the university, two out of 12 students perceived that these services were inadequately provided by the university. They claimed that there were no electrically adopted

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mobility devices for students with physical disability and no audiobooks provided for students with visual impairment. Two of the other students; however, claimed that the universities where they were enrolled at provided them with talking computers, screen reader, audio-machine, closed-circuit television, talking books and dictionaries and ipads primarily used for recording lectures: In our classroom there is a recording device called I-PAD where all lecturers, instruction that teachers used to deliver in our regular classroom are recorded. This helps us to take our notes, in understanding the topic more clearly as we can repeatedly hear it when we need it. (R2, R12) Things like talking computers, screen reader, audio-machine, closed circuit television, embossed relief maps and diagrams, three-dimensional models, spelling and grammar aids, talking books and dictionaries are all available in our library. (R12, R2)

University Disability Services and Its Impact on Students’ Physical Participation When students were asked about the impact of disability services on their physical participation at the university, seven of the students believed that they were able to attend university on a regular basis. Three of the students, on the other hand, articulated that they were not able to attend university regularly as they found it difficult to commute between their home and the university campus. The primary reason for their absence from the university was because they lived in distant and remote areas. This is demonstrated in the following quotes below: Though I try to participate in regular academic/class activities but due to long distance from home I could not attend college regularly. (R1) I could not able to take part in regular class activities as I live in remote areas where transport facilities are not so much available so it becomes difficult for me to visit college regularly. (R11)

One of the students stated that due to the absence of classroom accommodations to suit her disability-specific needs, she found it difficult

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to participate in the classroom. Yet, another student pointed out that the orientation of the classroom (positioning of the tables and chairs) restricted her ability to move independently in the class and for activities. She commented: But as the spaces between the desks and benches are too short sometimes I felt difficulty in answering teachers’ questions by standing and also in coming out of my place to move freely. (R10)

On a positive note, seven of the students believed that they were able to participate in various cultural programs and activities organized by the university. However, two of the students, expressed their concerns of nonparticipation in sporty activities and events due to their disability. The following quote demonstrates this viewpoint: But in extra-curricular activities I could not be able to participate for my impairment. (R3)

One of the students, further highlighted an area which needs improvement to increase the accessibility and participation of students with disabilities at the university. She commented that if certain university programs/events were organized at a different venue, site accessibility for students with disabilities was not taken into consideration. For example-lift facilities were not provided for students with physical disabilities and they had to rely on staircases. This is evident from the quote below: One thing I must mention here that during our M.Phil Convocation which was held in College Street Campus at Cenetarian Building at that time also they did not allow me to use the lift and I have to reach the 4th floor through climbing stairs. The place was so much crowded and I felt very much exhausted while climbing the stairs. So though I have an urge to participate in various activities I felt scared by thinking how many stairs I have to climb if the lift is not available or if the authorities don’t allow me to use it. (R10)

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University Disability Services and Its Impact on Students’ Peer Relationships When students were asked about the disability services and its impact on their relationship with peers, all twelve students unanimously agreed that their friends were extremely cooperative, helpful, and sensitive toward their disability-specific needs: My peers are very helpful and cooperative. (R1) My relationship with peers is intimate, good and cooperative. (R3)

Most of their peers at the university had a positive attitude and a good understanding of the type of difficulties that a student with disabilities can face. Three of the students articulated that their peers assist them in their orientation and mobility needs at the university: As I have walking difficulties, while moving from one classroom to another they used to carry my bags, books and other things. Sometimes they used to bring water for me from downstairs. Sometimes they helped in boarding a taxi while going home as it is difficult for me to travel on bus or trams. (R10) They helped me travelling from one place to another in the uni. (R12)

Another six students stated that their peers often helped them in their academic learning at the university: Sometimes my friends used to teach me, discuss with me various problems related to my subjects. This discussion facilitates me in grasping the matter more clearly. (R2) They help me a lot in my academic activities. (R11)

University Disability Services and Its Impact on Students’ Engagement with the Curriculum When students were asked whether the university disability services had any impact on their engagement with the curriculum, all twelve

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students argued that due to lack of adequate resources, services, and accommodations they could not fully engage with the curriculum. Some selective quotes from student participants that best describe the above are represented below: No writer is there. No separate Braille system. (R1) But I experience some difficulty when syllabus changes every year. We study in Braille process and therefore it takes a long time to make modification in our syllabus. Somehow it takes some time for students like us to adjust with the new one. Also there is no stylus, slate for writing, absence of Braille computers and printers, close circuit television which is very much essential for students like us to participate in the curriculum. (R2) Out of 5 working days (Monday- Friday) reader comes only 3 days. In this case also some of us suffer as we need the reader regularly. (R2) As there were no Jaws (Job access with speech) students like us could not able to participate. (R6)

Five out of these twelve students further claimed that university teachers/lecturers were not adequately trained to cater to the specific needs of students with disabilities: Teachers do not pay special attention and have no training. (R1) Teachers are not aware and not trained of our problems. (R5)

One of the students pointed out the perceived ignorance of university teachers and how that makes it difficult to get the help they need: Also teachers used to give us a lot of assignments which we have to complete in a very short time. I think some more time should be allotted for students like us who have visual problems to complete such work. My lecturers were not aware of this and this made it very difficult for me. (R12)

However, six students on a positive note perceived some benefits of the university disability services and believed that it helped them partially in some ways to engage with the curriculum.

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Strategies to Facilitate Access and Participation at the University When students were asked about what strategies could facilitate their access and participation at the university, all twelve students believed that the extent and magnitude of university disability services should be extended. Seven out of twelve students acclaimed that accommodations in the form of establishing a Braille section within the college library, arranging for a scribe especially during examinations and transport facilities should be provided for students with visual impairment: College Library must have a separate Braille section. College authorities should arrange a writer for blind candidates. College authorities must arrange for a transport system for children with visual impairment. (R1)

Six of the students emphasized the provision of technological accommodations in the form of stylus slate, talking books and calculators, Braille computers with printers, closed circuit television and screen reader and magnification software for students with visual impairment: There must be provision of Braille books, text, stylus slate, talking books, calculators, cassettes, CD for recording, Braille computers with printers, close circuit television, screen reader so that students like us can proceed at his or her own speed. (R2)

Another two students mentioned the importance of appointing an Orientation and Mobility Instructor on campus for students with disabilities (which includes visual and physical impairment): College should adopt O & M assistant (Orientation and Mobility Specialist) for visually impaired students. (R7)

To increase access for students with physical disabilities, two of the students believed that the university should modify its infrastructure in building ramps, broad walk-ways and lift facilities:

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University must provide needed entrance mobility and functioning for the orthopaedic impaired including wheel-chaired. As a result due adaptation in terms of building proper ramps, walk-ways and lifts should be provided. (R10)

Six of the students highlighted the lack of awareness and training among university lecturers to cater to students with disabilities and emphasized the provision of training opportunities for university lecturers. Ten of the students, however, recommended the introduction of specially trained teachers to be employed on different campuses to assist with the needs of students with disabilities and university lecturers supporting them in their classes: Special Trained Teachers should be appointed by the University authorities who could understand our problem and provide guidance accordingly. (R2) Special Teacher should be appointed in every department so that we can share our ideas, experiences with them. (R5)

Eight of the students claimed that to boost access and participation of students with disabilities, universities should introduce greater scholarship opportunities and reservation quotas for these students within the higher education system: Scholarship facilities should be available for students like us. (R7) According to my opinion reservation seats should be increased specially for Persons with Disabilities. (R5)

Last but not least, one of the students pointed out that the general attitudes of university authorities and teachers toward students with disabilities should be changed in a positive way. This student believed that to increase access and participation, students with disabilities should be consciously encouraged and motivated to find out areas or avenues where they can excel: Lastly attitudes towards these students should be changed according to my opinion. They should be made to feel that they are also a part of the

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society, have some talents and potentialities in them through which they can reach their goal like other normal people. Teachers and university authorities must be consciously and deliberately able to find out the areas and avenues so that students like us may excel. (R10)

The Australian Context When students were asked whether they had access to disability services at the university, all four students agreed that they were able to avail these services at times based on their specific needs.

University Disability Services and Its Impact on Students’ Physical Participation When students were asked about the impact of disability services on their physical participation at the university, three of the students believed that the disability services unit facilitated their ability to attend face-to-face lectures. This is mainly because the disability unit at the university was proactive in contacting lecturers with particular student’s needs and requirements during lectures (example requesting lecturers to wear microphone, provide enlarge print handouts in advance). The following quote substantiates this claim: The disability service has increased my attendance at lectures due to the ability to contact lecturers with particular needs and requirements during lectures such as wearing microphones, etc. (P3)

One of the students claimed that most new buildings within the university campus were designed for access and use by students with disabilities. This student further affirmed that lectures and tutorial classes were held in accessible classrooms for students with disabilities and class timetables developed properly and spaced appropriately enabling students with disabilities to move at their own pace from one class to another.

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University Disability Services and Its Impact on Students’ Peer Relationships When students were asked about the disability services and its impact on their relationship with peers, two of the students said that their peers assisted them in the management of their disability-related needs: I inform my peers of my condition and manage it myself with peers. (P3)

They further affirmed that those peers who experienced inclusive education in their school had a greater positive attitude toward students with disabilities at the university: Peers were more supportive if they were exposed to the inclusive system of education in their schooling years. (P1)

One of the two students believed that her peer relationship at the university was good because of the disability services aimed at building awareness, dispelling myths and enabling social interaction between students with and without disabilities, the recognition of students with disabilities and the development of positive attitudes toward them. The following quote demonstrates this viewpoint: Peers were supportive because disability services raised awareness and consciousness of our disability related needs, helped in our social interactions and enhancement of positive attitudes towards us. (P1)

However, two of the other students articulated that the disability services had a detrimental effect on their peer relationship at the university. This is mainly because they felt awkward and uncomfortable to avail any services/accommodations in the presence of their peers, did not want to be treated any differently from their peers and therefore, preferred to stay isolated and secluded from peers: I am aware of how annoying it is to sit next to someone who is availing of some special disability services. I quite often sit alone. (P2)

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The Disability Services Unit have had a negative effect on my relationship with peers. I don’t like to receive accommodations in front of my friends and show them that I am in need of certain type of services. (P4)

One of the students further commented that some of her lecturers make it very public as to what accommodations/services are being provided to her, thus impacting on her ability to relate to peers: Some lecturers literally announce the type of accommodations given to me. So I prefer to remain alone. (P4)

University Disability Services and Its Impact on Students’ Engagement with the Curriculum When students were asked about the disability services and its impact on students’ engagement with the curriculum, two of the students highlighted that some of the lecturers failed to adjust any material/resources suited to their needs, in spite of the university disability services submitting paperwork to lecturers requesting special modifications/adjustments for particular students. A typical example of this would be failing to provide reference materials in the enlarged print format for a student with low vision. The following quote below indicates this sentiment: It is becoming difficult to use reference material which cannot be enlarged. The Disability Unit has sent paperwork outlining my needs and requirements; however, some lecturers have failed to comply with this. (P1)

One of the two students argued that the workload of lecturers were often so overloaded that they did not have the additional time to adjust materials/resources for students with disabilities. The student pointed out that certain specific adjustments/modifications were not provided during an exam situation: My lecturers are overloaded and so they cannot make the necessary adjustments. Sometimes, these modifications are not there in an exam. (P2)

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This is discerning because students with disabilities full potential may not be reached without the specific adjustments needed. Large and diverse class sizes reported by another student was identified as the other reason for teachers failing to cater to individual needs of students with disabilities: Some of the classes are so large and diverse and so lecturers are not able to support students with disabilities. (P1)

One of the two students affirmed that those lecturers who had a background in special education were more sensitive and better able to adjust materials/resources for students with disabilities: Those lecturers trained in Special Education were more understanding and were able to provide materials in an alternative format for us. (P1)

Two other students stated that the university disability services assisted them to participate in the curriculum with the help of certain accommodations. However, while one of the students reported about having some concerns of completing assessments/assignments on time, the other highlighted the issue of poor concentration and fatigue that students with disabilities often experience in an assessment or in a classroom. This student further explained how her anxiety interfered with her actual performance in exams and her engagement with the curriculum: Many students like me have poor concentration skills and become tired during class assessments and activities. My anxiety has been problematic in my ability to concentrate in class and in exams. (P4)

On a positive note, one of the students mentioned the usefulness of the “safety net” program provided by the university disability services. Within the safety net program, students with disabilities are able to email their lecturers with questions and request for specific accommodations/alternative arrangements to suit their needs. A positive outcome of the safety net program for a student with hard of hearing was to provide for an Alternative

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Exam Arrangement (AEA) for this student. This facilitated the student to take her exams at the university in a small room where she could clearly hear instructions from the lecturer instead of having to sit for the exams at a large venue with inappropriate acoustics and sound around. The student reported that this was the most helpful part of the service in particular and has significantly impacted her ability to achieve her deserved grade(s).

Strategies to Facilitate Access and Participation at the University When students were asked about what strategies could facilitate their access and participation at the university, all four students stated that the university disability services should be advertised more extensively and all staff and students should be made aware of these services. This is evident from the following two quotes represented below: Awareness of the University’s Disability services should be highlighted during the first week orientation procedures for 1st year students. (P1) I feel that the services such as the disability service could be better advertised so students know about it as soon as possible. (P3)

One of the students believed that appropriate promotion of the disability services will not only help students with disabilities to get the help and support they need but also enable the general population at the university to be more aware of the unique and diverse needs of students with disabilities. Another student recommended the introduction of orientation and induction programs designed especially for students with disabilities apart from the general orientation programs organized for all students: Induction and orientation programs should be there specially for students with disabilities. (P4)

This can provide a more effective opportunity for students with disabilities to assimilate and make sense of the information provided and to socialize with the staff through a range of activities and to feel that they belong to the higher education community. Two other students

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highlighted that lecturers at the university should provide examples of perseverance, resilience and achievements that students with disabilities have displayed which would assist in engaging them in their studies: It is important for lecturers to acknowledge our past achievements in class. (P2)

Last but not the least, one of the students expressed the need for content delivery and assessment options to be more and more flexible and inclusive which would enable students with disabilities to demonstrate equitably the accomplishment of learning outcomes in higher education contexts.

Discussion The discussion on access and participation of university students with disabilities is classified under three heads, namely, “barriers,” “enablers,” and “strategies”. The findings on enablers can make a unique contribution to the field of inclusive education as there are no previous studies which specifically focus on this area and with these cohorts. Although a couple of studies (Hyde et al. 2009; Powell et al. 2013) delved to incorporate what facilitates access and participation, these studies have focussed on students who are deaf and hard of hearing only. The current study has expanded its horizons by including students diagnosed with vision, hearing and physical impairments. The Indian and Australian context are described as two separate heads and recommendations provided for each context.

Barriers Indian Context Within the Indian context, students expressed concerns on the inaccessibility of Braille printing or resources in Braille and the unavailability of a scribe within the higher education classroom. Shevlin et al. (2004) articulated that physical access and assistive provision were major barriers to

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the full participation of students with disabilities in Irish higher education environments. Students with disabilities in this study pointed out that classroom accommodations and modifications were inadequate in higher education contexts. There were times when students would simply go without the necessary accommodation, whether it’s extra time on an exam or arranging for a scribe in the class. Students with disabilities believed that the ignorance/inexperience of staff members made it difficult to get the help they needed—and in some cases, made them less willing to disclose their condition. Ryan and Struhs (2004) too claimed that attitudinal barriers exist that impede the full participation of students with disabilities in higher education programs. A growing body of research studies identified negative attitudes and ill-treatment of faculty and administrative staff toward students with disabilities as the major barriers to their participation at the university (Barazandeh 2005; Jung 2003; Johnson 2006; Kraska 2003). Disability Service training should be provided to university teaching staff. A major recommendation of this study would be the creation of “safe zones” within universities where students with disabilities could go to relax and talk to a counselor if they felt overwhelmed.

Australian Context A significant finding that emerged from this study was that although the disability services unit were perceived favorably in regard to supporting students with disabilities, it had a detrimental influence on some of their peer relationships at the university. Students with disabilities expressed concerns regarding receiving these services in the presence of their peers. A possible implication could be that these services should be provided more privately and in confidence. Similar findings were voiced by Hyde et al. (2009) where students who are deaf and hard of hearing reported feelings of seclusion with their hearing peer group. The student responses in the current study indicated that the workload of some of the lecturers was so overloaded that they were unable to incorporate accommodations and modifications in their lessons and during an exam situation. In a similar context of Indian universities, university lecturers not trained in special education did not have the time nor the expertise to prepare

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special materials. Fuller, Healey, et al. (2004) pointed to issues related to staff development in adjusting for students with disabilities in one university in the UK. Similarly, Fuller, Bradley, et al. (2004) identified teaching issues which impacted negatively on the access of students with disabilities in higher education settings. In the present study, time was a major challenge associated with inclusion at the university. If students with disabilities are not engaged with the curriculum, there is a risk to student retention at the university. Crosling et al. (2009) emphasized that a major area of concern within the higher education context is retention of students with disabilities.

Enablers Indian Context Within the Indian context, human support in the form of positive attitudes of some University staff with a background in special education and peers exist toward students with disabilities. Peer and staff support should be used to meet the instructional, social and disability-specific needs of students with disabilities at the university. Students with disabilities were hugely encouraged to participate in cultural activities in the university which assisted them in forming bonds with their peers and teachers. However, students articulated that site accessibility should be prioritized when events were organized at a different venue. Material and physical support to some extent were provided to students with physical disabilities in higher education contexts. However, greater support and provisions should be provided to students with sensory impairments.

Australian Context The impact of the disability services and government policy had a positive influence on the access and participation of students with disabilities at the university level. Classroom accommodations and building

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infrastructure supported the participation of students with disabilities. The disability services at the university fostered positive interactions between students with and without disabilities. Further, like their Indian colleagues, those lecturers that had expertise in special education were able to incorporate individualized accommodations and adjustments specifically tailored for students with disabilities. A noteworthy finding within the Australian context was the provision of the “safety net” program by the university disability services. The safety net program is an online platform where students with disabilities could interact with lecturers and ask for specific supports to suit their needs. This is a valuable insight for all universities aiming to better support students with disabilities.

Strategies Indian Context Unlike the Australian context, the strategies that emerged as a result of this study to enhance the access and participation of students with disabilities within higher education systems in India were to increase the magnitude of accommodations and supports and to individualize those accommodations and supports based on student needs and their personal learning styles. The need to modify university infrastructure and buildings to make it more user-friendly to students with disabilities were also evident from the student responses. The employment of specially trained teachers and provision of scholarship opportunities to support students with disabilities in higher education were also recommended.

Australian Context The strategies that could facilitate access and participation of students with disabilities within the Australian higher education context were significantly focussed on raising awareness on the university disability services so that more and more staff and students could avail those services, the introduction of orientation and induction programs designed

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specifically for students with disabilities, highlighting the achievements of past students who had a disability and the provision of flexible content delivery and assessment options.

Conclusion This study has identified the major barriers and enablers reported by students with disabilities to inclusion in university settings in two different contexts, India and Australia. It has also provided insights into the strategies that can facilitate access and participation of these students in university settings. This study has delved into the perspectives of students with disabilities and has emphasized to incorporate student voices. These findings are useful to providing stakeholders with perspectives on the development of policies and practices for inclusive education in university environments. To reshape policy and practice in inclusive education in higher education contexts, it is imperative that research continues in this field in the years to come.

References Barazandeh, G. (2005). Attitudes Toward Disabilities and Reasonable Accommodation at the University. The Undergraduate Research Journal, 7, 1–12. Bonela, G. (2014). Does Inclusive Higher Education Can Help for Physical Disability Handicapped People in India? A Comparative Analysis. International Journal of Research in Applied, Natural and Social Sciences, 2(5), 1–16. Creswell, J. W. (2008). Educational Research: Planning, Conducting, and Evaluating Quantitative and Qualitative Research (3rd ed.). Upper Saddle River, NJ: Pearson Education. Crosling, G., Heagney, M., & Thomas, L. (2009). Improving Student Retention in Higher Education: Improving Teaching and Learning. Australian Universities’ Review, 51(2), 9–18.

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Dutta, A., Scguri-Geist, C., & Kundu, M. (2009). Coordination of Postsecondary Transition Services for Students with Disability. Journal of Rehabilitation, 75(1), 10–17. Foreman, P., Dempsey, I., Robinson, G., & Manning, E. (2001). Characteristics, Academic and Post-university Outcomes of Students with a Disability at the University of Newcastle. Higher Education Research & Development, 20(3), 313–325. https://doi.org/10.1080/07294360120108386. Fuller, M., Bradley, A., & Healey, M. (2004). Incorporating Disabled Students Within an Inclusive Higher Education Environment. Disability & Society, 19(5), 455–468. https://doi.org/10.1080/0968759042000235307. Fuller, M., Healey, M., Bradley, A., & Hall, T. (2004). Barriers to Learning: A Systematic Study of the Experience of Disabled Students in One University. Studies in Higher Education, 29(3), 303–318. Goode, J. (2007). Managing’ Disability: Early Experiences of University Students with Disabilities. Disability & Society, 22(1), 35–48. https://doi. org/10.1080/09687590601056204. Hadley, W. M. (2006). L.D. Students’ Access to Higher Education: Self-Advocacy and Support. Journal of Developmental Education, 30(2), 10–16. Halder, S., & Datta, P. (2012). An Exploration into Self Concept: A Comparative Analysis Between the Adolescents Who Are Sighted and Blind in India. British Journal of Visual Impairment, 30(1), 31–41. Hyde, M., Punch, R., Power, D., Hartley, J., Neale, J., & Brennan, L. (2009). The Experiences of Deaf and Hard of Hearing Students at a Queensland University: 1985–2005. Higher Education Research and Development, 28(1), 85–98. Johnson, A. L. (2006). Students with Disabilities in Postsecondary Education: Barriers to Success and Implication to Professionals. Vistas Online. Retrieved August 31, 2010, from http://counselingoutfitters.com/vistas10. Jung, K. E. (2003). Chronic Illness and Academic Accommodation: Meeting Disabled “Unique Needs” and Preserving the Institutional Order of the University. Journal of Sociology and Social Welfare, 30(1), 91–112. Kraska, M. (2003). Postsecondary Students with Disabilities and Perception of Faculty Members. The Journal for Vocational Special Needs Education, 25(2), 11–19. Lang, H. G. (2002). Higher Education for Deaf Students: Research Priorities in the New Millennium. Journal of Deaf Studies and Deaf Education, 7(4), 267–280.

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McKenzie, K., & Schweitzer, R. (2001). Who Succeeds at University? Factors Predicting Academic Performance in First Year Australian University Students. Higher Education Research & Development, 20(1), 21–23. Mpofu, E., & Wilson, K. (2004). Opportunity Structure and Transition Practices with Students with Disabilities: The Role of Family, Culture, and Community. Journal of Applied Rehabilitation Counseling, 35(2), 9–16. National Centre for Promotion of Employment for Disabled People (NCPEDP). (2004). Research Study on Present Education Scenario. Delhi: NCPEDP. Nidhi, S. (2015). Education of Children with Disabilities in India and Pakistan: An Analysis of Developments Since 2000. Programme and Meeting Document, Background Paper Prepared for Education for All, Global Monitoring Report, UNESCO. Parliament of Australia. (2004). Completed Inquiries 2002–04. Chapter 6 – Disabilities and Post-secondary Education. Retrieved from https://www. aph.gov.au/Parliamentary_Business/Committees/Senate/Education_ Employment_and_Workplace_Relations/Completed_inquiries/2002-04/ ed_students_withdisabilities/report/c06. Powell, D., Hyde, M., & Punch, R. (2013). Inclusion in Postsecondary Institutions with Small Number of Deaf and Hard-of-Hearing Students: Highlights and Challenges. Journal of Deaf Studies and Deaf Education, 19(1), 126–140. Ryan, J., & Struhs, J. (2004). University Education for All? Barriers to Full Inclusion of Students with Disabilities in Australian Universities. International Journal of Inclusive Education, 8(1), 73–90. https://doi.org/10. 1080/1360311032000139421. Shevlin, M., Kenny, M., & McNeela, E. (2004). Participation in Higher Education for Students with Disabilities: An Irish Perspective. Disability & Society, 19(1), 15–30. Shiu, S. (2001). Issues in the Education of Students with Chronic Illness. International Journal of Disability, Development and Education, 48(3), 269–281. Vickers, M. H. (2001). Unseen Chronic Illness and Work: Authentic Stories from “Women In-Between”. Women in Management Review, 16(2), 62–74. World Bank. (2007). People with Disabilities in India: From Commitments to Outcomes. New Delhi: Human Development Unit. South Asia Region. Available at http:// siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/ DISABILITYREPORTFINALNOV2007.pdf. Accessed December 28, 2011.

27 Providing for the Needs of Young People with Disability in Lebanon Phil Doecke

Introduction The population of each country in the world includes those with v­ arying forms and levels of disability (World Health Organization [WHO] 2011). Increasingly community, national, and international leaders have acknowledged the social, moral, and ethical importance and responsibility of seeking to meet the diverse needs of all members of the community, including those with disability (UNESCO 1994). The learning and development undertaken at home, in schools, and other forms of training should be supported in every way that enables everyone to meet their fullest life and career potential. This support should be undertaken and implemented in collaboration with the individual, their carers, their health care advisers, and professional providers, and encouraged, equipped, and supported as fully as possible by the community’s governing bodies. This is being addressed to a greater or lesser extent of effectiveness, efficiency, and success around the world (Doecke 2016). P. Doecke (*)  Formerly School of Education, RMIT University, Melbourne, VIC, Australia © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_27

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This opinion piece describes personal experiences of community attitudes toward those with disability in Lebanon. The author undertook discussions with members of a family from Beirut, Lebanon’s capital, where they were all born. A younger member of the family has migrated to the author’s country as a young adult, while the others remain. The father, whose work history is a central positive element in this chapter, continues to live, work, and serve in his college in Beirut. Their stories provide insight into and experience of young people who have disability in Lebanon. It recounts their experiences of exploring aspects of their history, feelings, and opinions. These elicit questions of how culture, politics, dissension, and conflict can create dysfunction and impediments to attempts to provide supportive conditions and processes for those who may have additional needs, when compared to the majority of those in the community. As such, it provides an opportunity to develop a discourse on perspectives on youth with disability in that country. This anecdote is set against a background of articles found during a search for literature, which set out policies and practices by Lebanese authorities regarding persons with disability. The search further sought articles which respond to and express opinions concerning available support for these persons. In particular, this chapter focuses on young people with disability, providing a summary of views shared by advocacy and human rights groups in Lebanon. This chapter refers to special education and schooling only by its requirements as just one aspect of the whole approach to support and providing for young people with disability.

Background The Lebanese Republic is a sovereign state in Western Asia. It is bordered by Syria to the north and east, and Israel to the south. Cyprus is to the west, across the Mediterranean Sea. Once governed by France, Lebanon was granted independence in 1943 (Central Intelligence Agency [CIA] 2017). Since that time, the country has experienced political struggles, with short periods of economic growth due to the importance of its central location on the Mediterranean coast of the Middle East, making it suitable for finance and trade (CIA 2017). The urban

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population is growing rapidly, with rural folk moving to the cities, and major growth in refugee numbers (CIA 2017). Its population in 2017 is over six million. It has experienced both extensive local and international conflict: during the period 1975–1990 it was in a state of civil war, with an estimated 120,000 fatalities. Syria has had a major influence upon Lebanon’s foreign and internal policies, with its military occupying Lebanon from 1976 until 2005 (CIA 2017). There have been frequent incidents between Lebanon-based militia and Israel after Syria’s withdrawal, and some border issues are still unresolved (CIA 2017). Since 2011 when conflict commenced, and now (at the time of writing, 2017), with Syria torn apart in its own major conflict, over one million Syrian refugees have flooded Lebanon (reported by the international news agency Al Jazeera, 31 March 2017a). This influx has exacerbated the significant political and social instability that pervades the country. As sources and references for this article indicate (Al Jazeera 2017b; Al Thani 2007; Azzi 2012; CIA 2017; Lakkis et al. 2015; UNESCO—Beirut Office 2013), there are economic, cultural, and ethical issues in the existence and practice of a secure and just government at this time. And consequently, the marginalized and challenged seem to fare the worst. The focus of this chapter is to provide an overview of cultural, political, and social views of disability in Lebanon, especially with respect to young people, as they contribute to the future of any nation. Youth with a disability are a part of this picture. This information is based upon available literature and personal accounts, as to how Lebanon is responding to the needs of young people with disability in their population, and managing them.

Formal Connections and Responses to Disability Protocols Persons with Disability in Lebanon In 2012, Azzi argued that there was an incapacity to have a real estimate of persons with a disability in Lebanon. The UNESCO—Beirut Office (2013) report stated that “according to the Central Administration for

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Statistics (CAS), there are no statistics on the disabled population” in Lebanon (p. 9). More recently, Bou Saada and Nasreddine (2016) cited a 2015 Universal Periodic Review (UPR) report that “10 percent of the Lebanese population, the equivalent of 400,000 citizens, faces physical or mental disabilities” (p. 1). It may be argued that across the world each country’s government and leadership may be seen to consider social and welfare issues from two main perspectives as to how to address the needs of those within its community. They may first seek to make decisions from among their own experts, based upon values, beliefs, and resources available to them. These are then influenced and shaped by awareness and concerns which lead to international and regional forums and conferences, where evidence is presented, debate is initiated and stimulated, and findings are produced. Subsequently recommendations are proposed, and decisions and policies made. Participation by Lebanese representatives in these forums allows them to hear and understand what global issues pertaining to citizens with disability are under discussion, and what recommendations are proposed by nations around the world to meet the rights and needs of those with disability. They then bring these reports to their own government for consideration and response. An examination of available Lebanese national and internal governance documents and policies is considered in this chapter.

United Nations Conventions Lebanon is signatory to, but has not ratified, the United Nations (UN) Convention on the Rights of Persons with Disabilities (2006) (UNESCO—Beirut Office 2013). Lakkis et al. (2015) stated that Lebanon “was one of the first countries to sign it” (p. 24). One hundred and fifty-four other nations have signed while another 128 nations have ratified the Convention—but not Lebanon (UNESCO 2013; United Nations 1982). Ratification implies endorsement with a commitment to take the recommendations on board and implement them. In celebrating the UN Convention (CRPD) the UNESCO—Beirut Office (2013) applauded “the unprecedented transition from the medical care approach … to an approach based on human rights and social

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inclusion” (p. 6). The report continued to describe the Lebanese government’s progress in addressing disability reform. The government’s signature piece is the Law 220 on the Rights of Disabled Persons, in which it demonstrates its commitment to international law on disability (Lakkis et al. 2013), and to apply it at home.

Law 220 on the Rights of Disabled Persons (Law 220/2000) In 2000, the government and parliament passed Law 220 on the Rights of Disabled Persons (Law 220/2000), purporting to support the rights of persons with disabilities (Lakkis et al. 2015). The UNESCO—Beirut Office (2013) report explains that this law addresses disability as a rights-based issue, requiring the government to develop and implement policies and programs based on the principle of integration. Lakkis et al. (2015) explained that the law is constructed on a set of rights to integrate those with disabilities into social and economic life, through the provision of employment, access to transport, and adequate housing, with guarantees of access to health and educational services (p. 4). The practical element of the policy inherent in Law 220/2000 invites persons with disabilities to voluntarily register themselves with the responsible government department—the Ministry of Social Affairs. They would be issued with a disability card. Unsurprisingly, there is reluctance to register. The UNESCO—Beirut Office (2013) suggested that this reluctance could be due to two reasons: the first being the narrow definition of disability adopted by the Ministry. For example, those with a hearing impairment are excluded. The second reason is social stigma and shame. Many individuals are reluctant to have the label “disabled” associated with them (UNESCO—Beirut Office 2013). In 2012, the Ministry of Social Affairs estimated the number of holders of the Personal Disability Identification card at around seventy thousand persons made up of 62.50% men and 37.50% women (UNESCO—Beirut Office 2013). However, Azzi (2012) and Al Thani (2007) argued that the restricted definition of “disability” enabling eligibility for this card omits many with disability outside of this definition

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(such as the hearing impaired, noted above). It depends on individuals or their families voluntarily claiming to have a disability; clarity about the program lacks comprehensive evidence supported by national and regular surveys conducted by the government’s Central Administration of Statistics.

Access to Information Named after Article 19 of the Universal Declaration of Human Rights, Article 19 is an organization which scrutinizes national laws, practices, and policies to evaluate whether or to what extent the rights of individuals and groups within a nation are being met. This includes access to and freedom of information. Article 19 declares that everyone has the right to freedom of opinion and expression (United Nations 1948). Reviewing the laws and policies legislated in Lebanon purporting to support and promote the health and well-being of citizens with disability, Lakkis et al. (2015) in Article 19 (Lebanon: Disability and Access to Information ) have found that the commitment of Law 220/2000 to provide for the needs of these citizens cannot be undertaken nor implemented with any effect or success—there is no mention of the provision of information. There is no adequate access to information about their rights and services (Lakkis et al. 2015). They report that Lebanon’s record is very mixed. Information “often flows through inaccessible informal networks… it is not accessible for persons with disabilities” (p. 24). In her 2012 article, The Realities of Aid Targeting Persons with Disabilities (PwDs) in Lebanon, Azzi provided a historical review of viewing disability in that country. She discussed how a shared Arab culture dominates the approach toward disability. Perhaps the first to report authoritatively on understanding issues surrounding disability in the Arab nations, Al Thani (2007) has reported extensively on cultural views by Arabs toward persons with disabilities across the Arab nations’ region. Historically, people take care of members of their own families, rather than delegate that responsibility to the government (Al Thani 2007). If there is a family member with a disability, the elders of the

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family make decisions about what they in their experience see as best for the family. Very often, having a family member with a disability is viewed negatively, as a source of reproach and shame, so that individual is highly likely to be kept out of sight—invisibility is imposed (Al Thani 2007). Government representatives are also members of that society and culture, and are therefore likely to also hold to those sociocultural views. Al Thani’s (2007) inquiries have found that there is no recognition of needs, potentials, and abilities of persons with disabilities to contribute equally to society. The main levels of support provided to those with disabilities are most often provided by a personal effort on the part of a family that possesses adequate financial resources. Or, for the person with a disability to take what is often unprecedented initiative to break down barriers and overcome obstacles, whether they be social, physical, environmental, or attitudinal. The government has demonstrated a disinclination to lead and actively support the community of those with disabilities; it may be argued that this cultural view may contribute to this lack of action. One view of how disabilities may have been acknowledged may be seen through the period of ongoing armed conflicts within the region. These increased the number of “living martyrs” with disabilities—which helped bring increased political attention to “disability” (Azzi 2012). What emerged however was a “charity approach that was adopted by successive Lebanese governments” (Azzi 2012, p. 2) and which still considers persons with disabilities as “objects” of charity. This approach recommends special institutions for medical treatment and social protection rather than encouraging general institutional services to mainstream and adopt inclusive practices in their services toward persons with disabilities in Lebanon. Azzi continues that the charity approach erects barriers in front of the rights-based movement for persons with disabilities (Azzi 2012). The consequence is that there is a population of persons with disabilities who lack essential education and are uninformed and naïve about their basic rights and access to services (Lakkis et al. 2015). These barriers have increased the helplessness of persons with disabilities, leading to a higher prevalence of poverty among those with disability in the population (Azzi 2012).

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What is unfortunate is that few persons with disabilities in Lebanon have the privilege of being aware of being rights holders. Education is crucial to their greater awareness of being a rights holder.

Educating Persons with Disability The Lebanon Center for Educational Research and Development of Ministry of Education and Higher Education established the National Educational Plan for Persons with Disabilities in 2012. Strong, positive educational goals have been presented and published in this plan: To broaden the reception capacity in public schools in order to ensure the principle of equal opportunities and conditions for full enrollment of different categories of students; To improve the terms, conditions, and quality of basic education without discrimination as a preventative measure to reduce dropout and marginalization; To develop caring mechanisms for all kinds of deficiencies to compensate for the poorest social families of the society; To ensure school support mechanisms for children with disabilities; To build the capacities of some members of the teaching staff on how to educate and support persons with special needs; To secure inclusive schools, including buildings, equipment, and tools adapted to all cases of children with disabilities; To bring attention to the quality and the harmonization of curricula for various categories of students; To introduce specialists into the school structure to detect and treat disabilities and difficulties; To raise awareness on the culture of rights to all segments of the Lebanese society; and To open the school on the surrounding environment, allowing for the involvement of parents in prevention programs. (UNESCO—Beirut Office 2013, pp. 15–16)

However, Education receives only 2.6% of the Lebanese national Gross Domestic Product (2013), and literacy is not yet nationwide (CIA 2017). What might this mean and imply?

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Article 59 of Law 220/2000 asserts that the State is responsible for providing integrative educational services for persons with disabilities (UNESCO—Beirut Office 2013). However, “almost all clauses pertaining to education are not yet implemented 13 years after the promulgation of the law” (UNESCO—Beirut Office 2013, p. 14). Few schools have facilities to ensure accessibility even for those with physical and mobility disability, let alone for curricular and educational accessibility (J. Nahas, personal communication, March, 2017). There are few educational programs which support and promote a positive image of persons with disabilities within schools among teachers and students. The report cites research undertaken across Lebanon by Sarwate Chamsine, a postgraduate research student at Jinan University. A great number of schools still refuse to accept students with disability into their classrooms (Sarwate Chamsine 2013). Bou Saada and Nasreddine (2016) argued that the state “still adopts the policy of isolating people with disabilities, as only one percent of the disabled youth is enrolled in regular official schools” (p. 3). Al Thani (2007) asserted that “it would not be an overstatement to say that the lack of educational opportunities for persons with disabilities contributes to the high percentages of illiteracy in the region” (p. 3). A decade later, there is little improvement. It is difficult to teach learners with special learning needs without teachers who have training, skills, and experience in working with special needs learners. There is a shortage of teachers with specialist skills to work in the available special schools (Al Thani 2007; J. Nahas, personal communication, March, 2017). It is only in recent years that some universities have started to provide training for teachers to work with learners with disability. These are provided in the form of annual workshops. A search for literature and information through library databases and the internet, and additionally by discussions with the respondents in Beirut—who are employed in education in Lebanon—reveal that there is still only minimal provision of pedagogy which addresses the needs of learners with disability (J. Nahas, personal communication, March, 2017). However, Haigazian University is a private university in Beirut which provides a Diploma of Special Education Fundamentals (Haigazian University, n.d.). The Lebanese Center for Special Education (CLES) (Lebanese Center for Special Education, n.d.) has been established in

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collaboration with the Lebanese Ministry of Education and Higher Education, partnering with UNICEF, and supported by various philanthropic connections. It provides specialist courses and instructors to deliver workshops for Lebanese teachers (cles.org, 2017). Al-Mabarrat Association is a religious-based organization which provides short course instruction for teachers through workshops in inclusive education (Al-Mabarrat Association, n.d.). Other than these, no formal specialist teacher education is taught. Joseph Nahas is employed in a privately owned school, a polytechnic college where trades and career skills are taught to young people, many who have various physical, intellectual, and behavioral impairments. He reports that while the government funds the school where he works, there is no special financial provision for learners with disability (J. Nahas, personal communication, March, 2017). There are some specialist schools (for example, Al-Hadi Institution for the visual and hearing impairments and language and communication difficulties), however they are mostly privately funded by or are recipients of philanthropic gifts. Many of these have international volunteers on their staffs. Limited places are available for learners with additional learning needs in special schools. Most children with disabilities are enrolled in regular mainstream schools. “Ten years ago it was unheard of that disabled students were enrolled in mainstream schools” (J. Nahas, personal communication, March, 2017). In his experience, he has encountered notable ongoing gender and social inequality in Lebanese society. Only recently have special schools and mainstream schools started to be equipped with facilities for children with special needs—for example, identified car parking spaces, access ramps, modified bathrooms for those with disabilities (J. Nahas, personal communication, March, 2017). The so-called upper and educated classes increasingly seem to understand and embrace social equality. However older people, people from rural areas, and those from the prevailing religion of the region, still hold to traditional discriminatory values, such as considering girls of lesser value than boys (J. Nahas, personal communication, March, 2017), and those with disability are given little value and respect (Al Thani 2007).

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Youth with Disability The Youth Policy in Lebanon document (Lebanese Council of Ministers 2012) stated that youth comprise about 27% of the Lebanese population (in 2012). This age group is from about 14 to 29 years of age (UNESCO—Beirut Office 2013). The main challenges facing these youth are problems related to education and in particular the issue of school dropouts, low level of participation in public and political life, unemployment, and migration. Youth unemployment runs at 22.1% (reported in CIA 2017, measured in 2007). Focussing on youth with disability, the Youth Policy document speaks of the need for the government to implement a strategy of social inclusion and integration of young persons with disability in all its programs and projects. It further expresses the need to change the widely negative cultural attitude toward disability in Lebanon toward greater tolerance, acceptance, and shift in attitude. Importantly, it argues for the government to fully implement its Law 220/2000 on disability. In their 2016 article, Disabled People Deprived from Their Rights in Lebanon: The Inadequate Implementation of a Promising Law, Bou Saada and Nasreddine discussed this law and responses to it. They have found that there is widespread evidence of a lack of natural justice and inclusion for folk with disability—despite the apparent provisions of Law 220/2000. For example: “Sorry, we cannot hire disabled people” (a manager, quoted in 2016 and reported in Bou Saada and Nasreddine 2016). Ten years later “the inadequate implementation of these laws has deprived disabled Lebanese people from their basic rights” (Bou Saada and Nasreddine 2016, p. 1). Bou Saada and Nasreddine (2016) related that the Press Officer of the Lebanese Physically Handicapped Union (LPHU) indicated that “the Civil Service Board [CSB] announces available employment opportunities. Although disabled and nondisabled candidates can equally apply for the job, only few disabled people are chosen.” The Press Officer continued that “CSB employees themselves use degrading expressions, such as the word “deformity,” whose usage was originally banned by the law 220” (Bou Saada and Nasreddine 2016, p. 2).

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Personal View Joanna’s Story The following is a narrative provided by a young mother, who was born in Lebanon, and who now lives in Australia. She describes her own experiences and opinion, before describing her father’s story who continues to live and work in Lebanon. I grew up in a country where people are very proud and arrogant, and think that they are better than anyone else. Lebanese people are very racist toward other Arabs or expatriates from India, Sri Lanka, Philippines, Egypt, and so on, who come to Lebanon to work as house cleaners, maids, or other serving jobs. So, it is not surprising that Lebanese are somewhat discriminatory against people with disabilities, whether they are mental [intellectual] or physical [physical, sensory] disabilities. In Lebanon, people with disabilities are looked upon as second grade humans. There is not much awareness about disability, and it is more of a taboo subject that is rarely discussed. I remember as a child being scared of other kids or older people with a disability; we were told not to touch them or to go near them, as if they were diseased. At school, [about 2002–2005] I remember seeing only a handful of students with physical disabilities, and they were bullied a lot. Everyone at school was a bully, including me; you bully someone and someone else bullies you. It’s a vicious cycle of nonstop bullying, so those students with disabilities were bullied the most as they were the most vulnerable. In university, I don’t recall seeing anyone with a disability, as if people with disabilities didn’t have the right to be educated and to learn at a tertiary level. My experience as a student [in university in the country where I now live] was completely different and it changed my view of people with disabilities. Yes, they might have a disability but they are humans with the same rights, and sometimes the capability like me to study and excel in life. Lately on Facebook, I have been seeing more awareness about autism and other mental [intellectual] problems among the Lebanese. I see a light at the end of the tunnel! (J. Jabra, personal communication, March, 2017).

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Some Illumination in a Shadowy Scenario There is indeed some light in this dark ocean of inactivity, discrimination, and apathy. Joseph Nahas is Joanna’s father. He is trained in appliance maintenance. Employed in a privately owned polytechnic college to teach trades to young people, he has developed a program whereby his students work alongside similarly aged students with intellectual impairments and behavioral concerns. Together they learn to repair and maintain electrical appliances. Ultimately they are equipped to have a meaningful, purposeful career—far beyond the otherwise likely life of sitting at home watching TV or wandering the streets. They actively engage in constructing their own self-esteem, fulfilling their potential, and effectively contribute to the needs of the community (J. Nahas, ­personal communication, March, 2017).

A Caring Teacher’s Influence Joanna’s Narrative Continues Dad used to know the mother of the owner of the school. He used to do maintenance on her electrical appliances. Once she knew that the school principal (her son) was going to open a new class for home appliance maintenance she told him to hire Dad. They did, and Dad created the curriculum for the course. The course wasn’t intended to be for students with disabilities. However, since my Dad is a pastor at church and is wise, the school supervisor used to send the students who were on detention, or were rebellious (had behaviors of concern) to him so that he could counsel them. Also, since Dad has a lot of patience, students expelled from other schools or other courses within the school were enrolled in Dad’s class. Dad was a counselor to them more than he was a teacher to them. It became well known in the school that students who’d failed other courses who were now enrolled in Dad’s class were passing that course. It was because Dad simplified the course material for them, and offered a lot of practical sessions.

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Then, students with physical disabilities started enrolling in his class, and upon completion of the course were able to find jobs in small businesses to support themselves. Students with mild intellectual disabilities who were never able to pass at a mainstream school were getting good grades in his class; they were so proud of themselves. Dad doesn’t have any teaching qualifications; however, his class is one of the most successful in the school (J. Jabra, personal communication, March, 2017). In J. Nahas’ experience, it is difficult for young people with disability to obtain employment. Apart from employment opportunities described by J. Nahas, other young people, such as those with an intellectual disability, find work in supermarkets restocking shelves, or doing cleaning. Christian schools employ young people with disabilities in school libraries or arts rooms. More recently, some with physical disabilities are being successfully employed by international electronic and media companies such as Samsung and Apple—and are receiving good salaries (J. Nahas, personal communication, March, 2017). Their employers are recognizing their intellectual capabilities, even though they may have other impairments. It may be argued that as multinational companies, this attitude is an international attitude which is reflected in the companies’ recruitment policies, and is not initiated from within Lebanon commercial policy. This may be a positive model for others to follow. However, most struggle to find employment because of widespread discrimination (J. Nahas, personal communication, March, 2017).

Discussion Responses to Conventions and Protocols A range of political decisions and cultural views have been presented here, along with personal views, which portray the scenario in Lebanon in which many people with disabilities live. It could be alleged that the relatively recent civil upheaval had significantly impacted views about and decisions made concerning support for those with disability in

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Lebanon. The task of postwar rebuilding is enormous. Hypothetically, the cost of providing additional care, specialist educational resources, and more could provide an excuse which could be interpreted as theirs not being a pressing priority, or in the current national interest. Further, the view could be held to exclude any support to those who cannot contribute to the task of rebuilding. This allegation is part of the author’s reflections and would need support through further in situ research. By not ratifying the United Nations Convention, the Lebanese Government recognized and acknowledged that it was not in a position to meet the stated aims, intentions, and policies of the Convention. But in so doing, while this may present as realistic based on its current economic position, it portrays a disturbing attitude of noncommittal to and nonrecognition of the rights of a significant proportion of the population. It is discriminatory—it does not represent equality or democratic justice. The government does not yet wish to acknowledge the rights of those with disability (Al Thani 2007; Azzi 2012; Lakkis et al. 2015). Azzi (2012) argued that “economic and political reasons are still the pretext behind the Lebanese government reluctance to enforce Law 220/2000 and the ratification of CRPD, and its implementation” (p. 3). With no government plans, aid is spasmodic and scattered, lacks focus and strategic orientation, and reaches only a few within the country. Non-Government Organizations apply their own structures and management to provide aid. Official government reports contain narrow views and recommendations concerning how needs are being addressed (UNESCO—Beirut Office 2013). The recurring question is asked: Why is there is a widespread attitude of apathy or intolerance toward those with disability in Lebanon? Actual government policy displays apathy and inaction (Azzi 2012; Bou Saada and Nasreddine 2016; UNESCO—Beirut Office 2013). There is an ongoing lack of inter-ministerial communication, information is withheld from the community, and there is limited provision of resources for persons with disabilities (Lakkis et al. 2015). Government Law 220/2000 provides for persons with disabilities to register for an ID card; however, there is stigma and shame to be formally labeled as “disabled.” This narrow view is arguably highly

570     P. Doecke

discriminatory. The opinions expressed by the Lebanese authors such as Bou Saada and Nasreddine, and Lakkis, Nash, El-Sibai, and Thomas, suggest that this Law is only partially successful. The implementation of this card is not widespread. Bou Saada and Nasreddine (2016) suggested that “the inadequate laws’ application lies within the Lebanese political system itself ” (p. 3). They argued that two former prime ministers “held the implementation decree of the rights of disabled people and the ratification of the international convention as a priority in their agendas” (p. 3). However, their two governments were dissolved, and the substituted temporary government has disregarded the topic of disabled people’s rights and procedures to implement relevant laws have been dismissed. Widely differing political agendas have had a significant impact upon the rights and lives of groups that are poorly empowered (Bou Saada and Nasreddine 2016). Al Thani (2007) saw a more deeply rooted cultural view regarding views of persons with disabilities. She argued that a negative view of those with disabilities has long been part of the Arab nations’ region’s cultural views and approaches. These may be exemplified through communication, language, and constraints to these.

Access to Information Al Thani (2007) asserted that, in her opinion, the greatest challenge facing disability in the region is the lack of awareness of the rights of persons with disabilities. Cultural views which rank and compare people’s abilities and status still continue to influence decisions about prioritizing allocations of official funding support. Persons with disabilities are a source of shame, a financial burden, even seen as a curse on their families (Al Thani 2007). There is some support available for those with disability, however there are constraints to accessing this support. Withholding information is a constraint. Governments are purportedly the people’s representatives and leaders. There are concerns if information is not freely published in ways that all members of the community can hear or read, to learn and take action to support their day-to-day life needs.

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The law to provide those with disabilities with a unique identity card shows little success, as users—both holders and welfare and health service providers—are not fully aware of the provisions afforded to cardholders, even to those who do have the “courage” to seek to apply for the card (Lakkis et al. 2015). This shows a discriminatory approach. The consequences are socially divisive, and nonconstructive. The Lebanese government leaders evidently are not yet willing nor ready to address and meet the needs of the whole population—of all their citizens. Changes will be slown; it may take several generations. Providing practical recommendations, Lakkis, Nash, El-Sibai, and Thomas argue that the government of Lebanon ought to ensure that all persons with disabilities have access to information, and that this access would help improve and enhance the government’s relationship with a significant portion of the community which are often excluded from decisions that affect them. This would go a long way to providing an inclusive, increasingly democratic society (Cologon, n.d.; Lakkis et al. 2015). Making sustainable changes to a long-prevailing cultural view however is a major sociocultural challenge, requiring a significant philosophical, sociological and even a shift in practical religious thoughts and beliefs.

Cultural Views of Disability—And Labeling One way of evaluating and reflecting on a cultural view of disability is to consider how language is used to describe it. There is an issue of concern regarding semantics, and the manner of use of terms and descriptive phrases throughout the various texts exploring those with disability in Lebanon. Labeling indicates how individuals, the community, and society choose to describe how they see and understand people; it expresses the level of acceptance and respect they offer various individuals and groups (Wagner 2017). Sometimes the label is self-imposed. Sometimes the label is derived from the community and is externally imposed. The label may be appropriate, descriptive, supportive, and successful; at other times, it may be destructive, derogatory, or demeaning. Over the course of time discourse may be undertaken whereby the views of those

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associated with disability reflect on and evaluate the semantics, meanings, and implications of terms which are used to describe those with disability. The intention is to describe conditions in supportive ways, in which those with disability or a disabling condition can hold a positive identity, and associate with others without fear of threat, discomfort, harm, minimization or misunderstanding, disrespect or ridicule. Shifts and maturation of thought pertaining to labeling, see terms used in the twenty-first century context and replace terms used in previous decades which are now no longer considered acceptable. Yet, frequently found throughout the literature from Lebanon are terms which internationally are considered unacceptable (Al Thani 2007). Language reflects cultural views and values (Wagner 2017). The continued use of unacceptable terms may allegedly describe a sustained culturally negative view of those with disability and their impairment or condition. As such, the ramification is that many may class them as less worthy or valued members of society. The words used to describe or denote disability are derogatory and pejorative (Al Thani 2007). People are often identified by their disability, or their disability replaces their given names. In colloquial language, the words that denote different types of disabilities have become common swear words. While not so common as it once was, they still do exist (Al Thani 2007). By perpetuating the use of such language, it is argued that a demeaning approach to those with disability continues throughout the country and the region, leading to sustained cultural practices and attitudes of disrespect, segregation, withholding of rights, and shame.

Cultural Views of Disability—And Labeling—In Education Article 26 of the Universal Declaration of Human Rights states that Education is a fundamental right of all people—including children and youth (UN General Assembly 1948). Children with special needs also have this fundamental right (UNESCO 2014; Croft 2010). Meeting their needs may require additional skills and strategies to be put into place. While specialist teaching skills and inclusive practices in teacher

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education programs in Lebanon are not yet widespread nor required, there is evidence that some universities and teacher education support providers are making specialist workshops and training available (Al-Mabarrat Association, n.d.; Haigazian University, n.d.; Lebanese Center for Special Education, n.d.). This is encouraging. Education is the foundation of one’s active involvement in society (UNICEF 2013). As reported by the UNESCO—Beirut Office (2013), by not yet successfully implementing the National Educational Plan for Persons with Disability, the rights of many young people are significantly curtailed. In international references, the term integrated education is used widely to describe contexts where learning and teaching are facilitated for children with disabilities alongside nondisabled children (Doecke 2016). The application of the practice of integration in schools sees learners with disabilities in the same physical learning area or locality alongside the other learners. However, their learning may be supported only by minimal adaptations and resources (Kohama 2012). The curriculum, assessment, and facilities provided by the school show some recognition that the learner has additional learning needs, but the learner may be restricted from opportunities to take part in all aspects of the school’s program. The children are in the same learning space, for most of the time, however they are not learning together—they are still separated. These include the curriculum, assessment, or extracurricular activities, such as excursions or camps, undertaken by all other students (Doecke 2016). Integrated education does not go far enough in ensuring equity of learning. A successful, comprehensive school intentionally seeks and plans to meet the learning needs of all its children, and identifies the learning needs of each learner individually. Schools and education authorities desire to provide inclusive education. Inclusive education involves all aspects of the school and its education process (Hyde et al. 2014). They adopt its culture, policies, and practices so that the diversity of all students can be responded to. The curriculum is adjusted as are the teaching methodologies so that all students learn and benefit. It may be argued that the UNESCO—Beirut (2013) report uses the term “integration” in ways that suggest that Lebanon’s education providers—perhaps even the report authors—are not yet willing, equipped, or able to fully attempt to address the learning needs of all students.

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Arguably, the use of the term “integration” in this report indicates a fundamental shortcoming with understanding the nature of disability. “Integration” does not imply inclusion. The two terms are not interchangeable. By perpetuating the use of such terms, it is argued that a demeaning approach to those with disability continues throughout the country and the region, leading to sustained cultural practices and attitudes of disrespect, segregation, withholding of rights, and shame. Access by young people to meet essential personal and social needs is limited. Inclusive education is limited. Education provided by skilled, trained, qualified specialist teachers is still very limited. Access to curriculum which meets the diverse needs of special education needs learners is still not widely available in schools. Indeed, few schools are willing to accept, enroll and provide for special education needs learners (Al Thani 2007; J. Nahas, personal communication, March, 2017; Sarwate Chamsine 2013; UNESCO—Beirut Office 2013). Research surveys, and published and verbal reports, portray that over the past decade there has been little change in the difficult situation for a large proportion of young people with disabilities to engage in quality educational experiences and learning (Al Thani 2007; J. Nahas, personal communication,March, 2017; Sarwate Chamsine 2013; UNESCO—Beirut Office 2013). And last but not least, few public buildings, such as public schools, provide physical access for those with disability (UNESCO—Beirut 2013). There are contrasting concepts of behavioral responses evident throughout discourse into disability around the world (Doecke 2016). These include acceptance and action, apathy and rejection, and “shame” (Halder 2016). All the articles found relating to Lebanon which were reviewed for this chapter, and the personal reflections, demonstrate that an enormous challenge prevails for the national government and its leaders. Doecke (2016) argued that where the presence of individuals with disability may not have a high or significant status and recognition in a community, many in that community may seldom bear them in mind or be concerned about them in any way. If they do encounter someone with disability, there is a passive response, which suggests this person, and their condition, has nothing to do with me. For some, it may even be a repulsive response. It is argued, that an attitude of apathy or repulsion toward those with special needs is more prevalent in

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some societies that may be acknowledged, or may be aware. For some children it is a learned repulsion, as suggested by Jabra (J. Jabra, personal communication, March, 2017). Where there is ongoing history of a cultural lack of authentic compassion and care and social justice, this position is exacerbated. The positive approach is shown by small organizations, non-government providers, individuals such as the various writers who write on behalf of the community of those with disabilities, and the teacher whose story is portrayed in the anecdote provided. Literature has been reviewed pertaining to views of and action taken in support of community members with disability throughout Lebanon. These portray an attitude of minimal compassion and support by ­government in authority and power. There is an alleged cultural reluctance, in the light of other pressing issues which are taking priority. Pledged financial commitments have not been fulfilled (CIA 2017). The ongoing Syrian conflict has resulted in more than one million registered displaced persons attempting to settle in Lebanon, placing additional strains on a weak, poorly operational government. As a citizen, J. Nahas notes that after the civil war many were left with permanent disabilities, yet never received support or any form of welfare (Azzi 2012; J. Nahas, personal communication, March, 2017).

Conclusion This overview of Lebanon’s approach to those with disability, and especially among its youth, show issues of concern. Numbers of those with disabilities are uncertain, as there is unverifiable data collection and reporting. The lack of ratification of the United Nations Convention shows that the national leadership is not committed to supporting those with disabilities (Lakkis et al. 2015). The Law 220/2000 provides a partially salutary acknowledgment of persons with disability requiring additional identification and support through the issuing of a disability card, however the administration and outcomes are reported as poor and ineffectual. A key aspect of this is the widespread reporting of official reluctance or inability to provide the community with information

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about the rights of the cardholder. Indeed, persons with disability are seen to be strongly restricted from having access to freedom of basic human rights. One commentator—a respected United Nations regional rapporteur—considers that citizens with disability in nations of the Arab region including Lebanon—are “invisible” (Al Thani 2007). A common view taken is that persons with disability are viewed as charitable cases—a tokenistic view of conferred helplessness and lacking in human rights-based equity and dignity. It may be seen that there have been some small starts made in Lebanon to addressing the educational needs of young people with a disability. There are some courses being delivered by private, international providers. Individuals in individual circumstances can make a significant and long-lasting difference. However, there is no evidence of all initial teacher education students being required to understand the teaching needs of providing inclusive learning for learners with a disability. Nor is there evidence of widespread teacher education in inclusive education. What is evident is the low levels of successful leadership and practice demonstrated by the national Lebanese government in policy reform and support for those with disability. Azzi (2012), Bou Saada and Nasreddine (2016), Lakkis et al. (2015), and UNESCO—Beirut Office (2013) all record that the government has made little progress toward meeting the rights of those with disability. The one strategic effort they have made—the provision of a “disability card”—is controversial and only minimally successful; with token recognition and widespread discrimination whether holding a card or not. There is repeated evidence of a cultural negativity by many in the community toward those with disability in Lebanon (Al Thani 2007; J. Nahas, personal communication, March, 2017). Foremost is the government’s reluctance to meet global agreements toward those citizens with disability. There is an inculcated view that those with disability may be treated negatively, or at least, with apathy. This is illustrated by common and repeated use of terms that globally are no longer considered acceptable when discussing those with disability. Even one of the official representative organizations continues to be called the Physically Handicapped Union.

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The government is under major pressure to cope with the recent arrival of an extraordinary number of refugees. This has impacted the government’s capacity to address the ongoing needs of those with disability within their own population. And if there are cultural prejudices, these may influence a reluctance to make crucial decisions over distributions of the country’s limited resources to those with disabilities—if it is felt that they will provide little contribution in return. Much of Al Thani’s assessment, so articulately presented and discussed in 2007, regretfully continues to hold true. “Whatever the case may be, and in the end it is possibly a combination of all those factors – the lack of resources, the lack of recognition and awareness, the restrictive political systems, and the levels of social and economic development – persons with disabilities in the Arab region face a great deal of challenges” (Al Thani 2007, p. 3). Acknowledgements   I wish to offer my sincere thanks to Joseph Nahas and Joanna Jabra for their willingness and time to share their experiences and valuable insights of this aspect of their lives in Lebanon. I also wish to thank Claudia Orellana for her skillful reviewing and helpful suggestions regarding accuracy of the final text.

References Al Jazeera. (2017a). Number of Syrian Refugees Passes One Million. Retrieved from www.aljazeera.com/news/2017/03/number-syrian-refugees-passes-million-170330132040023.html. Online News 31 March 2017. Al Jazeera. (2017b). PM Hariri: Lebanon at ‘Breaking Point’ Due to Refugees. Retrieved from www.aljazeera.com/news/2017/04/saad-al-hariri-lebanonbig-refugee-camp-170401045951087.html. Online News 1 April 2017. Al Thani, H. (2007). Disability in the Arab Region: Current Situation and Prospects. Retrieved from https://www.dvv-international.de/adult-education-and-development/editions/aed-682007/adult-education-for-persons-with-disabilities/ disability-in-the-arab-region-current-situation-and-prospects/. Al-Mabarrat Association. (n.d.). Preparation of Teachers for Inclusive Education in Lebanon. Retrieved from www.inclusive-education-in-action.org/example-114.html.

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Azzi, C. (2012). The Realities of Aid Targeting Persons with Disabilities (PwDs) in Lebanon. Retrieved from http://daleel-madani.org/story/ realities-aid-targeting-persons-disabilities-pwds-lebanon. Bou Saada, R., & Nasreddine, H. (2016, January 17). Disabled People Deprived from Their Rights in Lebanon: The Inadequate Implementation of a Promising Law. Retrieved from https://www.globalyoungvoices.com/ all-articles/2016/1/16/disabled-people-deprived-from-their-rights-inlebanon. Central Intelligence Agency. (2017). Lebanon. Retrieved from https://www.cia. gov/library/publications/the=world-factbook/geos/le.html. Cologon, K. (n.d.). Inclusion in Education: Towards Equality for Students with Disability. North Ryde, NSW: Macquarie University. Children with Disability Australia. Croft, A. (2010). Including Disabled Children in Learning: Challenges in Developing Countries (Research Monograph No. 36). University of Sussex, UK: Consortium for Research on Educational Access, Transitions and Equity. Doecke, P. (2016). Contemporary Special Education. In T. Barkatsas & A. Bertram (Eds.), Global Learning in the 21st Century (pp. 185–209). Rotterdam: Sense Publishers. Haigazian University. (n.d.). Lifelong Learning, In-service Teacher Training. Retrieved from www.haigazian.edu.lb/LIFELONGLEARNINGINSERVICETEACHERTRAINING/Pages/Courses.aspx. Halder, S. (2016, January). Challenges and Needs of Differently Abled: A Developing Country Perspective. Inter-University presentation. University of Calcutta, to RMIT University, Melbourne, Australia. Unpublished paper. Hyde, M., Carpenter, L., & Conway, R. (2014). Diversity, Inclusion & Engagement (2nd ed.). South Melbourne: Oxford University Press. Lakkis, S., Nash, G., El-Sibai, N., & Thomas, E. (2015). Lebanon: Disability and Access to Information (Country Report, Article 19). London: Free Word Centre. Lebanese Center for Special Education. (n.d.). Lebanese Center for Special Education. Retrieved from www.cles.org. Lebanese Council of Ministers. (2012). The Document of the Youth Policy in Lebanon. Retrieved from www.youthpolicy.org/national/Lebanon_2012_ National_Youth_Policy.pdf. Sarwate Chamsine. (2013). The Integration of Physically Handicapped Students in Normal Schools. Master’s thesis, Jinan University, Guangzhou, China.

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UNESCO—Beirut Office. (2013). Social Inclusion of Young Persons with Disabilities in Lebanon: Where Do We Stand and What Should Be Done to Promote Their Rights? Author. UNESCO. (1994). The Salamanca Statement and Framework for Action on Special Needs Education. Adopted by the World Conference on Special Needs Education: Access and Quality, Salamanca, Spain. UNESCO. (2014). Disabilities and Education: Education for All Global Monitoring Report. Retrieved from www.efareport.unesco.org. UNICEF. (2013). The State of the World’s Children: Children with Disabilities. Retrieved from http://www.unicef.org/sowc2013/. United Nations. (1948). United Nations General Assembly Resolution 217A. Retrieved from www.un.org/en/universal-declaration-human-rights. United Nations. (1982). World Programme of Action Concerning Disabled Persons. WPACDPO.pdf. Retrieved from www.un.org/documents/ga/ res/37/a37r052.htm. Wagner, J. (2017). Linguistic Semantics: Language Reflects Ways of Living and Thinking. Retrieved from ielanguages.com.blog. World Health Organization. (2011). World Report on Disability. Geneva: Author.

28 Empowerment of Students with Disabilities in University Setting Krisztina Kovács

Equal Opportunities “The ideas and concepts of equality and full participation for people with disabilities have been developed very far on paper but not in practice. In all the countries, in all types of living conditions, the consequences of disability interfere in the lives of persons with disability to a degree which is not at all acceptable. Many of the existing obstacles and limitations occur in areas of fundamental importance to our situation as citizens of our societies. If a person in a wheelchair wants to attend a public meeting, be it social, cultural, or political, and if they cannot get into the meeting room because the building is not accessible, his rights as a citizen have been violated. A blind person, interested in a public debate, who has no access to a daily paper in which the discussion takes place, is in a similar situation. When a person is excluded from employment because of the fact that he has a disability, he is being K. Kovács (*)  Eötvös Loránd University, Budapest, Hungary e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_28

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discriminated against as a human being. If a general education system is developed in a developing country, and children with disability are excluded, their rights are being violated” (Lindquist, 1986, in Könczei 1998). These thoughts from Bengt Lindquist, United Nations special rapporteur on disability, blind individual himself, formed part of his speech on equal opportunities, and were quoted by György Könczei. The concept of equal opportunities for individuals with disabilities forms part of the broader notion of equality of opportunities, which, neglecting segregation, promotes equity and equality for all in civilized societies. The equality of opportunities means an opportunity for all for equal social participation.

Framework for Interpretation of Disability Several models have been elaborated to explain and understand disability. The medical and the social models of disability are two frameworks (among others) that provide contrasting ways of thinking about disability. The latest framework is the human rights perspective of disability. According to the medical model, disability is an individual problem, the person’s characteristic feature, caused by an illness. Consequently, the person needs medical care, aiming at abolishing or easing the disability. This model of 1980 received heavy criticism, though, by describing disability as a social disadvantage, it also focused on the social representation of disability. The following example explains the model: if an eye disease leads to a severe impairment, the person has a disability, being unable to read the newspaper or to get from one place to another without assistance. This condition limits the person’s social participation to the extent that he or she must finally be considered impaired. The social model of disability, instead of the individual level, examines disability from social, economic, educational, etc. perspectives, and underlines the responsibility of the society in the creation of the state of disability. From this perspective though physical, sensory, intellectual, or mental illnesses may have functional effects, they do not result in impairment if the society seeks to abolish disabling factors. In practise, according to the social model of disability, a person may have

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some degree of vision loss, which does not inherently mean he or she is impaired or disabled, because if an audio version of the newspaper was available or a personal assistant was at the person’s disposal, he would not experience limited social participation. The human rights model of disability, which is based on the social model, focuses on the human rights all individuals are equally “born with.” It acknowledges inherent rights of persons with disabilities; it accepts and respects disability as a natural form of human diversity, investigates prejudices and attitudes linked to disability, and urges the elimination of all other barriers, which hinder full and effective social participation of individuals with disabilities on an equal basis with others. It assumes that the society and governments are responsible for guaranteeing political, judicial, social and built environments for people with disabilities, which promote their full inclusion and social participation. The human rights approach construes the marginalization of people with disability and the role of society to eliminate this marginalization. As Quinn and Degener (2002) state, “the human rights perspective means viewing people with disabilities as subjects and not as objects. It entails moving away from viewing people with disabilities as problems toward viewing them as rights holders. Importantly, it means locating any problems outside the person and especially in the manner by which various economic and social processes accommodate the difference of disability or not as the case may be. The debate about disability rights is therefore connected to a larger debate about the place of difference in society” (p. 1). This perspective is applied by the United Nations Convention on the Rights of People with Disabilities (CRPD), which was ratified by Hungary in Law XCII of 2007. Principles: 1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons 2. Non-discrimination 3. Full and effective participation and inclusion in society 4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity

584     K. Kovács

5. Equality of opportunity 6. Accessibility 7. Equality between men and women 8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities (CRPD, Article 3, General Principles).

Students with Disability in Higher Education—A Historical Background Postsecondary education for youths with disabilities does not only serve for the satisfaction of personal interests, but in many cases— due to physical limitations—the only way to increasing employment opportunities. The history goes back to the United States in 1864 with the first systemic provision of Abraham Lincoln who enacted a special college department in the Columbia Institution of the Deaf. By the year 1866, the college unit had already 25 deaf students. This first college of the deaf eventually became Gallaudet University (Madaus 2011). Beside this segregated, special college, there were some sporadic cases, some extraordinary students with disability studying at different colleges and universities of the United States in the turn of the twentieth century. One of the most reputed students was Helen Keller (1880– 1968), who was the student of Radcliffe College from 1900 to 1904 and despite of being deaf-blind she graduated with cum laude (Kleege 2006). Another remarkable person was Randolph Bourne (1886–1918), progressive writer and essayist with severe spinal deformity, admitted to Columbia University in 1909 (Finger 2006). The most famous congenitally blind physician, Jacob Bolotin (1888–1924), enrolled in the Medical Faculty of Valparaiso University in 1908, later worked as pulmonology and cardiology specialist (Perlman 2008). Students with special needs showed up in the universities in a bigger amount after the Second World War thanks to the enactment of the Serviceman’s Readjustment Act in 1944. This act, besides other objectives, aimed to improve the educational opportunities of those soldiers

28  Empowerment of Students …     585

who left the army. As a result, there were more than 2 million veterans enrolled in different universities of the United States by the beginning of the 50s and added up to 50% of all American college students. An excessive growth in the volume of veterans with disability in postsecondary education had followed as a result. According to a report by the American Council on Education (ACE) this was the first time in the US higher education history when veterans with disability emerged en masse. These students needed special treatment and services which had not been so common those days. These services should include hiring sighted guides, notetakers, and building ramps (Strom 1950, p. 38). This early period was characterized by frequent negative discrimination and refusal mainly against students with profound impairments. Those colleges and universities were more open and preferred by the applicants which had a veteran hospital or rehabilitation center nearby (Madaus 2011). The case of Edward Verne Roberts (known as Ed Roberts) is an impressive testimony of this phenomenon. Ed Roberts had to fight for getting into Berkley University in 1962 and receiving appropriate service (Leon 2006). He pioneered the disability-rights movement on universities and became the father of the independent living movements. A new federal legislation, the Rehabilitation Act (1973), especially Section 504 had a great impact on the extended civil rights to people with disabilities. This was the first national civil rights legislation that provided equal access for students with disabilities to higher education institutions receiving federal financial assistance (https://www.ada.gov/cguide.htm). The application procedure of Section 504 in higher education institutes took more than a decade. The controversial situation is described by Stilwell et al. (1983) in their study. By the beginning of the 80s, the majority of universities in Kentucky State did not exclude students because of disability but half of them did not provide alternative ways of entrance examinations. The Americans with Disabilities Act (ADA) on Higher Education of 1990 impacts the whole structure of higher education, including activities, programs, and employment. In regards to academics, the ADA 1990 required higher education institutions to provide reasonable accommodations for students. This includes extracurricular activities. These accommodations can be in the form of academic adjustments

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or modifications such as extended time for test taking or completing coursework; substitution of specific courses to meet degree requirements; modification of test taking or performance evaluations so as not to discriminate against a person’s sensory, speaking or motor impairments, unless that is what is being tested. Accommodations can also take the shape of auxiliary aids and services such as qualified sign language interpreters, notetakers, readers, braille, large print, and electronic formats of print materials, and adaptive equipment. Today, ADA and the Section 504 together provides equal access to students with disability in higher education. In Hungary, Yvonne Csányi (1999) wrote the first publication of the inclusion of students with disability in higher education. The author gave a state of the art report of the Hungarian situation comparing it with Western European practise. She finds the Hungarian situation quite immature in many aspects: the ratio of students with disability; the lack of legislation and the services. The first state regulation dealing with equal opportunities in higher education was the 29/2002. (V. 17.) statutory rule by the Hungarian Ministry of Education. One major improvement was the establishment of the disability coordinator system. The regulation’s effect on the universities and colleges was taken slowly. Three years after the regulation, Héra et al. (2005) found big gaps between the rights of students with and without disabilities in their study. The number of students with disability in the Hungarian higher education institutes was underrepresented (between 0.2 and 0.4%); students did not know their rights; universities were not barrier-free; there was no equal access; disability coordinators had no competencies in disability studies or special education. The biggest disadvantage was lack of information from both ­partners (students and teachers).

Present Legislation in Hungary The first act dealing specifically with people with disabilities is the Equal Opportunity for Persons with Disability Act (1998). This act has been modified since 1998 several times but the paragraphs on higher

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education have not changed. This act declares the equality of rights in all areas of social life and education of persons coming within the scope of the act and to ban negative discrimination against them and, where it is absolutely necessary, to apply positive discrimination. It is the right of all students with disabilities to study in higher education institutes according to their abilities and conditions. Hungary has signed the UN Convention on the Rights of Persons with Disabilities (2006) in 2007. The new Constitution/Fundamental Law of Hungary (2011) guarantees the fundamental rights to everyone without discrimination and in particular without discrimination on grounds of race, color, sex, disability, language, religion, political or other opinion, national or social origin, property, birth or any other status. The new Higher Education act (2011) and its Enacting Clause (2015) give a framework for any university to elaborate its own regulations concerning the inclusion of students with disabilities. Basic regulations: • Providing equal opportunities and equal access • The lecturer/teacher has to take into consideration the students’ special needs • There have to be institutional and faculty disability coordinators pointed out • The student has right to receive provision according to his/her condition and disability • Any student can get state-financed higher education on all level maximum of 12 semesters—students with disability can get 4 extra semesters • Students with disability have to be provided education and evaluation/examination procedure that is suitable for his/her special needs. If it is justified, he/she can be released from studying some subjects or parts of a subject. This release can only be provided if it is based on the special needs of the students and it cannot lead to the exemption of those subjects which are basic requirements for the given field of study/profession • Practical subjects can be fulfilled in different ways or can be substituted by theoretical subjects

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• Oral exams can be fulfilled written and vice versa • Release from the obligatory state language examination (part or level) • Using assistive technology and special equipment during the study and exams • More preparation time during the exams • Asking for personal assistants and notetakers. In the Enactment of Higher Education Enrolment (2016) applicants with disabilities can get 40 extra credits because of their special needs if these are proven. Higher education institutes get 150,000,-HUF (around 500 Euro) after each registered student with disability yearly. Registration: According to the Higher Education Act and its Enacting Clause those students can be registered with disability who have: visual impairment, hearing impairment, physical disability, speech impairment, learning disability (LD) (dyslexia, dysgraphia, dyscalculia, dysorthographia, ADHD, behavior regulation disorder), Autism spectrum disorder, multiple impairment. From the above list it can be clear that students with chronical illness are not meant being a person with disability.

Representation of Students with Disabilities in Higher Education The number of students with disabilities in higher education has significantly increased during the last years, in eight years it multiplied ten times (Fig. 28.1). In 2016, the number of students with disabilities in higher education was 2437, which is 0.5% of the total student population of 412,095. Both the number and proportion of students with disabilities has doubled in higher education in the last decade, while the total student population has been gradually declining since 2006. Where is this proportion of 0.5% on an international scale? Table 28.1 shows Data from overseas and from Europe. Statistics on students with disabilities show a heterogeneous population. The number of students with disabilities is the highest in the

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Fig. 28.1  The number of students with disabilities in the Hungarian higher education between 2002 and 2016 (Source unpublished presentation of the Education Authority at Coordinators’ Conference in 2016) Table 28.1  The proportion of students with disabilities in some countries Country

Proportion of students with disabilities (%)

Year

Resource

United States of America Australia Republic of South Africa United Kingdom

11

2009

4 0.5

2010 2009

8

2006/2007

France Ireland

0.32 3.3

1999 2009/2010

Germany Switzerland

3 0.6

2000 2001

National Centre for Education Statistics (2009) Ryan J. (2011) Mayat N. and Amosun S. L. (2011) DIUS: Disabled Students and Higher Education (2009) Ebershold and Evans (2003a) Survey on the Participation Rates of Students with Disabilities in Higher Education for the Academic Year 2009/2010 Falkendorff (2003) Hollenweger (2003)

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United States, then in the United Kingdom, while, surprisingly, it is lowest in France. Though data were gathered with ten years difference, the more than thirty times discrepancy is still astonishing. Studies from the nineties give accounts on 9–10% participation rates in the United States (Henderson 1999). Comparing the Hungarian proportion of 0.5% to international figures of the chart (and considering the different years of data gathering), Hungary is among the last countries, together with France, Switzerland, and the Republic of South Africa, while Germany, Ireland, and Australia with their participation rates of 3–4% perform more poorly than the leading United States and the United Kingdom.

Types of Disability Great changes can be seen in the participation rates of students with different sorts of disabilities: in the 80s, most students with disabilities in the United States had varying degrees of vision loss or physical d ­ isability (Henderson 1999). By the year 2010, 80% of students had learning ­disorders (Cawthon and Cole 2010). In Switzerland, Hollenweger (2003) found that 45% of students had sensory (visual or hearing) disabilities, 41% some sort of physical disability, 9% were diagnosed with learning disorders, 4.5% were multiple disabled and 0.5% were of unknown origin. Disabilities of psychical origin and chronic diseases were not surveyed. In Germany, 70% of students with disabilities had sensory or physical disabilities or speech disorder, 30% had dyslexia. Chronic diseases were registered separately, and were found with an occurrence of 13% of the total student population (Falkendorff 2003). The DIUS research of 2009 in the UK found that 50% of students with disabilities had dyslexia, 10% had some chronic disease, 10% fell in the “other disease” category, 8% had multiple disabilities, 5% had psychical or psychiatric diseases, 4% hearing impairment, 4% physical disability, 3% visual impairment and 1% had autism spectrum disorder (DIUS Research Report 2009, p. 21).

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Fig. 28.2  The number of students with disabilities, classified according to types of disability, at Eötvös Loránd University (ELTE) in the academic year of 2017/2018 (Source Data gathered by the disability coordinator of ELTE)

Since in Hungary no national data is available regarding the types of disabilities of students, figures of Eötvös Loránd University (ELTE) of Sciences are introduced below: the number of registered students with disabilities is constantly increasing. According to data provided by the electronic learning system of ELTE, there were 128 registered students with special needs in the academic year of 2007/2008, while ten years later, in 2017/2018 there were 362 students with disabilities, which is an increase of almost triple (Fig. 28.2). Almost 40% of students have LD, which is the most frequent type of disability at ELTE. The second biggest population, with 17% of the whole population of students with disabilities, is that of students with visual impairment, 14% have physical disability, and 10% have Asperger syndrome or other types of the Autism Spectrum Disorder.

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Different Definitions In Hungarian legislation, differences appear in the names and definitions of the different kinds of disabilities. In public education, the terms “students with special educational needs,” students with visual or hearing impairment, etc., are used, while regulations on the classification of disability are worded as “visually” or “hearing impaired.” In this study these differences are not analyzed from multiple perspectives, attention is focused on highlighting the different understanding of disability in the higher education system of different countries. In Hungary according to the law CCIV. Of 2011, §108, article 6 those students are considered disabled, who have a physical, sensory disability or speech disorder, multiple disabilities, autism spectrum disorder, or other specific disorders of psychological development (severe learning, concentration deficit or behavioral disorder). §18 of the government decree 79/2006 (IV. 5.), which had formed part of the former law of 2005 on higher education, classifies students with disabilities as follows: physically, hearing (deaf or hard of hearing) or visually (blind or low-vision) impaired, speech or other impediment (severe speech impairment, dysgraphia, dyslexia, dyscalculia), or autism. Categories used in the government decree and in the law cited above refer to different categories of disability; this is why disorders of psychological development are not mentioned. Since disabilities are not categorized in a straightforward manner, they are often defined and diagnosed partly by specialized rehabilitation committees (if the disability was diagnosed during the years of schooling), partly by the National Rehabilitation and Social Office. The most significant fault of Hungarian higher education is the narrow definition of disability, though in 2007 Hungary was first to ratify the United Nations CRPD. In the definition of the Convention: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (https://www.un.org/development/ desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/ article-1-purpose.html).

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However, psychical disorders are still not included in the terminology of disability used in Hungarian higher education, which means that a numerous group of students who are regarded as individuals with disabilities by the CRPD, are not legible of specialized support in Hungarian higher education. Students with long-term chronic diseases are in the same situation: higher education institutions are not obliged to provide them special support.

Services for Students with Disabilities Services for students with disabilities may range from simple counseling to the more sophisticated real-time captioning. This service helps students who are deaf or hard of hearing follow lectures: the lecture is typed by a trained captioner and students can read the typed text from a large display screen or from their laptop’s screen almost instantaneously. In most European countries (e.g. United Kingdom, Benelux States, Spain, Germany) and in the US students with disabilities are supported by a team of experts, consisting of special needs teachers, psychologists, teachers, and social workers. These services can be found on the websites of universities under “center for students with disabilities” or “services.” University disability centers are headed by a university disability coordinator and accomplish a wide range of different tasks: recruiting and registering students with disabilities, mapping and fulfilling students’ individual needs, arranging and providing support (Falkendorff 2003). In some cases the university disability center provides tangible, direct support to students with disabilities: e.g. digitalize study material for blind students, arrange learning methodology courses, and additional lessons for students with learning disorder (Janiga and Costenbader 2002). In other cases support is arranged using internal university sources, e.g. recruit personal assistants and students who take notes, order services for students from outside the university, e.g. sign language interpreters for deaf students, orientation and mobility training for blind students. Disability centers are, in a broader sense, responsible for representing disability-related policies of the institutes of higher education, take an active part in communication (e.g. with parents,

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secondary-schools, disability-related organizations, etc.), keep constant contact with disability-related institutes and organizations and provide education on disability to teachers. The type and range of services provided for students with disabilities depends partly on the national social support systems, partly on the financing of higher education. In countries, where students are granted disabled students’ allowances, institutions of higher education do not need to cover the cost of special equipment supporting learning, because students may purchase all equipment that best fits their individual needs. This is the case, for example, in the Netherlands, in the UK, and in Germany. This sort of support is called “the rucksack theory,” meaning that students when changing schools or advancing to the next level of education, take along their specialist equipment. The situation is really different in Hungary: no disability center is available in the majority of the institutes of higher education. The University of Sciences of Pécs and the University of Debrecen run disability support services, and at the University of Szeged students with disabilities are supported by the Student Counselling Centre. The newest and most comprehensive Disability Center can be found at ELTE, located in Budapest and partly in Szombathely.

Supporting Students with Disabilities at ELTE University ELTE University has been providing service for students with disabilities since 2004. Disability coordinators were appointed in all faculties without training, without special knowledge on disability (exception: Faculty of Special Education), without networking in the first few years. In 2010, the Ministry of Education has asked ELTE to nominate a disability coordinator for the whole university with special education diploma. The faculty and the university level coordinators formulated a team who had been working out the registration procedure on a common ground, had established a special equipment rent service, etc. However, the services of the different faculties were still not equal in quantity and quality even if the number of students with disabilities

28  Empowerment of Students …     595

had a big growth year by year. The right time for change came in 2015 when—by the initiative of the Chancellor—the Disability Centre was established under the University Student Service. The Disability Centre has 11 faculty coordinators and 6 professionals as members: leader and specialist in visual impairment, she is the university disability coordinator as well; information accessibility specialist; special teacher and rehabilitation instructor of students with visual impairment; special teacher of students with autism spectrum disorder; special teacher of students with learning disabilities, speech impairment, and hearing impairment; social caregiver. The faculty disability coordinators are employed by their own faculties, some of them are teachers, and some of them are other staff and work as disability coordinators part-time, as an extra work for extra salary.

Services of ELTE Disability Centre The Disability Centre—through its professionals—provides special educational support for each student with disability who asks for it. The service can be individual or in a form of group activity. Besides helping students, the Centre is responsible for forming the inclusive policy of the University. It also provides information and support to the teachers and other staff. Individual services: • Adaptation of the learning material—digitalization; file converting; tactile graphics; verbal description of the pictures and tables; database on the adapted material, sent to the Central Library • Orientation and mobility training: teaching routes from home or student hostel to the Faculty; inside and outside the buildings • Individual training in the use of NEPTUN (electric learning system) • Training and providing paid personal assistants and notetakers who are students on the basis of a contract • ICT counseling and training • Teaching the use of libraries • Training in learning techniques

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• Providing speech therapy • Counseling on activities of daily living • Helping students with social-communication problems • Hiring accessible minibus for transportation • Providing social caregiver for supporting everyday activities • Information providing to the lecturer staff, to parents, to the students • Sensibility trainings • Career counseling • Accessibility counseling • Counseling and support for Erasmus students with disability—outgoing and incoming • Having a closed e-mail list for the students with disabilities. Group activities: • • • • • • • • • • •

Asperger group English speaking group Career management course for credits Self-awareness course through drama and movement Learning techniques course Goalball course—inclusive sport course for credits Paraswimming for credits “Salsa” dance course for credits Film club Game club Literary club.

Services provided by the faculty disability coordinators: • • • • • •

Registering students with disability Assessment of special needs Writing the acknowledgment of special needs Renting special equipment Negotiating with teachers of the faculty Providing reasonable accommodations concerning the study and organizing them for the exams.

28  Empowerment of Students …     597

National and International Programs: The Disability Centre is c­ ommitted to spreading knowledge of and to changing attitudes toward disability affairs. Its goal is to give a platform to students with disability in all of the programs they organize for the university students, academic and administrative staff, to the public or to the community of people with disability. They aim to reach full participation of the students with special needs with the motto: “Nothing about us without us!” To achieve its objectives, they regularly organize sensibility programs; disability awareness campaigns; open days; sports events and workshops and give presentations to different national and international conferences. Staff of the Centre also give lectures in the training program for disability coordinators. ELTE University is the only one that has a barrier-free route planner designed by the Route4u Hungary (https:// route4u.org/maps/). Applications are also available on iOS and Android.

Mobility of Students with Disabilities Study mobility of students with disabilities requires special arrangements and the close cooperation of different experts. Numbers of students with disabilities participating in study mobility are provided exclusively by Erasmus + reports (http://www.esn.org/content/exchangeability). According to the data, in the academic year of 2009–2010, altogether 230 students with special needs took part in an Erasmus program, which is 0.14% of the whole student population. Various organizations, such as Erasmus Student Network (ESN), European Disability Forum (EDF), or Network of Universities from the Capitals of Europe (UNICA) have started projects aiming at increasing the number of students with disabilities participating in study mobility. One of the main goals of the ExchangeAbility Project was to map difficulties students with disabilities face when studying abroad. Students from five European countries took part in short study visits abroad to get experience, they gave accounts on the following difficulties: 1. Little information is available on disability policies of the host country. It means, no information is provided on the legislation on disability

598     K. Kovács

and disability allowances; on special services and on the budget needed if the student is not eligible for support from the host country. 2. University homepages do not give information in English, in most cases only in the official language of the host country, on provisions for students with disabilities. It is especially problematic because the student may wish to take part in courses held in English, but can get no information in English concerning the support at these lectures. 3. Fear from the unknown. For many individuals with a physical disability or vision loss it is challenging to travel to the countryside even in their home country, so it is easy to imagine that traveling abroad is fearful. 4. Language difficulties. For most students with a hearing impairment this is the hardest part of traveling. Since most of them do not speak foreign languages, they need sign language interpreters who are proficient users of both the language of the host country and sign language. As regards students with a learning disorder (dyslexia, dysgraphia), in secondary schools many of them are exempted of studying foreign languages and they are not obliged to take a language exam either. Consequently, members of the largest student group with disabilities cannot study abroad. 5. Low self-esteem, little self-confidence. Most students with disabilities live with their parents and have no experience living separately. Overprotective and shielding parents may also “teach” their children with disabilities that they are less capable than their non-disabled fellows. 6. Accessibility around the city and transportation are also crucial for students with physical and, in some cases, visual impairment. 7. Access to university buildings. At some campuses only part of the buildings are accessible, so a barrier-free environment is not guaranteed. In most countries, adapted study materials are not translated to English, which is a barrier for students with visual impairment and learning disorder. 8. Teachers’ attitude is in most cases positive, but some negative or genuine exceptions may discourage some students. 9. Access to student life. Most programs organized by students are not accessible. Finding their place in the community is more challenging for students with disabilities than for their non-disabled fellows. The greatest barrier is any disorder in communication (in the case of

28  Empowerment of Students …     599

blind, deaf students, students with severe physical disabilities, speech disorder, or autism spectrum disorder). A costless key to supporting the mobility of students with disabilities lies in the cooperation of the university’s disability coordinator and that of the university’s international coordinator. The international coordinator is obviously not competent in issues of equal opportunities and accessibility, therefore their consultation, as well as the cooperation of these professionals of both the sending and the host universities, is indispensable for students with disabilities. Students with disabilities may participate successfully in education abroad if exact and detailed information (on housing, accessible transportation, access to the campus, access to personal assistants, notetakers, captioning, sign language interpreters, digitalized study material, accessible websites and electronic student registries, access to student services, to the libraries, special equipment to be borrowed, supportive attitude of the ESN, access to mentoring and volunteers, etc.) are at their disposal. During a personal consultation the student’s special needs need to be mapped, about which the coordinator of the host university is informed. A cornerstone of the mobility of students with disabilities is the university’s attitude to disability. It is advisable to arrange disability awareness raising programs for university staff and students, to which students with disabilities are also invited, as personal contact is the best opportunity for forming a positive attitude. Information days on mobility should give space for inviting students with disabilities who have taken part in studies abroad, to share their experience with fellow students. It is recommended to contact local specialized organizations (federations or rehabilitation institutes for persons with visual, physical or hearing impairment, autism spectrum disorder, mental or learning disorders) for support.

References “A Guide to Disability Rights Laws”. Information and Technical Assistance on the Americans with Disabilities Act. United States Department of Justice Civil Rights Division. (2009, July). https://www.ada.gov/cguide.htm.

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Cawthon, S. W., & Cole, E. (2010). Postsecondary Students Who Have a Learning Disability: Student Perspectives on Accommodations Access and Obstacles. Journal of Postsecondary Education and Disability, 23(2), 118–141. Convention on the Rights of Persons with Disabilities (CRPD). (2006). https://www.un.org/development/desa/disabilities/convention-on-therights-of-persons-with-disabilities.html, https://www.un.org/development/ desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-1-purpose.html. Csányi, Y. (1999). Fogyatékosok a felsőoktatásban. Magyar Felsőoktatás, 8, 17–19. Department for Innovation, Universities and Skills (DIUS). (2009). Disabled Students and Higher Education (DIUS Research Report) (p. 21). London, UK: DIUS. http://dera.ioe.ac.uk/8889/2/A9R2917.pdf. Ebershold, S., & Evans, P. (2003a). Access to Higher Education: Its Dynamics, Shortcomings and Obstacles. In Disability in Higher Education (p. 16). Paris: OECD. Ebershold, S., & Evans, P. (2003b). Students with Disabilities in the United Kingdom. In Disability in Higher Education (pp. 81–104). Paris: OECD. Falkendorff, K. (2003). Disability and Higher Education in Germany. In Disability in Higher Education (pp. 109–146). Paris: OECD. Finger, A. (2006). Randolph Bourne. In L. A. Gary (Ed.), Encyclopedia of Disability (Vol. 1, p. 199). Thousand Oaks, CA: Sage. Henderson, C. (1999). College Freshmen with Disabilities: A Biennial Statistic Profile—Statistical Year 1998. Washington, DC: American Council on Education, HEATH. Héra, G., Kun, E., & Ligeti, G. (2005). Fogyatékossággal élők a felsőoktatásban. Kutatási beszámoló. Készült: az Oktatási Jogok Biztosának Hivatala megbízásából. Kurt Lewin Alapítvány a toleranciáért, Budapest. Hollenweger, J. (2003). Students with Disabilities in Higher Education in Switzerland. In Disability in Higher Education (pp. 149–166). Paris: OECD. Janiga, S. J., & Costenbader, V. (2002, September–October). The Transition from High School to Postsecondary Education for Students with Learning Disabilities: A Survey of College Service Coordinators. Journal of Learning Disabilities, 35(5), 463–470. Kleege, G. (2006). Helen Keller. In L. A. Gary (Ed.), Encyclopedia of Disability (Vol. 3, p. 1011). Thousand Oaks, CA: Sage. Könczei, G. (1998). Genesis of the Hungarian Anti-discrimination Act. http:// www.independentliving.org/docs1/hr9.html.

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Leon, J. (2006). Ed Roberts. In L. A. Gary (Ed.), Encyclopedia of Disability (Vol. 3, p. 1417). Thousand Oaks, CA: Sage. Madaus, J. (2011). The History of Disability Services in Higher Education. New Directions for Higher Education, 154(Summer), 5–6. Mayat, N., & Amosun, S. L. (2011). Perceptions of Academic Staff Towards Accommodating Students with Disabilities in a Civil Engineering Undergraduate Program in a University in South Africa. Journal of Postsecondary Education and Disability, 24(1), 53–59. National Center for Education Statistics. (2009). Digest of Education Statistics. http://nces.ed.gov/programs/digest/d09/tables/dt09_231.asp. Perlman, R. (2008, January). The Blind Doctor: The Jacob Bolotin Story. Braille Monitor, 51(1). https://nfb.org/images/nfb/publications/bm/bm08/ bm0801/bm080105.htm Quinn, G., & Degener, T. (2002). Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability. Geneva: Office of the High Commission for Human Rights. Rehabilitation Act. (1973). https://www.ada.gov/cguide.htm. Ryan, J. (2011). Access and Participation in Higher Education of Students with Disabilities: Access to What? Australian Educational Researcher, 38(1), 73–93. Stilwell, D. N., Stilwell, W. E., & Perritt, L. C. (1983). Barriers in Higher Education for Persons with Handicaps: A Follow-Up. Journal of College Student Personnel, 24(4), 337–343. Strom, R. J. (1950). The Disabled College Veteran of World War II. Washington, DC: American Council on Education.

29 Facilitating Factors and Barriers in Implementing Inclusive Education in Romania Andrea Hathazi and Adrian Roşan

Introduction Inclusive education represents a right of children with disabilities to access educational and social opportunities, but also a challenge for educational authorities to analyze and implement the most adequate methodologies and strategies that support the specific learning and developmental needs of children with disabilities. The aim is a general outcome of education that refers to active participation, functionality, and level of independence. It is about the most adequate level and type of support, identifying the specific needs of children with disabilities and their families and developing services that are based on competency and multidisciplinary team.

A. Hathazi (*) · A. Roşan  Babeş-Bolyai University, Cluj-Napoca, Romania e-mail: [email protected] A. Roşan e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_29

603

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The major aspects that refer nowadays to the efficiency and effectiveness of inclusive education start with the following questions: • Where are we now regarding inclusive education and its efficiency on long-term after Declaration of Salamanca in 1994? • Does inclusion mean that the specific needs and implications of disabilities should not be approached anymore within the structured and specialized intervention? Should inclusion mean only access to the same educational opportunities? • How can we monitor the efficiency of inclusive education, to be assured that the outcomes of inclusive education are reached and best services are provided? • Is there a need for a common language and use of terminology, definitions, and classifications when referring to inclusive education? • Is there a need to discuss and analyze the implications of cultural, social, and economic characteristics of each country when considered systems that support the implementation of inclusive education? The available statistics, data, and reports developed and issued by international agencies and organizations regarding access to education of children with disabilities state that over one billion people from all over the world live with a disability and 150 million of them are school-age children and most of these children do not benefit from educational opportunities and do not complete even primary education (World Health Organization Report on Disability 2011). Article 24 of the UN Convention of the Rights of People with Disabilities (2006) underlines the need to assure the equal access of the people with disabilities to an inclusive educational system for all the levels and to offer the necessary support in relation to individual needs, such as adaptations in the learning environment, support for communication using Braille or sign language. The Global Report (UNESCO 2013) states that persons with disabilities encounter numerous barriers regarding access to information, education, and employment. The Joint Report of the Council and the Commission on New priorities for European co-operation in education and training (2015, p. 2) states that “education and training have an important role in fostering inclusion and equality, cultivating mutual

29  Facilitating Factors and Barriers in Implementing …     605

respect and embedding fundamental values in an open and democratic society”. According to WHO (2012) inclusive education is meant to allow schools to serve all the children in their community. The report also mentions that the educational needs should be assessed from the perspective of what is best for each individual and the financial and human resources that are available both locally and nationally. This means that careful consideration needs to be given to the existing education system and the competencies of its professionals. However, the most important factor in the assessment should be the individual needs and wishes of children with disabilities and their families. According to WHO (2012) there must be a balance in the lives of the families that have children with disabilities—a balance that involves concepts of independence and dignity, including quality of life issues. Helping families to achieve this balance is a key role for organizations and services that offer support for the family. Social and educational inclusion of children with disabilities is a continuous process involving a great number of factors which support the balance between the educational environment and the abilities of the person following the evolution of the ladder for optimal social integration (Laios 2010). The outcomes of the process of inclusion should include independent life, active participation in the life of the community, opportunities for vocational training and employment (Hathazi 2013). The policies and methodologies relating to inclusive education for children with disabilities in Europe vary widely and are an indication of the diversity of each country’s different circumstances.

Children with Disabilities and Assessment Within Inclusive Education According to the statistics of 2017 presented by the National Authority of People with Disabilities in Romania (ANPD) there is a total of 726,203 people with disabilities in Romania, out of this number 61,889 are children with disabilities.

606     A. Hathazi and A. Roşan

The current situation in the field of special education suggests that the primary concern is to identify the type and severity of the disability and to place the child accordingly. Thus, the special schools and technological high schools include schools for children with intellectual disability, visual impairment, hearing impairment, physical disability, and locomotor disability as well as associated and multiple disabilities. Current eligibility criteria for educational contexts refer mainly to primary disability without consideration of additional disabilities when necessary. Other conditions refer to medical, social, and even family issues that could significantly influence the decision for service eligibility taken by the authorities. If a child has two disabilities, a decision is taken about which category of school provides the best fit and only in a few cases there is an individualized approach, that is supported by directing the child toward the service that responds to his/her needs. The starting point of inclusive education must be the complex psychopedagogical assessment in order to determine the cognitive, emotional, and behavioral particularities in the context of the identified disability. The assessments applied in the educational system should focus on the following purposes: Screening: the assessment of all children and the recognition of those who have developmental delays and/or learning difficulties; Eligibility and diagnosis: identifying the presence of a disability and the services that are available for further assessment or treatment; Developing and implementing the Individual Intervention Plan: offering detailed and relevant information so that the IIP can support the education of the child after the educational setting (special or inclusive) has been chosen; Planning the educational and rehabilitation steps in the context of special education support system: developing and planning a rehabilitation and educational program which is personalized to the child’s needs; Evaluation: evaluating the student’s progress based on standard criteria and within child measures according to the educational and rehabilitation needs presented in the context of a particular disability (Roşan 2016). Assessment in the context of a certain disability has many components and implies processes and strategies of problem-solving. On one

29  Facilitating Factors and Barriers in Implementing …     607

hand, it is necessary to evaluate the cognitive and behavioral characteristics that are explained by the valid assessment models, and on the other hand, it is necessary to evaluate also the associated implications such as: self-esteem, academic performance, personal relationships, emotional and social skills. We must mention that when we look for an inclusive educational environment for a child with disabilities (neurodevelopmental disorders, intellectual disabilities, speech and language impairments, autistic spectrum disorders, ADHD, learning disabilities, behavioral disorders), assessment must be carried out with accuracy using evidence-based methodologies.

Inclusive Education in Romania and Implications of Facilitating Factors Inclusive education means, in a very practical sense, finding the most efficient support systems for the people with disabilities based on their specific and complex needs, so these systems can contribute to their general development, including communication and language, social and emotional skills, and adaptive behaviors. Countries vary widely in the numbers of children with disabilities who receive education in either mainstream or segregated settings, and no country has a fully inclusive system or has succeeded in developing and implementing systems that support every child’s developmental and educational needs. Educational needs must be assessed from the perspective of what is best for the individual and the available financial and human resources within the country’s cultural, educational, and socio-economical contexts. Inclusive education is easy to explain and even to promote, but its operationalization and application has many difficulties due to the way of the organization of different educational systems, the levels of different expertise in each country, the methodologies of services that sustain inclusive education. On a theoretical level, inclusive education is easy to explain, but the difficulty resides in its operationalization and implementation within different educational systems as well as its functioning within varying social and economic contexts that bring significant qualitative differences. Roşan (2016) argues that in the Romanian context of educational

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inclusion it is necessary to begin with the assessment of the child with disabilities in order to determine their cognitive, emotional, and individual behavioral functioning, as well as their level of adaptive behavior functioning, in order to establish an appropriate level and intensity of the support systems. The author mentions that inclusive education in Romania is not easy to put it into practice, but the success rates are higher when the assessment is made very accurately and the curricular adaptations for the children with disabilities allow development of adaptive behaviors. Regarding special education professionals and their role in the implementation of school integration, one of the targets is to develop physical, cognitive, and emotional abilities so that children with disabilities have the same opportunities as non-disabled children. In this sense, the Romanian system implements educational and rehabilitation programs aimed to support the development of abilities, to create an emotional environment that supports the motivation for learning, to ensure a continuous progress in communication and knowledge, to implement daily activities and to develop adaptive behaviors and positive emotional abilities that are meant to facilitate inclusion (Maier 2016). Research conducted in Romania (Roşan et al. 2013) and Croatia (Dulčić and Bakota 2008) shows that teachers have a positive attitude toward educational integration as a process that allows children with disabilities to socialize and that encourages their whole development. But the teachers have a negative attitude toward the working environment and implementation of inclusion—when the technical requirements for the success of the integration are not met; when the equipment is not adequate, or it is insufficient; when the educational materials needed in class are not adapted and when the professional development is insufficient or delayed (Dulčić 2016). Teachers’ attitude is crucial because they have a key role in implementing educational inclusion, they can ensure the success of it and they have a big influence on the behavior and acceptance of the children with disabilities (Coca 2016). Other aspects of the Romanian educational system, such as the focus on academic achievements and high performances, the rigid curricula and the traditional methods of teaching (Gherguț 2011) become barriers for acceptance of diversity in learning within schools.

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But the positive aspects that can be taken into consideration in facilitating the implementation of inclusive education according to Gherguț (2011) are: • Legislation that defines and supports inclusive education according to existing European and international legislations and reglementations. • Availability of systems for delivering educational and rehabilitation services to children with special education needs, i.e. special education institutions, special classes and units in mainstream schools, individuals included in mainstream schools. • Development of resource centers that offer their expertise in inclusive settings. • Developing programs for teacher training, including in-service training. • Developing partnerships with NGO’s and different agencies in Romania that promote inclusive education. • Improvements of identification and orientation to adequate services of children with special needs.

Inclusive Education and Teacher Training One of the key success factors of inclusion is represented by the competence of teachers and their attitude toward the benefits and outcomes of inclusive education. In a study carried out by Unianu (2012) regarding teachers’ attitudes toward inclusive education, teachers support inclusion of children with disabilities when there is a restructuring of curricula, more help from support teachers, more time for preparing the activities, smaller number of children in one classroom, and development of partnerships. Avramidis and Norwich (2002) distinguish between child-related variables, teacher-related variables, and educational environmental variables when considering factors that influences teachers’ attitude toward inclusive education. In a study realized by Roşan et al. (2013) investigating the opinions of teachers regarding special education, it is observed that teachers state that education in special school is more efficient for children with

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disabilites, though they also recognize the capacity of the educational system to include with a significant percentage children with disabilities in mainstream schools. Though both these statements can be contradictory, it can be explained that at a formal level, the present educational system in Romania has the capacity to include children with disabilities, but lacks the tangible procedures and the adequate support that are felt lacking by teachers. Teachers also identify the lack of an approprtiately adapted curriculum, inadequate teamwork, and lack of support services as being barriers to a successful inclusion. They consider that the educational system in Romania is based on various hierarchies, based on reduced differentiated performance descriptors. Criteria to assess the teachers’ activity is based on academic performances of children, participation in school competitions, both regional and national. The majority of teachers consider that children with disabilities do not achieve even the minimum standards, but there is a need of in depth discussions regarding the dynamics, level and type of impairment, also level of study and type of assessment used. There is also the need for further in-service training and a need for implemeting mentoring programs for teachers who do not have the necessary training, supervision when necessary to offer the needed support, both in information and working skills. In a study by Boyle et al. (2012), the role of educational psychologist is highlighted, so that they provide the teachers the opportunity to understand their training needs, to enable a positive environment within the classroom and school, to become a resource person when facing difficult situations or perceived barriers. The process of inclusion of a child with disabilities usually begins with the everyday access to different experiences at home together with the parents. The role of the family is extremely important, from the screening to the involvement in the early intervention, to the support and protection necessary on different levels of education and all the way to the motivational, independence and social and professional orientation issues (Vrăsmaş et al. 2010). When the child’s environment is not responsive enough he or she can encounter difficulties by not building their abilities necessary for learning and development (Tufar 2016). Facilitating factors for a successful implementation of inclusive education strategies include:

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• Open attitude of school toward diversity • Specialized support staff • Differentiated curriculum • Enhancement of participation • Focusing on adaptive behavior • Focusing on social and emotional abilities • Tangible opportunities • Holistic approach • Partnerships • Evidence-based policy making • Explores wider social issues such as well-being as well as learning outcomes • Developing and implementing systems of support • Implementation of Schalock’s model (Schalock 1990, 1994; Schalock and Verdugo 2002) regarding quality of life • Developing inclusive education systems for all learners requires monitoring strategies and mechanisms that combine in a balanced way • Efficiency in education by focusing on the improvement of the cost– benefit relationships within systems • Effectiveness in education by aiming at better educational outcomes for learners as well as other acting partners in the system • Equity in education by ensuring equitable educational opportunities through respect for diversity and the elimination of discrimination. A set of objectives that could be proposed for achievement within the context of inclusive education refers to: • Complex evaluation of the individual situation of each children with special education needs. • Analysis of personal data, cause of disability, evolution, dynamics, and level of support. • Assessment of the child’s development, both strengths and difficulties. • Identification of the level of involvement of families, attitude of family toward the child’s disability, expectances for child’s development.

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• Raising awareness within public opinion, but also local authorities referring to the resources of children with special needs. • Development of competencies for teamwork, cooperation, and networking. • Development of self-awareness, identity, and belonging. Parents should have a continuous involvement in the educational activities carried out at school. The relationship between parents and teachers is very important to the training and development of the child with disabilities. A good relationship between family and school is crucial and the family should assume the following tasks (Ciobanu Grasu 2012): • Information—the family has and should share with teachers the key information on the child with disabilities. • Assuring an on-going education—family being the first factor of influence on the social and professional guidance for the child with disabilities. • Contributing to the development of educational services. Families should have the necessary training and knowledge to positively influence the development of their own children with disabilities. When this is not possible they should benefit from counseling sessions where they can get the support needed to have a correct attitude toward their own children, to acknowledge their problems and to develop those necessary abilities in all the areas that are concerned with their interaction with the children with disabilities.

Inclusive Education and the Concept of Cultural Competence In relation to the partnership with families and their participation in the process of inclusion, there is a concept which is more and more encountered and approached within the field of disabilities and that is the issue of cultural competence of institutions and staff when relating

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to children with disabilities and their families. The main implications of presenting cultural competence refer to: • Understanding your own culture and biases and how differences between your own values and someone else’s may interfere with intervention effectiveness. • Understanding the range of ways in which families may differ from your own culture, especially in practices of raising a child, attitudes toward disability, personal views of education and intervention. • Developing supportive ways of interacting and communicating with families in support of their cultural values. • Maintain an open mind and open lines of communication while exploring approaches that are acceptable to both families and professionals. • Inclusion of traditions and values of families in educational contexts and systems. Turnbull and Turnbull (1997) consider that for the development of positive partnerships between parents and specialists, three factors are important: a. The ability to appreciate others’ perspectives; b. Mutual trust and respect; c. Willingness to cooperate and to accept partnership in intervention. Cultural competence refers to the understanding of one’s own culture and also differences in values that may interfere with the efficiency of intervention, the understanding of modalities in which families differ regarding cultural values, especially regarding education of children, attitudes toward disability, personal opinion about education and intervention, personal experiences, development of interaction and communication with families, accepting their cultural values, maintaining an open mind, promoting approaches that are accepted by families and professionals, etc. Responsiveness to cultural and linguistic differences that determine identification, assessment, intervention, and management include:

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• Self-evaluation to determine influence on beliefs and prejudices and their potential impact on services • Identification and acceptance of limits in education, intervention, and level of knowledge, focusing on resources to develop cultural competences through continuous education, partnerships with members of the community • Training in cultural competences • Respect for diversity • Inclusion of traditions, values, and beliefs of families • Identifying adequate strategies of intervention and assessment, and also resources that are commonly accepted by families and professionals • Using a culturally adequate communication mode with the families, so that the information is in line with the cultural values of the families. • Developing partnerships with institutions that are close culturally and linguistically to the profile of the family • Assuming responsibilities while delivering services (ASHA 2004).

Inclusive Education and Quality of Life Quality of life is defined by Schalock et al. (2010) as a multidimensional phenomenon consisting of core domains that are determined by personal characteristics and environmental factors. The three broad areas that are referred to are independence, social-participation, and well-being (Schalock and Verdugo 2002). The need to relate inclusive education to quality of life refers directly to the major aims of inclusive education that is to enable people with disabilities and their families to full participation and access to the same opportunities and values of a community. The objectives and indicators that support quality of life are emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion and rights (Schalock and Verdugo 2002). In the following, we will relate the indicators of quality of life within the eight domains and aspects of inclusive education to be approached:

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Emotional well-being refers to: contentment, self-concept, lack of stress. • Opportunities for activities by creating adapted environments • Developed emotional abilities • Experiences with positive outcomes • Increased communication skills • Increased number of people in interactions • Increased independence Interpersonal relations: interactions, relationships, supports. • Interactions between members of multidisciplinary teams with various expertise, creating professional and personal networks • Better understanding of needs that enables professionals to develop and implement adequate educational and rehabilitation support • Increased level of participation Material well-being: financial status, employment status, housing. • Developed competences and increased vocational opportunities for people with disabilities • Developing competences of the educational staff • Increased services for people with disabilities Personal development: education, personal competence, performance. • Improved knowledge and working skills for teachers • Improved curriculum Physical well-being: health and health care, activities of daily living, leisure. • Increased opportunities for leisure time activities • Increased fitness and health due to more and more active life Self-determination: autonomy, personal control, personal goals, choices. • Increased decision-taking regarding free time and choices • Better organizational skills • Pursuing personal interests • Improved educational and vocational abilities

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Social inclusion: community integration and participation, roles, supports. • Functional networking • Increased social inclusion and participation • Access to community activities and life • Cultural values and traditions Rights: legal, human, respect, dignity, equality. • Respecting the rights of people with disabilities • Assuring equal chances to participation • Respecting decisions • Improved legislation and implementation of legislation • Programs based on best-practices • Changing prejudices and stereotypes

Conclusions The process of developing and implementing the inclusion of children with disabilities in educational systems and contexts is hugely complex. It involves tangible and concrete actions within legislation and methodologies, adapted systems to criteria of assessment, adapted and adequate support. It consists in accepting diversity as a key factor for optimizing educational systems through teachers’ competences, peers’ development, developed resources and technology. It is an ongoing and dynamic process, with continuous need for analysis and monitoring, flexibility and imagination, new and diverse resources, and positive attitudes from all involved.

References American Speech-Language-Hearing Association (ASHA). (2004). Cultural Competences. http://www.asha.org/PRPSpecificTopic.aspx?folderid=858993 5230§ion=Key_Issues. Autoritatea Națională pentru Persoanele cu Dizabilități http://anpd.gov.ro/ web/transparenta/statistici/. Avramidis, E., & Norwich, B. (2002). Teachers’ Attitudes Towards Integration/ Inclusion: A Review of the Literature. European Journal of Special Needs Education, 17(2), 129–147.

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Boyle, C., Topping, K., Jindal-Snape, D., & Norwich, B. (2012). The Importance of Peer-Support for Teaching Staff When Including Children with Special Educational Needs. School Psychology International, 33(2), 167–184. Ciobanu Grasu, M. (2012). Provocări și dileme în educarea copiilor cu dizabilități. Calitatea vieții. Revistă de politici sociale, 1, 63–86. Available at http:// www.revistacalitateavietii.ro/2012/CV-1-2012/o4.pdf. Coca, M. (2016). Educația incluzivă a copiilor cu dizabilități auditive și/sau de vorbire prin prisma filosofiei sistemului verbotonal. In A. Roșan, V. Timiș, & G. Hagău (Eds.), Educație și formare în contextul provocărilor lumii contemporane. Cluj-Napoca, Romania: Argonaut & Limes. Dulčić, A. (2016). Community Sensitization and Preparation for Inclusion of Children with Disabilities Considering Their Specific Vulnerabilities. Lecture. Zagreb, Croatia: SUVAG Polyclinic. Dulčić, A., & Bakota, K. (2008). Attitudes of Regular Elementary School Teachers to Integrated Students with Hearing Damage and Students with Language-Language Communication Disorders and Specific Disabilities in Learning. Hrvatska revija za rehabilitacijska istraživanja, 44(2), 31–50. European Comission, Brussels. (2015, August 26). Draft 2015 Joint Report of the Council and the Commission on the Implementation of the Strategic Framework for European Cooperation in Education and Training (ET2020). http://ec.europa.eu/dgs/education_culture/repository/education/ documents/et-2020-draft-joint-report-408-2015_en.pdf. Ghergut, A. (2011). Education of Children with Special Needs in Romania; Attitudes and Experiences. Procedia-Social and Behavioral Sciences, 12, 595–599. Hathazi, A. (2013). Factori facilitatori ai incluziunii şcolare la copiii cu sindrom Down. In A. Roşan (Coord.), Cartea Albă a Psihopedagogiei Speciale, Departamentul de Psihopedagogie Specială. Online Volume. http://psihoped. psiedu.ubbcluj.ro/caPPS/. Laios, I. (2010). Dizabilitate și integrare în România, proiect ANPH. Available at  http://alternativa2003.ro/wp-content/uploads/2010/01/Brosuradizabilitate-si-integrare-in-Romania-proiect-ANPH.pdf. Maier, A. (2016). Aspecte ale educației integrate/incluzive. In A. Roșan, V. Timiș, & G. Hagău (Eds.), Educație și formare în contextul provocărilor lumii contemporane. Cluj-Napoca, Romania: Argonaut & Limes. Roșan, A. (2016). Evaluarea psihopedagogică – Pivot vital al educației incluzive. In A. Roșan, V. Timiș, & G. Hagău (Eds.), Educație și formare în contextul provocărilor lumii contemporane. Cluj-Napoca, Romania: Argonaut & Limes. Roșan, A., et al. (2013). Study on Special and Inclusive Education. In A. Roşan (Coord.) Cartea Albă a Psihopedagogiei Speciale, Departamentul de Psihopedagogie Specială. Online Volume. http://psihoped.psiedu.ubbcluj.ro/caPPS/.

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Schalock, R. L. (1990). Quality of Life: Perspectives and Issues. American Association on Mental Retardation, 1719 Kalorama Rd., NW, Washington, DC, 2009. Schalock, R. L. (1994). Quality of Life, Quality Enhancement, and Quality Assurance: Implications for Program Planning and Evaluation in the Field of Mental Retardation and Developmental Disabilities. Evaluation and Program Planning, 17(2), 121–131. Schalock R. L., & Verdugo M. A. (2002). Handbook on Quality of Life for Human Service Practitioners. Washington, DC: American Association on Mental Retardation. Schalock, R. L., Keith, K. D., Verdugo, M. A., & Gomez, L. E. (2010). Quality of Life Model Development and Use in the Field of Intellectual Disability. In R. Kober (Ed.), Quality of Life: Theory and Implementation (pp. 17–32). New York: Sage. Tufar, I. (2016). Rolul familiei în integrare: Aspecte teoretice și practice. In A. Roșan, V. Timiș, & G. Hagău (Eds.), Educație și formare în contextul provocărilor lumii contemporane. Cluj-Napoca, Romania: Argonaut & Limes. Turnbull, A. P., & Turnbull, H. R. (1997). Families, Professionals, and Exceptionality: A Special Partnership (3rd ed.). Upper Saddle River, NJ: Merrill/Prentice-Hall. UNESCO Global Report, Opening New Avenues for Empowerment; ICTs to Access Information and Knowledge for Persons with Disabilities. (2013). http://unesdoc.unesco.org/images/0021/002197/219767e.pdf. United Nations Department of Economic and Social Affairs Division for Inclusive Social Development, Convention on the Rights of People with Disabilities. (2006). https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Unianu, E. M. (2012). Teachers’ Attitudes Towards Inclusive Education. Procedia-Social and Behavioral Sciences, 33, 900–904. Vrasmaș, T., Baba, L., Botez, C. (2010). Incluziunea școlară a copiilor cu cerințe educative speciale, Vanemonde, București, Romania. World Health Organization. (2011). World Report on Disability. http://www. who.int/disabilities/world_report/2011/report.pdf. World Health Organization, Centre for Health Development, Annual Report 2012. (2013). http://www.who.int/kobe_centre/publications/annual_report2012_ en.pdf?ua=1.

30 Educational Support Teams’ Perspectives on Inclusion of Learners Who Use Augmentative and Alternative Communication in South African Mainstream Schools Juan Bornman and Amy Hackeman

Introduction Education is a basic human right. Seventy years ago, the Universal Declaration of Human Rights already stated that every child, regardless of race or religion, has the right to education (UN 1948). In subsequent years, the Convention on the Rights of the Child (UN 1989) and Convention on the Rights of Persons with Disability (UN 2006) reaffirmed the value of education for children with disability. South Africa’s post-apartheid government followed suit and took a stand on equal education, reiterating each child’s right to basic education and equal access to schools (Republic of South Africa 1994).

J. Bornman (*) · A. Hackeman  Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_30

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Inclusive education emerged as the result of the exclusion and isolation of learners who were considered different by the education system (Engelbrecht et al. 2016). In South Africa, Education White Paper 6 (Department of Education 2001), the inclusion policy document, outlined the government’s policy for a single, undivided education system for all learners (i.e. no special and mainstream schools); using a more flexible and suitable curriculum for the diverse needs and abilities of learners; developing district-based support teams to provide systemic support for all teachers who require it; and strengthening teacher’s skills to cope with diverse classes (Donohue and Bornman 2014, 2015). Although the Department of Education (2001) supports inclusion, it specifies three levels of inclusion: (i) learners who require minimal support are included in mainstream schools; (ii) learners who require moderate support are included in full-service mainstream schools; and (iii) learners who require high-intensive educational support are included in special schools. The current research focuses on the inclusion of learners who use augmentative and alternative communication (AAC) systems and who attend full-service mainstream schools (level 2).

Literature Review AAC provides individuals with significant communication disabilities with a means of interaction, other than spoken language to access the world (Bornman and Rose 2017). AAC involves the utilization of less frequently used modes of communication and could include unaided systems (gestures and signing systems) as well as aided systems (objects, graphic symbol systems and print) which can be displayed on lowtechnology devices (communication boards or books) or on hightechnology devices (speech generating devices). Typically, learners who use an AAC system are considered to require moderate to high levels of educational support. Preapartheid, these learners were often placed in special schools, in accordance with the medical model of disability that focussed on learners’ deficits and not on their educational needs and abilities. The global shift toward the social model of disability advocated inclusive education, as schools are

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seen as potential sites for promoting broader social inclusion (Terzi 2010). Consequently, therapist’s roles also changed from providing direct support to specific learners to rather provide indirect support to all learners. Therapists were also encouraged to pursue educational rather than medical goals with an emphasis on assisting children to perform optimally rather than performing more like their typical developing peers within the classroom environment (Jirikowic et al. 2001). Many countries have struggled to realize the social model and to put inclusive education policies into practice (Donohue and Bornman 2014). Frankel et al. (2010) believe there are three key components to successful inclusion, namely (i) adequate preservice training and continuous professional development; (ii) funding and resources; and (iii) an open and non-judgmental attitude. Successful inclusion of learners with moderate to high support needs requires more than mere placement in a general education classroom (Soto 2009)—changes need to be made in terms of classroom structure and collaborative teaming (Hunt et al. 2002). Collaborative teaming is defined as a group of individuals with diverse expertise who work together to achieve mutually defined goals (Kyarkanaye 2016). Bae et al. (2004) zoned in on the necessity of teamwork and stated that without collaboration, implementation of social and communication supports, and hence inclusion, may not be effective. These support services are multidisciplinary in the sense that they apply to the different areas within the school, as well as to the extended school and community (Donald et al. 2002). The educational support team consists of learning support assistants, special education teachers, general class teachers, speech-language therapists, physiotherapists, and occupational therapists (Wright et al. 2006) as well as community-based rehabilitation workers, psychologists, nurses, doctors, and social workers (Department of Education 2001). A considerable number of studies have focused on the beliefs of educational teams regarding critical issues for the success of inclusive education (Donohue and Bornman 2015; Engelbrecht 2006; Hunt et al. 2002; Ntombela 2011; Soto 2009; Stoner et al. 2010; Swart et al. 2002). However, little information is available on the perspectives and experiences of educational teams with regard to critical issues that are specific to the inclusion of learners with AAC needs which is the focus of the current research.

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The educational support team (which includes parents and professionals) are responsible for designing and facilitating the AAC system to allow the learner access to the curriculum (Stoner et al. 2010). The team must work collectively to integrate an often complex and multifaceted assortment of technologies for learning, mobility, and participation in the classroom for these learners (Soto 2009). As education encompasses reading, writing, listening, and speaking, learners with significant communication disabilities can be expected to have learning difficulties (Grether and Sickman 2008). Learners who use AAC systems have even greater challenges in the classroom, as they might require a longer response time than their peers without disabilities and should the teacher and other learners become impatient, a chaotic classroom is inevitable. Parents should be included in all steps of the assessment, intervention, and management of their child’s educational plan (Bornman and Rose 2017) as they are usually the greatest advocates for AAC and can have a significant influence within the community (Conway 2017). Peer interaction is critical toward facilitating children’s development and learning during the school years. Research suggests that learners’ peer interaction experiences are associated with positive academic, behavioral, emotional and social outcomes (Bukowski et al. 2009). Conversely, the absence of quality peer relationships has been linked to social isolation, depression, delinquency and poor school performance (Wentzel 2009). Classroom participation, whether the activity is formal or informal, is a crucial part of the child’s development (King et al. 2003). Just like their peers, learners who use AAC want to participate in classroom activities, and hence their inclusion may improve their social development. Inclusive education has other benefits too. Functional communication must be practiced daily in the same environments where the AAC user must communicate (Bornman and Rose 2017). Therefore, interaction and participation in class could ultimately lead to more effective and efficient use of the AAC system. Unfortunately, inclusion does not come without its challenges and including learners who use AAC, presents unique challenges to teachers

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and other members of the educational support team (Soto 2009). Learners with limited expressive language skills may be perceived as incompetent communicators and therefore be given limited interaction opportunities (Calculator 2009). They depend on their teachers to ensure equal classroom participation, as teachers are responsible for preplanning participation opportunities in communication and social interaction within the controlled environment of the classroom. Selecting appropriate response modes for learner’s educational tasks and assessments is also challenging (Grether and Sickman 2008). Learners make use of several response modes, and it is the educational support team’s responsibility to select the most effective and efficient response mode for the particular task (e.g. test accommodations). The traditional offering of test accommodations such as extra time or full amanuensis may not be sufficient for learners with moderate to high educational needs (Bornman et al. 2016). A study by Batorowicz et al. (2006) reports that the most frequently mentioned barriers to active participation of individuals with disabilities are physical disability, as well as the high costs and lack of nearby facilities and programs. Further research reports that the child’s place of residence influences their participation levels (Hammal et al. 2004). When children with special needs are able to overcome these barriers to participation, they are able to explore their social, intellectual, emotional communication, and physical potential (King et al. 2003). Such exploration is necessary to render these children functional contributors to their class, home, and community (Batorowicz et al. 2006). Inclusive education is not simply about attaching a small group of learners with disabilities to mainstream schools. Inclusive education plays a larger role as it lays the foundation for the transformation of the education system (Struthers 2005). Mainstream schools that have adopted this inclusive approach are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society, and achieving education for all. Moreover, they provide effective education to the majority of learners and improve the efficiency and ultimately the cost-effectiveness of the entire education system (Bornman and Rose 2017).

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Methodology Aim This research aimed to investigate educational support team’s perspectives and experiences regarding the inclusive participation of learners who use AAC in inclusive mainstream schools. This was done by means of four sub-aims, namely to (i) identify what participants regarded as successful inclusion based on their perceptions and experiences; (ii) identify which skills were perceived as crucial for both the educational team and the learner who uses AAC to ensure effective inclusion; (iii) determine the positive outcomes experienced by the learner as a result of successful inclusion; and (iv) identify potential barriers to successful inclusion for both the educational teams and the learner.

Research Design and Steps Two focus groups were conducted as it allowed us to explore ideas from a number of individuals simultaneously and gain in-depth insights into a limited knowledge area (Johnson et al. 2015; Kothari 2004). First, we recruited potential participants using the Western Cape Education Department (WCED) database of all mainstream and full-service schools in the province (thus excluding special needs and remedial schools). The Western Cape province was selected as it had the highest rates of educational attainment compared to South Africa’s other eight provinces Africa (Statistics SA 2016). In 2013, the then provincial Minister of Education, Donald Grant, stated that the Western Cape was regarded as the best-resourced province in South Africa with regard to special needs and full-service schools (Grant 2013). A total of 1693 mainstream schools were identified of which only 139 offered full-service support to learners with special needs. Of the 139 schools, only 69 fit the selection criteria (i.e. primary schools with English as the medium of tuition); however not all of them had therapists based at the school. Where possible, we spoke directly with the learning support coordinator or therapist at the school, otherwise we relied on an

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e-mail to the school secretary at all 69 schools to enquire if they had any learners who use of AAC at their school. Surprisingly, 91.3% of the responses stated that there were no learners enrolled at that specific school who used AAC, which might suggest that although inclusion is the official policy, schools might not be accommodating learners who use AAC. Three schools agreed to participate but one dropped out as the staff found it impossible to schedule the focus group discussions into their quarterly timetable. Eventually only two schools’ educational support teams were included. The emphasis was specifically on teams in order to capture multiple perspectives (Soto 2009). Next we developed the relevant materials, based on the literature review. This included a biographical questionnaire as well as an informed consent letter, in line with the prescriptions of the Ethics Committee in the Faculty of Humanities at the University of Pretoria. The biographical questionnaire consisted of ten closed-ended questions to obtain descriptive information. Finally, a focus group schedule was developed to ensure valid and reliable data collection. Both the biographical questionnaire and focus group schedule are described in more detail in the material section. Thereafter we conducted a pilot study done in preparation of the main study to evaluate the feasibility, practicality of the focus group schedule and other potential adverse effects of the focus group (Thabane et al. 2010). Pilot studies are valuable in that they can detect p ­ ossible flaws in measurement procedures (e.g. time taken to complete the focus group and potential hidden costs), identify ambiguous questions (e.g. in the focus group schedule) and reveal poor formulation of the wording of questions (e.g. during focus group discussions). Participants met the same selection criteria as for the main study, except that they worked at a special school and not at a mainstream school, in an effort to not lose potential participants for the main study. All five who provided informed consent were female, aged between 29 and 38 years old from the same educational team. Two were speech-language therapists, two occupational therapists and one a psychologist. All had between one and five years’ experience of working with learners who use AAC and had bachelor’s degrees, save for the psychologist who had a master’s degree. The main recommendation from the pilot study was to ensure that the

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venue is located at a quiet spot to reduce noise distraction (e.g. not close to the playground) or else to conduct the focus group after school hours to prevent noise interference. An icebreaker game was included in the pilot study to create rapport in the group. However, participants indicated that this was unnecessary as they worked together. It was therefore decided to only include the icebreaker in the main study if the team members did not know one another. In developing the focus group schedule, we removed all medical and/or rehabilitation jargon from the schedule prior to the pilot study. Participants were asked if they understood the questions and whether any questions needed rephrasing. They found all questions clear, concise and easily understandable. Finally, the pilot study also aimed to pretest which Recording App is best suited, it was determined the iPad app was ­superior with regard to clarity of voice, ease of playback and length of battery life, and therefore be used in the main study. After implementing the pilot study recommendations, the main study was conducted on the schools’ premises. The second author met with the head therapist of the respective team on the prearranged date and time. After being shown the room where data collection was to take place, we set up the room by placing chairs around a table and displaying the consent forms and pens on the table. The audio-recorder was left in the center of the table in a non-interfering position. Once the room had been set up, participants were invited inside. Participants were welcomed informally, after which the second author followed the focus group schedule (Kothari 2004). Participants were given sufficient time to complete both the consent form and biographical questionnaire. Once all the participants were ready, the recording device was activated. The focus group discussions lasted between 35 and 50 minutes. Equal participation was achieved by implementing strategies such as smiling; making eye contact; asking individual members whether they had anything further to contribute to the question; and specifically asking individual participants (who contributed less than others) what their experience was. Member checking ensured that our impressions were a true reflection of the participants’ responses (Johnson et al. 2015). Participants were also given an opportunity to add further comments to their earlier statements. Participants were thanked for their time.

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The audio recording was transcribed verbatim by the second author after which two external coders transcribed 20% of the audio recordings. Thematic analysis was then done.

Participants The six participants were equally spread among the two educational teams. All participants were female and their ages ranged from 26 to 54 years with half of the participants being older than 40 years of age (speech-language therapist, educational psychologist, and parent of a learner who uses AAC with a professional qualification in social work) with the other half being younger than 40 years of age (occupational therapist, learning support co-ordinator, and a personal facilitator of a learner who uses AAC). The speech-language therapist and occupational therapist both had a relevant 4-year bachelor’s degree qualification, as did the parent who had a 4-year bachelor’s degree in social work. The psychologist and learning-support coordinator both obtained master’s degrees. The facilitator qualified with a diploma in the field of education. Two participants stated that they had less than a year of experience working with children using AAC, two had between 1 and 9 years’ experience and two had 10 years or more experience. The speech-language therapist had the most AAC experience (15 years). One participant stated that she only had exposure to low technology AAC while two participants only had exposure to high technology AAC. The remaining three participants had exposure to both low and high technology. All six participants were exposed to AAC in the school setting, with the parent also exposed to AAC at home.

Materials After consenting to participate, each participant received a short biographical questionnaire. Table 30.1 includes a description and justification of the items included. Following the completion of the biographical questionnaire, participants participated in a focus group discussion following a focus group

628     J. Bornman and A. Hackeman Table 30.1  Biographical questionnaire description and justification for inclusion Question area

Justification

Sex: Male/Female

Successful inclusion is facilitated by proactively fostering diversity of learners, teachers, and support personnel. Appointments must take diversity into account and strive for a balance in terms of race, sex, and abilities (Conway 2017) Older teachers foster less positive attitudes, are less accepting of inclusion and are uncomfortable with inclusive practises when compared to their younger counterparts (Lampropoulou and Padelliadu 1997; Whiting and Young 1995) Educational support teams include, among others learning support ­assistants, special education teachers, general class teachers, speech-language therapists, physiotherapists, occupational therapists, psychologists, nurses, and parents (Wright et al. 2006) In 2000, 22% of South African teachers were considered unqualified or under-qualified (Chisholm 2005). Hence, it was important to determine if participants are qualified in the role about which they are relaying their perspectives and experiences It is theorized that an expert in inclusion will be more knowledgeable (Struthers 2005) and thus it is important to determine if the participant is a novice or an expert regarding inclusion and AAC To establish that the learner who uses AAC attends a full-service inclusive school as per White Paper 6 (Department of Education 2001)

Age: Date of birth

Profession

Highest qualification:

Year of qualification:

School in which AAC system is used:

(continued)

30  Educational Support Teams’ Perspectives on Inclusion …     629 Table 30.1  (continued) Question area

Justification

Experience with learners who use AAC There is a perception that only more (in years): experienced professionals are able to provide effective indirect support, while recently qualified professionals need to still develop their assessment and intervention expertise in the education system (Law et al. 2002) Experience with this learner who uses Learners who use AAC systems necessiAAC: tate team members to work together to integrate an often complex array of technologies for learning, mobility, and classroom participation (Soto 2009; Soto et al. 2001). Hence, it is necessary to determine how long each member has been part of the team in order to determine if they have a holistic understanding of the learner who uses AAC Type of AAC system the particular The AAC system (low or high technollearner uses: ogy) used by the learner should be aligned with the general education curriculum to ensure optimal classroom participation (Calculator 2009) Environment in which AAC system is Although the general education used classroom is important in relation to effective inclusion (Calculator 2009)—it is important that inclusion is represented in more than a single environment (e.g. school, home, or extra-curricular activities)

script as outlined in Table 30.2. The focus group schedule was followed precisely to ensure trustworthiness of the collected data.

Trustworthiness Trustworthiness was determined through an audit and member checking. The audit required us to document all decisions made, as well as the evidence used to back up these decisions, which was achieved by

630     J. Bornman and A. Hackeman Table 30.2  Focus group interview schedule Area

Script

Welcome

Good afternoon, I would like to start off by introducing myself. My name is … I am a qualified speech-language therapist. Thank you for agreeing to participate in this research. Could everyone please introduce themselves? The purpose of this study is to investigate educational support team members’ perspectives and experiences regarding the inclusive participation of learners who use AAC in inclusive education settings. The aims of the study are to identify what you, as the educational team regard as successful inclusion, which crucial skills are necessary to make inclusion possible and what positive outcomes are the result of successful inclusion of learners who use AAC. We would also like to identify what you perceive as barriers to successful inclusion of learners who use AAC. These questions will be asked one-by-one and I would like to encourage participation of all members who are here today. Your answers will allow us to answer the research question I would like to take this opportunity, to go through the consent form with you. If anything is unclear, I will be happy to clarify. You are welcome to leave at any point during the focus group, should you feel that you would no longer want to participate. Once you have all signed the consent form, we will continue There is little available research, regarding the educational support teams’ perspectives and experiences of critical issues, which are specific to the inclusion of learners with AAC needs. The educational experience includes: reading, writing, listening and speaking. Learners who use an AAC system, will require additional input in the classroom in order to participate in the educational experience. As I explained earlier, this research will identify what the educational team regards as successful inclusion, which crucial skills are necessary to make inclusion possible and what positive outcomes are the result of successful inclusion of learners who use AAC. Finally, I would also like to hear what you perceive as barriers to successful inclusion for these learners Please take note of the following ground rules: Only one participant may talk at a time to ensure clear audio quality (on the voice recorder). You are all encouraged to constructively debate and all opinions are important

Purpose

Consent

Rationale

Rules

(continued)

30  Educational Support Teams’ Perspectives on Inclusion …     631 Table 30.2  (continued) Area

Script

Timeline

We will start our discussion shortly. First, I would like to ask that you complete the biographical questionnaire. This should take five minutes. Once that has been completed, we will begin with an icebreaker, to get to know one another better. We will then spend approximately 15 min on answering each question. There will be four questions posed to the group The icebreaker portion of the focus group interview will only be included if team members do not know each other prior to data collection (as determined by the Pilot Study) We are going to play the “Name Aerobics” game. I want you to stand in a circle facing each other. One participant will then introduce herself by doing an action for each syllable of her name. Everybody will then repeat her name as well as the motions she performed. This will continue until everyone had introduced themselves. Thereafter everybody will be encouraged to recall all other participants’ names What do you regard as successful inclusion of learners who use AAC, based on both your perceptions and experiences? Which crucial skills do you perceive as being necessary for team members and the learner who uses AAC, in order to make inclusion effective? Which positive outcomes did the learner who uses AAC experience as a result of successful inclusion? What do you perceive as barriers to successful inclusion of learners who use AAC for yourself and for the learner? Member checking will occur at the end of each question. The researcher will summarize key points and ask: Do these statements accurately represent the main statements? Is there anything we have missed that you feel should be included? Thank you all for your participation here today. Should you be interested in the result of this research, we will make it available to your school’s principal once the research is completed. Please feel free to help yourself to some refreshments

Ice-breaker (optional)

Research questions

Thank you

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systematically evaluating relevant literature. Member checking occurred at the end of the focus group discussion to ensure that participants were satisfied that we captured the responses accurately (Rolfe 2006). The second author made notes throughout the discussion that were read back to the participants asking them if they agreed that these notes accurately reflected the comments made. None of the participants disagreed with the notes and the information was accepted as true. Credibility was achieved by encouraging the participants to discuss and debate the research questions (Guba and Lincoln 1989). They had the opportunity to dismiss the ideas of others which they found were not credible, and they were also allowed to accept or disagree with the main fact, as noted during member checking.

Data Analysis Thematic analysis, specifically the Framework Model (Gale et al. 2013) was best suited to objectively answer the research question. The Framework Model allows for summarizing data, contrasting multidisciplinary perspectives, recognizing patterns, and generating themes. Three coders, all female speech-language therapists aged between 24 and 26 years old with previous experience in qualitative analysis, participated in six of the Framework Model’s seven steps (Gale et al. 2013): Step 1: Transcription. The second author, also known as Coder 3, transcribed the two complete audio verbatim. Coder 1 did a verbatim transcription of a randomly selected 20% of the audio recording from the first focus group. Inter-rater agreement of 96.2% was found, suggesting that the data transcription was reliable, which increases trustworthiness. The same procedure was repeated with Coder 2 for the second focus group. Inter-rater agreement of 91.7% was achieved between Coder 2 and Coder 3. Discrepancies were due to some unintelligible utterances. Although Coder 2 and 3 initially disagreed on these utterances, they reached consensus following an in-depth discussion of the discrepancies. The process of transcription allowed the three coders to be immersed in the data, in preparation for Step 2.

30  Educational Support Teams’ Perspectives on Inclusion …     633

Step 2: Familiarization. All three coders listened to both the first and second focus group audio recordings in their entirety. This increased familiarization with the data. Step 3: Coding. For the first focus group, Coder 1 and Coder 3 sat together with a copy of the verbatim transcription for coding. Coder 3 read out the transcription line by line. Coder 1 and Coder 3 both interpreted an open-ended and unrestricted inductive code for each line (Gale et al. 2013). Coding allowed for the data to be classified in broad terms. This step was repeated for the second focus group, with the involvement of Coder 2 and Coder 3. Step 4: Analytical framework. Because of coding, an analytical framework was developed by grouping codes together as categories. The categories were not finalized until both focus group’s transcriptions had been coded. All three coders reached consensus on the categories. Step 5: Charting onto the Framework Model. A matrix-like spreadsheet was used to chart the categories derived from both focus groups. Categories were combined and mapped onto the same spreadsheet and interesting participant quotes were added. Step 6: Interpretation. Finally, connections were made between categories, resulting in the emergence of themes that are discussed in the results section.

Result The focus groups generated rich information and the themes that emerged are summarized in Table 30.3, according to the four questions.

Successful Inclusion Three themes captured the perspectives and experiences of the educational support teams regarding the successful inclusion of learners who use AAC. Reciprocal communication: Communication is a two-way process: the sender transmits a message to the receiver who sends back a

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response to acknowledge receipt of the message. Learners who use AAC may have difficulty with one or more of the processes needed for two-way communication. The occupational therapists, educational psychologists, and speech-language therapists all alluded to this and explained that successful inclusion would require the learner who uses AAC to participate in two-way communication. “It’s about if you can understand the child and they understand you ” [OT]. Functional AAC usage: One of the learners initially used South African Sign Language (SASL), followed by a Picture Communication Symbol (PCS) system before moving on to a tablet to facilitate his learning. The other learner primarily used spoken language but also used SASL and visual schedules to communicate. Both educational support teams indicated that the various AAC systems used by the learners improved their social interactions across contexts. “Success is when it happens across contexts, not just in the class—like also on the playground ” [OT]. According to a learning support coordinator, the AAC system was used to address weak areas and assist with the development of learning within an academic context. Increased intrinsic influences: According to an occupational therapist, a learning support coordinator, and a facilitator, successful inclusion was also measured by the learners’ ability to realize their self-worth, shift toward greater independence, develop a sense of enjoyment while learning, and internalize the success. Table 30.3  Themes identified from questions 1–4 Question 1: Successful inclusion

Question 2: Barriers and limitations

Question 3: Educational team skills

Question 4: Positive outcomes

Reciprocal communication Functional AAC usage Increased intrinsic influencers

Inadequate training in AAC Time constraints

Collaboration

Increased active participation Sense of belonging Increased happiness Building friendships

Poor attitudes Lack of resources Policy barriers

Knowledge

30  Educational Support Teams’ Perspectives on Inclusion …     635

Barriers and Limitations During the focus group discussions, five themes emerged, related to barriers and limitations. Inadequate training: An occupational therapist reflected on feeling that she lacked adequate training in AAC, but had to learn—“on the job ”. A speech-language therapist agreed with the occupational therapist, and stated “inexperience wasn’t profession-specific ”. The speech-language therapist felt that her undergraduate training was not sufficient in the field of AAC. Time constraints: As schools rarely admit learners who make use of AAC, they often do not have a protocol in place on how to best include such learners. Both educational support teams discovered that they had to continually try out new methods of increasing participation, with outcomes not always successful—which was time-consuming. A speech-language therapist explained how her caseload was already full and there wasn’t enough time to spend on the development of actual AAC systems. Poor attitudes: Both a speech-language therapist and an educational psychologist mentioned the poor attitudes of some staff members toward AAC and inclusion policies. The educational psychologist referenced the lack of training in AAC first, and then added that there was an unwillingness to change ways of thinking to adapt to the inclusion model suggested by White Paper 6. Lack of resources: Both educational support teams stated that due to the socio-economic status of their specific learner’s families, financial obligations were not seen as a barrier. Both learners attended a school that was well resourced and had access to an educational team. However, many members of the one educational support team had worked with a variety of learners in the past where financial constraints and a lack of resources were indeed a problem. A parent commented that even though resources and finances were not a barrier for her, she could understand how it could be a limitation, due to the high costs of therapies, additional specialized services (e.g. facilitators) and high-tech AAC devices. No access to AAC software was also a barrier highlighted by the speech-language therapist as problematic in settings outside the school environment.

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Policy barriers: The learning support coordinator spoke in depth on the impact of the stringent policies and regulations imposed by the Western Cape Department of Education. Although some team members had thought of innovate ways to work around policies, both the facilitator and the learning support coordinator considered the policies to have been conceived with good intention. Unfortunately, their execution was not always possible.

Skills Required by the Educational Support Team and the Learner Using AAC The focus group was asked to discuss which skills they believed were necessary for team members and the learner who uses AAC in order to make inclusion effective. Participants believed that collaboration and knowledge were the two most critical skills. Collaboration: Effective implementation of social and communication supports for young children with significant disabilities requires collaboration by all the members of the educational support team. The team agreed that regardless of which skills individual members have, collaboration in respect of these skills was of utmost importance. Rather than working in the typical multi-disciplinary setting where team members work in different settings but draw on knowledge from others, it appears that these AAC educational support teams prefer working in interdisciplinary settings where there is better transfer of knowledge and skills. Strong emphasis was placed on synthesis of knowledge and roles were not as strictly defined within an interdisciplinary setting. This obviously allowed for better communication between professionals. The psychologist stated: “[We need] collaboration with other professionals… ” and the speech-language therapist commented “It’s about liaising, maintaining relationships and carrying over skills into other therapies ” while the learning support coordinator suggested that: “[It’s] being aware of the different people who are on the team, what their skills are, what they can bring. In a sense that we don’t limit the generic understanding of what the teacher does, what the facilitator does and what a mom does.”

30  Educational Support Teams’ Perspectives on Inclusion …     637

Knowledge: As a result of insufficient training during undergraduate studies, participants felt that they lacked basic knowledge regarding AAC. They felt they also lacked more specific knowledge regarding the variety of AAC systems available, which would allow them to make appropriate recommendations. The sooner a learner could be matched with an effective device (high technology system), the sooner the learner would be able to achieve success. Lastly, participants felt they were illequipped to set realistic goals and targets for their learners who use AAC, due to their own lack of knowledge. The setting of goals as drafted on the learners’ Individual Support Plan (ISP) should be developed collaboratively by their educational support team, including the family.

Positive Outcomes Finally, participants were asked to discuss the positive outcomes that had emerged as a result of the inclusion of learners who use AAC. Responses varied, but all participants agreed that they had noticed a degree of success. Four distinct themes emerged. Active participation: The basic premise of inclusion promotes a positive classroom environment where the learner has access to additional support, can make use of classroom adaptations and could even have access to specialized services, e.g. a facilitator. The philosophy behind inclusion implies that the learner has access to help on demand, without being taken out of the general education classroom. Therefore, the team noted that the inclusion model enabled learners with significant communication disabilities to participate more actively in the classroom setting. A sense of belonging: Whereas the learners initially felt isolated in mainstream schools, once their peers and teachers understood their mode of communication, they were able to participate more regularly. They felt as if they had a place in the classroom and experienced a sense of belonging. One parent commented as follows: “In Grade 2, the teacher was signing a lot. Because that’s just what she does. She speaks but she also does Deaf Sign. And that gave X a sense of belonging. Like ‘I get this!’  ” An increased perception of being valued and of belonging allowed learners using AAC to experience a more meaningful life, according to

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an educational psychologist. This sense of belonging made the learner happier and increased his/her self-worth, an occupational therapist commented. A parent suggested that this sense of belonging came from being included and having AAC seen as an acceptable mode of communication. The learning support coordinator believed that the sense of belonging came from having the learner connect with others and being recognized in the community. Increased happiness and enjoyment: Being accepted and included in a school environment has caused learners to feel more comfortable. This feeling of comfort put the learner at ease about asking for help and navigating the school. The learner felt more comfortable when he realized he had tools to communicate with, and that led to a decrease in frustration, an educational psychologist observed. An occupational therapist commented on the overall happiness learners experienced. The parent of one of the learners commented on how it made her happier when both her children could attend the same school, as having a child with additional needs often means putting him/her in a special school, separate from their sibling(s). Building friendships: The ability to be part of a community and build friendships deemed a positive outcome by both the parents and speech-language therapist. The speech-language therapist reflected on the role of AAC, and stated: “And then he started making friends. And in hindsight you think … that is why we needed AAC ”. The ability to build and maintain friendships appears to be an important marker for successful inclusion. Maintaining friendships goes beyond the goal of social participation, as it encourages the development of a bond on a deeper level. When probed, a parent described how she had taught her son’s class sign language so that they could communicate with him. Once this mode of communication was established, he was able to better form relationships.

Discussion There is a global sentiment that learners with disabilities should have equal opportunities to participate within natural environments, alongside their peers without disabilities (Odom et al. 2004). The participation of

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every individual as a member of a family, community, and society constitutes the essence of the inclusion model (Frankel et al. 2010). In order for learners to be successfully included in an educational ­setting, they should be able to use their AAC device or system functionally. In essence, success is determined by whether they are able to effectively and efficiently use AAC. Literature supports this notion ­ and goes further to state that learners should be able to access and use a range of different communication modes (Beukelman and Mirenda 2013). Such a multimodal communication system would allow learners to select the mode that is most conducive to the demands of the activity. This flexibility also allows learners to adapt their communication style to the environment. Because the learner is now able to communicate in a range of activities and environments (Judge et al. 2010), participation and inclusion are promoted. Once learners know how to communicate with their devices, they are able to use them for reciprocal communication. As soon as communication begins, the learner appears less frustrated and happier (Stasolla et al. 2014). In contrast, factors that hinder teaching and learning are considered barriers to learning and development (Department of Education 2001). The present research identified inadequate AAC training, time pressures and constraints, personal factors of teaching staff (e.g. their attitude), as well as lack of resources and policy barriers (e.g. the curriculum) as barriers to inclusion. White Paper 6 reported that if these barriers to learning were to be reduced, educational support services had to be strengthened (Department of Education 2001). Inadequate AAC training has often been cited as a barrier to successful inclusion (Bornman and Rose 2017; Soto 2009; Soto et al. 2001). They concluded that AAC training was vital, as assistive technology has specialized demands that have to be met by the educational support team. Due to the complex needs of learners who require AAC, much time needs to be dedicated to managing these learners. High caseloads and a lack of support caused educational support team members to feel that they did not have sufficient time to develop an AAC system. Learners with significant communication disabilities often do not receive an AAC device and have to rely on unaided modes of communication, as this does not require programming (Chung et al. 2012).

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Another barrier to learning and development that was highlighted in the current findings, was the attitude of some professionals. Their attitudes ranged from cultural incompetence to a lack of motivation to continue learning. In order to have a sustainable inclusion model, teachers must harbor positive beliefs about inclusion (Donohue and Bornman 2015; Kugelmass 2006). An attitude that was not mentioned by the participants but that emerged from the remarks made, was that they did not believe in their own potential to provide effective support within an inclusive setting. There was a sense that the therapists (in particular) merely ‘did what they could’ with the learners with AAC needs. No vehement remarks were made about how their own attitudes could act as barriers. The final two barriers that were identified, resources and policy, are intertwined. Donohue and Bornman (2014) argued that the apparent lack of clarity in the policy, i.e. ambiguity about the goals for inclusion and the means through which they can be achieved, as well as various issues around the poor implementation of the policy posed the greatest barriers to inclusion in the South African context. In reality, access to therapy services for learners with disabilities is often determined by their admission to a special school (Struthers 2005). Well-resourced schools with additional support staff (e.g. therapists, facilitators) are often the very schools that charge higher school fees. Other full-service mainstream schools offer only private therapy, which is for the parents’ expense (Struthers 2005). Learners who attend poorly resourced schools are therefore at a disadvantage for receiving adequate support services. In order for the educational support team to meet the needs of the learner whom they serve, it is important that they understand their expected roles and responsibilities within the team (Soto 2009). The Department of Education (2003) provided a framework of skills and competencies required for district-based support teams. Throughout this document, vague references are made about the “collaboration” between professionals, placing the responsibility of ensuring such collaboration upon the teacher. Interestingly, the participants in the current research found that collaboration among team members was of utmost importance. The Department of Education (2003) insists that team members must assess and develop strategies to address needs;

30  Educational Support Teams’ Perspectives on Inclusion …     641

develop inclusion programmes; facilitate learning through various programmes; provide support for particular needs (e.g. AAC); and adapt learning programmes for the specific learning needs. Although the Department vaguely states that ‘teams’ must achieve these outcomes, one could argue that ‘teams must work in a collaborative effort’ to achieve these outcomes. ‘Knowledge’ was the second dominant theme that emerged from the focus group discussions. Team members felt they were not adequately trained (as aforementioned) and therefore lacked the knowledge and expertise. Successful inclusion is reliant on positive social interactions and friendship building. Friendships between learners with and without disabilities are often hindered due to limited social interactions. Salend (1999) states that the speech and language ability of learners with disability is a primary reason for this lack of social interaction. A practical suggestion to overcome this barrier (as highlighted in the current research) is to teach peers how to communicate using AAC strategies and systems as this will increase active participation, resulting in increased happiness of all learners and fostering relationships. Once learners become active participant in their communities (school, home, and church), they experienced a greater sense of belonging.

Conclusion Inclusive education is built on the notion that education should be accessible for all, with no prejudice against disability. Inclusion practises were developed to allow more learners to participate in the education system and receive support aids or adaptive learning programmes when necessary. However, for inclusion to be fully realized, there needs to be a collaborative effort toward reducing the barriers to learning. Recently Nel et al. (2014) conducted research across a sample of South African schools to determine whether the inclusive education system was working effectively. Unsurprisingly, the authors found that there was room for much improvement. In our research, participants were fortunate in that they had access to resources and that finances were not a limitation; however, other barriers existed.

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The success of learners using AAC is dependent on the collaborative skills of team members and the knowledge they share. Despite barriers, team members innovatively overcame challenges in order to promote successful inclusion. Although the education system has not yet fully realized the social model of inclusion, it is important to keep pushing away from the medical model. Although there are many factors over which educational support team members have no control, e.g. policy, it is important to begin the mind shift with regard to the factors that they can control, e.g. increased collaboration skills as well as their own attitudes.

References Bae, S., Hunt, P., Liboiron, N., Maier, J., & Soto, G. (2004). Collaborative Teaming to Support Pre-schoolers with Severe Disabilities Who Are Placed in General Education Early Childhood Programs. Topics in Early Childhood Special Education, 24(3), 123–142. Batorowicz, B., Mcdougall, S. M., & Shepard, T. A. (2006). AAC and Community Partnerships: The Participation Path to Community Inclusion. Augmentative and Alternative Communication, 22(3), 178–195. https://doi. org/10.1080/0743461050046849. Beukelman, D. R., & Mirenda, P. (2013). Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs (4th ed.). Baltimore: Paul H Brookes. Bornman, J., Donohue, D. K., Mare, N., & Dada, S. (2016). Comparing Two Response Modes in a Mathematics Test for Learners in Foundation Phase with Severe Physical Disabilities: A South African Example. International Journal of Educational Science, 14(1–2), 37–44. Bornman, J., & Rose, J. (2017). Believe That All Can Achieve: Increasing Classroom Participation of Learners in Need of Special Support (2nd ed.). Pretoria: Van Schaik. Bukowski, W. M., Motzoi, C., & Meyer, F. (2009). Friendship as Process, Function, and Outcome. In K. H. Rubin, W. M. Burkowski, & B. Laursen (Eds.), Handbook of Peer Interactions, Relationships, and Groups (pp. 217–231). New York, NY: Guilford.

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Calculator, S. (2009). Augmentative and Alternative Communication (AAC) and Inclusive Education for Students with the Most Severe Disabilities. International Journal of Inclusive Education, 13, 93–113. https://doi. org/10.1080/13603110701284656. Chisholm, L. (2005). The State of South Africa’s Schools. In J. Daniel, R. Southall, & J. Lutchman (Eds.), State of the Nation South Africa (pp. 2004– 2005). Pretoria: HSRC Press. Chung, Y., Carter, E. W., & Sisco, L. G. (2012). A Systematic Review of Interventions to Increase Peer Interactions for Students with Complex Communication Challenges. Research and Practice for Persons with Severe Disabilities, 37, 271–287. Conway, C. (2017). Teachers’ Perspectives of Learner Support in a Full-Service School—A Case Study. Master’s Thesis, Stellenbosch University, Cape Town, South Africa. Department of Education. (2001). Education White Paper 6 on Special Needs Education: Building an Inclusive Education and Training System. Pretoria: Department of Education and Government Printer. Department of Education. (2003). Integrated Quality Management System: Collective Agreement 8 of 2003. Pretoria: Department of Basic Education and Government Printer. Donald, D., Lazarus, S., & Lolwana, P. (2002). Educational Psychology in Social Context (2nd ed.). Cape Town: Oxford University Press. Donohue, D., & Bornman, J. (2014). The Challenges of Realising Inclusive Education in South Africa. South African Journal of Education, 34(2), 1–14. Donohue, D., & Bornman, J. (2015). South African Teachers’ Attitudes Toward the Inclusion of Learners with Different Abilities in Mainstream Classrooms. International Journal of Disability, Development and Education, 62(1), 42–59. Engelbrecht, P. (2006). The Implementation of Inclusive Education in South Africa After Ten Years of Democracy. European Journal of Psychology of Education: A Journal of Education and Development, 21(3), 253–264. Engelbrecht, P., Nel, M., Smit, S., & Deventer, M. Van. (2016). The Idealism of Education Policies and the Realities in Schools: The Implementation of Inclusive Education in South Africa. International Journal of Inclusive Education, 20(5), 520–535. https://doi.org/10.1080/13603116.2015.1095250. Frankel, E. B., Gold, S., & Ajodhia-Andrews, A. (2010). International Preschool Inclusion: Bridging the Gap Between Vision and Practices. Young Exceptional Children, 13(5), 2–16. https://doi.org/10.1177/ 1096250610379983.

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Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the Framework Method for the Analysis of Qualitative Data in Multi-disciplinary Health Research. BMC Medical Research Methodology, 13(1), 117. https://doi.org/10.1186/1471-2288-13-117. Grant, D. (2013). Minister Grant Congratulates Special Needs School Speech. Retrieved from https://www.westerncape.gov.za/speech/minister-grantcongratulates-special-needs-schools. Grether, S. M., & Sickman, L. S. (2008). AAC and RTI: Building ClassroomBased Strategies for Every Child in the Classroom. Seminars in Speech and Language, 2008(29), 155–164. Guba, E., & Lincoln, Y. (1989). Fourth Generation Evaluation. Newbury Park, CA: Sage. Hammal, D., Jarvis, S., & Colver, A. (2004). Participation of Children with Cerebral Palsy Is Influenced by Where They Live. Developmental Medicine and Child Neurology, 46, 292–298. Hunt, P., Soto, G., Maier, J., Müller, E., & Goetz, L. (2002). Collaborative Teaming to Support Students with Augmentative and Alternative Communication Needs in General Education Classrooms. Augmentative and Alternative Communication, 18(1), 20–35. https://doi.org/10.1080/aac.18.1.20.35. Jirikowic, T., Stika-Monson, R., Knight, A., Hutchinson, S., Washington, K., & Kartin, D. (2001). Contemporary Trends and Practice Strategies in Pediatric Occupational and Physical Therapy. Physical & Occupational Therapy in Pediatrics, 20(4), 45–62. Johnson, E., Nilsson, S., & Adolfsson, M. (2015). Eina! Ouch! Eish! Professionals’ Perceptions of How Children with Cerebral Palsy Communicate About Pain in South African School Settings: Implications for the Use of AAC. Augmentative and Alternative Communication, 31(4), 325–335. https://doi.org/10.3109/07434618.2015.1084042. Judge, S., Floyd, K., & Woods-Field, C. (2010). Creating a Technology-Rich Learning Environment for Infants and Toddlers with Disabilities. Infants & Young Children, 23(2), 84–92. King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M., & Young, N. (2003). A Conceptual Model of the Factors Affecting the Recreation and Leisure Participation of Children with Disabilities. Physical & Occupational Therapy in Pediatrics, 23(1), 63–90. Kothari, C. R. (2004). Research Methodology: Methods and Techniques (2nd ed.). New Delhi: New Age International Publishers. Kugelmass, J. W. (2006). Sustaining Cultures of Inclusion: The Value and Limitation of Cultural Analyses. European Journal of Psychology of Education, 21, 279–292.

30  Educational Support Teams’ Perspectives on Inclusion …     645

Kyarkanaye, T. (2016). Team Collaboration in Early Childhood Intervention Services in South Africa: Comparing Professional and Caregiver Perspectives. Unpublished PhD Thesis, University of Pretoria, South Africa. Lampropoulou, V., & Padelliadu, S. (1997). Teachers of the Deaf as Compared with Other Groups of Teachers: Attitudes Toward People with Disability and Inclusion. American Annals of the Deaf, 142(1), 26–33. Law, J., Lindsay, G., Peacey, N., Gascoigne, M., Soloff, N., Radford, J., et al. (2002). Consultation as a Model for Providing Speech and Language Therapy in Schools a Panacea or One Step Too Far? Child Language Teaching and Therapy, 18(2), 145–164. Nel, M., Engelbrecht, P., Nel, N., & Tlale, D. (2014). South African Teachers’ Views of Collaboration Within an Inclusive Education System. International Journal of Inclusive Education, 18(9), 903–917. Ntombela, S. (2011). The Progress of Inclusive Education in South Africa: Teachers’ Experiences in a Selected District, KwaZulu-Natal. Improving Schools, 14(1), 5–14. https://doi.org/10.1177/1365480210390082. Odom, S. L., Teferra, T., & Kaul, S. (2004). An Overview of International Approaches to Early Intervention for Young Children with Disabilities and Their Families. Young Children, 59(5), 38–43. Republic of South Africa. (1994). Constitution of the Republic of South Africa, Act No. 200 of 1993 (Vol. 343). Cape Town: Government Gazette. Rolfe, G. (2006). Judgements Without Rules: Towards a Postmodern Ironist Concept of Research Validity. Nursing Inquiry, 13(1), 7–15. Salend, S. J. (1999). Facilitating Friendships Among Diverse Students. Intervention in School and Clinic, 35(1), 9–15. Soto, G. (2009). Inclusive Education and Participation: Current Issues In AAC. Augmentative and Alternative Communication, 21(2), 20–21. https:// doi.org/10.1080/07434610500140410. Soto, G., Müller, E., Hunt, P., & Goetz, L. (2001). Critical Issues in the Inclusion of Students Who Use Augmentative and Alternative Communication: An Educational Team Perspective. AAC Augmentative and Alternative Communication, 17(2), 62–72. https://doi.org/10.1080/714043369. Stasolla, F., De Pace, C., Damiani, R., Di Leone, A., Albano, V., & Perelli, V. (2014). Comparing PECS and VOCA to Promote Communication Opportunities and to Reduce Stereotyped Behaviors by Three Girls with Rett Syndrome. Research in Autism Spectrum Disorders, 8(10), 1269–1278. Statistics South Africa (2016). Retrieved from http://www.statssa.gov. za/?page_id=1854&PPN=Report%2092-01-03.

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Stoner, J. B., Angell, M. E., & Bailey, R. L. (2010). Implementing Augmentative and Alternative Communication in Inclusive Educational Settings: A Case Study. Augmentative and Alternative Communication, 26(2), 122–135. https://doi.org/10.3109/07434618.2010.481092. Struthers, P. (2005). The Role of Occupational Therapy, Physiotherapy and Speech and Language Therapy in Education Support Services in South Africa. PhD Study, School of Public Health, Faculty of Community and Health Sciences, University of the Western Cape. Swart, E., Engelbrecht, P., Eloff, I., & Pettipher, R. (2002). Implementing Inclusive Education in South Africa: Teachers’ Attitudes and Experiences. Acta Academia, 34(1), 175–189. Terzi, L. (2010). Justice and Equality in Education: A Capability Perspective on Disability and Special Education Needs. London: Continuum. Thabane, L., Ma, J., Chu, R., Cheng, J., Ismaila, A., Rios, L. P., et al. (2010). A Tutorial on Pilot Studies: The What, Why and How. BMC Research Methodology, 10(1). https://doi.org/10.1186/1471-2288-10-1. United Nations. (1948). Universal Declaration of Human Rights. Geneva: United Nations. United Nations. (1989). Convention on the Rights of the Child. Geneva: United Nations. United Nations. (2006). Convention on the Rights of Persons with Disabilities and Optional Protocols. Geneva: United Nations. Wentzel, K. R. (2009). Peers and Academic Functioning at School. In K. H. Rubin, W. M. Burkowski, & B. Laursen (Eds.), Handbook of Peer Interactions, Relationships, and Groups (pp. 531–547). New York, NY: Guilford. Whiting, M., & Young, J. (1995). Integration: Social Justice for Teachers. Paper presented at the Australian Association for Research in Education Conference, Hobart, Tasmania. Wright, J. A., Newton, C., Clarke, M., Donlan, C., Lister, C., & Cherguit, J. (2006). Communication Aids in the Classroom: The Views of Education Staff and Speech and Language the Rapists Involved with the Communication Aids. British Journal of Special Education, 33(1), 25–32.

31 Strength-Based Instruction (SBI): A Systematic Instructional Training Model with a Primary Focus on a Child’s Strength Sumita Chakraborti-Ghosh

Introduction The evolution of strengths-based approach is very much in its early stage. Anderson (2004) identified some key components that help educators to identify their own talents and strengths. This approach involves a process of assessing, teaching, and designing experiential learning activities to help students identify their greatest talents, and then to develop and apply strengths based on those talents in the process of learning, intellectual development, and academic achievement to levels of personal excellence (Anderson 2004). The strengths-based approach has been used in the counseling field for more than a decade. Research shows that “counseling psychologists underwent a paradigm shift in the mid-1990s from the traditional medical model, focusing on pathology, to the strengths-based model, focusing on the client’s assets” (Smith 2006; Rashid and Ostermann 2009). Strength-based assessment S. Chakraborti-Ghosh (*)  Department of Teaching and Learning, Tennessee State University, Nashville, TN, USA e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_31

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explores weaknesses as well as strengths to effectively deal with problems. In this article, the authors presented 10 strength-based strategies for clinical practices. They are: 1. Clinicians can choose validated instruments to assess specific positive constructs. 2. Strength measures, developed by practitioners and researchers of positive psychology, are readily available online without any charge. 3. Interviews guided by research can also be used to assess strengths. 4. To help clients to discern and identify their own strengths, clinicians can also use icons of certain strengths, real-life narratives, and popular films. 5. Clinicians can also seek collateral information from family members, colleagues, and friends about the strengths of their client as well as the strengths of concerned individuals as they relate to the client. 6. Clinicians can also use standardized as well as informal measures to assess strengths of the client displayed during challenges and trauma. 7. The authors recommend that clinicians assess strengths early in the therapeutic process. 8.  Assessment of strengths provides the clinician with a powerful mechanism with which to encourage clients to pursue absorption and deep engagement. 9. Clinicians, who prefer not to use formal measures of strengths, can use a narrative strategy. 10. Clinicians can assess whether the client is currently able to translate the abstract strengths into concrete actions, behaviors, and habits (pp. 488–498). Weishaar (2010) discussed developing Strengths-based Individual Education Plan (IEP), during IEP meeting. He emphasized Strengthsbased IEPs focus on student strengths and abilities, rather than weaknesses and disabilities, in preparing parents and teachers for the IEP meeting, presenting information at the meeting, and documenting the meeting in writing. Resiliency initiatives prepared a set of guidelines that support the underlying values, principles and philosophy of strengths-based practices to develop a better understanding of the role

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of transformational engagement through positive experiences of students “at potential” in the school-based settings (Hammond, www. resiliencyinitiatives.ca, 2011). In this approach, practitioners, educators, researchers, and community care providers shift their attention from the prevention of specific problems to a more holistic focus on the positive aspects of youth development. For example, share the positive experiences in group counseling; focus on “I can,” not “I can’t.” Bozic (2013), investigates how strength-based assessments can be integrated into school-based educational psychology work, to identify actual and potential strengths at personal, interpersonal and systems levels. However, no classroom instructional approach or strategies has been established that can be used as a training model for classroom teaching. The chapter is organized as per the following objectives: 1. To describe the evolution and theoretical framework of Strengthsbased Instruction (SBI) 2. To discuss the benefits of SBI for teaching students with exceptional needs 3. To discuss the role of technology in SBI 4. To describe the evidence-based best practice of SBI for a child with disability.

Literature Review and Related Theories SBI is a systematic approach to instructional training model with a focus on the identification of a child’s strengths (Chakraborti-Ghosh 2013). The purpose of this approach is to emphasize the strengths of children in order to improve their academic, social, and behavior performance. Resiliency initiatives (2011) described strength-based approach as a positive psychology perspective that emphasizes the strengths, capabilities, and resources of a youth. Those who embrace a strength-based perspective hold the belief that all youth and their families have strengths, resources and the ability to recover from adversity. Pattoni (2012) mentioned that Strengths-based approaches concentrate on the inherent strengths of individuals, families, groups

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and organizations, deploying personal strengths to aid recovery and empowerment described in a publication managed by The Institute for Research and Innovation in Social Services (IRISS). In essence, to focus on health and well-being is to embrace an asset-based approach where the goal is to promote a positive outcome. An empirical study was conducted by Hirst et al. (2011) and the results were submitted to Alberta health service on Strengths-based approaches for mental wellness for seniors and adult with disabilities. The study identified emerging and innovative strength-based approaches to mental wellness for older adults and adults with a disability. Strengths-based case management (SBCM) has been successfully utilized largely with adults with mental health or substance abuse issues (Arnold et al. 2007). Tehan and McDonald (2010) stated that employing strengths-based approaches to parent increase program effectiveness and improves parental engagement with services. Price-Robertson (2010) suggests that strengths-based approaches prepare young parents shift away from the “at risk paradigm”. Through strengths-based approach young parents have the opportunity to identify their own strengths and work toward achieving positive personal and interpersonal outcomes (PriceRobertson 2010). Strengths-based approach has been a focus on Participant Centered Education (PCE), which is a key component of California’s Women, Infant, and Children’s (WIC) effort to offer Platinum WIC—Participant Centered Services (PCS). The California WIC PCS approach puts the WIC family at the center of everything. The primary focuses are on the participant’s capabilities, strengths, and their nutrition, health, and referral needs, not just problems, but risks, or unhealthy behaviors. PCE includes working collaboratively, eliciting and supporting motivation to change, and respecting participants as the ones who decide if and when they will learn and/or make a change (WIC-Training-PCE-Strength-FacililitatorsGuide.pdf ). According to Ye-He (2009) strengths-based models and its impact on mentoring pre-service teachers not only allow mentors and mentees to have an open conversation regarding teaching but also equips pre-service teachers with the strategies they need to remain in the teaching field (p. 273). Ye-He also emphasizes that strength-based mentoring not only allows mentors and mentees to have an open conversation

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regarding teaching but also equips pre-service teachers with the strategies they need to remain in the teaching field (p. 273). In the field of social work, Rawana and Brownlee (2009) defined strengths as a set of developed competencies and characteristics that is valued both by the individual and society and is embedded in culture. The strength, assessment, and treatment model is an approach to working with families that emphasizes four key foundational components which are described as engagement, exploration, expansion, and evolution (p. 256). According to National Technical Assistance and Evaluation Center for Systems of Care (NTEACSC), a child welfare agency, identifies strengths-based approach as an individualized, strengths-based approach that refers to policies, practice methods, and strategies which identify and draw upon the strengths of children, families, and communities. Strengthsbased practice involves a shift from a deficit approach, which emphasizes problems and pathology, to a positive partnership with the family (NTEACSC 2008). There is no evidence of SBI implementation as an instructional model for teachers to teach students in today’s classroom. The SBI model has been developed on the ground of Backward Planning Model ([Steere et al. 1990], and Pathways to Successful Transition model [Greene and Kochhar-Bryant 2003, cited in Flexer et al. 2008]). Backward Planning Model is a step-by-step planning process that starts with an identified and desired goals and plans backward to the current level of functioning and support (Flexer et al. 2008). It is done during the development of an IEP for a student with exceptional needs. Pathway to a successful Transition model is a transition planning process originally designed by Greene (2003) in four transition pathways: “(a) mainstreaming academics leading to college, (b) semi-integrated academics and/or career/technical education leading to two-year college; (c) semi-integrated academics and/or career/technical leading to employment and (d) life-skills training leading to supported employment” (cited in Flexer et al. 2008, p. 138). The teacher can develop a step-by-step instructional plan identifying strengths of each student, and create a Universal design for learning (UDL) (Rose and Meyer 2002) environment for all students where each student is motivated for active participation and engagement in her/his own learning.

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According to the State of Victoria, Department of Education and Early Childhood Development’s (DEECD) in Australia (2012), strength-based approach is quite effective in writing transition statement. The strength-based approach represents a paradigm shift—a movement away from a deficit-based approach which can lead to a long list of things considered to be “wrong” with a child’s learning and development or things a child cannot do. The deficit-based model fails to provide sufficient information about strengths and strategies to support a child’s learning and development (Department of Education and Early Childhood Development Melbourne 2012). The purpose of this approach was to guide educators to view situations realistically and look for opportunities to complement and support existing strengths and capacities as opposed to focusing on, and staying with, the problem or concern. The problem and the person are separate; however, the problem is never minimized. On the same note, Powell (2015) described strengths-based approach from the perspectives of clinical and mental health services, that focuses on the risk factors, that increase the like­ lihood of developing and maintaining problematic behaviors and symptoms (p. 7).

Theoretical Framework of Strengths-Based Instruction (SBI) The theoretical framework of SBI has been organized with SBI as a central focus. Strengths begin with the ownership to advocacy in students. Then it transcends to teachers and parent through identification, and acknowledgment of strengths as key factors for instructional and assessment purpose to develop an outcome-oriented education plan. The education plan includes but not limited to integrative and inclusive ecosystems with the assistance of parents, students and student’s learning and social communities. Last but not least, the curriculum and instruction are constantly improved and evaluated through an ongoing professional development and through the assessment of student’s success. See Fig. 31.1.

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Fig. 31.1  Theoretical Framework

The SBI Theoretical framework is described below for an in-depth understanding of each content area. 1. Advocacy and Ownership: Important to acquire knowledge of existence and advocate in a way such that the child is aware of his/her own strengths. Parents are aware of and/or acknowledge their children’s strengths. Also whether the teachers are aware of their student’s strengths to help them with a better coping mechanism of their weakness or disabling conditions. 2. Identification, Acknowledgement, and Assessment: With the identification process, it is important to establish the knowledge of the existence of strengths, and assessing the level of strengths that can help to overcome the weakness. Identification process begins with • Identification of Basic skills • Early identification of strengths

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• Acknowledgment of the areas of strengths • Identification of the instructional strategies that work on the identified strengths • What is the area of needs? • How can the identified strengths help the child to overcome weakness? • How can it help to increase self-confidence? • How can it transfer to achieve positive outcomes? 3. Ecological: • • • •

Interest survey, likes, dislikes Relationship with peers Relationship with parents Extracurricular pursuits/interests.

Cultural: • Language • Number of Siblings • Gender/Role • Role of Religion • Expectation of the Family • Value of Education in the Family • Community involvement/engagement • SocioEconomic Status. 4. Curriculum: Includes intensive training to design a curriculum from lesson plan to outcome-oriented instruction • Integrative, Inclusive Eco culture: Involves students, parents, classroom teachers with other collaborative professionals, community organization for strengths infusion practice, – School administrators and staffs • Includes multilingual, and cross-cultural support system • Skill Development Lesson: STEM-oriented Academic curriculum • Social Curriculum • Math: Computational, application, logical and mathematical problem-based learning, etc.

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• Reading, fluency, comprehension. Project-Based Learning (PBL) • Writing: spelling, fluency, automatization, Proprio-Kinesthetic simultaneous processing using PBL • Science: Scientific inquisition, experimentation, interest in detail investigation using PBL • Social Studies/Geography: Geographical differences, Cultural & linguistic differences, Ethnicity, gender, society roles and responsibilities, PBL. SBI instruction includes but not be limited to community-based instruction engaging community leaders from community businesses using Project Based Learning. The influence of spiritual and religious leaders like Priest, Imam, Rabbi, Pundit, Guru, inculcating selfesteem, strengths and weaknesses must be encouraged. Community professionals from Supermarket, Farmer’s Group, Co-op, Firemen, Physicians, Engineers, Technical workers are also important. SBI with PBL helps to develop strengths-based future employment possibilities Involving parents into child’s education. Parent will be used as: • • • •

support system, not to do child’s work Cultural ambassadors Involving parents in the classroom community Using older siblings in the classroom community if available.

5. Outcome-Oriented Evaluation: Final outcome of the evaluation of evidence-based practice. SBI is outcome-oriented process. Once it is administered strategically, the assessment is a simultaneous progression of child’s learning. Therefore, an outcome of the strategic instruction and child’s academic and social learning is automatic. The child, and teacher are an integral part of instruction and learning. Powell (2015) has described a holistic perspective view of Strengthsbased Approach for at risk youth. It considers the whole person and the multitude of individual, family, and community factors that makes a healthy impact on negative outcomes (Leverse and Powell 2012). It encompasses two models: Biopsychosocial (Dodge and Pettit 2003; Engel 1980) and Ecological (Bronfenbrenner 1979, 2005).

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“Biopsychosocial model highlights how the development of positive and problematic behaviors is the result of the interaction of biological, psychological, and sociocultural factors that all require attention for effective intervention. Whereas, the Ecological model views youth as developing within a complex of network of reciprocally interacting contexts and relationships” (Powell 2015, pp. 25–26). SBI follows the same philosophy in designing the instruction for all children to avoid any potential damage in children and youth’s academic, social and behavioral learning.

SBI and Exceptional Needs SBI provides an opportunity to improve self- confidence for individuals or children with disabilities from all cultural backgrounds. According to the report of the DEECD in Australia it is recommended that all educators should look beyond the disability or delay when writing statements and to focus on the child’s strengths, interests and abilities, especially for children with developmental delay (p. 10). Furthermore, an ecological learning environment including children’s personal, family and cultural histories can strengthen their academic learning and social and emotional development. Children learn best when educators respect their diversity and provide them with the best support, opportunities and experiences. SBI also recognizes bi and/or multilingualism as an asset and support for these children to maintain their first language, promote cultural awareness in all children. Similarly for strength-based approach can be applicable for gifted and talented children, toward achieving their full potential, and educators are encouraged to provide challenges and opportunities to expand the child’s learning and development at a faster pace (http://www.education.vic.gov.au/Documents/childhood/ professionals/learning/strengthbappr.pdf, pp. 9–10).

SBI and Assistive Technology Since the primary focus of SBI is emphasizing on strengths, therefore, any assistive (AT), adaptive (ADT), and remedial technology (RT) can be used as strength-building exercises (Chakraborti-Ghosh 2017).

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Some examples are using augmentative and communicating devices to increase and enhance the communication of students with and without disabilities in an inclusive classroom. Using several software i.e., speech to text, dragon naturally speaking, voice-activated phone, iPads, computer etc. that minimizes the stress of verbal communication in person or, via phone. Assistive technology can also be implemented as strengths-­ building exercises to avoid any stress for reading, writing, math computation, and comprehension. For examples today’s children love to play video games, or any games using Apps in their phones or in their iPads/Tablets. On a practical note, millennium generation with or without disabilities, feel more comfortable to talk, breathe, dream, and play with technology. According to Redburn (2009), there are many attributes (e.g., feedback, error correction, pedagogical agents) of well-designed technology tools and online instructional materials that can support and engage struggling learners. The primary challenge will be those associated with technology integration (i.e., identifying instructional goals, searching for appropriate tools, evaluating, purchasing, training, and routine use). Instructional technologies may not include robust data collection and student performance monitoring features. Stanford et al. (2010) suggested three criteria to use technology as part of differentiated instruction: first create a UDL classroom with both in the physical layout of the classroom and in instructional design that facilitates a multilevel community. Stanford et al. (2010) also indicated that modeling independent learning skills and strategies by using technology specific for each student facilitates independent learning, and supports student goal setting with positive behavior support. And last but not least, thinking about and planning of technology use in the classroom (e.g., emails, blogs, and websites) is essential for building an efficient classroom environment (Stanford et al. 2010).

SBI and STEM SBI prepares all teachers to incorporate a scientific approach using Science Technology Engineering and Math (STEM) into the curriculum. It creates motivation to investigate research-based inquiry in

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science using their multiple intelligences and strengths. It recognizes the strengths of today’s children using technology as a tool for instruction, learning, and performances. Today’s children are more responsive to hands-on learning. Therefore, using SBI engages them in productoriented learning through manipulation. SBI can stimulate interest in logical and mathematical thinking and learning using hands-on math manipulation. With STEM in mind, a study conducted for engineering students with attention deficit disorders (ADHD) to foster creativity through Strengths-based approach. People with ADHD often have poor time management skills and, depending on the tasks, have trouble focusing and can be prone to procrastination. But ADHD is also strongly associated with the ability to think quickly in unconventional ways—the kind of thinking that can find solutions to the types of complex problems that engineers often encounter. Yet traditional engineering training rarely takes advantage of these strengths, say the researchers, who come from the fields of engineering, education, psychology, and psychopharmacology. It tends to be rigid, and sets very narrow goals for students, says Arash E. Zaghi (Weir 2015). Therefore, it is evident that strengthsbased approach can be used in all curriculum including STEM. SBI & Inclusion: An Evidence Based Practice with a high school freshman high functioning Autistic student from Nashville Tennessee, USA A study conducted by Chakraborti-Ghosh (2013) using SBI for a high functioning Autistic youth from 9th grade using the single-subject design across the setting at home and in a school setting. The participants were high school freshman with Asperger’s Syndrome, her mother, and her high school inclusion teacher and her English teacher. Music, art, and technology (iPad, headphone, and computer) were identified as Student’s strength. The intervention started during the Fall semester of 2011 with an IEP Meeting. English teacher participated as a regular education teacher. The student H used music to complete her task at home. She used art such as drawing and technology (iPads, headphone, and computer software) to complete her assignment at school. Please see the description in table one and two for more information. As described in these two tables above, that SBI was used through the identification of the strengths in different activities for student H.

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Table 31.1 explains the strengths or choice of preference in completing school and home activities. Table 31.2 describes the completion of assignments using the identified strengths. Intervention continued until sophomore year. The inclusion teacher was transferred to a higher position so the research could not continue until graduation. The result indicated significant grade increase in English compared to other subjects (Chakraborti-Ghosh 2013).

Summary This chapter provides in-depth information of SBI as an Instructional training model to provide instruction to children with and without disabilities in an inclusion classroom. The evolution of SBI includes detailed research-based and evidence-based information which justifies the necessity and importance of professional development using SBI training model throughout the chapter. All researchers and practitioners may find SBI as an opportunity to consider as one of the effective and productive option to increase the academic performances of all students in an inclusive classroom. This instructional model presents a win-win situation for all teachers, parents, administrators, school districts, and last but not least the students who gain self-esteem, self-confidence, and self-respect.

Table 31.1  Identification of strengths Student

School strengths

H

Logical thinking—math- Self help skills—ability to care for herself, does daily chores, maintains personally ematical skills, scienproperty, cooks tific method Technology—computer Technology—uses computer/internet to complete homework assignments, create skills, word processing digital art, mix music and maintain Organizational skills— calendar deadlines, school Accountability—occasionally cares for work, workspace Artistic—drawing, colors younger siblings, helps maintain family Music—rhythms, rhymes living space

Home strengths

H home activities

House cleaning/ Chores

Logical thinking

Uses Calendar Uses to determine logical days she is thinkassigned ing to specific perform chores. chores/ Uses lists assignon “family ments cleaning in order days” to of outline her imporassignments tance

Completing Maintains homework personal agenda, creates outline (with assistance) with check list to complete larger tasks

NonPreferred

Organization skills

Activity

Student H home activities

Table 31.2 Activities Technology Example

Uses smartphone to “check” items off of her to-do list

Uses art H was assigned a project in Lifetime Wellness to Uses the (personal write a research paper on the heart and cardiovasinternet or parent cular disease and comcreated) to She initially failed to complete the project and did puter to demonnot tell parents about the project. When conresearch, strate and tacted by teacher parents assisted H in creating a create undertimeline of goals to complete project. H used the and stand internet to identify different parts of the heart complete complex and their function, find information about carhomework informadiovascular disease, look at anatomical diagrams tion and write the research paper. Parents and H used hand drawn art to enable H to understand heart functions and other concepts that she could not understand by verbal and/or written explanations

Arts–Music/ drawing

660     S. Chakraborti-Ghosh

31  Strength-Based Instruction (SBI): A Systematic …     661

Key Terminologies Strengths-based Instruction Inclusive Classrooms Theoretical Framework Project-based Learning Assistive Technology

References Anderson, E. C. (2004). What Is Strengths-Based Education?: A Tentative Answer by Someone Who Strives to Be a Strengths-Based Educator. Unpublished manuscript. Arnold, E. M., Walsh, A. K., Oldham, M. S., & Rapp, C. A. (2007). Strengths-Based Case Management: Implementation with High-Risk Youth. Families in Society: The Journal of Contemporary Human Services, 88(1). https://doi.org/10.1606/1044-3894.3595. Bozic, N. (2013). Developing a Strength-Based Approach to Educational Psychology Practice: A Multiple Case Study. Educational & Child Psychology, 30(4), 18–29. ©The British Psychological Society, 2013. Bronfenbrenner, U. (1979). The Ecology of Human Development: Experiments by Nature and Design. Cambridge, MA: Harvard University Press. Bronfenbrenner, U. (2005). Ecological Systems Theory (1992). In U. Bronfenbrenner (Ed.), Making Human Beings Human: Bioecological Perspectives on Human Development (pp. 106–173). Thousand Oaks, CA: Sage Publications Ltd. California Wic Program. Strengths Based Approach: Participation Centered Education, A Facilitator’s Guide. Chakraborti-Ghosh, S. (2013, February 27–28). Strength Based Instruction (SBI): A Post-school Transition Model for a Child with Asperger’s Syndrome. A Workshop Conducted at 2013 Southeastern “Across the Spectrum” Autism/ Asperger Conference. Chakraborti-Ghosh, S. (2017). Technology for Inclusion, Special Education, Rehabilitation, for All. New York, NY: Linus Learning Publishing. Department of Education. (2012). Strengths Based Approach: A Guide to Writing Transition Learning and Development Statements. ©State of Victoria

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(Department of Education and Early Childhood Development, Victoria, Melbourne, Australia). http://www.education.vic.gov.au/Documents/childhood/professionals/learning/strengthbappr.pdf. Dodge, K. A., & Pettit, G. S. (2003). A Biopsychosocial Model of the Development of Chronic Conduct Problems in Adolescence. Developmental Psychology, 39(2), 349–371. Engel, G. L. (1980). The Clinical Application of the Biopsychosocial Model. American Journal of Psychiatry, 137, 535–544. Flexer, R. W., Baer, R. M., Luft, P., & Simmons, T. J. (2008). Transition Planning for Students with Disability. New York, NY: Pearson. Greene, G. (2003). Transition Pathways. In G. Greene & C. A. KochharBryant (Eds.), Pathways to Successful Transition for Youth with Disabilities (pp. 199–229). Columbus, OH: Merrill/Prentice Hall. Greene, G., & Kochhar-Bryant, C. A. (2003). Pathways to Successful Transition for Youth with Disabilities. Columbus, OH: Merrill/Prentice Hall. Hammond, W. (2011). Principles of Strengths Based Practice. www.resiliencyinitiatives.ca. He, Y. (2009). Strength-Based Mentoring in Pre-service Teacher Education: A Literature Review. Mentoring & Tutoring: Partnership in Learning, 17(3), 263–275. Hirst, S. P., Lane, A. M., & Navenec, C.-L. L. (2011). Strength-Based Approaches for Mental Wellness in Seniors and Adults with Disabilities. Alberta Health Services—Addiction and Mental Health. Leverse, T., & Powell, K. M. (2012). Beyond Risk Management to a More Holistic Management for Treating Sexually Abusive Youth. In B. Schwartz (Ed.), The Sex Offender: Current Trends in Policy and Treatment Practice (Vol. 7, pp. 1–32). Kingston, NJ: Civic Research Institute. NTEACSC. (2008). An Individualized, Strengths-Based Approach in Public Child Welfare Driven Systems of Care. A Closer Look. https://www. childwelfare.gov/pubPDFs/strengthsbased.pdf. Pattoni, L. (2012). Strengths-Based Approaches for Working with Individuals. Insight, 16. Institute of Research and Innovation in Social Services. https:// www.iriss.org.uk/sites/default/files/iriss-insight-16.pdf. Powell, K. M. (2015). A Strengths-Based Approach for Intervention with At-Risk Youth. Champaign, IL: Research Press. Price-Robertson, R. (2010, December). Supporting Young Parents. Australian Institute of Family Studies, CAFCA Practice Sheet.

31  Strength-Based Instruction (SBI): A Systematic …     663

Rashid, T., & Ostermann, R. F. (2009). Strength-Based Assessment in Clinical Practice. Journal of Clinical Psychology: In Session, 65(5), 488–498. ©2009 Wiley Periodicals, Inc. www.interscience.wiley.com. Rawana, E., & Brownlee, K. (2009). Making the Possible Probable: A Strengths Based Assessment and Intervention Framework for Clinical Work with Parents, Children and Adolescents. Families in Society: The Journal of Contemporary Social Services, 90, 255–260. ©2009 Alliance for Children and Families. Redburn, D. L. (2007). Technology Enhanced Reading Performance: Defining a Research Agenda. Reading Research Quarterly, 42(1), 146–152. Redburn, D. L. (2009, January/February). Response to Intervention (RTI): Is There a Role for Assistive Technology? Special Education Technology Practice. Rose, D. H., & Meyer, A. (2002). Teaching Every Student in the Digital Age: Universal Design for Learning. Retrieved July 12, 2007, from the Association for Supervision and Curriculum Development. http://www.cast.org/ teachingeverystudent/ideas/tes. Smith, E. J. (2006, January). The Strengths Based Counseling Model. The Counseling Psychologist, 34(1), 13–79. Stanford, P., Crowe, M. W., & Flice, H. (2010). Differentiating with Technology. Teaching Exceptional Plus, 6(4), Article 2. Retrieved from https://eric.ed.gov/. Steere, D. E., Wood, R., Pancsofar, E. L., & Butterworth, J. (1990, April 1). Outcome-Based School to Work Transition Planning for Students with Severe Disabilities. Sage Journals. http://journals.sagepub.com/ doi/10.1177/088572889001300106. Tehan, B., & McDonald, M. (2010, September). Engaging Fathers in Child and Family Services. Australian Institute of Family Studies, CAFCA Practice Sheet. Weishaar, P. M. (2010). Twelve Ways to Incorporate Strengths-Based Planning into the IEP Process. Clearing House, 83(6), 207–210. Weir, W. (2015). Study Looks to Tap Strengths of ADHD Students. UCONN Today. https://today.uconn.edu/2015/02/engineering-educationstudy-looks-to-tap-strengths-of-adhd-students/#.

32 Concluding Chapter: Challenges and Strategic Pathways to Participation, Equity, and Access Santoshi Halder and Vassilios Argyropoulos

Introduction The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD 2008) is a significant milestone in terms of full and equal participation of people with disabilities in society. The UNCRPD (2008) is a major global catalyst having far-reaching consequences which reactivated legislations and policy framework at local, national, and global levels, after many years of struggle and advocacy, the rights and dignity of millions of people with disabilities all over the world for the first time got witnessed in a grand way. As an outcome some noteworthy local and national legislation got into the limelight in many countries with a significant impetus on the participation and inclusion of people with disabilities. It has been nearly ten long years S. Halder (*)  Department of Education, University of Calcutta, Kolkata, India V. Argyropoulos  Department of Special Education, University of Thessaly, Volos, Greece e-mail: [email protected] © The Author(s) 2019 S. Halder and V. Argyropoulos (eds.), Inclusion, Equity and Access for Individuals with Disabilities, https://doi.org/10.1007/978-981-13-5962-0_32

665

666     S. Halder and V. Argyropoulos

that UNCRPD came into effect but to what extent the actual practices have evolved is indeed an area of much exploration. Existing literature and reports well depict the present status that reflects quite clearly that in spite of the legislations and provisions at International and National levels for promoting, protecting, and ensuring the full participation of the persons with disabilities (PwD) in society, there remains a noteworthy gap at the implementation level as people with disabilities are still struggling hard for independent living and effective participation in all walks of life. This is not only an area of concern for the developing countries but also in the most low resource regions of even the most developed countries that depicts similar instances of marginalization and discrimination due to which the success of legislative movements are not reaching the ultimate success. World Disability Report (WHO 2011), estimates that about 15% of the world’s population lives with some form of disability and it is reported that South Asian region alone has approximately 140 million people with disabilities, of which 42 million (30%) are children (UNICEF—ROSA report 2003/04) and in all parameters of quality of life (QOL) indicators, people with disabilities are left behind.

Participation as a Core Determinant of Inclusion The status of participation of PwD is still at the “integration level” and not at the “inclusion level” mostly due to the various ways inclusion is being understood and implemented under the influence of conformational factors such as culture and other sociocultural challenges existing all over the world. Environmental dynamics remain one of the foremost determinants of participation as people in general (with or without disability) are influenced by interactions and activities in their environments (Simeonsson 2006). Empirical studies covering low and lower-middle-income countries bring forth the effect and role of the environment and context and its particular impact on the participation of people with disabilities (WHO 2007). Inclusion is not just a term rather “a process” covering various aspects and the key indicators like rights, participation, values,

32  Concluding Chapter: Challenges and Strategic Pathways …     667

diversity, and equality. The ultimate process to take place depends on all key indicators existing in an environment. One of the core determinants of inclusion is participation of Individuals with disabilities (IwD) in all spheres of life; that is political, public life, cultural life or leisure, sports or workforce (UNCRPD 2008). All individuals, with or without disability, have the right to lead a life of their choice in an environment that is inclusive and accessible and there is a definite role of the State Parties to assure that this opportunity is equitably available to PwD. However, the huge gap in the implementation of such legislative measures is evident through complete absence and/or scarcity of people with disabilities in various contexts and the situation seems to be even worse in the developing countries where the participation of PwD is negligible and their situation and status more vulnerable.

People with Disabilities Still the Most Excluded The presence of people with disabilities in spite of their major prevalence is quite negligible in education and workforce. The world is unlikely to fulfill one of the most modest promises to get every child into primary school (UNESCO GMR 2014) as still more than 1 million children remains out of school (WHO 2011). While enrolment in primary education across the developing world reached 90% in 2010 as less as only 2% of children with disabilities go to school in some countries (UNESCO 2010). It is found that children with disabilities are 10 times more likely not to attend school and moreover their level of schooling is below that of their peers (Report of Plan International 2013). WHO (2011) also underscores the very little or low rate of participation of children with disabilities in education and UNICEF ROSA (2003/04, p. 6) estimates that 39.4 million children with disabilities are denied access to education. When compared to other marginalized groups, school completion rates are the lowest among children with disabilities as reported by UNESCO (2010). It seems that the status of children with severe disabilities is far more likely to denied access to school (Multiple Indicator Cluster Surveys on 4 countries, UNESCO 2013). Interestingly still many regions of most countries do not have a comprehensive national system to track children with disabilities

668     S. Halder and V. Argyropoulos

who are currently out of school and/or who have been denied access to school (UNESCO GMR 2014). The high number of children with disabilities who are out of school can be attributed to a combination of factors mostly sociocultural or environmental which mostly decide ones’ inclusion or exclusion in community or participation. In spite of attracting a major population to school in the last few years, there are countries which still report a huge number of out of school pupils (OOSC), within which a major proportion corresponds to pupils with some form of disabilities varying as per categories, having individuals with autism spectrum disorder and cerebral palsy as the least represented among others (UNESCO 2015). In spite of the 3% reservation for PwD [Equal Opportunities, Protection of Rights and Full Participation Act (1995)], the top educational institutes in low resource countries like India have enrolment of less than 1% students (0.56%) with disabilities [National Center for Promotion of Employment of Disabled People (NCPEDP)]. Also, as one goes higher up the ladder toward higher education, there is complete absence or very little presence of PwD. Workforce participation is the 1st step toward full participation, opening up social inclusion, economic independence, improved health, and well-being to individuals (Hedley et al. 2016). The significant outcome of Inclusion can only be visible by equal participation of diverse members in any organization or institution, a scenario which is yet to be visible worldwide. Needless to say that the need for engaging in employment for IwD is as significant as for the general working population. Contribution through productive work offers a sense of accomplishment, competence, opportunities for socialization, facilitates contribution to society while being less dependent on government funding (Capo 2001; Chen et al. 2015; Krieger et al. 2012). It is a well-analyzed fact that once employed and financially independent, the benefits and outcome of work for IwD can be multidimensional. It is not only a source of economic independence for them but an outlet for many aspects of participation including many psychological factors much needed for well-being, undoubtedly yielding benefits beyond those of financial gain (Reform RGoW 2014). Thus, the overall impact

32  Concluding Chapter: Challenges and Strategic Pathways …     669

is wide, and is not just limited to the individual only but also to the nation and is perhaps crucial for global development. Some of the existing literature from the low resource countries provides multiple evidences of the non-participation of the PwD. India with a huge human resource (1.35 billion) being 2nd most populous country in the world has a huge global impact with a representation of 18% of world population which is a home to 9.8 million literate and employable PwD. The fact today is that out of the 1.34 crore (13.4 million) of PwD of employable age, only a quarter of them are included in the workforce and out of which may be only few in white collar jobs of their standard with an appropriate salary/perks. There is need of suitable intervention to bridge the gap, otherwise unemployed PwD will rise to 1.08 crores by 2022 (National Action plan for PwD 2015; National Career service portal, 2015–2016) and may lead to a National loss (of 5–7% GDP). The reservation policies in jobs are only limited in the government/public sector and are still not extended to the private sectors that are one of the largest job providers in India and hence their proactive nature is well-evident. Extracts of the actual practices and implementations and challenges confirm that while inclusion, as a theory, has been largely welcomed, PwD experience many inconsistencies between theory and praxis of everyday life and this phenomenon is attributed to a variety of factors. When it comes to work or employment their participation is negligible or under employed in spite of their employability and unique traits, they are not considered or preferred for leadership or upper hierarchy jobs. Henceforth in most cases either they live a dependent life or end up doing what is available to them which in most cases are jobs that are not taken by others with a minimum salary or based on daily wage earnings. In spite of their abilities and enormous capacities, some time called as “sprinter skills” like in case of ASD, they remain underemployed or unemployed due to the inability to identify or assess their positive traits as per a particular job requirement. Getting engaged in some productive work is an important aspect of a better quality of life for all, irrespective of disability. Being engaged in significant productive work not only improves and enhances their psycho-social make up like self-efficacy, self-esteem, etc. but also facilitates an independent sustainable and better quality of life for themselves including others around them.

670     S. Halder and V. Argyropoulos

Challenges and Key Indicators for Pathways: Worldwide Disparities in Terms of Inclusion Equity and Access Challenges Related to Identification, Assessment, Diagnosis, and Prevalence One of the first requirement and necessity for intervention is proper identification of the need and target areas and appropriate diagnosis. The WHO estimates 10% of the World’s total population suffering from disabilities. That means India, for example, should be having 100 million persons with disability. However the National data shows incongruence in the prevalence or identification rate. This is just one instance and such similar data would be there from various countries globally to support the fact that the existing prevalence result for each category of disability as well as an overall disability scale may be an underestimation or may not impose a real scenario and the possible reason may be multiple. However there are multiple challenges associated with identification and assessment. Identification and assessment tools still beyond the reach of most people. Standard identification and assessment tools for various categories of disabilities are available in few National Institutes and government organizations in each country but beyond the awareness of common masses, thus it is not utilized by most schools or educators or families. Due to the informal assessment practices in many cases, the prevalence of disability in terms of level of severity or types of disability may be misleading. Still many categories of disabilities like ASD for example was being accounted either in the categories like “multiple disabilities” or “other disabilities” due to lack of separate category assigned in many countries. For example, it is only now like in India with the Persons with disabilities Act (2016) that has increased the categories from the earlier 7 to 21 which include ASD as a separate category. Under such circumstances of a proper identification and assessment model, most schools and organizations implement their own assessment tools or techniques which result in a great diversity regarding processes,

32  Concluding Chapter: Challenges and Strategic Pathways …     671

evaluation reports, and intervention programs. Due to the lack of such common national protocol for identification and assessment and prevalence henceforth, schools and teachers face constant struggle and challenges to meet the needs of children and students with disabilities. Families and societies are struggling to cope with a plethora of problems due to various aspects of identification, assessment, and diagnosis (Adak and Halder 2017). Disaggregated data on prevalence; context-driven sociocultural factors. The impediments are many starting from the peculiarities of each disability and the way they are conceptualized by ordinary people as well as the understanding of the population enumerators who are entitled to pop up questions relevant to disability to the family. During population enumeration the facts shared by the responders are taken as final in some cases without verifying with concrete sources which may be severely misleading. The complex sociocultural factors and taboo prevailing in the mindset of the people of society including the stigma attached to certain types of disability in many cultural contexts also influence the prevalence data in any country/ culture and most specifically in the developing countries. The way disability is identified/explored during population enumeration has much gap or absence of reliable data on the prevalence and status of people with disabilities [UNESCO (1999); UNICEF (2013); and the most recent WHO (2011) Report]. For instance, in India, most recent estimates, based on the National Census of 2011 suggest that only 2.21% of the population has disability (Office of the Registrar General and Census Commissioner, India, 2013). The national figures seem to be gross underestimations. There is existing literature with similar examples from various other countries as well. In the developing countries where there are few provisions/governmental facilities for people with disability, there may be general tendency of the family to withhold information or providing wrong information due to ignorance or stigma attached. The influence of gender may also influence providing appropriate information to the population enumerators in some cultures.

672     S. Halder and V. Argyropoulos

Disparity with respect to definition, categorization, and conceptualization. In spite of the clear and explicit definition and classification of various types of disabilities (International Classification of Disability-11, WHO 2016; Diagnosis and Statistical Manual-V, APA 2015), there is wide variation to the understanding and conceptualization of the various types and categories of disabilities which reflects in all the steps starting from identification, assessment, or intervention (Adak and Halder 2017). There is also various issues arising due to the changing diagnostic criteria and the way it is understood and implemented by stakeholders at their local regions. Broadly, the reasons range from lack of conceptual clarity and inconsistent definitions and their understanding by various subgroups. In India after the Rights of Persons with Disabilities Act (RPWD 2016), the categories of disabilities increased from 7 to 21 now. However the Census data (India) comes only after every 10 years and the last one was in 2011. Within country estimates tend to be far less, with some suggesting that only 1.5% of the population has some type of disability (Singal 2000, cited in Singal et al. 2018). The actual and true prevalence of disability globally may be doubtful unless and until we are able to identify and diagnose all levels and forms of disability most uniformly. Methodological differences in case definition and case-finding procedures make between survey comparisons difficult to perform thus leading to global variation in prevalence estimates (Elsabbagh et al. 2012). Because significant costs are associated with prevalence studies, some have questioned whether country-specific estimates should be a priority, especially where resources are limited and priorities include other preventable life-threatening conditions (Elsabbagh et al. 2012). Many of the non-visible categories of disabilities experience tremendous challenges when it comes to categorization or tagging. For example, the term Multiple Disabilities and Vision Impairment (MDVI), no specific definition is mentioned. The main feature of “multiple” disability is the combination or interaction of disabilities and the effect of these factors on development. For this, specific attention and expertise is needed to focus on, identify, and design appropriate educational strategies and rehabilitation services (Argyropoulos and Thymakis 2014; Chen et al. 2009). Some of the type of disabilities

32  Concluding Chapter: Challenges and Strategic Pathways …     673

which are not so common or typical or mild are still not categorized or considered or identified as disability in many cultures mostly in the developing countries. In most such locations globally the people with mild forms of disabilities sometimes face tremendous challenges because their needs are overlooked and as a result when they ask for reasonable accommodations in educational institutions and communities or transportations, they usually end up in dead ends. For example, many disability definitions have got modified and changed from time to time like ASD, slow learners, and many other rare disabilities influencing many significant aspects. Henceforth the proportion of disability within each country and between different countries inevitably gets affected by this and henceforth the success of any intervention and its effectiveness remains unsatisfactory.

Non-accessibility of the Standard Assessment Tools Most of the standard diagnostic instruments and tools are very expensive and/or non-accessible (Barbaro and Halder 2016) to most people. There is also scarcity of trained personnel or professionals with required skills needed to use the instruments in many countries currently. Thus, there are fair chances of false positive or false negative cases leading to many misdiagnosed and unidentified cases. Evaluations or assessments are typically conducted at private psychological testing centers rather than by professionals or by a nationally recognized team in many cases in the school setting and students’ families pay for these services. There is no standardized and common method to assess students in order to determine disability diagnoses. For example, the latest National Census for India (Census, 2011) reports the maximum prevalence (as high as 20%) of disability in the category “other,” which means these type of disabilities either were not covered by the 7 types as mentioned or else they are doubtful of the nature of disability hence were nominated as “other.” It seems that significant movements are taking place regarding this matter but in a very slow pace. For example despite the high prevalence, Autism Spectrum Disorder (ASD) is recognized as a disability by the Government of India as late as 2016. There is still no available

674     S. Halder and V. Argyropoulos

national statistics suggesting resource availability for pre-treatment services such as screening and diagnosis. Despite optimistic calculations, most of the children with rare disabilities including ASD remain undiagnosed and thus without support by appropriate intervention programs. Services are not funneling down to the grassroots rural sectors or low resource regions as most of the work are conducted by NGO’s or parent run centers rather than on a national overall scale so it may be assumed that much still remains unknown within the 4 walls of the rural vicinity. There is scarcity or complete lack of insurance funding or government support for interventions in many countries which makes life more complex for the person with disabilities and also for the entire family. Living with a disability surely is more expensive. These exaggerate the challenges associated with having a child with disability as quality interventions become the purview of only few upper hierarchy of the social stratification ladder. In spite of the unique abilities termed as “sprinter skills” as reports data that 10% of individuals with autism spectrum disorder may have special abilities in areas like music, art, mathematical calculations, memory and manual dexterity, they remain hidden or unidentified and unexplored. However, relevant data in many well-developed countries like USA, Australia, Sweden, Denmark, and others, that with the right training and support adults with ASD has been reported to be very productive and sometimes even better and thus adding valued contribution to society and National economy (Schendel et al. 2013). While these challenges have been addressed in some countries with a strong research capacity through the development and standardization of diagnostic tools, progress has been slow in using such instruments widely within those countries themselves, let alone, within a global context, where significant cultural and linguistic variation across and within communities needs to be accounted for. There is need of a number of instruments in the process of being translated and/or validated (Elsabbagh et al. 2012). However, even in high-income countries, provisions for screening, diagnosis, and intervention are highly variable and many cases absent in community settings. Initiative and actions are required from the governmental level to cover all through a uniform protocol.

32  Concluding Chapter: Challenges and Strategic Pathways …     675

Generalization of Findings Doubtful Due to Non-representation of All Extensive literature covering various aspects of identification/ assessment and interventions are mostly based on data extracted from few most developed/resourceful countries or the most resourceful regions or location of the world (Barbaro and Halder 2016) which are basically able to afford the expense of high cost research covering prevalence of the whole country estimate. Hence, there is still long way to go before we reach a satisfactory picture of the real situation that might yield new findings and draw new foresights much needed for global solutions and global model which is yet to be unraveled. So many facts on the rare including not much exposed disabilities for example like ASD which thought to be more prone to the urban locality, more prone to females rather than males, more prone to high socioeconomic status, etc. remain highly doubtful unless and until it is substantiated with samples from rural areas and locations from low resource regions of the world. There are still many disabilities not yet explored explicitly and whatever is known is based on data from few specific countries’ data only. Elsabbagh et al. (2012) points out that the need for a population with representation of all nooks and corners for the availability of comparable estimates from different geographic regions that may enable testing challenging hypotheses regarding the etiology of many categories of disabilities. The impact of cultural influences on the presentation, development, interpretation, and diagnosis of not very commonly understood disabilities is seldom investigated (Chung et al. 2012). Research is suggestive that prevalence rates for children diagnosed with ASD, who experience challenging behaviors, vary among cultures and countries as evidenced by Chung et al.’s (2012) study reporting a prevalence rate of challenging behavior of 35.8% in Norway, 64.3% in Ireland, and 30% in South Korea. Chung and colleagues conclude that it is possible for people from different cultures to view challenging behaviors differently and this would affect the incidence, prevalence, diagnosis, and impact of a particular disability from country to country. Without the representation of those

676     S. Halder and V. Argyropoulos

still unknown or yet to be discovered makes our knowledge incomplete about many facets and thus generalization on many aspects remains doubtful.

Need-Based Assessment Model Reflecting the Strengths Rather Than the Deficits There may be need of a diagnosis based on categorization from a physiological and biological lens for any medical intervention if needed. However for educational intervention, it is vital to adopt a need-based approach/assessment for identifying the specific target areas for teaching– learning to overcome the deficit along with the strengths identified as most unique to the particular child for further facilitation. However in most cases the common practice in many countries is still based either on the medical model or providing an assessment based on deficits without pointing the strengths of the child or exploring the specific target areas. Thus teachers and parents face challenges in designing individ­ ualized educational programs (IEPs) due to the lack of strength-based indicators and target areas for effective early childhood interventions. As a result, teachers who work in inclusive settings in order to resolve their own challenges access self-mechanisms through trial and error from various possible sources in their capacities and in many cases just follow their heart for accommodating and addressing the wide array of needs and abilities of their students. All children and every single one is unique in terms of their strengths and talents. Thus as put forth by Chaiklin (2003), it is of great importance to identify as soon as possible their needs and zones of proximal development in order to develop skills and facilitate independent living. In most cases the existing commonly followed identification and assessment model reflects more the deficits rather than the strengths in many places and the state of the art is rarely a common practice in most countries. There is pertinent need to modify the commonly used model at the inception and update with the latest state of the art so that the objective and the goal is clearly and most concretely placed and followed with much focus on the strengths of the

32  Concluding Chapter: Challenges and Strategic Pathways …     677

child to facilitate the best in the child. The categorization and tagging needs to be used for the purpose of facilitating the needs of the person concerned rather than attracting taboos associated with the categories of disability as still commonly practices in most cultures and context.

Collaborative Partnership (Child–Parent– Educator–Specialists) Approach There is lack of proper organized holistic, collaborative, and cooperative approach among the specialists and professionals. For inclusion to happen in process, it is necessary that the philosophy behind “Inclusion” is understood so that the objective and goal is clearly assigned and set forward. Researchers have pointed out the virtue of this “inclusive thinking” through collaborative schemes and stress out the positive impact on learning (Davis 2013). Nevertheless, it seems that in most of the schools in developing countries and also many schools in the developed countries prevails lack of team spirit among the parents, teachers, child, and specialists to bring out the best in their child. In spite of the mandates streamlined for parent active participation for addressing the child’s need including the child’s own voices, it is not maintained in practice in the true sense of the term in most cases. Researchers have often paid insufficient attention to the perspectives of people with severe disabilities including intellectual and developmental disabilities for various reasons like difficulties associated with retrieving their responses or inability to provide reasonable accommodations or accessibility issues. There is consensus among the researchers that understanding these views is critical to creating policies and practices (Aldridge 2007). So, most of the research pertinent to complex and severe disabilities including developmental disabilities, intellectual disabilities, cerebral palsy are based on perception of their caregivers, teachers, and parents rather than of their own. However understanding the voices of PwD can be so crucial and this surely is not impossible if reasonable accommodations are made or different means of retrieving information for expressions are provided (e.g., talking mats

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in case of intellectual disabilities or ASD). Relevant research reveals the disappointment and frustration of PwD when no one ever asks them how they feel or what they prefer, whereas a lot of professionals talk and decide on behalf of them setting disability in the epicentre of discussions and decisions (Myers 2009; Myers et al. 2009). There is complete lack of considering and respecting the voices of the people with disabilities in designing their IEP hence child’s needs are not given priority while identifying the target goals. The partnership with parents in all phases of IEP development is often laid at the backdrop and also in most cases the role of parents is not functional or active rather than passive (Myers 2012). Also, in many cases an environment of competitiveness prevails rather than a collaborative or cooperative among the members of interdisciplinary teams (such as specialists of the schools) which act as a prime hindrance in facilitating the needs of the child or bringing out the child’s best. What really is needed is the implementation of comprehensive models with collaboration of all partners that would potentially lead to better understanding of the person’s needs, its abilities and capacities (Nicholas et al. 2014; Shattuck and Roux 2014).

Need of Community-Based Participatory Research (CBPR) and Multidisciplinary Partnership Community-based participatory research (CBPR) is an inquiry framework that fosters the creation of practical strategies to fully include IwD in research (Hassouneh et al. 2011; Mmatli 2009). CBPR is directed toward engaging researchers and community members as equal partners to generate knowledge that is immediately relevant and accessible to communities. This aim of academic-community partnership to develop strategies that empower community members to participate fully and not be limited to an advisory or “token” role has been put forward by many researchers (see for example, Bricher 2000; Hassouneh et al. 2011; Kliewer and Biklen 2000; Lord and Church 1998; Mmatli 2009). CBPR seeks to improve the responsiveness of science to

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community priorities and foster positive community change through equitable research collaborations between researchers and community members. Continuous and consistent University/Institution–Community partnership can expedite the process of inclusion to a far extent. However in many Institutes/Universities, faculty members or researchers are undertaking researches without much community outreach or link with actual community. Many researches in such cases lack the realistic purview of the field or lack many practical facets. On the other hand there is also lack of science and technology–social science partnership in developing or designing technological solutions needful for inclusion. For example, many of the assistive technologies are developed and designed solely by the software developers or engineers without consultation or background study of the personalized needs and the psychological or philosophical part that may be essential and may create unnecessary hindrances. These can be simply avoided with positive multidisciplinary brainstorming, partnership, and collaborations with the participants/client need. Technological advances are thus mostly developed without a team work with desired experts from allied subjects or disciplines (Chavarriaga et al. 2014; Hochstenbach-Waelen et al. 2012). Many research outcomes are not extended to practices in community where it is most needed even after fruitful research outcome and publication thereafter. Researchers conducting educational research in isolation without getting feedback or input from parents and families may lack the actual contribution and thus lack future prospects for improvements and enhancements. However, some proposed solutions are not suitable for people in emerging and developing countries since the sociocultural aspects of the populations are not taken into account in the design process. In addition to this, there is little interaction among professionals of different disciplines or such interaction only takes place at later stages of development; e.g., clinical experts or physical therapists are involved to test engineering solutions. For this, many researchers conclude that only strong multidisciplinary collaboration may prove to be pivotal in the direction of an effective inclusion. The interaction process is not easy because the classical education in the university is disciplinary and

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there are few scopes of such genuine interdisciplinary collaborations. Without a holistic, national plan it is likely that inequitable access will prevail, with significant differences between people living in different locations or having different impairments and those available resources will not be utilized optimally.

Shortage of Skilled Teachers for Inclusion School Inclusion is a common slogan all over the world currently, which got special stir and emphasis with the UNCRPD (2008). However there are many challenges and concerns for implementation of inclusive practices at various layers in society and culture and thus there are scattered reports on the practical implementation of the policies nationally and moreover it’s also taking a long time for a visible noteworthy difference. One of the prime facilitator of inclusive growth and development still remains the teacher who is yet to develop or get trained in all the needed skills for an inclusive classroom due to the lack of an inclusive curriculum/teacher preparation course with a much practical focus. Teachers, most of the time, are struggling hard to address the varied and unique needs of the students due to their skill deficits and lack of proper teacher training programs and courses that focus more on the practical implementation in action in an inclusion classroom. Most teachers remain without any training while few other are getting themselves educated in specific areas as per their requirement but then they may lack overall skills. There is lack of a model curriculum of teacher educators for an inclusive classroom with the requisite practical facets. Most country teacher training courses are either following courses designed for teaching–learning for neuro-typical/general students which covers the course without much needed practical aspects of inclusive approaches for people with disabilities/special needs. National standards for teacher training and the teacher preparation courses vary considerably between countries, and are often inadequate. Teacher training for regular teachers also rarely prepares teachers for working in diverse classrooms, and in particular does not equip them with the skills and thus teachers lack the confidence to address their needs. There is a global shortage of teachers,

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particularly of teachers who are sufficiently trained and motivated to include children with diverse needs including disabilities in inclusive/ regular schools as there is no such comprehensive teacher preparation program or course that covers the strategies needed for teachers in action in a real inclusion classroom. In many instances most teacher training courses are not well-organized to confront the needs of special needs students in a real classroom and most courses just cover mere theoretical facets of the course (Taweechaisupapong 2015). Henceforth teachers lack real practical skills for implementation in classroom. A comprehensive teacher education program or course that can facilitate the need of teachers teaching in an inclusion classroom is yet to be tailor made.

Myths and Misconception Associated with Abilities of PwD There is a lot of myth and prejudices about the PwD which in most cases focuses on the “disabilities” rather than the “abilities” of PwD. There is a poignant need to bridge the gap between employers, service providers, and employable people with disabilities, by facilitating information disseminations, orientations, awareness and removal of myths, and misconception of the general public/masses regarding various abilities of people with disabilities. There is strong need of generating awareness among the service providers/public and private bodies including the general masses with evidence-based facts and informed services across countries at various levels. There is very strong necessity to expose the symbiotic mutual benefits and breaking the reluctance of the employers for opening job opportunities including supported programmes creating inclusive work environments.

Future Directions The future directions lay forward toward developing an inclusive Model of Service Delivery and a need-based approach which will be able to address all aspects much needed. “Reaching the most rather just few”

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may be the slogan through delivering cost-effective low-tech services worldwide. History witness most of the best solutions or practices coming out of the parents. Who else rather than the parents want the best for their child and then extending it forward to many others. Developing an International Parent support group connecting parents worldwide through national groups can provide a much wider platform and open forum for possible knowledge dissemination and exchange. Development of Knowledge generation and dissemination through Open Source and Open access is a must at this global technological revolution era providing the much awaited International forum (Barbaro and Halder 2016). When the target population is a huge one and with limited fund the solution can be extending services to selective few rather than to all through carefully planned capacity building program in various tiers. With child-centric approach that we started long back, the strategic implementation should be by designing and following Individualized educational programs (IEPs) as common practice in all educational environments for all students and not just for people with special needs. IEP design and implementation training should form a core aspect of every teacher education/preparation programs all over the world. Focus on needbased assessment rather than prioritizing tagging based on category of disability will assist the teacher educator a guideline regarding the target areas to focus without marginalizing and putting extra burden on the child or person for his/her disability or level of disability. Of course Inclusion to take place in process needs reallocation of funding that prioritizes inclusive education (National and International) for all schools with needed resources be in human or infrastructural. Awareness and orientation at various levels and aspects of population and community from various parts of society can expedite the process of inclusion in the most possible concrete and strategic way. The lack of evidence from the majority of the world’s population suggests a critical need for further research and capacity building in lowand middle-income countries. A number of parent and professional led groups as well as governmental agencies have been established around the world, who are actively working on creating awareness, services, and advocacy for PwD. When confronted with employers in India (author in an open forum, Award ceremony, Feb 2018), it was found that the

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barriers are not just attitudinal but there also still lies a lot of misconceptions, myths, unawareness, and also disbelieves regarding the abilities of people with disabilities even among the most elite and educated class of society be it any country or culture. The true outcome of inclusion can only be visible with equal participation of diverse members in any organization or institution. However about 20% of all youth in the developing world are “idle,” i.e., not in education, employment, or training. The world bank reported as one of the main priorities to turn the young generations as employment generation and as future agents of change as they are the prime determinants of improving quality of life. Thus increased attention to improving participation rates of young people is needed to ensure that they acquire the knowledge, capacities, skills, and ethical values to fulfill their role as agents of development, good governance social inclusion, tolerance, and peace. Reducing employment gap between people with and without disabilities would result in rise to GDP of 0.85% (Deloitte Access Economics 2011).

Conclusion Any thoughts on the idea of neuro-diversity pride: that is, that those who are wired differently from what is considered the norm, are not BAD, or DISABLED and don’t need “fixing”, but merely …different? (Harmon 2004)

Currently we are on the verge of Neuro-diversity movement (Arnold 2017; Various, n.d. 2015) which is about accepting and celebrating differences. Proponents and activists reject the idea of cure and promote the acceptance and celebration of difference and diversity. Disability is just a way of perception and is relative. At the same time whether disability is temporary or become a permanent one depends upon the context and the environment and their members. Accepting diversity and individual differences should form a core part of every curriculum in any culture right from the beginning in order to instill in young budding minds the core aspect of “inclusion.” Various activities and action

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oriented engagements should form a core part of whole day at school in order to inherently bring out the desired philosophy at work. Once accepting differences and diversity becomes a part and parcel of life, implementation of inclusive transformation may happen spontaneously in various ways. Enormous work needs to be put in practice at every tier and by every community and corners for inclusion to get visible in a concrete form all over. There is need of a holistic model covering identification/assessment, intervention on the one hand, and on the other hand strategic actions needed by all professionals from different subjects and discipline for an inclusive environment to facilitate including the attitudinal or context-driven. There is need of a mandatory course content in each and every course or study that teaches acceptance of diversity and the mutual benefits of the same in society. There is need of inclusion of such action oriented programs, activities, and practices as a mandatory part of every course/study that infuses from within the true sense of inclusion. Inclusion cannot be brought in isolation or through a separate curriculum or course from outside rather it should be one of the essence of each course so much so that there comes a time we need not have to use the term “inclusion” at all, the way that it is understood and needed today.

References Adak, B., & Halder, S. (2017). Systematic Review on Prevalence of Autism Spectrum Disorder with Respect to Gender and Socio-economic Status. Journal of Mental Retardation, OMIC Group, 3(1). https://doi.org/10.4172/ 2471-271x.1000133. ISSN: 2471-271X. Aldridge, J. (2007). Picture This: The Use of Participatory Photographic Research Methods with People with Learning Disabilities. Disability & Society, 22, 1–17. American Psychiatric Association. (2015). DSM: History of the Manual. Retrieved from http://www.psychiatry.org/practice/dsm/dsm-history-of-themanual. Google Scholar. Argyropoulos, V., & Thymakis, P. (2014). Multiple Disabilities and Visual Impairment: An Action Research Project. Journal of Visual Impairment and Blindness, 108(2), 163–167.

32  Concluding Chapter: Challenges and Strategic Pathways …     685

Arnold, L. (2017). A Brief History of “Neurodiversity” as a Concept and Perhaps a Movement. Autonomy, a Critical Journal of Interdisciplinary Autism Studies, 1(5). Barbaro, J., & Halder, S. (2016). Early Identification of Autism Spectrum Disorder: Current Challenges and Future Global Directions. Current Development Disorder Report, February 2016, 1–8 (Springer Special Issue). https://doi.org/10.1007/s40474-016-0078-6.  http://link.springer.com/ article/10.1007/s40474-016-0078-6?wt_mc=internal.event.1.SEM. ArticleAuthorOnlineFirst. Bricher, G. (2000). Disabled People, Health Professionals, and the Social Model of Disability: Can There Be a Research Relationship? Disability & Society, 15, 781–793. Capo, L. C. (2001). Autism, Employment, and the Role of Occupational Therapy. Work, 16, 201–207. pmid:12441449. Chaiklin, S. (2003). The Zone of Proximal Development in Vygotsky’s Analysis of Learning and Instruction. In A. Kozulin, B. Gindis, V. Ageyev, & S. Miller (Eds.), Vygotsky’s Educational Theory and Practice in Cultural Context (pp. 39–63). Cambridge: Cambridge University Press. Chavarriaga, R., et al. (2014). Multidisciplinary Design of Suitable Assistive Technologies for Motor Disabilities in Colombia. In IEEE Global Humanitarian Technology Conference (GHTC 2014) (pp. 386–391). San Jose, CA. https://doi.org/10.1109/ghtc.2014.6970310. Chen, J. L., Leader, G., Sung, C., & Leahy, M. (2015). Trends in Employment for Individuals with Autism Spectrum Disorder: A Review of the Research Literature. Review Journal of Autism and Developmental Disorders, 2(2), 115–127. Chen, D., Rowland, C., Stillman, R., & Mar, H. (2009). Authentic Practices for Assessing Skills of Young Children with Sensory Impairments and Multiple Disabilities. Early Childhood Services, 3(4), 323–338. Chung, K. M., Woohyun, J., Ben-Itzchah, E., Zachor, D., Furniss, F., Heyes, K., et al. (2012). Cross Cultural Differences in Challenging Behaviors of Children with Autism Spectrum Disorders: An International Examination Between Israel, South Korea, the United Kingdom, and the United States of America. Research in Autism Spectrum Disorders, 6(2), 881–889. https://doi. org/10.1016/j.rasd.2011.03.016. Davis, J. M. (2013). Supporting Creativity, Inclusion and Collaborative Multiprofessional Learning. Improving Schools, 16(1), 5–20. Deloitte Access Economics. (2011). The Economic Benefits of Increasing Employment for People with Disability. Canberra, ACT: Author.

686     S. Halder and V. Argyropoulos

Elsabbagh, M., Divan, G., Koh, Y.-J., Kim, Y. S., Kauchali, S., Marcín, C., Montiel-Nava, C., Patel, V., et al. (2012). Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Research, 5(3), 160–179. Hassouneh, D., Alcala-Moss, A., & McNeff, E. (2011, June). Practical Strategies for Promoting Full Inclusion of Individuals with Disabilities in Community-Based Participatory Intervention Research. Research in Nursing & Health. Author manuscript; available in PMC 2012 Sep 9, Research in Nursing & Health, 34(3), 253–265. Harmon, A. (2004). The Disability Movement Turns to Brains. The New York Times. Hedley, D., Uljarevic, M., Cameron, L., Halder, S., Richdale, A., & Dissanayake, C. (2016). Employment Programs and Interventions Targeting Adults with Autism Spectrum Disorder: A Systematic Review of the Literature. Journal of Autism, 1–13. Hochstenbach-Waelen, A., Seelen, H. A., et al. (2012). Embracing Change: Practical and Theoretical Considerations for Successful Implementation of Technology Assisting Upper Limb Training in Stroke. Journal of Neuroengineering and Rehabilitation, 9(1), 1–12. Kliewer, C., & Biklen, D. (2000). Democratizing Disability Inquiry. Journal of Disability Policy Studies, 10, 186–206. Krieger, B., Kinebanian, A., Prodinger, B., & Heigl, F. (2012). Becoming a Member of the Workforce: Perceptions of Adults with Asperger Syndrome. Work, 43(2), 141–157. Lord, J., & Church, K. (1998). Beyond “Partnership Shock:” Getting to ‘Yes’, Living with ‘No’. Canadian Journal of Rehabilitation, 12, 113–121. Mmatli, T. O. (2009). Translating Disability-Related Research into EvidenceBased Advocacy: The Role of People with Disabilities. Disability and Rehabilitation, 31, 14–22. Myers, K. (2009). College Students with Visual Disabilities: Preferences for Effective Interaction. Germany: VDM Verlag Publications. Myers, K. A. (2012). Creating a Culture of Inclusion: Listening to the Voices of People with Disabilities, 53. Myers, K., Jenkins, J., & Pousson, M. (2009). Social Norms and Disability. ACPA Dev. Creating a Culture of Inclusion: Listening to the Voices of People with Disabilities. Nicholas, D. B., Attridge, M., Zwaigenbaum, L., & Clarke, M. (2014). Vocational Support Approaches in Autism Spectrum Disorder: A Synthesis Review of the Literature. Autism, published online before print. https://doi. org/10.1177/1362361313516548.

32  Concluding Chapter: Challenges and Strategic Pathways …     687

Plan International. (2013). Access to Education and Protection of Girls and Boys with Disabilities in Sierra Leone, Togo, Guinea and Niger. A Research Project by Plan International’s West African Regional Office, Executive Summary Paper, Plan International. Reform RGoW. (2014). A New System for Better Employment and Social Outcomes: Interim Report. Canberra: Department of Social Services. Schendel, D., et al. (2013). The International Collaboration for Autism Registry Epidemiology (ICARE): Multinational Registry-Based Investigations of Autism Factors and Trends. Journal of Autism Development Disorders, 43, 2650–2663. https://doi.org/10.1007/s10803-013-1815-x. Shattuck, P. T., & Roux, A. M. (2014). Commentary on Employment Supports Research. Autism, published online before print. https://doi. org/10.1177/1362361313518996. Simeonsson, R. J. (2006). Children’s Rights and ICF-CY Documentation. Paper Presented at the Meeting of WHO Collaborating Centres for the Family of International Classifications, Tunis, Tunisia. Singal, N., Lynch, P., & Johansson, S. T. (Eds.). (2018). Education and Disability in the Global South: New Perspectives from Africa and Asia. Bloomsbury Publishing. Taweechaisupapong, M. (2015). Teachers Views About Teacher Training Towards Inclusive Education. Master’s Dissertation, Department of Special Needs Education, University of Oslo. Taylor, J. L., & Seltzer, M. M. (2011). Employment and Post-secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. Journal of Autism and Developmental Disorders, 41(5), 566–574. https://doi.org/10.1007/s10803-010-1070-3. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. (1995). Available from http://www.disabilityaffairs. gov.in/upload/uploadfiles/files/PWD_Act.pdf. Last accessed on 27 Jan 2017. The Rights of Persons with Disabilities Act. (2016, December 28). Gazette of India (Extra-Ordinary). Available from http://www.disabilityaffairs.gov.in/ upload/uploadfiles/files/RPWD/ACT/2016.pdf. Last accessed on 27 Jan 2017. UN Department of Economic and Social Affairs. (2008). The UN Convention on the Rights of Persons with Disabilities. New York: UN DESA. Retrieved from http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf. UNESCO. (1999). Education for All: The Year 2000—Assessment. Pakistan Country Report. Paris: UNESCO. UNESCO. (2010). Education for All Global Monitoring Report—Reaching the Marginalised. Paris: UNESCO.

688     S. Halder and V. Argyropoulos

UNESCO. (2012). Situation Analysis of the Education Sector. Pakistan: UNESCO. UNESCO. (2013). http://www.unesco.org/new/en/inclusive-education/. UNESCO. (2014). Education for All Global Monitoring Report—Teaching and Learning: Achieving Quality for All. Paris: UNESCO. UNESCO Institute for Statistics (UIS) and United Nations Children’s Fund (UNICEF). (2015). Fixing the Broken Promise of Education for All: Findings from the Global Initiative on Out-of-School Children. Montreal: UIS. http:// on.unesco.org/oosci-global. UNICEF. (2013). State of the World’s Children—Children with Disabilities. New York: UNICEF. UNICEF ROSA. (2003/04). Children with Disabilities. Towards Inclusive Education in South Asia. Consolidated Report. New Delhi: UNICEF. UNICEF ROSA. (2012). WASH for School Children. Provisional Draft. Stateof-the-art in Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan and Sri Lanka. Nepal: UNICEF ROSA. Various. (n.d.) (2015). Wikipedia, Neurodiversity. Retrieved April 21, 2015, from http://en.wikipedia.org/wiki/Neurodiversity. WHO. (2007). International Classification of Functioning, Disability and Health: Child and Youth Version. Geneva, Switzerland: WHO Press. https:// www.jagranjosh.com/current-affairs/national-action-plan-for-skill-trainingof-persons-with-disabilities-launched-in-new-delhi-1426940069-1. World Health Organization. (2016). International Statistical Classification of Diseases and Related Health Problems, 10th Revision. ICD-10 Version: 2016. Geneva, Switzerland: Author. Retrieved from http://apps.who.int/ classifications/icd10/browse/2016/en. World Health Organization & World Bank. (2011). World Report on Disability 2011. Geneva: World Health Organization. http://www.who.int/iris/ handle/10665/44575.