Article 33 of the un Convention on the Rights of Persons with Disabilities : National Structures for the Implementation and Monitoring of the Convention [1 ed.] 9789004220829, 9789004220805

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Article 33 of the UN Convention on the Rights of Persons with Disabilities

Article 33 of the UN Convention on the Rights of Persons with Disabilities National Structures for the Implementation and Monitoring of the Convention

Edited by

Gauthier de Beco

LEIDEN • BOSTON 2013

Library of Congress Cataloging-in-Publication Data Article 33 of the UN Convention on the Rights of Persons with Disabilities : national structures for the implementation and monitoring of the convention / edited by Gauthier de Beco.   pages cm  Includes bibliographical references and index.  ISBN 978-90-04-22080-5 (hardback : alk. paper) -- ISBN 978-90-04-22082-9 (e-book) 1. People with disabilities--Legal status, laws, etc.--Europe. 2. International and municipal law--Europe. 3. Convention on the Rights of Persons with Disabilities and Optional Protocol (2007) I. De Beco, Gauthier, editor of compilation.  KJC3490.A97 2013  342.08’7--dc23                             2013003939

This publication has been typeset in the multilingual “Brill” typeface. With over 5,100 characters covering Latin, IPA, Greek, and Cyrillic, this typeface is especially suitable for use in the humanities. For more information, please see www.brill.com/brill-typeface. ISBN 978-90-04-22080-5 (hardback) ISBN 978-90-04-22082-9 (e-book) Copyright 2013 by Koninklijke Brill NV, Leiden, The Netherlands. Koninklijke Brill NV incorporates the imprints Brill, Global Oriental, Hotei Publishing, IDC Publishers and Martinus Nijhoff Publishers. All rights reserved. No part of this publication may be reproduced, translated, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior written permission from the publisher. Authorization to photocopy items for internal or personal use is granted by Koninklijke Brill NV provided that the appropriate fees are paid directly to The Copyright Clearance Center, 222 Rosewood Drive, Suite 910, Danvers, MA 01923, USA. Fees are subject to change. This book is printed on acid-free paper.

CONTENTS Foreword��������������������������������������������������������������������������������������������������������������������vii Gerard Quinn Acknowledgements��������������������������������������������������������������������������������������������������ix Biographies�����������������������������������������������������������������������������������������������������������������xi Editorial Introduction����������������������������������������������������������������������������������������������1 Gauthier de Beco PART ONE

THEORETICAL PART 1. National Structures for the Implementation and Monitoring of the UN Convention on the Rights of Persons with Disabilities���������������������������������������������������������������������������������������������������9 Gauthier de Beco and Alexander Hoefmans PART TWO

CASE STUDIES 2. Implementation of Article 33 CRPD in Denmark: The Sails Are up, but Where is the Wind?�������������������������������������������������������������������� 69 Maria Ventegodt Liisberg 3. Implementation of Article 33 CRPD in the United Kingdom: The Need to Consolidate Civil Society Engagement������������������������������� 97 Rachel Murray and Kelley Johnson 4. Implementation of Article 33 CRPD in Italy: Magna Pars est Profectus Velle Proficere����������������������������������������������������������������������������������119 Delia Ferri 5. Implementation of Article 33 CRPD in Slovenia: A Feeling of Confusion�����������������������������������������������������������������������������������������������������149 Aleksandra Tabaj and Cveto Uršič 6. Implementation of Article 33 CRPD in Austria: An Evolving Sense of Action������������������������������������������������������������������������������������������������171 Marianne Schulze

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7. Implementation of Article 33 CRPD in Spain: A Rather Erratic and Improvised Experience�����������������������������������������������������������193 Francisco J. Bariffi ANNEX  UN Convention on the Rights of Persons with Disabilities������������������213  Principles relating to the status of national institutions for the promotion and protection of human rights (Paris Principles)����������������������������������������������������������������������������������������������247 Index�������������������������������������������������������������������������������������������������������������������������251

FOREWORD Oliver Wendell Holmes once said that general principles don’t solve hard cases. What he meant by this was that abstractions need to be given flesh before they can have an impact. Indeed, he went so far as to suggest that a healthy dose of ‘cynical acid’ should be poured over abstractions to see if anything useful remains. The spirit of Oliver Wendell Holmes pervades the UN Convention on the Rights of Persons with Disabilities. And this book brings that spirit to life. International treaties serve many different purposes. Symbolically, they admit a group to the protectorate. Practically, they afford lawyers with tools with which to challenge power. But at a deeper level they announce and then embed a worldview which will hopefully force an ongoing process of self-examination and drive a process of change. This process of change is actually the key thing especially for a group as invisible as people with disabilities. This implies a theory of change—a theory of the dynamics of change and how general abstractions can be made real. The drafters of the UN disability convention knew this. And, mindful of the almost disembodied nature of international legal rules, they sought practical ways of ensuring that the abstractions could find traction where it matters most in the domestic legal and policy system. Famously, Article 33 throws open a window whereby the norms of the convention—as well as the hitherto hidden voices of persons with disabilities themselves—colour the processes of change at the domestic level. Falling between stools is a minor irritant for most people. But for people with disabilities it causes devastating effects. That is why a core ‘focal point’ as well as ‘coordination mechanism’ within Government is so important in the field of disability. And Article 33 gives effect to the old Russian saying of ‘trust but verify.’ If Article 33 didn’t demand an independent monitoring mechanism at the domestic level it would have to be invented. It is gratifying to see national human rights institutions begin to step up to the monitoring demands of Article 33 which symbolises a new stage in the relationship between disability groups and mainstream human rights organisations which has been somewhat strained in the past. And the active involvement of persons with disabilities and their representative organisations in the policy process as well as in decisionmaking affecting them offers a more sustainable path to rational policy

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making. This triangulation between Government, independent monitoring mechanisms and civil society is the engine room of the convention. If successfully embedded in the national architecture of power it will carry the social model of disability right to the heart of power. This book is a very important contribution to our understanding about the art and science of Article 33 arrangements. We will know it works when a self-sustaining process of reflection and change is built in as a reflex in our systems of governance. This book will enable all those interested in using the convention as an engine of real change to better understand how the domestic policy architecture can be arranged to maximum effect. No one country has this right. Nor will any country ever have it fully right. But, as the contents of this book demonstrates, many countries are on a voyage toward better domestic arrangements to secure change. In the long term, this will probably prove more important than the substantive content of the convention. All can learn from this book and I commend the editor and contributors for a very important contribution to the process of change. Gerard Quinn Centre for Disability Law & Policy National University of Ireland, Galway

ACKNOWLEDGEMENTS There are several people I would like to thank for their contribution to the publication of this book. First of all, I am indebted to the Belgian Ministry of Social Affairs for having commissioned Alexander Hoefmans and me with writing a Background Document on Article 33 CRPD for the Work Forum for the Implementation of the UN Convention on the Rights of Persons with Disabilities organised by the Belgian Presidency of the EU and the European Commission in Brussels, Belgium, on 18–19 November 2010. This gave us the opportunity not only to undertake a thoughtful examination of the national structures for the implementation and monitoring of the Convention but also to meet many people working for the different bodies set up under Article 33 CRPD. I am particularly grateful to Greet Van Gool and Frans Delie, then working for the cabinet of the State Secretary for Persons with Disabilities, for their collaboration with us. The first chapter of this book is an updated version of this Background Document. I also wish to thank the contributors who put their efforts into examining many issues in detail and who had to collect a lot of information for their chapter. Their patience in responding to my questions and their determination in providing an in-depth analysis of the implementation of Article 33 CRPD in their countries were key to the realisation of this project. I am also indebted to Lisa Waddington and Alexander Hoefmans who commented on the list of questions to the contibutors as well as Magdolna Birtha who participated in reviewing the draft versions of the case studies. I am also grateful to the Institute for Human Rights of the University of Leuven for providing me with a postdoctoral mandate, which give me the time to finalise the publication of the book. Lastly, I express my infinite gratitude to Aurélie Adam, my wife, whose unfailing care and support made my project possible. Gauthier de Beco

BIOGRAPHIES Franciso j. Bariffi has a Degree in Law (LLB), National University of Mar del Plata, Argentina, and a Master in Human Rights Law (LLM), University Carlos III of Madrid, Spain. He is Deputy Director of the Center on Human Rights Research and Education, National University of Mar del Plata, Argentina, Lecturer in constitutional law at the National University of Mar del Plata, Argentina, Visiting Professor of the University Carlos III of Madrid, Spain. He is also Academic Coordinator of the Ibero-American Network of Experts on the UN Convention of the Rights of Persons with Disabilities, Legal Attorney and practitioner in non-discrimination, disabilities and international law issues, Director of the Legal Clinic of Disability and Human Rights of the Center on Human Rights Research and Education, National University of Mar del Plata, Argentina, and legal consultant in disability issues for the ONCE Foundation, Spain. He is a former legal advisor to the Spanish delegation during the Ad-Hoc Committee on the UN Convention on the Rights of Persons with Disabilities. Gauthier de Beco holds a J.D. from the University of Leuven, an LL.M. from the University of Nottingham and a Ph.D. in Law from the University of Louvain. He is currently post-doctoral researcher at the Institute for Human Rights of the University of Leuven where he does research on national human rights institutions and the UN Convention on the Rights of Persons with Disabilities (CRPD). He previously worked for the Belgian Ministry of Justice and the Belgian Centre for Equal Opportunities and Opposition to Racism. He is the author of many publications in the field of human rights including a monograph on Non-Judicial Mechanisms for the Implementation of Human Rights in European States (Bruylant, 2010) and an edited volume on Human Rights Monitoring Mechanisms of the Council of Europe (Routledge, 2012). Gauthier de Beco is also a regular consultant on Article 33 CRPD to the Office of the UN High Commissioner for Human Rights (OHCHR) and several NGOs. He is a member of the Working Group on the Role of the EU in UN Human Rights Reform (COST Action IS0702) and of the editorial board of the Revue trimestrielle des droits de l’homme. Delia Ferri received her LL.B. in 2003 from the University of Verona summa cum laude. In 2007, she obtained a Doctorate in European and

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Italian Constitutional Law from the University of Verona. Currently, she is adjunct assistant-professor at the Faculty of Law at the University of Trento. Her research interests lie in EU constitutional law, EU law and disability law. She has participated in various projects involving both academic and applied policy-oriented research in these areas. Delia Ferri is also a qualified attorney at law and member of the Verona Bar. She works of counsel for a law firm in Verona and as an independent legal consultant for clients including civil society, NGOs, and international law firms. Alexander Hoefmans holds a law degree from Ghent University and holds a postgraduate degree both in international relations and conflict management (Catholic University of Leuven) and in Eastern European studies (Ghent University and Catholic University of Leuven). He obtained his degrees magna cum laude. He is currently advisor to the Belgian Minister of Justice, among others on human rights issues. Between 2004 and 2011, he was working as a Human Rights Advisor at the Belgian Ministry of Justice. He was national liaison officer to the European Commission against Racism and Intolerance of the Council of Europe as well as to the Fundamental Rights Agency of the European Union. He was also Co-Agent of the Belgian government to the European Court of Human Rights. In 2010, he presided over the Working group on Fundamental Rights of the Council of Ministers during the Belgian EU Presidency. He was also part of the Presidency team responsible for the negotiations on the CRPD Code of Conduct and the ratification of the CRPD by the EU. He joined the Research group on Fundamental Rights and Constitutionalism at the Free University of Brussels as a freelance researcher in 2008. Kelley Johnson is Professor of Disability Policy and Practice and Head of the Norah Fry Research Centre at the University of Bristol. She is an Australian academic who has worked with people with learning disabilities for more than 15 years. Prior to her appointment at the University of Bristol, she was a Marie Curie Fellow at the National Institute for Intellectual Disability at Trinity College Dublin, Republic of Ireland. She was responsible for a national project which focused on the inclusion of people with learning disabilities in research about issues important to them in their lives. Rachel Murray, LLB (Leicester), LLM (Bristol), PhD (University of West of England) is Professor of International Human Rights Law, University of Bristol. Her specialist areas are human rights in Africa, particularly the

biographiesxiii African Charter and its Commission and Court on Human and Peoples’ Rights and the African Union, national human rights institutions, the Optional Protocol to the UN Convention Against Torture (OPCAT) and implementation. She has written in this area, including books with Hart Publishing and Cambridge University Press (Optional Protocol to the UN Convention Against Torture, OUP, 2011; The Role of National Human Rights Institutions at the International and Regional Levels, Hart Publishing, 2007; Human Rights in Africa, from Organization of African Unity to African Union, Cambridge, 2004; The African Charter on Human and Peoples’ Rights. The System at Work, with Malcolm Evans, Cambridge, 2008; The African Commission on Human and Peoples’ Rights and International Law, Hart Publishing, 2000), and articles in leading legal human rights journals. She also advises organisations and individuals on how to use the African human rights system, including drafting cases and participating in its meetings. She is on the editorial board of a number of journals including the Journal of African Law and African Journal of International and Comparative Law. She has held two major grants with the AHRC and now directs the Human Rights Implementation Centre at the Bristol Law School. She is a member of the Board of the human rights organisation, Interights, a Fellow of the Human Rights Centre at the University of Essex and a member of the AHRC’s Peer Review College. Marianne Schulze studied law at the University of Sydney, Australia, and the University of Vienna, Austria and international human rights at the University of Notre Dame du Lac. She was a monitor, analyst and reporter in the CRPD’s Ad Hoc Committee and developed a text, ‘Understanding the Convention on the Rights of Persons with Disabilities’, which was published online by Handicap International. As freelance Australian-Austrian human rights consultant based in Vienna, she serves as the inaugural chair of the Austrian CRPD Monitoring Committee. Aleksandra Tabaj, M. Sc., graduated in sociology from the Faculty of Social Sciences in Ljubljana, Slovenia and received a Master’s degree at the Faculty of Organisation Sciences, Maribor, Slovenia. She worked at the Government Office of Persons with Disabilities and Ministry of Labour, Family and Social Affairs—Directorate of Persons with Disabilities. She was a member of the Ad hoc Committee for the preparation of the UN Convention on the Rights of Persons with Disabilities and a member of the Slovenian team for the Presidency in 2008. At present, she is the head of the Development Centre for Employment Rehabilitation at the

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University Rehabilitation Institute of the Republic of Slovenia and a PhD student, engaged mainly in researches. Her main areas are vocational training and employment of persons with disabilities besides human rights for persons with disabilities. She is the author of more than 70 articles, researches and lectures. Cveto Uršič, B.Sc.LL. and M.Sc. in sociology, is employed at the Ministry of Labour, Family and Social Affairs, Slovenia. From 2005 to 2010 he was director general at the Directorate for Persons with Disabilities at the same ministry. From 1984 to 2005, he worked as the vocational rehabilitation programs director at the University Rehabilitation Institute – Soča, Republic of Slovenia. His research bibliography includes over 230 documents. For more than 25 years, he has been involved in the work of a number of disability organisations. He was the head of the Slovenian delegation at the negotiations for the UN Convention on the Rights for Persons with Disabilities and of the ministerial organisation committee for disability policy dealing with Slovenian presidency to the EU. At present, he is a representative of Slovenia at the High Level Group (HLG) on Disability in the EU and a representative of Slovenia in the Council of Europe. From 2008 to 2010 he was a member of the inaugural UN Committee on the Rights of Persons with Disabilities. Maria Ventegodt Liisberg is team leader of the disability team at the Danish Institute for Human Rights. She received a PhD from Maastricht University on the employment of persons with disabilities from a human rights perspective in October 2011. She received a law degree from the University of Copenhagen in 1996. Since then she has worked in the Danish Immigration Service from 1996 to 1998, as a Young National Expert at the EU Delegation in Beijing from 1998 to 2001 and since 2001 at the Danish Institute for Human Rights. She has published her thesis as well as articles on inclusion of persons with disabilities on the labour market.

EDITORIAL INTRODUCTION Gauthier de Beco The UN Convention on the Rights of Persons with Disabilities (CRPD or Convention) is not only the first international human rights treaty of the twenty-first century. In addition to codifying the social model of disability in international human rights law, the CRPD provides for national structures for the implementation and monitoring of the Convention. While previous international human rights treaties focussed exclusively on international monitoring mechanisms, Article 33 CRPD requires that States Parties: 1) designate focal points and, if necessary, coordination mechanisms; 2) designate or establish independent mechanisms and; 3) guarantee the participation of civil society. By laying down the national structures for its implementation and monitoring, the CRPD has the potential to narrow the gap between international human rights law and the lives of persons with disabilities. States Parties (and future States Parties) are currently examining how to implement Article 33 CRPD, but they lack concrete guidelines and examples to do so because of the unprecedented and innovative nature of this provision. Most policy makers are still trying to fully understand their new obligations under the Convention and are looking for thorough expertise on the subject. Many conferences are being organised and studies are being commissioned but they have been unable to provide sufficient answers to the myriad of questions raised by the national structures that are to be put in place by the States Parties. The participatory nature of the Convention, which is another of its characteristics, also implies that a broad range of other stakeholders have to be involved in the implementation of Article 33 CRPD. These stakeholders include not only civil society organisations and organisations of persons with disabilities in particular but also the wide range of independent bodies and experts which must be given a role in the implementation and monitoring of the Convention. The purpose of this book is therefore to provide policy makers, independent bodies, experts, researchers, students as well as persons with disabilities and their representative organisations with a thorough examination of the national stuctures for the implementation and monitoring of the CRPD backed up by examples in several States. It is divided into two parts: a theoretical and a practical.

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The first part is the theoretical part which briefly discusses the background of the topic and analyses the three paragraphs of Article 33 CRPD. This is an updated version of the Background Document on Article 33 CRPD written by Gauthier de Beco and Alexander Hoefmans for the Work Forum for the Implementation of the UN Convention on the Rights of Persons with Disabilities organised by the Belgian Presidency of the EU and the European Commission in Brussels, Belgium, on 18–19 November 2010. The second part is the practical part which consists of case studies on six EU Member States. The following States are examined: Denmark, the United Kingdom, Italy, Slovenia, Austria and Spain. These States have been chosen in order to highlight the diversity which exists within the various jurisdictions. All of them have ratified the CRPD and implemented Article 33 CRPD. The purpose is to give a detailed account of the national structures for the implementation and monitoring of CRPD in the six EU Member States. This is done by an in-depth analysis of the implementation of Article 33 CRPD, from the process of ratification of the Convention to the evaluation of the first State report by the UN Committee on the Rights of Persons with Disabilities. Particular focus is placed on the participation of persons with disabilities. In addition, the chapters may include recommendations for improvements. The idea is to see whether through Article 33 CRPD changes have taken place that could accelerate compliance with the rights protected by the Convention. While the impact of this provision is perhaps too early or too difficult to gauge, it is possible to evaluate the different bodies set up under Article 33 CRPD and to examine whether the national structures for the implementation and monitoring of the Convention have empowered persons with disabilities. Questions A list of questions was provided to the contributors in order to ensure consistency in the book and to cover all issues comprehensively. The purpose was not to answer them directly but to keep them in mind while analysing the implementation of Article 33 CRPD in the six EU Member States. In addition, not all the questions were relevant for each of the chapters and neither were they exhaustive.



editorial introduction3 Ratification of the CRPD

• What were the driving forces behind the ratification process? Why did the State decide to ratify CRPD? Was this linked to its participation in the negotiation of the Convention? • What kind of steps preceded the ratification? Did a preliminary compliance assessment take place? Were there any existing incompatibilities between the disabilities legislation and policies and the CRPD? • What was the role of Disabled People’s Organisations (DPOs) in the ratification process? How were they made aware of this? Were they involved in the ratification process? Did they exercise pressure on the government to ratify CRPD? • Did the State make reservations to the Convention? What was the reaction of DPOs? • Was there any discussion relating to Article 33 CRPD during the ratification process? Had the State already made a decision regarding its implementation? Article 33 (1) CRPD • Which public department is the designated focal point? Are there several focal points? Have sub-focal points been designated? What is the role of the focal point(s)? • Has a coordination mechanism been designated or established? Which ministries or other State actors are represented? What is the role of the coordination mechanism? What is the difference between this role and that of the focal point(s)? How do the focal point(s) and the coordination mechanism collaborate? • Were several options examined in the process of designating the focal point(s) and coordination mechanism? Which factors made up the argument in favour of this option? • Do the focal point(s) and coordination mechanism have the purpose of mainstreaming the rights of persons with disabilities across public departments? Does it aim to help them to adopt a social model of disability? • Is the State equipped with an advisory board or similar body to guide the focal point(s) and coordination mechanism? Which organisations are represented? What is the role of the advisory board? • Do the focal point(s) and coordination mechanism experience diffi­ culties in implementing the CRPD? What are the main obstacles?

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What further institutional changes would be necessary to accelerate the implementation of the Convention? • What are the main achievements of the focal point(s) and coordination mechanism so far? Are there practical examples to illustrate this (e.g. State report, action plan, new legislation and policies, etc.)? What are the problems? Article 33 (2) CRPD • Which body is the independent mechanism? Are there several inde­ pendent mechanisms? Have sub-independent mechanisms been designated or established? Who coordinates the independent or subindependent mechanisms? • Were several options examined in the process of designating or establishing the independent mechanism(s)? Which factors made up the argument in favour of this option? • What is the legal basis for the designation or establishment of the independent mechanism(s)? Why was this considered the most suitable way to do this? Which State organs were involved in this? • What is the mandate of the independent mechanism(s)? Does it cover the functions of promoting, protecting and monitoring the imple­ mentation of the Convention? Which aspects are missing or could be strengthened? • Which organisations are represented in the independent mechanism(s)? How is the participation of persons with disabilities ensured? Does the independent mechanism(s) include all organisations concerned with the rights of persons with disabilities? Is the independent mecha­ nism(s)  representative as provided for in the Paris Principles? • Did the State try to build a framework for promoting, protecting and monitoring the implementation of CRPD? How did it define the term ‘framework’? • What is the division of roles between the independent mechanisms? Do they together cover the functions of promoting, protecting and monitoring the implementation of the Convention? How is their cooperation organised? Are there institutional links between the independent mechanisms? • How does the independent mechanism(s) interact with the focal point(s) and coordination mechanism? What is their relationship? • Is the independent mechanism(s) able to monitor all the rights covered by the Convention? How does it set its priorities?



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• What are the resources of the independent mechanism(s)? Is the independent mechanism(s) allowed to manage its own budget? Is there a lack of funding? How does the independent mechanism(s) overcome this lack of funding? • What are the main achievements of the independent mechanism(s) so far? Are there practical examples to illustrate this (e.g. reports, enquiries, dissemination activities, etc.). What are the problems? Article 33 (3) CRPD • Which DPOs exist in the State? How are they organised? Is there an umbrella organisation? Which organisations are represented? • Have the national structures for the implementation and monitoring of the Convention empowered persons with disabilities? Did the different bodies set up under Article 33 CRPD help them to improve their position? Have DPOs developed thanks to the designation or establishment of these bodies since the ratification of the Convention? • Are DPOs involved in the working of the focal point(s) and coordination mechanism? Are the focal point(s) and coordination mechanism accessible to these organisations (e.g. website, meetings, partnerships, etc.)? Are they consulted in decision-making processes, also keeping in mind Article 4 (3) CRPD? • How do the focal point(s) and coordination mechanism ensure that DPOs consulted duly represent the different groups of persons with disabilities? Where were the initiatives taken to strengthen those groups that have been marginalised so far? • Were DPOs asked for their opinion regarding the designation or establishment of the independent mechanism(s)? Did they have other proposals? Does the decision live up to their expectations? • Are the arrangements made to include persons with disabilities in the independent mechanism(s) sufficient to involve them? Can they have an impact on the agenda of the independent mechanism(s)? • Are DPOs able in practice to use the opportunities offered to them for their involvement in the different bodies set up under Article 33 CRPD? What did the State do in order to ensure their capacity to do so? • Do DPOs have the means to develop their own monitoring activities? Are they able to act outside the realm of the different bodies set up under Article 33 CRPD?

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• Were DPOs associated in drafting the State report? Did they elaborate a shadow report? How did they organise this? Did they have sufficient resources for drafting the shadow report? • What are the main achievements of DPOs through Article 33 CRPD so far? Are there practical examples to illustrate this (e.g. campaigns, lobby, etc.). What are the problems? .

Chapters The theoretical part was written by Gauthier de Beco and Alexander Hoefmans (Chapter 1). They start by introducing the CRPD, including its history, main features and structural shifts. They then analyse the three paragraphs of Article 33 CRPD. They explain the role of focal points and that of coordination mechanism and the differences between them. They analyse the promotion, protection and monitoring functions of the independent mechanisms, with particular attention to the so-called Paris Principles and national human rights institutions, and examine the various combinations possible to form a framework. They also discuss the role of civil society and its multilevel involvement in the light of the slogan ‘Nothing about us without us’. They examine the composition, mandate and working methods of the different bodies set up under Article 33 CRPD and explain the several possibilities offered by the Convention with their advantages and shortcomings. The practical part provides case studies on the implementation of Article 33 CRPD in six EU Member States. Maria Ventegodt Liisberg wrote the case study on Denmark (Chapter 2). She examines the role of the Ministry of Social Affairs, which is the focal point and coordination mechanism. She also discusses the promotion, protection and monitoring functions of the Danish Institute for Human Rights, which was designated as independent mechanism, the Danish Disability Council and the Parliamentary Ombudsman, all of which are part of the framework. She also examines the role of Disabled People’s Organisations Denmark (DPOD) and its cooperation with the aforementioned bodies. Rachel Murray and Kelley Johnson provided the case study on the United Kingdom (Chapter 3). They examine the role of the Office for Disability Issues (ODI), which is the focal point and coordination mechanism, while additional focal points have been designated in the devolved administrations of Scotland, Northern Ireland and Wales. With particular attention to devolution in the United Kingdom, they then discuss the promotion,



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protection and monitoring functions of the Equality and Human Rights Commission (EHRC), the Northern Ireland Human Rights Commission (NIHRC), the Equality Commission for Northern Ireland (ECNI) and the Scottish Human Rights Commission (SHRC), all of which were designated as independent mechanism. They also examine the role of the UK Disabled People’s Council (UK DPC) and the engagement of DPOs with the aforementioned bodies. The case study on Italy was written by Delia Ferri (Chapter 4). She discusses the role of the Directorate-General for Inclusion and Social Policies, which is the focal point and coordination mechanism, and addresses the absence of regional focal points. She then examines the composition, mandate and working methods of the independent mechanism which is carried out by the National Observatory on the Situation of Persons with Disabilities and the Scientific Committee which was set up within the National Observatory. She also examines the role of DPOs. Aleksandra Tabaj and Cveto Uršič wrote the case study on Slovenia (Chapter 5). They discuss the role of the Ministry of Labour, Family and Social Affairs, which is the focal point. They then examine the structure and tasks of the Council for Persons with Disabilities which will be the independent mechanism replacing the Government Council for Persons with Disabilities. They also focus on the role of the Slovenian National Council of Disabled People’s Organisations and the involvement of DPOs in policy making. Marianne Schulze provided the case study on Austria (Chapter 6). She discusses the role of the Ministry of Social Affairs, which is the focal point and coordination mechanism. She then examines the composition, mandate and working methods of the impendent mechanism which is carried out by the Monitoring Committee and comments on the Rules of Procedures which set it its duties and responsibilities. She also examines the role of the Austrian National Council of Disabled People (ÖAR) and the engagement of DPOs with the aforementioned bodies. The case study on Spain was written by Francisco Bariffi (Chapter 7). He explains the role of the Directorate-General on Policies to Support Disability, which is the focal point, and that of the National Disability Council, which is the coordination mechanism. He also examines the structure and tasks of the Spanish Committee of Representatives of Persons with Disabilities (CERMI) whose appointment was initially unclear. He also examines the role of DPOs. Unless otherwise provided, developments are taken into account until September 2012.

PART ONE

THEORETICAL PART

CHAPTER ONE

NATIONAL STRUCTURES FOR THE IMPLEMENTATION AND MONITORING OF THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES Gauthier de Beco and Alexander Hoefmans Introduction Article 33 of the UN Convention on the Rights of Persons with Disabilities (CRPD) provides for national structures for the implementation and monitoring of the Convention. It requires that States Parties: 1) designate focal points and, if necessary, coordination mechanisms; 2) designate or establish independent mechanisms and; 3) guarantee the participation of civil society. Article 33 CRPD has attracted a lot of attention in recent years. It is usually the first provision States Parties to the CRPD implement after having ratified the Convention, since this is a pre-condition for implementing the entire Convention. Those involved in setting up the various bodies, however, generally have no in-depth knowledge of this provision. This theoretical part aims at providing them with detailed analysis of the requirements set by Article 33 CRPD, which will be subsequently illustrated with the case studies. The theoretical part is divided into two chapters. The first chapter explains the essential characteristics of the CRPD. The second chapter examines national structures for the implementation and monitoring of the Convention and focuses on the focal points and coordination mechanism, the independent mechanisms and civil society successively. I. Brief Introduction to the Convention This chapter gives a short introduction of the CRPD. It sketches the background of national structures for the implementation and monitoring of the Convention. It is divided into three sections. First, the history of the Convention is presented. Secondly, the CRPD’s main features are discussed. Thirdly, the structural shifts introduced by the CRPD are explained.

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gauthier de beco and alexander hoefmans A. History of the Convention

On 13 December 2006, the UN General Assembly adopted its first human rights treaty of the 21st century, the UN Convention on the Rights of Persons with Disabilities. The significance of this Convention for the visibility and reinforcement of disability rights can hardly be overestimated. The dynamism which was generated during the negotiations and the swiftness of adoption of this human rights instrument both reflect the pressing need and awareness for disability rights to figure more prominently on national and international agendas. Although disability has consistently been on the UN agenda since its foundation, studies commissioned by the organisation showed that this attention at international level had generated only a limited effect at national level. Resolutions, recommendations and international standards not being legally enforceable, attention shifted towards the negotiation of a comprehensive international convention. In doing so, not only would this category of particularly vulnerable persons obtain equal status within the UN system with other vulnerable groups. It would at the same time ensure that State authorities be conduced to setting a national agenda dealing, at best, with the challenges society faces with regard to persons with disabilities or, at least, with some of the most pressing issues the largest minority in the world is confronted with. The classic mixture of legally enforceable rights combined with the establishment of implementation mechanisms would be the ultimate catalysis to advancing the rights of persons with disabilities. In 2001, the Mexican government put forward a proposal to the UN General Assembly to start the process of elaborating a ‘comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’.1 Subsequently, the UN General Assembly mandated an Ad Hoc Committee to elaborate a draft text of such a convention.2 By 2004, a working group of the Ad Hoc Committee had developed this text, which was thereafter negotiated twice a year until August 2006. Considering the complexity and sensitivity of some of the issues discussed, the negotiation and adoption of the CRPD in a little over two years time is an unprecedented achievement. This was also partially driven by the ambition of the Chair of the Ad Hoc Committee, Ambassador Don McKay, to have the Convention ready by the symbolic date of the 1 GA Resolution 56/168, 19 December 2001, A/56/583/Add.2. 2 Ibid.



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60th anniversary of the UN. The Convention was indeed adopted on 13 December 2006.3 Equally unprecedented in this process was the participation of persons with disabilities from across the globe and their representative asso­ ciations. Numerous position papers and side events were aimed at raising awareness and lobbying delegations. Even though not always uncontested, the negotiations themselves were open and transparent. Civil society organisations were present throughout the discussions and were granted speaking time. National human rights institutions (NHRIs) also actively participated. The significant contribution to and inclusion in the elabo­ ration of the CRPD has granted Disabled People's Organisations (DPOs) coownership of the Convention. That same dynamism continues to be a driver and is at present spilling over into the ratification and implementation process. The vigilant involvement of civil society organisations also helped the negotiators to elaborate a convention which would allow for a swift and massive ratification. This often required a balancing act in the drafting of the provisions, especially those incorporating paradigm shifts.4 Because these shifts are often of a fundamental nature, State authorities need the necessary flexibility to translate them into concrete action. Strategically, treaty negotiators will therefore shy away from the radical abandonment of old concepts or mechanisms and will allow for the gradual implementation of the innovative dimensions of rights and duties. The key was to introduce new or codify existing concepts but in such a way that States would not stumble over them when internally examining the prerequisites to implement these concepts, hence blocking a possible ratification.5 Article 12 CRPD, for example, reflects this thinking. An explicit prohibition of the widespread substitute or guardianship mechanisms would probably have had a chilling effect on the ratification of the CRPD by a large 3 For a more detailed description of the process of negotiation and adoption see R. Kayess and P. French, ‘Out of the Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 (1) Human Rights Law Review 1. 4 For a more profound analysis of the politics of State participation in and resistance to multilateral treaties see S. Sitaraman, State Participation in International Treaty Regimes (Surrey: Ashgate, 2009) 327. 5 The same logic holds with regard to possible reservations to provisions of the convention. See G. Quinn, ‘Resisting the ‘Temptation of Elegance’: Can the Convention on the Rights of Persons with Disabilities Socialise States to Right Behaviour?’, in O. Arnardottir and G. Quinn (eds), The UN Convention on the Rights of Persons with Disabilities. European and Scandinavian Perspectives (London/Boston: Martinus Nijhoff Publishers, 2009) 215, 230–231.

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number of States. Instead, the message of the CRPD is that States should shift towards the adoption of a supportive decision-making mechanism, thereby rendering the current mechanisms obsolete. The discussions on the individual complaints mechanism were also tainted by this ratification mindset. Attempts to incorporate all elements of the UN monitoring system into the Convention itself were abandoned in order not to harm the adoption of the CRPD and future ratifications. We therefore ended up with a classical convention supplemented by an optional protocol.6 Some innovations, however, are so defining and overarching that implementation of any treaty provision requires policy makers from the start to have accepted and applied the conceptual shifts. This naturally influences the adoption process of the CRPD. Six years after the CRPD has been opened for signature and ratification, on 30 March 2007, about 65 percent of the members of the UN ratified the Convention, with 85 percent of the States having signed it. Many States seem to have wanted to politically subscribe to the importance of this convention by swiftly ratifying. They have seized the dynamic momentum generated by the CRPD to obtain the necessary public and political consent for adoption and only thereafter initiate the process of achieving conformity with the innovations of the Convention. Some States, however, have adopted a more prudent approach to ratification. This may simply be founded in constitutional traditions or it can be due to political and budgetary concerns.7 Some States will prefer to let adoption be preceded by a comprehensive legislative review followed by modifications where necessary in order to be in conformity with the treaty before being bound by it. If the swiftness of negotiation and adoption of the CRPD has turned out to be a success story, the implementation of the Convention is of course the only indicator for measuring true progress in achieving its objectives. Making human rights reality is turning commitment into action. Disability policies and measures, however, will remain in vain if State structures are not adapted to their transversal development and implementation. Creating a structural framework as a bearer and driver for the rights of persons with disabilities is subsequently a prerequisite to enable the objectives of the CRPD to trickle down into one’s everyday life. 6 Ibid., 227. 7 For example, on the non-ratification by the U.S. see M. Stein and J. Lord, ‘The Law and Politics of U.S. Participation in the UN Convention on the Rights of Persons with Disabilities’, in S. Hertel and K. Libal (eds), Human Rights in the United States. Beyond Exceptionalism (Cambridge: University Press, 2011) 199.



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The implementation of human rights remains a major challenge and requires continuous reflection and adaptation. In this regard, the CRPD poses new challenges and offers new opportunities. B. Main Features of the Convention The implementation of human rights requires understanding the nature of a treaty and the significance of some of its innovative provisions. In particular the text of the CRPD is pervaded with a human rights mindset towards disability and codifies certain conceptual and structural paradigm shifts which, when implemented, will be of particular importance to the fulfilment of the rights of persons with disabilities. It is therefore paramount that all key actors are guided by these ‘genetic characteristics’ of the CRPD when translating commitments into concrete policy measures or when monitoring the Convention. Probably the most comprehensive and significant conceptual shift towards persons with disabilities is the introduction by the CRPD of the social model of disability rather than the medical model. It represents the epitome of the innovative approach to disability rights for which the CRPD stands: the introduction of paradigm shifts, a human rights approach to disability and the shift from a pure individual rights-based treaty to a convention with a mission for society as a whole. For years persons with disabilities were perceived as human beings on the fringes of society requiring treatment, pity and institutionalisation. The prevailing view was that their impairment inhibited them from participating as equal members in a community life which at times did not even acknowledge their existence or basic rights. Treatment was focused on the medical condition of the person, resulting in persons with disabilities being seen as objects of welfare, social security or health programmes.8 The alternative model that has been professed by the disability rights movement for several decades is now the social approach to disability.9 8 See F. Megret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights’ (2008) 30 (2) Human Rights Quarterly 500; Kayess and French, op. cit., 14. 9 C. Barnes and G. Mercer, Exploring Disability (Cambridge: Polity Press, 2010) 29–36; V. Finkelstein, The ‘Social Model of Disability’ and the Disability Movement, March 2007; online: http://www.leeds.ac.uk/disability-studies; A.E. Dell Orto and P.W. Power (eds), The Psychological and Social Impact of Illness and Disability (New York: Springer, 2007) 736; K. Davis, The Social Model of Disability—Setting the terms of a new debate, Derbyshire Coalition of Disabled People, September 1996, revised.

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Rather than focusing on impairment and trying to alleviate the limitations it causes, the social model revolves around society itself and its relationship with persons with disabilities. Disability is considered as a social construction and society should be capable of correcting its defaults. In short, it is the environment which is disabled when it fails to provide for equal and adapted treatment for persons with impairments. Its philosophy is the equal participation of persons with impairments in community life and its agenda the struggle to eliminate physical, attitudinal and environmental barriers limiting these persons in the enjoyment of their human rights. Other than previous UN instruments,10 the CRPD has entirely adopted the social model of disability.11 Because of the comprehensive, universal and legally binding nature of the CRPD, this model is from now on the centrifugal force of disability policies. More generally, this conceptual shift is recognised to be a shift towards a human rights approach to disability.12 Whereas previously persons with disabilities were denied the enjoyment of some of their most fundamental rights, the social model implies that they are human beings equally entitled to respect and dignity. It is a rights-based approach to ensuring that human rights are also working for this particular vulnerable group of persons. Whilst disability as such has not been defined in the CRPD, the shift from the medical to a social or human rights model of disability is an incredible achievement considering the diversity of cultural backgrounds and attitudes towards disability and persons with disabilities across the world. Overcoming cultural and attitudinal barriers may, however, remain to be one of the major challenges in ensuring the concrete implementation of the CRPD.13 Examples of previous human rights treaties have shown 10 For example, the 1982 UN World Programme of Action concerning Disabled Persons (WPA), the 1991 Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care adopted by the UN General Assembly and the 1993 UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (General Assembly Resolution 48/96) (Standard Rules). 11 According to Rosemary Kayess and Philip French, however, the CRPD has failed to clearly distinguish between disability and impairment and has subsequently limited the scope of the social model (Kayess and French, op. cit., 21–22). 12 G. Quinn and T. Degener, Droits de l’homme et invalidité. L’utilisation actuelle et l’usage potentiel des instruments des Nations Unies relatifs aux droits de l’homme dans la perspective de l’invalidité (New York/Genève: Nations Unies, 2002) 22–24. 13 Sociologists refer in general to the incompatibility of social structures with human rights standards. This is to be distinguished, however, from the doctrinal discussion on universalism v. cultural relativism. See M. Freeman, Human Rights: an Interdisciplinary Approach (Cambridge: Polity Press, 2002) 83–90. See also J. Almqvist, Human Rights, Culture, and the Rule of Law (Oxford: Hart Publishers, 2005) 242.



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that the ratification of legally binding conventions is only a first and minor step towards the strengthening of the rights of vulnerable groups.14 Shaping society in conformity with human rights standards is a commitment of a different calibre. In light of this, the innovative approach of the CRPD to put the burden of realising the human rights of persons with disabilities on the whole of society is crucial. Particularly noteworthy is that the shift towards the human rights approach has not only taken place at the international and governmental level but also in non-governmental organisations (NGOs), both national and international, dedicated to the rights of persons with disabilities. These organisations have equally started to approach their advocacy work from a human rights angle and are still in the process of that shift. Where the social model is an appeal to society to redirect social constructions, its success equally depends on the active participation and inclusion of persons with disabilities themselves as well as their representative associations. Connecting a mental shift in their advocacy work to a structural shift when it comes to their inclusion in an open and constructive process of implementation is part of the answer to the appeal of the social model. The CRPD may endorse the social model of disability, as long as persons with disabilities are not entitled nor enabled to exercise their fundamental rights themselves, society will always remain disabled. The participatory nature and the respect for dignity and individual autonomy which underscore the CRPD finds its strongest advocate in Article 12 which relates to the legal capacity of persons with disabilities.15 This provision is the legal embodiment of the principle that persons with disabilities are equal members of community life and that they are entitled to shape their lives as they see fit.16 Moreover, it transcends the legal value in its practical implications. The CRPD actually empowers persons with disabilities to claim their right to act and decide for themselves. Where necessary, society should be reasonably accommodated to support

14 See for example R. Helgadottir, ‘The UN Convention in Nordic Domestic Law— Lessons Learned from other Treaties’, in Arnardottir and Quinn (eds), op. cit., 279. 15 For Frederic Megret this is borderline to the establishment of a right to autonomy, a debate which is recurrent in this category of treaties which acknowledge vulnerable groups such as women and children as autonomous subjects entitled to shape their own lives. Of course, restrictions remain especially with regards to children and persons with disabilities so that the aim is rather to maximise their autonomy (Megret, op. cit., 511–514). 16 Human Rights and Disability: Equal Rights for All, Council of Europe’s Commissioner for Human Rights Issue Paper, 20 October 2008, CommDH/IssuePaper(2008)2, 10–11.

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them in doing so. This is a fundamental paradigm shift away from the widespread substitute or guardianship mechanism which has been established so far and which is guided by the (partial) lack of legal capacity or the restriction on the exercise of that capacity by persons with disabilities.17 The conceptual paradigm shifts explained above are the most prevailing and transversal concepts which will affect the full implementation of many other provisions of the CRPD. We have mentioned them because the national structures which serve to implement the CRPD should be particularly aware of their importance. C. Structural Shifts of the Convention The CRPD also introduces structural shifts in international human rights law. Human rights treaties traditionally do not determine how States should implement human rights. The International Covenant on Civil and Political Rights (ICCPR) obliges a State ‘to respect and to ensure to all individuals’ and ‘to take the necessary steps … to give effect to the rights recognised’ in the Covenant’,18 whereas the International Covenant on Economic, Social and Cultural Rights (ICESCR) requires it to ‘take steps […] to the maximum of its available resources, with a view to achieving progressively the full realisation of the rights recognised’ in the Covenant.19 What measures exactly the State should take to do so, however, is not provided for by these treaties. The latter create therefore only obligations of result. In contrast, Article 33 CRPD provides that States should have national structures for the implementation and monitoring of the Convention. As will be seen in the next sections, it requires both the creation of focal points in the public administration and that of independent mechanisms outside of it, while guaranteeing the participation of civil society. By defining which structures States have to create under their jurisdiction, 17 For a more profound analysis on this topic, see amongst others M. Donnelly, Healthcare Decision-Making and the Law. Autonomy, Capacity and the Limits of Liberalism (Cambridge: University Press, 2010) 320; P. Bartlett, O. Lewis and O. Thorold, Mental Disability and the European Convention on Human Rights (Leiden: Martinus Nijhoff Publishers, 2007) 149; M. Jones and L.A. Basser Marks (eds), Disability, Divers-ability and Legal Change (The Hague: Kluwer Law International, 1999) 400 and R.L. Burgdorf, The Legal Rights of Handicapped Persons : Cases, Materials and Text (Baltimore: P.H. Brookes Publishers, 1980) 1127. 18 Article 2 (1) and (2), ICCPR. 19 Article 2 (1), ICESCR.



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the CRPD provides for procedural requirements in the implementation of the rights of persons with disabilities. The Convention, therefore, creates also obligations of conduct, which define how States should reach certain goals. Traditional human rights treaties, like the ICCPR and the ICESCR, do not do this. The focus on States in the CRPD is in conformity with the principle of subsidiarity, which considers that States have a primary role in the implementation of human rights. While it is a truism that international law regulates human rights, their specific nature requires that more attention be paid to the State. Considering these rights principally as an issue relating to foreign affairs ignores also the fact that they are first and foremost an internal matter. It also creates the feeling that human rights are the sole concern of remote UN treaty bodies. Human rights implementation ultimately depends on States. As stated in the Vienna Declaration and Programme of Action, ‘their protection and promotion is the first responsibility of governments’.20 In the words of Jack Donnelly, ‘the struggle for human rights will be won or lost at the national level’.21 In view of this, human rights bodies only have a subsidiary role in the implementation of human rights. While treaty bodies should serve as a backup when national human rights systems prove ineffective, they are to a large extent insufficiently resourced and have difficulties getting in touch with local realities. In other words, national structures for the implementation and monitoring of the CRPD fill the gap between the international and national levels. The ratification of a human rights treaty is only the first step towards enhancing human rights. While it does not guarantee compliance with these rights, it does offer new resources to those groups that can benefit from its implementation. It increases the chances for successful social mobilisation by providing citizens with additional arguments for their claims towards government.22 However, this requires to strengthen their  capacity and to have national stuctures allowing them to use the human rights treaty in formulating their demands. The structural shifts in the CRPD have this potential. Article 33 CRPD offers those actors

20 Vienna Declaration and Programme of Action, 25 June 1993, A/Conf.157/23, Part I, para. 1 in fine. 21 J. Donnelly, ‘Post-cold War Reflections on the Study of International Human Rights’ (1994) 8 Ethics and International Affairs 117. 22 B., Simmons, Mobilizing for Human Rights: International Law in Domestic Politics (Cambridge: Cambridge University Press, 2009) 147–148.

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concerned with the promotion and protection of disability rights the unique opportunity to urge States to abide by their commitments through their participation in various bodies, thereby making the Convention a powerful tool for their action. It is not a matter of fashion that the obligation for States to have national stuctures found its way to the CRPD. In many States, there is no comprehensive approach to disability issues at the national level. Policies are fragmented between public departments, the main role given to the health ministry which takes isolated measures. In addition, the human rights dimension of disability issues has for a long time been ignored in policymaking. There are also no independent bodies that focus on disability rights, in contrast to what exists for children’s rights or the rights of women. The rights of persons with disabilities, however, require the transformation of social structures and not just the adoption of isolated measures. In addition, policymakers should regard disabled persons as right-holders and not as people in need of assistance. This requires an overall and permanent verification of the human rights compliance of policies relating to persons with disabilities. Two other factors could explain why the obligation to create national structures is provided for in the CRPD. The first one is that the Convention does not aim to elaborate new human rights standards but rather to increase compliance with existing ones. Although in a way it clarifies, articulates and, to a certain extent, expands the rights of disabled persons, it was considered by the drafters as a pure implementation convention.23 The focus of the discussions was therefore not on standard setting but on implementation. The creation of national structures was in line with these discussions, especially since NHRIs actively participated. The second one is that the CRPD requires a change of mentality. The implementation of the Convention depends on the internalisation of its values, which is necessary to produce changes in behaviour.24 This requires that national stuctures exist to remind of the importance and foster the acceptance of these values. This is especially important for non-discrimination treaties.25

23 Megret, op. cit.. 24 Quinn, op. cit., 218–220. 25 L.-A. Sicilianos, ‘The Prevention of Human Rights Violations. Utopia or Challenge?’, in L.-A. Sicilianos (ed.), The Prevention of Human Rights Violations. Contribution on the Occasion of the Twentieth Anniversary of the Marangopoulos Foundation of Human Rights (MFHR) (The Hague: Kluwer Law International, 2001) 288.



national structures for implementation and monitoring21 II. Article 33 CRPD: Examination of the National Structures for the Implementation and Monitoring of the Convention

This chapter provides a theoretical analysis of the various aspects of Article 33 CRPD. It examines in depth the composition, function and working of the national structures for the implementation and monitoring of the Convention. It is divided into three sections. First, the State structures provided for in Article 33 (1), i.e. the focal points and coordination mechanism, are studied. Secondly, the independent mechanisms to promote, protect and monitor the implementation of the Convention under Article 33 (2) are discussed. Thirdly, the role of civil society, in the sense of Article 33 (3), is examined. A. Focal points and Coordination Mechanism (Article 33 (1) CRPD) One of the far-reaching structural innovations introduced in the CRPD is the commitment for State authorities to organise themselves in such a way as to optimise the implementation of the Convention and, by extension, their national disability rights policies. This commitment must not be interpreted as a mere incentive for States to implement the Convention. It can be considered as an extension of a general duty which falls upon State authorities by virtue of international human rights law.26 A UN Resolution adopted on the eve of the fiftieth anniversary of the Universal Declaration of Human Rights states this clearly: State has a prime responsibility and duty to protect, promote and implement all human rights and fundamental freedoms, inter alia by adopting such steps as may be necessary to create all conditions necessary in the social, economic and political as well as other fields as well as the legal guarantees required to ensure that all persons under its jurisdiction, individually and in association with others, are able to enjoy all those rights and freedoms in practice.27

This section analyses the different parts of Article 33 (1) CRPD. It is divided into three sub-sections: 1) focal points; 2) coordination mechanism and; 3) functions of focal points and coordination mechanism. 26 For a more general view on the role of duties in international human rights law, see E. Brems, Human Rights: Universality and Diversity (The Hague: Martinus Nijhoff Publishers, 2001) 424–441. On the politics of human rights implementation, see Freeman, op. cit., 156–175. 27 Article 2 (1) of the Declaration on the Right and Responsibility of Individuals, Groups and Organs of Society to Promote and Protect Universally Recognized Human Rights and Fundamental Freedoms. See GA Resolution 53/144, 9 December 1998, A/RES/53/144.

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1. Focal Points A pivotal role in any government’s disability agenda is set aside for the focal point which the State should designate according to Article 33 (1) CRPD. The State may designate one or several focal points, depending either on the political system of the country or on the conceptualisation of this function by the State authorities. The first part of this provision reads: States Parties, in accordance with their system of organisation, shall designate one or more focal points within government for matters relating to the implementation of the present Convention ….

It is clear from the text that this is not a suggestion from the treaty negotiators nor is it an engagement which is to be realised progressively. It is a prerequisite for the implementation of the CRPD. Either before or immediately after its ratification, States should proceed to the designation of one or more focal points. Although for a UN human rights treaty this is an innovative intervention into the sovereignty of a State’s organisation, the concept is not new in relation to disability rights. The implementation of the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities has already led to the designation of focal points.28 What the CRPD does, however, is to codify their existence and to expand their role. They may already have been engaging with other national disability stakeholders but the broad perspective of the CRPD and the authority they now draw from the Convention certainly presents new avenues for these focal points to address disability rights issues. A recurrent criticism resonated so far by international discussions and by the disability rights movement is the pro forma assignment of ministerial departments as focal points without taking into account the impact the CRPD may have on their functioning. If focal points simply continue as before then the potential of the CRPD is neglected. The implementation of the CRPD may therefore necessitate a revision of the mandate or resources of some of these existing focal points.29 28 Rule 20 of the Standard Rules encourages States to establish coordinating committees. Chapter IV concerning a monitoring mechanism further provides that ‘States should encourage national coordinating committees or similar bodies to participate in implementation and monitoring. As the focal points on disability matters at the national level, they should be encouraged to establish procedures to coordinate the monitoring of the Rules. Organisations of persons with disabilities should be encouraged to be actively involved in the monitoring of the process at all levels.’ 29 See, for example, the contribution of the International Disability Alliance to an open consultation held by the Office of the UN High Commissioner for Human Rights (OHCHR)



national structures for implementation and monitoring23

The purpose of these focal points is double. On the one hand, it ensures a legitimate place for disability rights on the political agenda, making it visible enough to compel governments to take up this issue. A focal point with the necessary credibility will often have direct access to high-level government officials and will engage with them in both the development as well as the implementation of disability rights policies. On the other hand, the designation of one or more focal points is an administrative tool meant for rationalising and centralising all possible institutional players involved in disability rights policies. The CRPD lends itself well for that purpose considering the transversal nature of disability rights. It also requires such a sound organisation for turning the social model of disability into reality. Although there is no fixed scheme as to the organisation of focal points, the social model of disability does implicitly give us some indications. Implementing the social model requires both a horizontal as well as a vertical approach. At the administrative level, there may be several focal points dealing transversally with disabilities rights policy within their respective competences. There may, however, be focal points covering each of the different layers of government (national, regional provincial, local) thereby increasing the necessity of the establishment of a coordinating mechanism to steer everything in a coherent direction. This could of course be perceived as a proliferation of focal points, putting into question the efficiency of the implementation mechanism. However, focal points across and within the different governmental layers will not necessarily have the same role. Moreover, in what may become a myriad of focal points with differing degrees of involvement, each level should clearly have a lead focal point to which both citizens and other governmental departments can turn. Overall, where the social model of disability requires a form of mainstreaming of disability policy it is important that key policy departments be actively drawn into the implementation of disability rights. Within each of those departments a unit or person could be tasked to serve as contact to the lead focal point. This will legitimate the latter to call upon the former when necessary and will instigate intradepartmental attention for disability rights as well as facilitate interdepartmental dialogue. Besides the lead focal point, there may therefore be sub-focal or contact points, casting a sense of responsibility on all actors involved but with limited in 2009 concerning the structure and role of national CRPD mechanisms to be found at http://www2.ohchr.org/english/issues/disability/consultation26102009.htm.

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implications for human resources while preserving an efficiently functioning implementation system. Maximising the potential of a focal point, and in particular the lead focal point, also implies it to be designated at the highest possible gov­ ernmental level. There are several options of which the placement of the focal points within the ministerial departments is very common. In this regard, the disability rights movement, armed with the paradigm shifts, pleads for the focal point not to be established within ministries such as those dealing with welfare, health or labour, although in practice this often turns out to be the case.30 This would reflect the old model of compartmentalising persons with disabilities according to their perceived inadequacies. Rather the preference is for ministries dealing with justice, human rights and possibly equal opportunities to be designated as (lead) focal point. A second option is the establishment of a particular office for persons with disabilities within the presidential or prime minister’s administration. Another possibility is for the government to establish a proper ministerial or State secretary portfolio with regards to disability rights. However, this would need to be accompanied with an administrative department or office in support of the minister or State secretary. Considering the necessity for a continuous and coherent implementation process of the CRPD across parliamentary legislatures it is preferable for focal points to be designated within administrations but at a senior level. In addition to this, the set-up of focal points on the administrative level may be mirrored by an inter-ministerial set-up responsible for guidance, policy setting and decision-making thus amounting to a political coordination mechanism. Moreover, one should also keep in mind that parliament may also play an active role in the development and follow-up of a national disability rights policy through special committees or a par­ liamentary secretary in charge of disability rights. Although the focal point will be on the executive level it will need to liaise closely with parliament. There is another particular stakeholder which should be taken into consideration in the institutional disability landscape. Governments will often have already established various advisory boards or councils to assist 30 This appears from the conclusions of the ‘Open-ended consultation on National Frameworks for the Implementation and Monitoring of the Convention on the Rights of Persons with Disabilities’ organised by the OHCHR in Geneva on 26 October 2009. The report and contributions are available at: http://www2.ohchr.org/english/issues/disability/ consultation26102009.htm.



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them in the elaboration and implementation of their disability policies. They are largely composed of DPOs and other non-State actors and even ministerial representatives, thereby facilitating interaction between civil society and government. They inform State authorities on emerging disability issues or play a role in the implementation of national disability rights action plans. Their status, however, can be somewhat confusing when held in the light of the requirements laid down in Article 33 (1) and (2) CRPD. They cannot serve as an independent mechanism given their governmental alliance but they are equally ill placed to act as a focal point or coordination mechanism because they cannot be held accountable as actual government agents. They can, however, play an important role in assisting these bodies in the implementation of the CRPD. Strictly speaking, a designation by law is not required and the mandate of focal point may be assigned by administrative or ministerial decision. In principle, the mainstreaming of human rights requires that disability experts also acquire knowledge of human rights. Often this will also entail the allocation of additional staff and resources to existing focal points or to ministerial departments now designated as focal point. In any case, in light of the interconnecting role the focal points play between grassroots level and policymakers, it would enhance the visibility of the focal points towards persons with disabilities and their representative associations if, upon ratification of the CRPD or shortly thereafter, the public would at least be informed about their designation and the content of their mandate. It may also be advisable to employ persons with disabilities as part of the focal point team but, contrary to the wishes of some dis­ability rights organisations, there is no rule indicating that this should absolutely be the case.31 2. Coordination Mechanism Whereas the designation of one or more focal points is a legal obligation, the decision to establish or not a coordinating mechanism is left to the State authorities. The second part of Article 33 (1) CRPD reads: [The States Parties] … shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels.

31 As, for example, stated by the International Disability Alliance in their contribution mentioned in footnote 29.

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State authorities may opt to organise an omnipotent focal point, thereby eliminating the necessity of an additional coordination mechanism. This may be the case where in a particular non-federal or centralised State system disability rights are largely the competence of one particular ministry. The focal point designated within that ministry will be the lead focal point and may incorporate at the same time a coordinating function. In more complex State systems, the national disability rights agenda may be scattered across the political and administrative scene, which will automatically give greater weight to coordination. In general, the case for a central mechanism distinguishing itself from the role focal points have makes sense from more than one perspective. From an internal point of view, a State may want to establish one particular mechanism which would take up the role of keeping an oversight and ensuring a coherent functioning of the different focal points. Depending on where it is situated, it may be closer in touch with the overall governmental agenda and policy objectives and would act as a guardian of the national disability rights agenda in the larger perspective. Moreover, in State systems where overall coordination is not attributed to a lead focal point, a distinct coordination mechanism would not take part in the actual development of disability rights policies and may therefore easily act as a neutral platform to unite the various policy-making factions. Contrary to what certain disability rights organisations advocate,32 the coordination mechanism would not necessarily set the national disability rights agenda. The distinction is subtle but important in order to safeguard a clear distinction in roles of the various CRPD mechanisms. The national disability rights agenda is the fruit of the cooperation between focal points but may be negotiated within the framework of a neutral coordination mechanism. The latter may therefore facilitate the adoption of such an agenda. For the same reason, State authorities should avoid making the coordination mechanism tributary to a particular ministry not to create the impression it has a stake in the decisionmaking process. It is indispensable for the focal points both on horizontal but especially on vertical levels to enter into a regular dialogue, to inform and consult each other. A coordination mechanism may set up the necessary formal channels and circulate information at its own initiative or upon request. It will be attributed its own proper functions but will at the same time be at the disposal of the focal points, the independent mechanisms and DPOs. 32 Ibid.



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Especially federal or decentralised States may benefit from the establishment of a coordination mechanism. These States will share responsibility with the regional or local levels for the implementation of the CRPD and the development of disability rights policies. The vertical dimension of the focal points, however, will be more complex, their role and resources may be incongruous and their priorities may differ substantially. In light of these circumstances, the establishment of a coordination mechanism can be all the more significant. From the perspective of the internal dimension different levels may wish or need to adopt measures in a concerted fashion. With regard to certain provisions of the CRPD, the federal or decentralised State may govern independently within the boundaries of its competences, whereas for others a particular policy objective may require coordinated governance. The latter may be necessary either because a certain area falls under a system of shared competence between the federal or central and the regional or local levels or it may be that a policy objective or measure requires more than one level to act. A neutral mechanism designed to facilitate interstate cooperation may be of assistance in this regard. In any case, given the scattering of competences and degrees of competences at different levels developing a coherent national disability rights policy seems quite a challenge but remains nevertheless desirable. The presence of a platform which, preferably, transcends and is supported by the various levels of governance can therefore at least serve to stimulate an open and transparent disability rights policy and at best act as the coordinator of a coherent national disability rights policy. There is also an external dimension to the implementation of the CRPD which pleads in favour of a coordination mechanism. The establishment of such a mechanism is of importance to liaise with relevant international organisations and in particular with the UN Committee on the Rights of Persons with Disabilities. This Committee will in any case need to rely on one central point when communicating with State authorities. It will then fall upon this central point to use its networks and channels to organise the follow-up work where the Committee has addressed requests to State authorities. Moreover, as the CRPD is a living instrument, it will from time to time require guidance from the Committee. The observations of the Committee following individual complaints procedures and especially its future general comments on specific articles of the CRPD are an important source for implementation on national level. Overall, the most substantial part of the work of the national disability mechanisms will relate to the implementation of the CRPD at the national level but it may certainly not disregard international developments. Either the lead focal

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point or the coordination mechanism, where it exists, should therefore be assigned the necessary resources and mandate to engage with the international level. From the perspective of the external dimension, a coordination mechanism is again all the more necessary in federal States to act as the focal point for the international level. While the UN treaties take into account the specificities of State systems, the UN as an international organisation still addresses itself to only one interlocutor. Therefore one central point, often the federal level, will officially be its interlocutor even when a particular issue may concern a regional level. For example, an individual complaint before the UN Committee on the Rights of Persons with Disabilities may in substance deal with a competence belonging to a particular autonomous region. While internally the complaint will be treated by that region, its observations will be presented as the defence of the national State which will also be held responsible in case the Committee decides upon a breach of the CRPD. Federal States in general already often have mechanisms of coordination and consultation in place to deal with the representation of their different components before international organisations but they may limit themselves to gentleman’s agreements ensuring a smooth handling of particular questions. The establishment of treaty-specific coordination mechanisms may seem burdensome from a national institutional perspective but it certainly guarantees added value from the perspective of the implementation of the treaty. It does not act as a superficial connection of State authorities with the international institution but rather as an individual stakeholder in the internal dimension of the national disability rights policy. In federal States, the coordination mechanism is therefore the ideal interlocutor of the treaty body. Finally, a coordination mechanism may also be the kingmaker of a ‘joined-up governance’ approach to the implementation of a national disability rights policy.33 Decades of treaty implementation have shown that human rights cannot only be realised by a restricted circle of policymakers at the national level in an often fragmented manner. It requires a transversal and vertical approach drawing into the realm of human rights governance actors dealing with all possible dimensions related to the realisation of those rights. Considering that a coordination mechanism should first and foremost be composed of the different focal points, this would lead to a joined-up platform in cases where focal points have been designated on 33 Quinn, op. cit., 254.



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different levels of government. However, it may be advisable for a coordination mechanism to set up networks with other disability rights stakeholders, such as various governmental (research) institutions, independent mechanisms, trade unions, the private sector, universities and civil society. The extent to which all the aforementioned would have consultative or decision-making status within the coordination mechanism may possibly depend on the actual mandate given to the latter. Where the coordination mechanism is responsible for the national CRPD reporting process it will certainly need to interact not only across but also beyond governmental boundaries. The role of independent mechanisms will of course be crucial in this regard. 3. Functions of Focal Points and Coordination Mechanism Both the focal points and coordination mechanism, where the latter exists, should act as a coherent governmental unit dedicated to the implementation of the CRPD. Overall, the focal points will be the drivers and executors of the national disability rights agenda, whereas the coordination mechanism will not be concerned with policy development as such. However, considering the diversity of State systems and traditions, there is no unique model describing their exact set-up and functioning, as we have already mentioned. In some cases a focal point will be bestowed with such a pivotal role and matching resources that it will de facto incorporate the mandate of a coordination mechanism. In other cases developing a coherent disability policy may involve such a large degree of (sometimes autonomous) institutional actors that the centre of gravity will lie with the challenge of coordinating all efforts in a structured fashion. In order to guide States in their choices, the Office of the UN High Commissioner for Human Rights (OHCHR) issued a thematic study on the structure and role of national structures.34 This should in time be complemented with guidelines from the UN Committee on the Rights of Persons with Disabilities based on the experience gained through country reports. The study points out that the overall mandate of the focal points should focus on developing and coordinating a coherent national policy on disability rights. This would entail:

34 OHCHR, Thematic study on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities, 22 December 2009, A/HRC/13/29.

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1. acting as a promotional and expertise centre for all government actors when it comes to the CRPD and its implementation; 2. coordinating all government action in relation to the reporting, monitoring and awareness-raising activities; 3. liaising with the independent mechanisms as well as with civil society at large.35 While this framework certainly covers the different dimensions of the implementation of the CRPD, it does not seem to take into account the myriad of nuances and complexities involved in the organisation by State authorities of the national structures, as demonstrated in the previous sections. Good governance and efficient implementation of the CRPD most certainly require a clear distinction of the mandates and roles assigned to each of the designated mechanisms. The functions of coordination mechanism mentioned by the OHCHR study—policy development, promotion of dialogue in the disability field and awareness raising—do not differentiate themselves from the ones it attributes to the focal points. The OHCHR study also advocates the designation of an overall focal point similar to the lead focal point mentioned in the previous sections. It is, however, not clear how it would distinguish itself from the coordination mechanism. Whereas overlap may not always be unavoidable and in some respects even not always be harmful, it should be clear where policy is set, implemented and evaluated, which governmental and non-governmental actors are involved and to which extent and for what purpose. This clear outline does not only serve efficient government but it also creates transparency for the disability rights movement and civil society in general. A lead focal point may take up a coordinating role in relation to its own horizontal sub-focal points but not necessarily in relation to the vertical level. Depending on the powers attributed to the lead focal point this may even encounter constitutional objections in federal States with respect to the autonomous functioning of the regions. For these reasons, the establishment of a coordination mechanism, not attributed with policy-making powers, may be preferable to a lead focal point whereby the latter would combine policy-making powers with an overall coordinating function. Designed along the lines mentioned in the previous section, an umbrella mechanism, not tributary to one particular level but carried by all, could be construed to respond to specific challenges within the 35 Ibid., 10.



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internal and external dimensions of the implementation of the CRPD. Additionally, focal points on each level should be the masterminds of a coherent national disability rights agenda and should undertake the necessary steps to fulfil their respective obligations in respect of the abovementioned OHCHR framework of functions. In particular two tasks pertaining to the implementation of the CRPD require a coherent and coordinated functioning of the focal points and coordination mechanism. First, the centrepiece of the UN treaty monitoring system is the reports which a State party has to submit to the specific treaty body, in this case the UN Committee on the Rights of Persons with Disabilities.36 This reporting process is an exercise which is not to be underestimated in terms of energy, time and resources. The purpose is for the State authorities to shed light, in a concise manner, on the state of affairs of disability rights and the national situation regarding persons with disabilities. The State is to demonstrate in writing, and afterwards orally before the Committee members, that its disability rights policies are in conformity with the CRPD and how the CRPD provisions and objectives have been respectively implemented. Where the State has failed to do so, it will face recommendations by the Committee to adapt its disability rights governance. The drafting of the national report requires the mobilisation of all bodies assigned to take part in the broader sense in the implementation of the CRPD, the independent mechanism and civil society included. It represents a vast filtering exercise of gathering of information drawn from a wide range of governmental and non-governmental sources. It sets in motion several key functions of the focal points and coordination mechanism, requiring an analysis of governmental policies based on data and indicators which they may have developed (or helped to develop), interaction with the independent CRPD mechanism, DPOs and civil society in general and coordinating all these efforts towards a single report. Secondly, the conception and implementation of national disability rights action plans will lead to a similar massive and concerted mobilisation but restricted to the internal dimension of the implementation of the CRPD.37 The role of focal points and coordination mechanism is to 36 M. Kjaerum, ‘State Reports’, in G. Alfredsson, J. Grimheden, B. Ramcharan and A. Zayas (eds), International Human Rights Monitoring Mechanisms. Essays in Honour of Jakob Th. Möller (Leiden/Boston, Martinus Nijhoff Publishers 2009) 17. 37 On the potential of the CRPD as a ‘national action trigger’, see M. Stein and J. Lord, ‘Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities’ in Arnardottir and Quinn (eds), op. cit., 35–38.

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transcend a strict reactive approach to CRPD implementation, by merely ensuring conformity through a legalistic approach, and adopt a proactive vision inspired by the Convention. The CRPD can be conceptualised as a disability policy manual or a toolkit serving as the foundation of government actions aimed at profoundly advancing the rights of persons with disabilities. The elaboration of a national disability rights action plan, preceded by a baseline study, could be the centrepiece in such endeavours.38 Whereas the CRPD does not oblige State parties to draft such an action plan, from a governance point of view it can be perceived as an efficient and comprehensive tool in the hands of governments dedicated to ensuring the fulfilment of human rights in general and realising disability rights in particular.39 Taken seriously it is an upgraded version of CRPD implementation, creating political objectives framed by timelines and supported with sufficient resources, giving visibility to disability rights and empowering disability rights movements as privileged partners and facilitating a clearer monitoring at both the national and international levels.40 Of particular importance in the framework of such an action plan are the measures for mainstreaming disability rights. These actions will require a larger investment from State authorities in gathering data on the experiences of persons with disabilities as well as in developing indicators to monitor compliance with the standards of the CRPD.41 Overall, whereas the centre of gravity naturally lays with the relationship between the focal points and coordination mechanism and the various key actors within the executive power, the implementation of the CRPD should not be limited to this branch of government only.

38 See in particular E. Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities (Cambridge; University Press, 2011) 197–286. 39 O. De Schutter, International Human Rights Law (Cambridge: University Press, 2010) 472–479. 40 On the key factors for a successful action plan see Human Rights and Disability: Equal Rights for All, Council of Europe’s Commissioner for Human Rights Issue Paper, op. cit., 12–13. More elaborate on mainstreaming and action plans see: Council of Europe, Recommendation of the Commissioner for Human Rights on systematic work for implementing human rights at the national level, 18 February 2009, CommDH(2009)3; O. De Schutter, ‘Mainstreaming Human Rights in the European Union’, in P. Aalston and O. De Schutter (eds), Monitoring Fundamental Rights in the EU. The Contribution of the Fundamental Rights Agency (Oxford: Hart Publishing, 2005) 37–72; OHCHR Professional Training Series No.10, Handbook on National Human Rights Plans of Action (New York/Geneva: UN, 2002) 108. 41 J. Lord and M. Stein, ‘The Domestic Incorporation of Human Rights Law and the United Nations Convention on the Rights of Persons with Disabilities’ (2008) 83 (4) Washington Law Review 465; Flynn, op. cit., 28–34.



national structures for implementation and monitoring33

By extension the focal points and coordination mechanism should, within the boundaries of their respective competencies, interact with the legislative and judiciary branches. This will certainly be required where government proposals for legislation are carried by the expertise of the focal points or where the executive branch is held accountable by parliament, its committees or individual deputies. But focal points or coordination mechanism may also envisage the coordination of training and awareness raising of disability rights across the three branches of government. B. Independent Mechanisms (Article 33 (2) CRPD)42 Another great novelty in the CRPD is the obligation for State authorities to have bodies within the State apparatus that can verify their abidance by the Convention. These bodies must meet certain principles so as to enable them to carry out their functions. Article 33 (2) CRPD provides that: States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights.

This section analyses the different parts of Article 33 (2) CRPD. It is divided into five sub-sections: 1) designation or establishment of one or more independent mechanisms; 2) the Paris Principles; 3) NHRIs; d) functions of independent mechanisms and; e) framework. 1. Designation or Establishment of one or more Independent Mechanisms States should designate or establish ‘one or more independent mechanisms’. This gives rise to two possibilities. First, States may ‘maintain, strengthen, designate or establish’ independent mechanisms. According to the wording of Article 33 (2) CRPD, there 42 This section is partly based on an article of Gauthier de Beco which examines this issue with a special focus on the potential role of NHRIs : G. de Beco, ‘Article 33 (2) of the UN Convention on the Rights of Persons with Disabilities. Another Role for National Human Rights Institutions?’ (2011) 29 (1) Netherlands Quarterly of Human Rights 84.

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are therefore four possibilities, which can be reduced into two, as the three first possibilities are in fact only one.43 1) States may designate existing bodies, which means that they can maintain these bodies and give them the functions to promote, protect and monitor the implementation of the Convention. This option is interesting for States that already have bodies exercising some of these functions and avoids the creation of new bodies. There should be an official designation act and not a mere statement that one or more bodies are playing the role of independent mechanisms. 2) States may establish independent mechanisms. They can therefore start from scratch and create new bodies that will exercise the functions provided for in Article 33 (2). This option is made for States having no bodies that can fulfil these functions. Secondly, States may designate or establish ‘one or more independent mechanisms’. There are therefore again two possibilities. 1) States may designate or establish a single body to carry out the functions to promote, protect and monitor the implementation of the CRPD. This option can facilitate the coordination between different organisations and help them to establish a comprehensive approach to disability issues. 2) States may designate or establish several bodies which altogether play the functions provided for in Article 33 (2). States may therefore share these functions between several bodies, while federal or decentralised States may designate or establish regional or local bodies. As will be explained, Article 33 (2) also requires States to establish ‘a framework’, which means there should be some form of coordination between the independent mechanisms. 2. The Paris Principles The ‘Principles relating to the status and functioning of national insti­ tutions for the protection and promotion of human rights’, commonly called the Paris Principles, provide for the responsibilities, composition 43 This interpretation is consistent with the second sentence of Article 33 (2) CRPD which provides that States should take the Paris Principles into account ‘[w]hen designating or establishing’ the independent mechanisms.



national structures for implementation and monitoring35

and working methods of NHRIs. They were drafted at the First Inter­ national Workshop of NHRIs held in Paris in 1991 and endorsed by both the Commission on Human Rights and the General Assembly of the UN.44 The Paris Principles outline the different aspects of NHRIs according to the following headings: A. Competence and responsibilities; B. Compo­ sition and guarantees of independence and pluralism; C. Methods of operation; and D. Principles concerning the status of commissions with quasi-jurisdictional competence (the latter being only optional). These principles now constitute the basic guidelines of NHRIs. The World Conference on Human Rights, held in Vienna in 1993, affirmed in its Declaration and Programme of Action ‘the important and constructive role played by [NHRIs] …’ and encouraged ‘the establishment and strengthening of [NHRIs] having regard to the [Paris Principles]’.45 Several treaty bodies also issued general comments regarding their role in the implementation of human rights.46 In its annual resolutions, the Commission on Human Rights (now Human Rights Council) also encouraged States to establish and strengthen NHRIs and appreciated their cooperation at both the regional and international levels.47 At the European level, the Council of Europe adopted Recommendation No. R(97) 14 on the Establishment of Independent National Institutions for the Promotion and Protection of Human Rights and Resolution (97) 11 on Cooperation Between National Human Rights Institutions of Member States and Between Them and the Council of Europe.

44 Commission Resolution 1992/54, 3 March 1992, E/CN.4/RES/1992/54; GA Resolution 48/134, 20 December 1993, A/RES/48/134. 45 Vienna Declaration and Programme of Action, 25 June 1993, A/Conf.157/23, Part I, para. 36. 46 Committee on the Rights of the Child, General Comment No. 2, The role of independent national human rights institutions in the promotion and protection of the rights of the child, 15 November 2002, CRC/GC/2002/2; Committee on Economic, Social and Cultural Rights, General Comment No. 10, The role of national human rights institutions in the protection of economic, social and cultural rights, 10 December 1998, HRI/GEN/Rev.7 at 59; Committee on the Elimination of Racial Discrimination, General Recommendation No. 17, Establishment of national institutions to facilitate implementation of the Convention, 25 March 1993, A/48/18. 47 See Commission Resolution 2005/74, 20 April 2005, E/CN.4/RES/2005/74; Commission Resolution 2004/75, 21 April 2004, E/CN.4/RES/2004/75; Commission Resolution 2003/76, 25 April 2003, E/CN.4/RES/2003/76; Commission Resolution 2002/83, 26 April 2002, E/ CN.4/RES/2002/83; Commission Resolution 2001/80, 25 April 2001, E/CN.4/RES/2001/80; Commission Resolution 2000/76, 26 April 2000, E/CN.4/RES/2000/76; Commission Resolution 1999/72, 28 April 1999, E/CN.4/RES/1999/72; Commission Resolution 1998/55, 17 April 1998, E/CN.4/RES/1998/55.

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Two recent human rights treaties also refer to the Paris Principles. Article 33 (2) CRPD, which is the focus of this section, provides that when creating the independent mechanisms, States must take into account these Principles. The latter are thus the criteria to be met in order to comply with the Convention. The Optional Protocol to the UN Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT), which chronologically precedes the CRPD and was an inspiration for Article 33 (2) CRPD, also requires that States designate or establish national preventive mechanisms to visit places of detention, while creating a UN Sub-Committee on Prevention with the same function. Article 18 (4) OPCAT provides that States give due consideration to the Paris Principles when designating or establishing these mechanisms. In addition to setting out a general programme for NHRIs, the Paris Principles lay emphasis on two fundamental principles: independence and pluralism. Independence requires that NHRIs be free from governmental inter­ ference. This has a triple meaning under the Paris Principles. 1) NHRIs should be functionally independent. To guarantee this, they should be established ‘by a constitutional or legislative text’.48 With this requirement fulfilled, it will be impossible for government to change their powers without (special) parliamentary approval. 2) NHRIs should be personally independent. This means that their members should be able to act in a pressure-free environment and be appointed (and, if necessary, dismissed) according to a fair and clear procedure. They must also be able to choose their own staff and to determine their priorities. 3) NHRIs should be financially independent. They must have sufficient resources at their disposal, which should be determined preferably by parliament.49 This should enable NHRIs to carry out their activities without being subject to governmental oversight. Pluralism is the second fundamental principle of the Paris Principles. This principle links NHRIs with civil society. The Paris Principles provide that the composition of NHRIs should ensure ‘the pluralist representation of

48 Principle 2, A. Competence and responsibilities, Paris Principles. 49 Principle 2, B. Composition and guarantees of independence and pluralism, Paris Principles.



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the social forces (of civilian society) involved in the promotion and protection of human rights’.50 They also mention a series of actors who should be involved in the work of NHRIs: (a) Non-governmental organisations responsible for human rights and efforts to combat racial discrimination, trade unions, concerned social and professional organisations, for example, associations of lawyers, doctors, journalists and eminent scientists; (b) Trends in philosophical or religious thought; (c) Universities and qualified experts; (d) Parliament; (e) Government departments (if these are included, their representatives should participate in the deliberations only in an advisory capacity).51 NGOs are the actors that have the strongest links with NHRIs. Both NHRIs and NGOs can benefit from this relationship. On the one hand, through NHRIs NGOs can channel their demands to State authorities and thereby increase their impact. NHRIs also give NGOs the opportunity to coordinate their action, by allowing them to deal collectively with human rights issues that are in the ambit of different organisations. On the other hand, NGOs can help NHRIs to get in touch with local communities and to be appraised of the day-to-day problems affecting vulnerable groups. They can also make available their sound knowledge and the deeply rooted expertise they possess in the field of human rights to these institutions. NGOs, however, tend to be over-represented in NHRIs at the expense of other categories, such as trade unions, concerned social and professional organisations, trends in philosophical or religious thought, universities and qualified experts and parliament, which are mentioned in the Paris Principles.52 Governmental representatives may also be represented but in an advisory capacity. NGO dominance forgets that there are other organisations concerned with the promotion and protection of human rights, even if this might be incidental, and that they should also be associated in their implementation. A better balance in NHRI membership would also lead to a better understanding between both NGO and nonNGO forces.

50 Principle 1, B. Composition and guarantees of independence and pluralism, Paris Principles. 51 Ibid. 52 Ibid.

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Pluralism can be achieved in two ways: representation or cooperation.53 The Paris Principles state that NHRIs should ensure ‘the pluralist representation of the social forces (of civilian society) involved in the promotion and protection of human rights’ either ‘by powers which will enable effective cooperation to be established with, or through the presence of, representatives of’ the aforementioned actors.54 This means that these representatives should either be member of the NHRIs or be able to effectively cooperate with these institutions. Article 33 (2) CRPD requires that States take into account the Paris Principles when establishing or designating independent mechanisms. This reference to the Paris Principles raises three questions. The first question is if it is possible to apply the Paris Principles to actors other than NHRIs. The Paris Principles focus on bodies that deal with all human rights and it might therefore be difficult to apply them to bodies with specific mandates. In fact, by using the Paris Principles as criteria to evaluate the independent mechanisms, the drafters of the Convention ‘abstracted’ these Principles from NHRIs. This means that these Principles will probably have to be adapted according to the nature of these mechanisms. As far as independence is concerned, no changes are needed. With regard to pluralism, however, it will be necessary to determine which organisations duly represent the social forces (of civilian society) involved in the promotion and protection of’ disability rights and to ensure their representation in or allow them to effectively cooperate with the independent mechanisms. This issue will be further discussed in the next section. The second question is whether all of the independent mechanisms designated or established to promote, protect and monitor the implementation of the CRPD must comply with the Paris Principles. At first sight, it is seems that Article 33 (2), by stipulating that States should ‘take into account’ the Paris Principles, does not require this. The terms ‘a framework, including one or more independent mechanisms’ also seem to indicate that bodies other than these mechanisms could be part of this framework. This would however be against the spirit of Article 33 (2). Every single body within the framework must be independent and pluralist. There is no reason why some of the functions of independent mechanisms would be exercised by Paris Principles-compliant bodies and others 53 G. de Beco, ‘National Human Rights Institutions in Europe’ (2007) 7 (2) Human Rights Law Review 344. 54 Principle 1, B. Composition and guarantees of independence and pluralism, Paris Principles.



national structures for implementation and monitoring39

not, as this would create a double standard in the framework. It is essential that the promotion, protection and monitoring of the implementation of the Convention be carried out by bodies that comply with Paris Principles. As a result, the framework may not include bodies other than independent mechanisms.55 As will be seen, however, this does not prevent such bodies from also promoting, protecting and monitoring the implementation of the CRPD outside of this framework.56 The third question is who will evaluate the compliance of independent mechanisms with the Paris Principles (in the hypothesis that they should all meet them). With regard to OPCAT, the Sub-Committee on Prevention is entrusted with advising and assisting States in the establishment and strengthening of national preventive mechanisms, thereby checking whether these mechanisms meet the Paris Principles. In contrast, nothing is foreseen in the CRPD about the relationship between the UN Committee on the Rights of Persons with Disabilities and the independent mechanisms.57 However, the Committee will be able to evaluate the compliance of the independent mechanisms with the Paris Principles when examining the State reports on the implementation of the Convention. 3. National Human Rights Institutions (NHRIs) Since Article 33 (2) of CRPD refers to the Paris Principles explicitly, the functions of NHRIs should be examined. NHRIs have been created by States to implement human rights at the national level. They are a response to the gap between human rights standards and their practical application. NHRIs have mainly three functions: the monitoring and advising of State authorities; the promotion and providing of human rights educa­ tion  and; the handling of complaints on alleged human rights violations (the last function being optional according to the Paris Principles). 55 Note that there is a discrepancy between the English and French version, on the one hand, and the Spanish version, on the other hand, which confirms this interpretation of Article 33 (2) CRPD. While the former uses the terms ‘a framework, including one or more independent mechanisms’ and ‘un dispositif, y compris un ou plusieurs mécanismes indépendants’ (a framework, including one or more independent mechanisms), the later uses the terms ‘un marco, que constará de uno o varios mecanismos independientes’ (a framework, made up of one or more independent mechanisms). 56 As will be explained, this applies in particular to the promotion function which can be exercised by actors other than independent mechanisms as well. 57 Article 37 (2) CRPD, however, provides that the Committee has to ‘give due consideration to ways and means of enhancing national capacities for the implementation of the present Convention, including through international cooperation’.

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Regarding the first function, NHRIs examine the human rights compli­ ance  of legislation and practice. They evaluate not only their conformity with human rights treaties but also their broader implications for human rights enjoyment. NHRIs may also conduct general inquiries and submit reports to State authorities on human rights issues that seem important or urgent. Regarding the second function, NHRIs aim to increase awareness of human rights. They can do so both within and outside the formal edu­cation system. Some NHRIs also focus on research in order to promote a better understanding of human rights. NHRIs can boost cooperation between State and non-State actors concerned with the promotion and protection of human rights. They can serve as a platform where these actors can consult each other with regards to their human rights concerns. Involving both representatives of civil society and, in an advisory capacity, representatives of governmental departments, NHRIs can create a human rights dialogue between civil society and the public administration. As mentioned earlier, the participation of NGOs is particularly important, since these organisations may increase the impact of their demands by channelling them through the NHRI and since they have a sound knowledge and deeply rooted expertise in the field of human rights. NHRIs also help ensure that national human rights policies are consistent. Thanks to their broad mandate, they can help States to adopt coherent human rights policies. They can elaborate a general approach to human rights issues, including those issues straddling the competence of different public organs or different levels of powers in federal or decentralised States and, by so doing, ensure the mainstreaming of human rights. Furthermore, NHRIs can foster a national debate by disseminating information relating to specific human rights issues. An NHRI can also prove to be very valuable to the general public by setting up information points and special desks to direct individuals to other competent institutions. At the international level, NHRIs created the International Coordi­ nating Committee of NHRIs (International Coordinating Committee). The International Coordinating Committee is composed of four regional groups: Africa, Europe, the Americas, and Asia-Pacific.58 It is an association recognised under Swiss law with its own statutes.59 The International 58 The International Coordinating Committee consists of four NHRIs per regional group, i.e. 16 NHRIs in total. 59 Statute of the International Coordinating Committee of National Institutions for the Promotion and Protection of Human Rights, 30 July 2008, amended 21 October 2008, amended 24 March 2009 (ICC Statute).



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Coordinating Committee promotes the establishment and strengthening of NHRIs in compliance with the Paris Principles and facilitates their cooperation worldwide and their interaction with UN human rights monitoring mechanisms. The International Coordinating Committee gradually acquired an international position by increasing engagement in policy making as regards NHRIs.60 It also organises international conferences, which include thematic sessions, biannually, the last one of which was held in Geneva in March 2012. The OHCHR is closely linked to the International Coordinating Committee and created a National Institutions Unit which serves as its secretariat. To determine if NHRIs are in compliance with the Paris Principles, the ICC established a Sub-Committee on Accreditation. The latter is composed of one NHRI of each regional group, which is four NHRIs in total. With the support of the National Institutions Unit, the Sub-Committee is compiling a list of those institutions that comply, do not fully comply, or fail to comply with the Paris Principles. Those that comply are granted ‘A-Status’, those that do not fully comply are granted ‘B-Status’, and those that fail to comply are designated ‘C-Status’. This is one of the key tasks of the ICC. As a result, it is now possible to know how many NHRIs are recognised as such both globally and regionally.61 Only those institutions with A-Status can become voting members in the International Coordinating Committee; those with B-Status are only granted observer status. NHRIs with A-Status can also participate in the sessions of the Human Rights Council where they have their own tribune and may circulate documents under their own symbol number. The UN Committee on the Rights of Persons with Disabilities will be able to take advantage of the work of the International Coordina­ ting   Committee when evaluating the compliance of independent mechanisms with the Paris Principles. It may use the International Coordinating Committee’s General Observations in order to interpret these Principles.62 Regarding those independent mechanisms that are NHRIs, it will also benefit from their possible accreditation by the 60 See A.-M. Garrido and B. Kofod Olsen, ‘Coordination of the Work of NHRIs—From Liaison to Joint Achievements’, in R.F. Jorgensen and K. Slavensky (eds), Implementing Human Rights. Essays in Honour of Morten Kjaerum (Copenhagen: Danish Institute for Human Rights, 2007) 190. 61 A regularly updated list of accredited NHRIs is available at: http://www.ohchr.nhri .net. As of May 2012, 69 NHRIs had A-Status. 62 International Coordinating Committee, General Observations, June 2009; online http://www.nhri.net/2009/General%20observations%20June%202009%20 %28English%29.pdf.

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Sub-Committee on Accreditation, although this does not necessarily mean that these institutions are in the best place to promote, protect and monitor the implementation of the Convention. The Member States of the European Union have currently twelve NHRIs that fully comply with the Paris Principles (and are thus granted an A-Status).63 These institutions are part of the European Group of NHRIs, which covers the 47 Member States of the Council of Europe.64 They are (ranked by their date of creation) the French Commission nationale consultative des droits de l’homme, the Danish Institute for Human Rights, the Greek National Human Rights Commission, the Polish Commissioner for Civil Rights Protection, the Portuguese Provedor de Justiça, the Spanish Defensor del Pueblo, the Irish Human Rights Commission, the Northern Ireland Human Rights Commission, the Luxembourg National Advisory Commission for Human Rights, the German Institute for Human Rights, the UK Commission for Equality and Human Rights and the Scottish Commission for Human Rights.65 Very recently, the Netherlands also created an NHRI by transforming the Commissie Gelijke Behandeling into the College voor de Rechten van de Mens.66 Steps have been taken by NGOs, governments, and academic experts to establish similar institutions in Austria, Belgium, Italy and Switzerland. The reference to the Paris Principles in Article 33 (2) CRPD provides NHRIs with a stronger legal basis. While NHRIs have been recognised at the international level, the Paris Principles were not firmly anchored in international human rights law, as no binding document referred to these Principles. This is no longer true with the CRPD and OPCAT which require that States create independent mechanisms to promote, protect and implement the Convention and national preventive mechanism to visit places of detention, respectively. The question is whether the reference to the Paris Principles in Article 33 (2) CRPD requires that NHRIs be given the role of independent mechanisms in light of the Convention. There are arguments in favour and against this option. 63 See FRA, National Human Rights Institutions in the EU Member States. Strengthening the Fundamental Rights Architecture in the EU I (Vienna: FRA, 2010); online: http://www.fra .europa.eu. 64 See G. de Beco, ‘Networks of European National Human Rights Institutions’ (2008) 14 (6) European Law Journal 860. 65 The UK has therefore three NHRIs with A-Status which are each competent according to their own powers. Together, however, they have only one voting right in the International Coordinating Committee. 66 See http://www.naareenmensenrechteninstituut.nl/home.



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Several arguments plead for giving the role of independent mechanisms to NHRIs. There are both substantial and practical arguments. If the Paris Principles were mentioned in Article 33 (2), it is because NHRIs were the very inspiration for the drafters of the Convention. As it is possible to apply these Principles to bodies with specific mandates provided certain adaptations are made, the safest option is to designate NHRIs. NHRIs are not concerned with implementation as such, which is the responsibility of government, but with promotion, protection and monitoring, like the independent mechanisms. Furthermore, as NHRIs, these mechanisms provide DPOs, in addition to other actors, with an institutionalised channel through which they can address governments. Therefore, in the words of Gerard Quinn, ‘the default setting lies in favour of [NHRIs]’.67 Giving the role of independent mechanism to an NHRI will also save a State from having to create a new representative body. In addition, it will no longer have to create new bodies with a human rights mandate in the future, because the NHRI will have residual human rights powers. NHRIs also have the necessary human rights knowledge and expertise and, therefore, can integrate disability issues in the State’s human rights framework.68 For many of them this is not new and they already focus on disability rights, with the support of the International Coordinating Committee. When not yet done so, a State can also create an NHRI and give it the role of independent mechanism, which allows it to ‘kill two birds with one stone’. There are also arguments against giving NHRIs the role of independent mechanisms. Although there are both substantial and practical arguments, doing so without evaluating the consequences for their workload could weaken them or not allow them to play this role properly. The tasks of the independent mechanisms are considerable. NHRIs have limited capacity and may not be able to promote, protect and monitor the implementation of the CRPD. Indeed, not all of NHRIs exercise these functions on equal footing with regard to human rights. As they are allowed to do by 67 G. Quinn, ‘The UN Convention on the Rights of Persons with Disabilities. National Institutions as Key Catalyst of Change’, in Comisión Nacional de los Derechos Humanos de México, Network of the National Institutions for the Promotion and Protections of Human Rights of the Americas and OHCHR (eds), National Monitoring Mechanisms of the Convention on the rights of Persons with Disabilities (Mexico: Comisión Nacional de los Derechos Humanos, 2008) 130. 68 A. Muller and F. Seidensticker, The Role of National Human Rights Institutions in the United Nations Treaty Body Process (Berlin: German Institute for Human Rights, 2007) 75.

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the Paris Principles, they often give priority to certain functions. While some of them have more of a monitoring and advisory role, others focus more on promotion and research. Still others principally do complaints handling. Therefore, if NHRIs were to be designated as the independent mechanism, they might not fulfil all of the functions provided for by Article 33 (2) equally. Other bodies may be better placed to be the independent mechanism. Many organisations are acquainted with disability issues, at least more than NHRIs. It might be easier, and sometimes more efficient, to designate existing bodies that are already dealing with these issues and give them a human rights mandate or otherwise to create a new representative body which would focus solely on the CRPD. This last option is not necessarily more expensive, as it could happen that expanding the mandate of established bodies entails more costs than creating smaller bodies with specific mandates. The conclusion is that NHRIs should not blindly be designated as the independent mechanism, despite the reference to the Paris in Article 33 (2) CRPD. In the hypothesis that there is an NHRI in a State, the best option could be either to designate the NHRI, to designate or establish another body or to combine both. This has to be evaluated on a case-by-case basis. As will be seen later, often it will be advantageous to designate NHRIs in addition to other bodies, as is allowed by Article 33 (2). While NHRIs are certainly able to exercise some of the functions of independent mechanisms, additional bodies are needed to fulfil the other functions, depending on their mandates, or to ensure the participation of persons with disabilities. A reasonable division of labour as well as partnerships will have to be established between them. Whatever the option chosen, NHRIs should be involved in examining the advantages and disadvantages of the different options. One last question is whether the reference to the Paris Principles in Article 33 (2) obliges States to have an NHRI.69 A strict interpretation of these Principles could lead to a positive answer. The Paris Principles provide that NHRIs should have ‘as broad a mandate as possible’.70 In view of this, the independent mechanisms should address all human rights and, therefore, cannot be but NHRIs. In addition, the Paris Principles 69 Interestingly, the initial proposal was to oblige States to create NHRIs. See Quinn, ‘Resisting the ‘Temptation of Elegance’: Can the Convention on the Rights of Persons with Disabilities Socialise States to Right Behaviour?’, op. cit., 245–246. 70 Principle 2, B. Competence and responsibilities, Paris Principles.



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enumerate a series of functions which should be fulfilled by one single body altogether, even if that body may focus on some of them. These arguments, however, ignore that Article 33 (2) only applies the Paris Principles to bodies that promote, protect and monitor the implementation of the CRPD. Moreover, the functions of independent mechanisms can be shared between different bodies, since States are allowed to create more than one independent mechanism. The reference to the Paris Principles nonetheless created ambiguity. While it does not oblige States to have an NHRI, a strict interpretation of the CRPD could lead to the opposite conclusion. The answer, therefore, probably lies between the two. As ‘the default setting lies in favour of [NHRIs]’,71 these institutions are the best pedigree for the independent mechanisms. This means that if there is an NHRI, it should ideally at least be one of the independent mechanisms and have a leading role in the framework. If the NHRI does not fully comply with the Paris Principles, it should be strengthened with a view to this. If there is no NHRI, Article 33 (2) could be an incitement for States to establish one. Doing so will save them from creating new bodies with a human rights mandate in the future. 4. Functions of Independent Mechanisms Article 33 (2) CRPD provides that the independent mechanisms should have three functions: promoting, protecting and monitoring. The first function, promotion, is raising awareness of the CRPD by undertaking promotional activities, such as collecting, producing and disseminating information and materials, organising public events and encouraging community initiatives. All these activities aim to increase attention for disability rights, thereby hopefully leading to a corresponding change in behaviour. The purpose is to foster an acceptance of the values underlying the Convention, which is necessary for their internalisation. Promotion can also be achieved by human rights education. Training in disability rights should be offered to all people whose activities could affect persons with disabilities. The question ‘What about the rights of persons with disabilities?’ should come to everyone’s mind before making a decision that potentially affects these persons. In this way, promotion 71 Quinn, ‘The UN Convention on the Rights of Persons with Disabilities. National Institutions as Key Catalyst of Change’, op. cit., 130.

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can contribute to the mainstreaming of disability rights. Furthermore, it is necessary to raise awareness of the CRPD among the general public in order to encourage them to try and integrate persons with disabilities into society, besides adapting society to persons with disabilities. The promotional activities should also aim to inform persons with disabilities about their rights and make sure that they are aware of the protection mechanisms available. The information should be presented in a format that can easily be understood by them. Promotion also involves the creation of a large platform of dialogue between representatives of civil society organisations and experts, on the one hand, and representatives of the public administration, on the other hand. This platform should help the independent mechanisms to define their promotional activities. It will also allow civil society organisations to address their concerns and share their expertise with the public administration. Promotion is a large domain. It will therefore be impossible for independent mechanisms to exercise the promotion function alone. Further­ more, in practice, governments are already collecting, producing and disseminating information and materials, organising public events and encouraging community initiatives, as they are obliged to do according to Article 8 of the Convention. The fact that the State is undertaking promotional activities is not a problem, provided the disseminated information is accurate. DPOs of course also promote disability rights. Promotion thus straddles the competences of different actors, be they focal points, independent mechanisms or DPOs. In contrast to the protection and monitoring functions, the promotion function can be shared between these actors, because it does not require the same degree of independence as opposed to the former functions. Promotion can therefore be done by multiple actors including governmental ones outside of the framework. As a result, it is not necessary to entrust the independent mechanisms with tasks that are already carried out by other actors. This would lead to duplication. It is also not necessary for the independent mechanisms to take over promotional activities that are undertaken by government. Instead, these mechanisms should help the State to coordinate these activities and to identify which issues slip through the net and take care of these issues by themselves where necessary. They could therefore be entrusted with both providing advice and expertise and elaborating a general strategy to promote the CRPD in collaboration with the other actors, while filling in the gaps. The role of independent mechanisms in the creation of a large platform of dialogue will be essential to achieve this.



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The second function, protection, is ensuring that violations of disability rights are stopped and remedied. In practice, the protection of disability rights takes mainly the form of complaints handlings. It also involves action in the name of victims. The idea is to help persons with disabilities claim their rights when they deem they are violated. Complaints handling requires quasi-judicial powers. While the first purpose is to find an arrangement between the concerned parties, the competent body should nevertheless be able to help persons with disabilities to obtain a binding decision where necessary. This means that independent mechanisms should assist them in litigation so that they can obtain a binding judgements. They should therefore have the power to direct them to the appropriate courts and represent them where necessary. In those States that also ratified the Optional Protocol to the CRPD— which creates a communication procedure before the UN Committee on the Rights of Persons with Disabilities—protection includes helping persons with disabilities to introduce communications before this Com­ mittee. Although neither NGOs nor independent bodies received the man­ date to introduce collective communications, Article 1 Optional Protocol provides that the Committee may ‘receive and consider communications from or on behalf of individuals or groups of individuals subject to its jurisdiction who claim to be victims of a violation by that State Party of the provisions of the Convention’. Independent mechanisms may therefore act in the name of such individuals and introduce communications on their behalf. This, however, is no equivalent to an actio popularis, i.e. judicial action on behalf of the general public. Protection also includes filling amicus curiae briefs to courts, i.e. giving comments or providing expertise to judges. Appearing before the courts may be useful in order to acquaint them with the Convention. At the inter­ national level, independent mechanisms may explain the human rights situation of disabled persons in their country to the UN Committee on the Rights of Persons with Disabilities in relation to communications. They may also do so before the European Court of Human Rights, as sometimes done by NHRIs. Protection entails a considerable workload and know-how. It also requires a high degree of independence, because it is mainly undertaken against State authorities. In many States, the protection function is already carried out by equality bodies or ombudsmen, which either focus on discrimination in general or on discrimination based on disability in particular. These equality bodies or ombudsmen should be able to continue their work.

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On the other hand, it might be unwise to change the mandates of bodies which have no quasi-judicial powers, as they might not have the necessary expertise to fulfil the protection function. Regarding NHRIs, it should also be mentioned that many of them do not have such powers, which are optional according to the Paris Principles but compulsory under the CRPD. The possibility offered by Article 33 (2) CRPD to have several independent mechanisms allows States to designate equality bodies and ombudsman too in order to remedy this. However, equality bodies and ombudsman do not, as a rule, have human rights in their mandates. While the former combat discriminations, the latter are concerned with maladministration. They mainly refer to national legislations. If they were to have the function to protect the implementation of the CRPD, it would be necessary that they also address human rights and focus on the entire Convention. The third function, monitoring, is assessing the human rights situation of persons with disabilities. The purpose of monitoring is both to alert States of potential human rights violations and to help them to define the measures that can prevent such violations. Thus, as far as disability rights are concerned, it is necessary not only to detect breaches of the CRPD but also to examine how social structures could be adapted in order to facilitate its implementation. Because this may involve criticism against the government, the monitoring function should be exercised independently from State authorities. Also, as will be discussed later, it is important to associate civil society, especially since Article 33 (3) CRPD provides that civil society should be ‘involved and participate fully in the monitoring process’. Monitoring implies the evaluation of the compliance of both legislation and practice with human rights. As far as legislation is concerned, it involves making recommendations and proposals to government for adopting new legislation or amending existing legislation. This requires the examination of the compatibility of legislation with the Convention. Independent mechanisms should also verify that disability rights are complied with in practice by visiting places where their violation often occurs, such as hospitals, welfare centers and care homes, and make recommendations to improve the human rights situation of persons with disabilities. The data relating to disability issues collected under the promotion function will help them to identify these places and situa­tions. The function of visiting places of detention of national preventive mechanisms under OPCAT partially overlaps with that of monitoring of independent mechanisms. Should some bodies have both roles simultaneously this might



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strengthen their mandate regarding people placed in institutional care among others. The monitoring of disability rights also includes conducting general inquiries on disability issues, as done by NHRIs in relation to human rights. These could be issues that are urgent or less commonly dealt with. Independent mechanisms, however, should be able to obtain the necessary information. As required by the Paris Principles,72 they should have the power to obtain any information and hear any person. The general inquiries could then be presented in the form of reports addressed to State authorities. Another aspect of monitoring is the contribution to State reports for the UN Committee on the Rights of Persons with Disabilities. The Paris Principles require that these institutions contribute ‘to the reports which states are required to submit to United Nations bodies and committees … with due respect for their independence’.73 It is, however, not advisable that they draft these reports, because this is the task of government. They could however draw parallel reports. What they could also do is to assist civil society organisations in drafting ‘shadow reports’ by providing guidance and advice. In addition, the independent mechanisms could train public officials responsible for preparing State reports by explaining to them what their reporting obligations are and urging them to take these obligations seriously. Independent mechanisms could be useful at another stage of the State reporting process. NHRIs can ensure the follow-up to the concluding observations of treaty bodies by organising meetings to which key actors concerned with the promotion and protection of human rights are invited.74 They can act as facilitators during these meetings and urge State authorities to implement the recommendations of the treaty bodies. Likewise, independent mechanisms can invite both State and non-State actors to discuss the con­cluding observations of the UN Committee on the Rights of Persons with Disabilities and encourage focal points to implement its recommendations. The monitoring function of independent mechanisms is the most innovative one and is generally not yet carried out by any independent body. As a rule, it will therefore be necessary to establish new bodies or adapt 72 Principle (b), C. Methods of operation, Paris Principles. 73 Principle 3 (d), A. Competence and responsibilities, Paris Principles. 74 See L. Seidensticker, Examination of State Reporting by Human Rights Treaty Bodies. An Example of Follow-Up at the National Level by National Human Rights Institutions (Berlin: German Institute for Human Rights, 2005).

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the powers of existing ones. The exception is NHRIs for which monitoring is the main activity. The Paris Principles give these institutions broad powers in this regard.75 NHRIs evaluate compliance with human rights of both legislation and practice and conduct general inquiries on human rights issues. Many of them cover disability rights and, therefore, there is no obstacle in designating them as independent mechanism to monitor the implementation of the CRPD. Giving NHRIs the monitoring function could nonetheless create problems. It affects their independence, because this means that they will be obliged to focus on the CRPD. Since they have limited capacity, they will be less able to monitor the rights of other vulnerable groups. It is therefore important to provide those NHRIs having to carry out the monitoring function with additional funding. Even if they were to be granted such funding, it means that they will have to spent more energy on some rights than on others, which is somewhat contrary to the indivisibility of human rights. This, however, is the unavoidable consequence of the reference in Article 33 (2) CRPD to the Paris Principles, which has led to an imbalance in the mandates of NHRIs. The aforementioned functions of independent mechanisms will have to be articulated with those of focal points. In theory, the division of labour between both of them seems clear. While the focal points are generally in charge of implementation, the independent mechanisms are entrusted with promotion, protection and monitoring. The latter functions may be considered to be part of and contribute to the implementation of the CRPD but without the independent mechanism being responsible for this implementation as such. The focal points are part of government; the independent mechanism should remain outside of it. This double creation is well-thought of, since States are primarily responsible for the implementation of human rights, while they need independent bodies that provide external surveillance. This division of labour implies a clear distance to be established between focal points and independent mechanisms. This requires that they work separately. Besides having a different location, nobody should be appointed in the focal points and in the independent mechanisms simultaneously. In practice, however, the line might not always be easy to draw, because certain activities will be exercised by both. While a strict separation is necessary for the protection and monitoring functions, the focal points and the independent mechanisms will have to collaborate in 75 See Principle 3 (a), A. Competence and Responsibilities, Paris Principles.



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exercising the promotion function. Even with regard to protection and monitoring, cooperation will de facto be required, since the focal points will be the principal information providers and main recipients of the recommendations of the independent mechanisms. Cooperation with focal points, however, creates difficulties. On the one hand, independent mechanisms have to remain independent from focal points. On the other hand, they should collaborate with these focal points. The fact is that when the independent mechanisms criticise State action, the focal points might not be willing to continue their relationship with them or, worse, try to weaken them. This is why it is important that these mechanisms be, as required by the Paris Principles, established ‘by a constitutional or legislative text’.76 There is, as a result, a tension between cooperation with focal points and the ability to take position against government. The independent mechanisms will have the delicate task to navigate between independence and cooperation. The respective role of focal points and independent mechanisms can again be illustrated with regard to State reports. As explained earlier, the independent mechanisms should preferably not draft these reports. These mechanisms have a monitoring function vis-à-vis the government, just like the treaty bodies to whom the State reports are addressed. They could, however, support the focal points by providing interpretation guidelines and verifying that they carry out their reporting obligations. Another example is indicators. Article 31 (1) CRPD provides that States should ‘collect appropriate information, including statistical and research data’. This information could allow them to use indicators based on the Convention in order to evaluate progress in the realisation of disability rights. A clear sharing of tasks is necessary in this area. On the one hand, independent mechanisms could establish the indicators (which includes providing a definition for the term handicap, for instance) interpret the information and make recommendations on the measures to be taken to implement the Convention. They could also critically review and, where necessary, supplement this information. One the other hand, focal points could gather the information to apply the indicators, since they are in the best position to acquire this information and since so doing is required under Article 33 (1) CRPD. According to Article 31 (2) CRPD, they should also disaggregate the information in order to identify discriminations.

76 Principle 2, A. Competence and responsibilities, Paris Principles.

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In this way, both the focal points and the independent mechanisms could cooperate while remaining in their own sphere of competence. 5. Framework of Independent Mechanisms Article 33 (2) CRPD provides that States must designate or establish ‘a framework, including one or more independent mechanisms, as appro­ priate’. The idea is also that the independent mechanisms, whatever their number or shape, should form a coherent whole. The reference to a framework has been foreseen by Article 33 (2), because different bodies oper­ating in isolation would be counterproductive, especially if they share similar functions. There should therefore be some form of cooperation and leadership. Although there is no clear definition for the term ‘framework’, it is possible to examine the conditions under which the establishment or designation of the independent mechanisms could result in a framework. The flexibility of Article 33 (2) CRPD allows for different combi­nations.77 This is in line with the Paris Principles, which offer a certain leeway in determining the exact form of NHRIs. In its Resolution endorsing the Paris Principles, the General Assembly emphazised that a State establishing an NHRI has ‘the right […] to choose the framework that is best suited to its particular needs at the national level’.78 Likewise, there is no standard model for the framework of independent mechanisms. That this framework may be adapted to the national context is confirmed by the terms ‘as appropriate’ of Article 33 (2). After having examined which existing bodies could carry out the functions to promote, protect and monitor the implementation of CRPD, States could arrive at the following three, non-exhaustive, options. First, a State might either have an NHRI or an equality body or ombudsman that is already exercising these functions. This is the easiest option. The State could simply designate the NHRI or the equality body or ombudsman. As explained earlier, NHRIs are particularly well placed to be the independent mechanism. Some of them are moreover their State’s equality body as well, which might increase the chances that they carry 77 OHCHR, Thematic study on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities, op. cit., 12. 78 GA Resolution 48/134, 20 December 1993, A/RES/48/134, para. 12.



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out the full mandate of independent mechanisms. The designation of an NHRI or an equality body or ombudsman might however require certain adaptations, especially if the designated body has no A-Status, although this is not the only factor that comes into play. It might also be necessary to involve civil society organisations by ensuring their representation in the independent mechanism or, at least, establish partnerships with them. Another possibility is to create an NHRI when the State has none. This NHRI will then exercise the functions of independent mechanisms. This would ‘kill two birds with one stone’, as already mentioned. In this option, the NHRI or the equality body or ombudsmen will be the only independent mechanism. The advantage here is that it guarantees visibility towards persons with disabilities. The question, however, is whether a single independent mechanisms can constitute a framework, considering that no other bodies can be part of it. Although this might sound odd, Article 33 (2) CRPD does not seem to exclude it, since it requires States to designate or establish ‘a framework, including one or more independent mechanisms’.79 This means that the framework is to be made up of only one independent mechanism, in which case both the framework and the independent mechanism would overlap. However, it might be considered that the designation of a body combined with the adaptations made to that body results in a kind of framework. In practice, it also appears that a single independent mechanism can operate as a framework through its cooperation with other actors. Secondly, a State might have both an NHRI and an equality body or ombudsman which already exercise the functions to promote, protect and monitor the implementation of the CRPD. This is the most comprehensive option. The State can designate both the NHRI and the equality body or ombudsman and give them alone or together the functions of inde­ pendent mechanisms.80 For instance, the NHRI might be entrusted with the monitoring function and the equality body or ombudsman with the protection function, while the promotion function might be attributed to

79 G. de Beco, Study on the Implementation of Article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe, Office of the High Commissioner of Human Rights (OHCHR) Regional Office for Europe 53. 80 See Commission nationale consultative des droits de l’homme, Avis sur les mécanismes nationaux prévus par la Convention relative aux droits des personnes handicapées, November 2009; online: http://www.cncdh.fr/IMG/pdf/Avis_mecanismes _nationaux_conv.pers.hand.191109.pdf.

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both of them. The advantage of this combination is that it benefits from the mutual expertise of both human rights and equality bodies.81 As with the first option, however, this option may require certain adaptations to be made so that the designated bodies meet the Paris Principles. In this option, both the NHRI and the equality body or ombudsman would be the independent mechanisms. There is no doubt that several independent mechanisms constitute together a framework. This might even be the optimal solution to implement Article 33 (2) CRPD, since it increases the chances of covering the full mandate of the independent mechanisms. The designation of several independent mechanisms, however, requires coordination. These mechanisms should therefore concentrate their efforts and work with each other. This requires that they organise their cooperation in one way or another. This can be achieved either by mutual representation in the other independent mechanism or participation in meetings or organising joint meetings. A related question is the necessity to entrust one independent mechanism with leading the framework. In general, NHRIs are often well placed to do so, since they are already creating broad networks and running coalitions. Thirdly, a State might have neither an NHRI nor an equality body or ombudsman which already exercises the functions of independent mechanisms. It might also have one that cannot exercise these functions. The State will therefore have to establish or designate another body. It could establish or designate a representative body in which civil society organisations are duly represented, as required by the Paris Principles. The representatives of the public administration would also take part in the independent mechanisms, but in an advisory capacity. In other words, the State would establish an NHRI-type body with the sole mandate to protect, promote and monitor the implementation of the CRPD. An alternative could be to establish or designate a representative body in addition to the NHRI and/or the equality body or ombudsman. This would thus be a mix of the third option with the first or the second option. In this option, the representative body would be the only independent mechanism, as with the first option. The framework would be made up of only one independent mechanism. It could operate as a framework, especially since it would mainly be composed of representatives of civil society organisations. As mentioned above, it is also possible to combine option 81 OHCHR, Thematic study on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities, op. cit., 20–21.



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one or two with option three, in which case the framework would be made up of the repre­sentative body in addition to the NHRI and/or the equality body or ombudsman. This could be especially close to Article 33 (2), since it would guarantee the participation of civil society organisations in this framework while ensuring that the full mandate of independent mechanisms is covered. As with the second option, this will require organising their cooperation and giving the lead of the framework to one of the independent mechanisms. Finally, the three options can be tailored to federal or decentralised States. It is with these States in mind that the drafters of the CRPD inserted in Article 33 (2) the possibility of designating or establishing more than one independent mechanism. A federal or decentralised State could therefore designate or establish regional or local bodies in addition to its national body or bodies. This will bring the independent mechanisms closer to regional or local realities. The State could either appoint different NHRIs and/or equality bodies or ombudsmen, or both, or create or designate several bodies in which civil society organisations are duly represented. It will however also be necessary to organise their cooperation. Another possibility is to work the other way around. A federal or decentralised State may designate or establish a single independent mechanism and involve regional or local entities in this mechanisms. This could be achieved by allowing the regional or local entities to appoint some of the members of the single independent mechanism and by creating regional or local sections in this independent mechanism which would focus on disability rights in these regional or local entities in cooperation with the other sections to address cross-regional issues if necessary. In this way, the independent mechanism will itself be the framework in which cooperation would take place. C. Civil Society (Article 33 (3) CRPD) One of the essential characteristics of the CRPD is its emphasis on the involvement of civil society. Under the slogan ‘Nothing about us without us’, DPOs participated actively in the negotiations, something which is reflected throughout the Convention. Although the main focus will be on Article 33 (3), other provisions dealing with this will therefore also be examined. This section examines the participation of civil society organisations. It is divided into two sub-sections: 1) ‘Nothing about us without us’; and 2) multi-level involvement of civil society.

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1. ‘Nothing About us Without Us’ As mentioned in the first chapter, the negotiation of the CRPD has proven to be an unprecedented exercise in transparency towards civil society and the participation of DPOs in particular. The slogan adopted by the disability rights movement during the process of negotiations, ‘Nothing about us without us’, did not only symbolise their presence and influence at the Ad Hoc Committee but also represents one of the fundamental principles which has been incorporated in the Convention. Indeed, miscellaneous articles of the CRPD make reference to the obligation of States to involve civil society organisations and DPOs in particular. The involvement of civil society is therefore not limited to Article 33 CRPD, but should be addressed in a transversal manner as an integral part of the implementation of the Convention. First and foremost, it follows from the primacy of the ‘best interest principle’ that the target group should be included in the decision-making process. Article 4 (3) CRPD therefore reads: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations.

Inclusion of persons with disabilities in government policy-making is in other words part of a human rights impact assessment which should precede the executive or legislative adoption of disability policies, on the one hand, and which should accompany their implementation, on the other hand.82 Being more easily acceptable for persons with disabilities, such policies will be marked by a greater legitimacy and a larger ownership.83 This dimension of the implementation process will undoubtedly be one of the key challenges for State authorities to put into practice and should receive the necessary attention during and after the ratification process. The CRPD of course does not lose sight of the proper role civil society should have in the implementation of the Convention. Civil society is composed of autonomous components responsible for setting their own

82 G. de Beco, Non-judicial Mechanisms for the Implementation of Human Rights in European States (Brussels: Bruylant, 2009) 257–308; T. Landman, Studying Human Rights (London: Routledge, 2006) 126–139. 83 Organisation for Economic Co-operation and Development, Open Government, Fostering Dialogue with Civil Society (Paris: OECD Publishing, 2004) 216.



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agenda and for pursuing their own priorities independent of government objectives. The positive obligation States have to associate representative organisations of persons with disabilities with their policy-setting in no way interferes with the classic monitoring role DPOs have with regard to the implementation of the CRPD. Overall, the CRPD therefore embodies the principle of ‘Nothing about us without us’ through an integral approach to civil society involvement in all issues concerning persons with disabilities. Turning specifically to the monitoring dimension of civil society involvement, Article 33 (3) CRPD provides that civil society should ‘be involved and participate fully in the monitoring process’. The Paris Principles also guarantee the participation of civil society in independent mechanisms (which makes Article 33 (3), to a certain extent, redundant and which means that this participation should actually concern all of the functions of these mechanisms). There is no single definition for the term civil society.84 As far as the CRPD is concerned, the most concerned organisations are DPOs. These organisations are to disability rights what NGOs are to human rights in general. DPOs should therefore be involved in the work of the independent mechanisms. These organisations are, as a rule, the closest to persons with disabilities and have the greatest expertise in disability issues. As is often the case with DPOs themselves, the direct participation of persons with disabilities in independent mechanisms is also desirable. While the large involvement of DPOs is recommended, there are obstacles. These organisations are prone to struggle and are not always representative. Regulation by States is therefore necessary to protect civil society from unequal power relationships.85 States should check that DPOs really defend the rights of those people in whose name they pretend to speak. They could establish objective criteria for their participation with a view to involving only those organisations that qualify. The system should however be flexible and allow for newly established organisations that meet the said criteria to also be included. Furthermore, provisions 84 Michael Edwards, for instance, defines civil society in three ways. First, it can be understood as associational life, which is distinct from states and markets. Secondly, civil society can be considered as the good society, which is a society based on values. Thirdly, civil society can be regarded as the public sphere, which is an arena where deliberations take place. He concludes that civil society is as the same time the three of them. See M. Edwards, Civil Society (Cambridge/Malden: Polity Press, 2004). 85 M. Walzer, ‘The Civil Society Argument’, in C. Mouffe (ed.), Dimensions of Radical Democracy. Pluralism, Citizenship, Community (London/New York: Verso, 1992) 104.

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should be made to allow DPOs to complain if they deem to have been excluded unwarrantedly. The Paris Principles also provide for the participation of civil society organisations. In addition to the involvement of NGOs, they recommend that of ‘trade unions, concerned social and professional organisations for example, associations of lawyers, doctors, journalists and eminent scientists’.86 Trade unions and social and professional organisations, such as medical associations, concerned with the promotion and protection of disability rights, should therefore be involved in the work of the independent mechanisms. According to the Paris Principles, trends in philosophical or religious thought, universities and qualified experts, parliament, but also, albeit in an advisory capacity, the public administration should likewise be involved.87 Although DPOs are the pre-dominant actor, it is important that all these actors be involved as well in the work of the independent mechanisms. Making room for the participation of civil society, however, does not mean that this will work. Because it depends on resources, access to deliberations is not equal.88 Participation also needs funding and connections. Without support, disabled people might not be able to express their opinion in deliberations. In addition, they might not be willing to invest in discussions having wider implications, in contrast to experts who will see this as an opportunity for increasing their knowledge. States should therefore ensure that persons with disabilities benefit from financial help to participate in the independent mechanism. Financial help, however, might ensure equal opportunity to deliberate but not equal capacity. Inequalities reduce the ability to make oneself heard, with the result that deliberation, despite being equally accessible, remains affected by these inequalities.89 As a result, persons with disabilities might not be able to participate meaningfully in debates without capacity building. For obvious reasons, they may need special measures depending on their disability. In addition, they must be able to understand the policy issues that are being dealt with. Because such issues are nowadays increasingly complex, they should be explained in a format adapted 86 Principles 1, B. Composition and guarantees of independence and pluralism, Paris Principles. 87 Ibid. 88 J. Cohen, ‘Deliberation and Democratic Legitimacy’, in A. Hamlin and P. Pettit (eds), The Good Polity. Normative Analysis of the State (Oxford: Basil Blackwell, 1989) 31. 89 N. Fraser, ‘Rethinking the Public Sphere: A Contribution to the Critique of Actually Existing Democracy’, in F. Barker, P. Hulme and M. Iversen (eds), Postmodernism and the Re-reading of Modernity (Manchester/New York: Manchester University Press, 1992) 206.



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to them. Persons with disabilities must also be familiarised with the CRPD, which they must be able use to make their claims. 2. Multi-level Involvement of Civil Society As briefly demonstrated in the previous section, the empowerment of civil society to seize ownership of the CRPD takes the shape of a two-pronged approach as to the nature of its involvement: implementation, on the one hand, and promotion, protection and monitoring, on the other hand. While such a distinction is strictly speaking irrelevant from a formal point of view, practically the interaction between State actors and DPOs may be defined by it. The manner in which DPOs articulate this empowerment depends on numerous factors such as the nature of the activities they organise, the partnerships they create and the stakeholders they engage with. Their manifestation may be cooperative or confrontational, neutral or biased but will always be in function of their proper national disability rights agenda. DPOs will need to organise themselves to be able to deal with multi-level engagement which will be defined by the objective pursued and the process of which they may be part of. In this respect, their relationship with the national structures for the implementation and monitoring of the Convention will play a crucial role. To start with, the CRPD empowers DPOs to engage directly with the State authorities, while at the same obliging the latter to establish a working relationship with DPOs. This interaction will most likely happen through the focal points and coordination mechanism where the latter exists. Staying true to the CRPD, the focal points and coordination mechanism will at regular intervals either formally or informally consult DPOs concerning disability policy development and implementation. This may consist of a vast array of activities including: • DPOs’ invited during hearings in (inter-)ministerial meetings or parliamentary committees; • Larger public consultations organised through permanent websites through which the government can also publicly communicate about its CRPD implementation and realisation of its disability rights policies; • Focal points setting up joint initiatives with DPOs to promote the CRPD and to raise awareness on disability issues; • Focal points organising regular training sessions for DPOs on legal and technical issues or provide guidance to civil servants on how to involve civil society in their work; • Focal points or coordination mechanism setting up a framework consisting of internal rules and the conclusion of gentlemen agreements

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with DPOs concerning the handling of complaints from persons with disabilities; • Focal points or coordination mechanism setting up partnerships for the development of indicators and statistics; specialised researched institutes and DPOs receiving government contracts to develop research which may serve as groundwork for legislative proposals; • DPOs being part of national delegations during international events related to disability rights or government may push for the candidacy of an independent expert in various regional or international bodies and agencies. Particular attention should of course also be paid to their involvement in the establishment of a disability rights action plan and the process of national CRPD reporting before the UN Committee on the Rights of Persons with Disabilities. To fulfil its obligations under Article 4 (3) CRPD, the State may set up advisory boards or councils, as mentioned earlier. The latter will be a ‘privileged consortium’ of DPOs and other non-State actors as well as ministerial representatives towards which governement is committed to regularly consult, inform and provide feedback following the consultation. Such advisory boards or councils can take one of the two following management models. It is either State-driven which means the focal points—or the coordination mechanism—take the initiative, set the agenda and decide upon the follow-up. In this model the involvement of DPOs is reactive and determined in function of the realisation of governmental objectives. Such a model may be an offspring of the coordination mechanism or the lead focal point. However, the model may also be based on an egalitarian principle whereby State and non-State actors are on equal footing and jointly manage the board or council. DPOs then may convoke a meeting and determine the agenda according to the established internal rules. This model leans towards an independent consultative mechanism which can easily be confused with the bodies established or designated under Article 33 (2) CRPD but is not necessarily the same. Such a board or council would exist virtually, without a staff or resources, and would act purely as a neutral meeting ground. Also, State actors may only be involved in the work of the independent mechanism with advisory capacity, as required by the Paris Principles, and in no way manage this mechanism. Both the independent mechanism and the abovementioned advisory boards or councils can exist in parallel but  this depends upon the composition and mandate of the independent  mechanisms. Where the latter have a



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mandate to promote, protect and monitor and include representatives of the coordination mechanism  and/or the focal points—with advisory capacity—the usefulness of  an advisory board or council diminishes to some extent. However, where a State has designated or created independent mechanisms with the bare minimum of mandate and composition, such a board or council may have an existential purpose. Nevertheless such an option does not seem preferable. Rather it is opportune that the State creates strong independent mechanisms, thereby giving weight to its existence and shifting part of the initiative towards representative organisations of persons with disabilities in an official and structured manner and in line with the spirit and text of the CRPD. This of course does not prevent the State from investing in DPO capacity building and from setting up its own channels of communication or consultation, as required under Article 4 (3) CRPD. Noteworthy, however, is that the manifestation of civil society within the governmental sphere can take different shapes which, to some extent, will and should not always be regulated. DPOs are of course by nature at liberty to exercise their autonomous role in all issues, governmental or non-governmental, related to persons with disabilities. As such, DPOs should be able to pro-actively engage with the focal points or with the coordination mechanism outside the realm of advisory boards or councils which may have been created by the State. They can act through the independent mechanisms which should include them in the framework in line with the Paris Principles. At the same time, they may also choose to act outside of this framework, depending on their relationship and possible agreements with the latter. One concrete example in which all forms of civil society involvement can be brought together is the State reporting process. This was already discussed in relation to independent mechanisms. The State has the obligation, following 33 (3) CRPD, to involve civil society in this exercise, which can be done through the advisory boards or councils it may have established within the working sphere of the focal points or the coordination mechanism but certainly also with the independent mechanisms. Independent of the initiative taken by the State authorities, both the independent mechanisms as well as DPOs individually may follow their own agenda and objectives. Most likely the independent mechanisms will draft parallel reports, as suggested earlier. They will submit these reports to the UN Committee on the Rights of Persons with Disabilities which might use them as an important source of information. The independent mechanism will therefore pursue its own coordination. This does not

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exclude the autonomous contribution of each DPO which may also submit ‘shadow reports’ according to its own mandate and objectives, although a coordinated approach resulting in only one such report might have more chances to attract the attention of the Committee. This brings us to the composition of the independent mechanisms and the relationship between the latter and its constituents, in particular the DPOs. Preliminary, the State has the obligation to include DPOs in the establishment or designation of independent mechanisms. While this concerns all questions related to the functioning of these mechanisms, it is of particular importance to its composition that civil society organisation which are most concerned with issues related to persons with disabilities is represented. As mentioned in the previous section, the establishment or designation of the independent mechanisms will have to be preceded by a bottleneck process, consulting representative organisations at large but ending up with only a selection of DPOs being formally part of the independent mechanism. Once the independent mechanisms are established or designated, they will need to set up working methods and networks to reach out to the larger community of DPOs and include them in their activities. Preferably the independent mechanism will adopt a flexible approach which may be determined according to the task at hand. Those DPOs which have been selected to be a part of the independent mechanism will of course engage in a more intense multi-level involvement. They will at times be restrained in their individual actions because they have a representative role exceeding their own constituency or because they are expressing a ‘brokered position’. But they may equally build upon this, go their own way where no consensus was found within the independent mechanism or seek alliances outside the formally established networks. To conclude, considering that multi-level engagement will prove to be complex and given the sometimes fragile state, in terms of resources, of smaller DPOs’ capacity building will become a major challenge. It should not only be important as a commitment from State actors but also, and even more so, from the disability rights movement. Guidance and support on a peer-level will be required.90

90 In this sense the International Disability Alliance has issued a Guidance Document in May 2010 on the CRPD reporting process name ‘Effective Use of International Human Rights Monitoring Mechanisms to Protect the Rights of Persons with Disabilities’. It contains recommendations for DPOs on how to participate, build national coalitions and



national structures for implementation and monitoring63 Conclusion

The national structures for the implementation and monitoring of the CRPD are doubtlessly the precursors of a successful realisation of the Convention. The different structures, each with their own distinctive characteristics as described above, will serve as the vessel allowing for the promotion and protection of the rights guaranteed by the Convention. The integration of such an elaborated implementation and monitoring system is unique in international human rights law. Therefore, it may likely be repeated in possible future international human rights treaties or serve as inspiration for the national stuctures for the implementation and monitoring of existing treaties. The way in which the national structures for the implementation and monitoring of the CRPD have been established will now be examined in the case studies. This will show how States have made their choices in setting up the different bodies. It will also examine the responsibilities, composition and working methods of the national structures and identify which problems exist in the light of Article 33 CRPD. In the meanwhile, to conclude this theoretical part and to facilitate the reading of the case studies, it is useful to recapitulate some of the key features which can be deduced from the analysis of Article 33 CRPD. First, Article 33 (1) CRPD provides for a treaty bound designation of a focal point by the State authorities. The central purpose of this new concept is to ensure a legitimate place for disability rights on the political agenda as well as to install an administrative tool aimed at rationalising and centralising all possible governmental institutions involved in the implementation of the CRPD. There is, however, no unique model dictating their set-up and the Convention allows for a transposition taking into account the characteristics of each political system. One of the key characteristics lies in the composition of the focal points and the coordination mechanism. Given the transversal nature of disability rights policies, a State may opt to designate several focal points to cover some or each of the different governmental layers (national, regional, provincial, draft parallel reports to inform and influence the UN Committee on the Rights of Persons with Disabilities. It can be found at http://www.internationaldisabilityalliance.org. Likewise, Spain has organised together with the UN Department of Economic and Social Affairs a seminar in 2007 which led to the Madrid Declaration. This declaration formulates recommendations to Member States of the UN and to civil society aimed at ensuring the participation of civil society in the implementation and follow-up of the CRPD. It can be found at: http://www.un.org/disabilities/documents/reports/egm/decmadrid.doc.

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local). A State may also need to liaise with existing advisory boards or councils without necessarily integrating them formally within the focal point structure. Such a multi-institutional model requires either  a lead focal point or a coordination mechanism to keep an oversight and ensure a coherent functioning of the different focal points. It should be highlighted that the latter is not required by the Convention but can prove useful minimum minimorum as a neutral platform to unite the  various policy-making factions. When looking at the key characteristics of their mandate, the focal points and coordination mechanism will largely cover three main areas of activity: policy development, promotion of dialogue in the disability field and awareness raising of disability rights. A key challenge is, however, the manner in which these mandates will articulate with the role and place of various governmental players within or outside the focal point. A fundamental guiding principle in implementing Article 33 (1) CRPD will therefore be to ensure a clear distinction of roles, resources and decision-making mandates within the myriad of governmental actors in the disability field. Part of that challenge is to clarify which actor sets the national disability agenda and is in charge of its execution. This will equally be crucial from the perspective of the interaction between the focal points and coordination mechanisms, on the one hand, and the independent mechanisms, on the other hand. Secondly, Article 33 (2) CRPD requires that the rights and principles of the Convention are subject to oversight by national bodies that are independent and pluralistic. This is why it requires that States establish or designate one or more independent mechanisms to promote, protect and monitor the implementation of the Convention. According to the Paris Principles, these mechanisms should be free from governmental interference and be representative of civil society. While these Principles were originally however drafted for NHRIs, they have to be adapted according the nature of the independent mechanisms. States have a certain degree of flexibility in establishing or designating the independent mechanisms, provided all of them are independent and pluralistic, since the promotion, protection and monitoring of the implementation of the Convention must be carried out by bodies that comply with Paris Principles. This does however not mean that bodies other than the independent mechanisms may do this and even, to the contrary, as governments are obligated to promote the Convention according to Article 8 CRPD. Moreover, a key characteristic of Article 33 (2) CRPD is that formally there should be a framework including one or more independent mechanisms. There is however no standard model for the framework of independent mechanisms. While



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States may chose between various options and even combine them in different ways, what is important is that all the functions of independent mechanisms are covered by this framework. This is why combinations have maybe the greatest chance to meet the requirements set by Article 33 (2) CRPD. Designating a representative body in addition to other bodies may also guarantee the full participation of civil society organisations in the framework. Given that the Paris Principles are the guidelines of NHRIs, there are nonetheless strong arguments in favour of attributing the role of independent mechanism to an existing NHRI, provided that its mandate does not distort its capacity and is hence accompanied with additional resources and staff. This means that if there is an NHRI, it should ideally at least be one of the independent mechanisms and have a leading role in the framework. In the event where the current mandate of the NHRI may not suffice, the designation of other bodies might prove useful, as this will ensure that all the functions of independent mechanisms are covered. Besides coordination, a reasonable division of labour and partnerships will have to be established with other entities. If there is no NHRI, Article 33 (2) CRPD provides the occasion to consider the creation of such an institution. Thirdly, Article 33 (3) CRPD provides that civil society should be involved and participate in the monitoring process of the Convention. Primary focus here lies with the role of DPOs both vis-à-vis the governmental structures and as part of the independent mechanisms. There will be a need for them to organise themselves in order to be able to deal with multi-level engagement and maximalise their changes to be heard taking into account their role with the national structures for the implementation and monitoring of the Convention. They will have to articulate their interaction with the different bodies, including advisory boards or councils where they exist, according to their disability rights agenda and their capacity to engage and make partnerships with them. Given the controversy at times over the degree in which DPOs represent the interests of— all or certain categories of—persons with disabilities and given the evolving nature of the disability concept, however, it may be advisable to adopt a flexible and open-ended approach to interaction with civil society members. Key characteristics of that interaction which deserve particular attention throughout the entire process of CRPD implementation are the degree in which DPOs and other entities possess equal opportunity and capacity to participate in the deliberation of disability rights policies. Sufficiently adapted measures, resources and decision-making processes should therefore be devised. Given the multitude of non-governmental

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actors involved in the disability rights field, a key challenge both for the focal points and coordination mechanism as well as the independent mechanisms will be to identify and reach out to these actors, channel their input and—in the case of the independent mechanism—attempt to speak with one voice. Such is the significance of the slogan ‘Nothing about us without us’ which continues to govern the process of CRPD implementation.

PART TWO

CASE STUDIES

CHAPTER TWO

IMPLEMENTATION OF ARTICLE 33 CRPD IN DENMARK: THE SAILS ARE UP, BUT WHERE IS THE WIND? Maria Ventegodt Liisberg Introduction The aim of the present Chapter is to assess the implementation of Article 33 CRPD in Denmark and to examine whether its implementation has led to an acceleration of compliance with the CRPD in Denmark. The Chapter is organised chronologically into three Sections starting with the period before and during negotiation of the CRPD until 2006 in Section I, the period until Danish ratification in 2009 in Section II, and the period after Danish ratification of the CRPD in Section III. Under each Section the main national stuctures for the implementation and monitoring of the Convention are described and the main developments in Danish disability policy and law are analysed. In relation to the assessment of the effect of the CRPD on Danish disability law and policy, the areas of anti-discrimination and legal capacity law and policy will be examined in order to assess the degree to which the conceptual shifts contained in the CRPD are reflected in national law. As explained in the theoretical part of the book, the CRPD is founded on the conceptual shifts from medical model to social model of disability and from little to strong recognition of personal autonomy of persons with disabilities. I. Before and during the Negotiation of the CRPD The present Sub-section first gives a presentation of the authorities, institutions and organisations who were mainly responsible for monitoring and promoting the human rights of persons with disabilities in Denmark before and during the period of negotiation of the CRPD. An attempt is then made at assessing the main developments in Danish disability policy in this period. The negotiation of the CRPD took place over eight sessions of the Ad Hoc Committee on a Comprehensive and Integral

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Convention for the Promotion and Protection of the Rights and Dignity of Persons with Disabilities from July 2002 to August 2006. Before 2002, the Ministry of Social Affairs led the coordination of the official disability policy of the Danish government in conjunction with the Intra-Ministerial Committee of Civil Servants on Disability Matters.1 This Committee has existed for a number of years and meets at the initiative of the co-ordinating Ministry. The members of the Committee are officials from all the Ministries of the government. In 2001, a right-wing government took office and the Minister for Economy and Business who was also Vice-Prime Minister was given the role of coordinator of Danish disability policy on the central government level. Disabled People’s Organisation Denmark (DPOD) and other relevant institutions such as the Danish Institute for Human Rights are rarely invited to attend or make presentations at meetings of the Committee. In 2002, the two main institutions promoting the equal treatment of persons with disabilities were the Centre for Equal Treatment of Persons with Disabilities and the Danish Disability Council for which the former is also the secretariat. The Centre for Equal Treatment of Persons with Disabilities was established in 1993 by a Parliamentary Decision following the adoption of the UN Standard Rules on Equality of Opportunities for Persons with Disabilities.2 The Centre was a self-owning institution under the Danish Disability Council appointed by the Ministry of Social Affairs. In 2003, the Centre had a budget of approximately 1 million Euros and a staff of 17 full-time and part-time staff. The activities of the Centre for Equal Treatment included surveys on equal treatment of persons, publication of a journal and other information activities.3 The Danish Disability Council was established in 1980 and in 2002, the Council had a Chairperson and 14 members appointed by the Ministry of Social Affairs. Of these 14 members, seven were recommended by different Ministries, regional and local authorities and seven were recommended by DPOD.4 The task of

1 The Danish name of the Intra-Ministerial Committee of Civil Servants on Disability Matters is ‘Embedsmandsudvalget vedrørende handicapspørgsmål’. The Ministry of Social Affairs has from 2002 to 2011 had four names: Ministry for Social Affairs (2002–2007), Welfare Ministry (2007–2009), Ministry for Interior and Social Affairs (2009–2010) and Ministry for Social Affairs and Integration. For simplicity’s sake, it is referred to as the Ministry of Social Affairs throughout the Chapter. 2 B43 af 2. april 1993 Folketingsbeslutning om Ligebehandling af Handicappede og IkkeHandicappede Borgere. 3 CLH, Statusberetning 2003. http://www.clh.dk/index.php?id=923&0=. 4 Bekendtgørelse om et Central Handicapråd, Bkg 839 af 11 october 2002.



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the Danish Disability Council was to advise the government and Parliament on how to improve the situation of persons with disabilities. Due to the fact that half of the members of the Danish Disability Council were representatives of different Ministries there was a limit to the degree of independence and critical capabilities of the Council. However, the Danish Disability Council did provide a formalised setting for a regular dialogue between representatives of the government and disability organisations. Today, the Council has been reformed and its composition and role today are described in detail below.5 In 2006, a major decentralising reform of local and regional government took place which reduced the number of municipalities significantly and moved a number of administrative areas from the regional to the local level. With this reform, all municipalities were required to establish a local disability council to ensure dialogue between local authorities and disability organisations.6 One of the main achievements of the local disability councils has been the adoption of disability policies at local level. In 2010, 86 out of 99 municipalities in Denmark had adopted a disability policy.7 In 2012, the National Board of Health and Welfare has produced guidelines on how to prepare a local disability policy based on the CRPD.8 In sum, the active involvement of disability organisations has been structurally ensured at central level since 1980 and at local level since 2006. The Danish Parliamentary Ombudsman was established in 1955 with a mandate in the Danish Constitution from 1953. In 1993, the Ombudsman was also given a special mandate to promote equal treatment of persons with disabilities with the Parliamentary Decision establishing the Centre for Equal Treatment of Persons with Disabilities.9 The main task of the Parliamentary Ombudsman is to treat complaints about decisions made by administrative authorities. The Ombudsman does not make legally binding decisions, but may state criticism and recommend that authorities change their decisions. Every year the Ombudsman treats 5 See below under Section II. Danish Disability Council. 6 lov om ændring af lov om retssikkerhed og administration på det sociale område og andre love § 37a stk. 2, stk. 3 og stk. 4. 7 Socialstyrelsen, Fra konvention til kommunal handicappolitik, 2012, p. 4. 8 Ibid. 9 Act on Danish Parlimentary Ombudsman, 473 af 12.juni 1996. In the autumn of 2007 the Danish government appointed the Parliamentary Ombudsman the Danish NPM. When authorising the appropriation for the Parliamentary Ombudsman to undertake the task, the Folketing presupposed that the Rehabilitation and Research Centre for Torture Victims (RCT) and the Danish Institute for Human Rights have the ability to provide the NPM with specialist medical and human rights experts.

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approximately 4000 individual complaints. No information is provided on the number of cases, which relate specifically to disability. The Ombudsman may also take up individual cases of his own accord and make a survey of administrative practice in relation to specific issues. The Ombudsman carries out inspections to places where persons with disabilities are at risk of violations of their human rights, including psychiatric hospitals and homes for persons with disabilities. In addition, the Ombudsman assesses the physical accessibility to the buildings of public authorities. The Ombudsman publishes an annual report on his work on equal treatment of persons with disabilities.10 In total, around 90 persons work with the Danish Parliamentary Ombudsman. The Ombudsman does not have a mandate to assess the actions of Parliament or courts. His mandate is limited to the monitoring of the executive power. In 2009, the Ombudsman received a mandate to prevent torture during incarcerations and in 2012, he received a mandate to monitor the rights of children. Both of these new mandates are discussed in relation to his mandate under Article 33 CRPD below.11 The Danish Institute for Human Rights was established by a Parliamentary Decision in 1987 and was given a mandate in a legal act in 2002.12 A new legal Act on the mandate of the Danish Institute for Human Rights was adopted on 29 May 2012.13 The Institute has an Advisory Council with representatives of civil society, research institutions, political parties as well as persons and institutions working on human rights in Denmark. The leadership of the Institute is undertaken by the Director and a board with 13 members whereof 6 are appointed by the Advisory Council of the Institute, 6 are appointed by the Universities and one is appointed by the staff of the Institute. As will be explained below under Section III.B.1 Danish Institute for Human Rights, the Advisory Council is today obligated to appoint a person designated by DPOD to the Board under the new Act adopted in 2012.14 Since 2001, the Danish Institute for Human Rights has been accredited with A-Status by the International Coordinating Committee of National Institutions for the Promotion and Protection of

10 http://www.ombudsmanden.dk/om/ombudsmandens_arbejde_/inspektioner/ handicap. 11 See below under Section III.B. Framework and Independent Mechanism. 12 Parliamentary Act of 5 May 1987. Act on the Establishment of the Danish Centre for International Studies and Human Rights, Act no. 411 of 6. juni 2002. 13 Act on the Danish Institute for Human Rights, Act no. 553 of 18 June 2012. 14 Ibid, Section 3(4).



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Human Rights.15 In 2003, the Danish Institute for Human Rights was given  its first mandate to promote the equal treatment of a specific group, namely ethnic minorities. This led to an increase of the budget of the Institute on the Financial Act to approximately 1.5 million Euros (11.5 million DKK). In addition the Institute administered project funds  amounting to approximately 8 million Euros from the Danish Aid  Agency and other donors.16 Before 2006, the Danish Institute for Human Rights did have a few activities relating to the human rights of persons with disabilities. First, the Danish Institute for Human Rights took part in the Ad Hoc Committee’s work on the drafting of the CRPD. Secondly, the Institute undertook research on the rights of persons with dementia in 2001 and thirdly, from 2003 to 2005, the Danish Institute for Human Rights performed a study of the human rights of persons with disabilities in Denmark in a process, which involved stake-holder meetings in the areas of accessibility, anti-discrimination protection, housing and employment.17 DPOD is an umbrella organisation established in 1934. Since 2004, it has had 32 member organisations with 320.000 individual members, which amounts to an impressive 6% of the total population of Denmark. In 2002, approximately 30 full- and part time employees work in the Secretariat of DPOD which is funded in part by public funds. DPOD is a relatively strong non-governmental organisation with good access to both Parliament and government and, as exemplified with the local and the Danish Disability Councils, the dialogue between disability organisations and authorities is ensured through formal structures. DPOD is also represented in for example Regional Employment Councils as well as some administrative complaints boards such as the Administrative Complaints Board on Special Assistance in Education.18 Finally, DPOD also took active part in the drafting of the CRPD and was a part of the official Danish delegation to the Ad Hoc Committee meetings in New York where the drafting of the CRPD took place. As will be explained below, the active participation 15 Chart of the Status of National Human Rights Institutions, http://www.ohchr.org/ Documents/Countries/NHRI/Chart_Status_NIs.pdf. 16 Annual Report of the Danish Institute for Human Rights for 2003, http:// menneskeret.dk/viden/publikationer/%C3%A5rsberetninger. 17 Eva Ersbøll: Dementes Rettigheder, Det Danske Center for Menneskerettigheder, 2001. Report on the Human Rights of Persons with Disabilities, Udredning nr. 3, Danske Institut for Menneskerettigheder, 2005, http://menneskeret.dk/viden/udredninger. 18 Bekendtgørelse om Forretningsorden for Klagenævnet for Vidtgående Special­ undervisning, BEK nr 446 af 19/05/2006.

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of DPOD in the drafting of the CRPD as well as the adoption of the Framework Equality Directive in 2000 initiated a development within DPOP towards a more positive stance on the use of individual rights to promote equal opportunities for persons with disabilities in Denmark. In sum, before and during the negotiation of the CRPD, the main actors in the field of disability policy were the Ministry of Social Affairs, the Centre for Equal Treatment of Persons with Disabilities, the Central and local Disability Councils, the Parliamentary Ombudsman and DPOD. The Danish Institute for Human Rights played a relatively drawn-back role due at least in part to lack of funding for work in this area of human rights. The dialogue between disability organisations and public authorities was ensured, but due to the relatively drawn-back role of the Danish Institute for Human Rights in this field, no truly independent and critical institution had taken the role of monitoring and promoting human rights of persons with disabilities in Denmark before and during the negotiation of the CRPD. During the period of negotiation of the CRPD, several interesting developments took place in Danish disability law and policy. In 2003, the first official Danish Disability Action Plan was formulated in a 25-page document by the Ministry of Industry and Economy.19 The Action Plan was not founded on a Commission Report nor did it spring from any thorough analysis of what is required in order to achieve equal opportunities for persons with disabilities. According to the Action Plan, the aim of Danish disability policy was to achieve ‘equal treatment—that all persons shall have possibilities for participating in social life irrespective of disability’.20 However, according to the Action Plan, the main instruments for achieving equality were firstly, ‘compensation—that society helps persons with disabilities and offers benefits and assistive services to minimise the consequences of disability’ and secondly, ‘sectoral responsibility’ or mainstreaming which means that ‘all sectors must be involved in disability policy. Therefore the sector or authority which normally deals with an area also has 19 Regeringen: Handlingsplan for handicapområdet, 2003. 20 Regeringen: Handlingsplan for handicapområdet, 2003, p. 5. See also a specific Disability in Employment Action Plan, Beskæftigelsesministeriet, Handicap og Job— En beskæftigelsesstrategi for personer med handicap, 2004. Beskæftigelsesministeriet, Initiativer, 2006 (January and October). Beskæftigelsesministeriet, Initiativer, 2007. The proposed measures are either new compensation measures such as more personal assistance or new trials of new methods to assist persons with disabilities in finding employment. Anti-discrimination is only mentioned in passing. Employers are only targeted with soft-law measures information campaigns and a voluntary accessibility grading system.



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the responsibility to take account of the situation of persons with disabilities’. Although the Action Plan does acknowledge that general accessibility and mainstreaming are a prerequisite for equality, the strong focus on compensation as a founding principle indicates that the Danish official Disability Policy as it was formulated in 2003 was not fully based on a social model of disability. The principle of compensation as it was formulated in the Danish Action Plan primarily aims at correcting the individual’s impairment rather than removing social barriers. In line herewith, the Danish Action Plan did not contain any text on the need for a ban against discrimination on the grounds of disability. In December 2004, another landmark in Danish disability policy took place in the form of the introduction of the first protection against discrimination on the grounds of disability under Danish law.21 This legal act was the national implementation of the EU Directive 2000/78 Establishing a General Framework for Equal Treatment in Employment and Occupation. The introduction of a ban against discrimination on the grounds of disability was not driven by a home-grown movement for stronger protection against discrimination. Danish social partners agreed that the Danish Parliament should adopt as little regulation as possible of the Danish labour market and employer’s organisations had therefore not lobbied for a ban against discrimination on the grounds of disability. More surprisingly perhaps, the Danish disability movement did not at this time agree on a rights-based approach to equal treatment of persons with disabilities. Some members of the disability organisations were strongly in favour of anti-discrimination legislation while others preferred the traditional Danish approach of relying on individual compensation and consensus rather than individual rights. Only in April 2006, did DPOD formulate a policy paper stating that a general ban against discrimination on the grounds of disabilities was needed in Denmark.22 Presumably, the active participation of the leadership of DPOD in the negotiations of the CRPD was a strong driver for this policy change in DPOD. The most recent reform of legal capacity and guardianship legislation entered into effect on 1 January 1997.23 The aim of the reform was to ensure that restrictions in legal capacity were only be made after a concrete assessment and that the type of restriction imposed on a person’s legal capacity 21 Lov om ændring af lov om forbud mod forskelsbehandling på arbejdsmarkedet, lov nr. 1417 af 22 december 2004. 22 Correspondence between DPOD and DIHR. 23 Værgemålsloven, lov nr. 388 af 14. juni 1995. LSF191 af 1995.

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should be proportional. Three types of guardianship were contained in the new Act: Economic and personal guardianship with limitations in legal capacity (substituted decision-making), Economic and personal guardianship without limitations in legal capacity, but where the guardian had the possibility to make decisions on behalf of the person under guardianship without his or her involvement (substituted decision-making) and finally, joint-guardianship where legal capacity is not limited and decisions cannot be taken by the guardian without his or her involvement (supported decision-making). The starting-point under the legislation remained substituted decision-making and the legislation did not contain requirements that the personal autonomy of persons under guard­ianship be promoted over time or requirements that limitations in legal capacity be re-assessed regularly. Finally, persons under economic and personal guardianship with limitations in legal capacity lose the right to vote.24 In conclusion, the national structures in place to promote equal treatment of persons with disabilities were relatively strong in Denmark before and during the negotiation of the CRPD in that both the Centre for Equal Treatment of Persons with Disabilities and the Parliamentary Ombudsman had mandates to promote the equal treatment of persons with disabilities. However, neither the Danish Disability Council nor the Parliamentary Ombudsman were sufficiently independent or oriented towards human rights to undertake a critical monitoring and promotion of human rights of persons with disabilities. The Danish Institute for Human Rights did have independence, but it was relatively inactive in this area of human rights during this time in part due to a lack of resources. In contrast, the disability organisations were relatively strong. Morover, formal structures like the Danish Disability Council at national level and the local disability councils were set up to ensure a close dialogue at all levels of government. However, as explained above, the interest of DPOD towards individual human rights was only budding at this time. In sum, no institution or organisations were at this time performing structured and powerful work to promote and monitor the human rights of persons with disabilities in Denmark. During the negotiation of the CRPD, a prohibition against discrimination on the grounds of disability in the field of employment was adopted in Denmark in order to implement the EU Framework Equality Directive rather than being a reflection of fundamental change in the perception of human rights of persons with disabilities in Denmark. 24 Folketingsvalgloven og andre valglove § 1. Grundlovens § 29.



denmark: the sails are up, but where is the wind77 II. Signature and Ratification of the CRPD

On 30 March 2007, the UN Convention on Rights of Persons with Disabilities was opened for signature and the Danish Minister for Economy and Business signed the convention on that very day in New York. Almost two years later, on 24 July 2009, Denmark ratified the convention. In 2007, the Danish government established an Adhoc Working Group of Ministerial Officials to examine whether Danish law was in compliance with the CRPD in order to prepare for the ratification of the CRPD. A representative of DPOD was also invited to take part in the meetings of the Working Group, but neither the Danish Institute for Human Rights, the Danish Disability Council nor the Parliamentary Ombudsman who since then became part of the framework under Article 33(2) were invited to take part in this assessment of Danish law. The assessment made by the officials remained relatively general and the overall conclusion (which the representative of DPOD disagreed with) was that Danish law was in full compliance with the CRPD. The Working Group only identified one legal act which needed to be amended in order to ensure full compliance: The Act on Election to the Parliament and other election laws allowing persons with disabilities to receive assistance in voting had to be changed to allow persons with disabilities to chose for themselves whom would assist them in voting in accordance with Article 29(a)(iii) CRPD.25 The Working Group did not find that it was necessary to introduce a prohibition against discrimination on the grounds of disability outside of the labour market in order to ensure compliance with Article 5 CRPD. The Working Group also did not find that Danish legal capacity legislation gave rise to any concerns. On 22 April 2009, the Minister for Social Affairs presented a Proposal for a Parliamentary Decision to ratify the CRPD.26 This proposal did not include a proposal to ratify the Optional Protocol to the CRPD as the Government found that ‘[obligations under the] Convention are […] not suitable to be determined through individual cases.’ 27

25 Lov nr. 1347 af 19/12 2008 om lov om ændring af lov om valg til Folketinget, lov om valg af danske medlemmer til Europa-Parlamentet og lov om kommunale og regionale valg vedrørende hjælp til stemmeafgivningen efterleves denne bestemmelse i Danmark. 26 B194 Forslag til Folketingsbeslutning vedrørende Danmarks Ratifikation af FN’s Handicapkonvention af 13. december 2006 om Rettigheder for Personer med Handicap. 27 Reply by Minister for Social Affairs, Karen Ellemann to Question no. 2040 by Lise von Seelen, 29 April 2009, Tale no. 124.

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Before the presentation of the Proposal for a Parliamentary Decision to Parliament, DPOD, the Danish Disability Council and the Danish Institute for Human Rights criticised that the government had not considered that it was necessary to adopt a prohibition against discrimination outside the labour market and that the proposal did not include the ratification of the Optional Protocol. It was also critisised that the Government had not conducted a more thorough examination of compliance of Danish law and policy with the CRPD. In relation to Article 33, the Proposal for a Parliamentary Decision to ratify the CRPD, stated the following: The Ministry for the Interior and Social Affairs will as the co-ordinating Ministry function as focal point in conjunction with all the Ministries and other relevant institutions which are affected by the CRPD. In addition, the Intra-Ministerial Committee of Civil Servants on Disability Questions will be involved. In addition, the Ministry for the Interior and Social Affairs will initiate a study in cooperation with the Ministry of Finance to determine how the existing structures in the field may be developed to conduct monitoring of the implementation of the Convention. Finally, the Government will continue the cooperation with the organisations who represent persons with disabilities.

As explained in the theoretical part of the book, Article 33(1) CRPD provides for both a focal point which must be appointed and a coordina­ tion  mechanism within government which may be appointed. In the Parliamentary Decision on the ratification of the CRPD cited above, only the role of focal point is mentioned. According to the Parliamentary Decision, the Ministry for Social Affairs, which has traditionally had the coordinating role within the Danish government in relation to disability policy, was given the role as focal point ‘in conjunction with all other Ministries concerned’. In addition, the Intra-Ministerial Committee of Civil Servants on Disability Questions would be involved. This wording makes it relatively unclear exactly how the role of the Ministry for Social Affairs was to be different from that of other Ministries and the Committee. The exact role of the different Ministries and the Intra-Ministerial Committee is discussed in more detail below.28 The question of the implementation of Article 33(2) CRPD on a framework to promote, protect and monitor the implementation was not resolved in the Proposal for a Parliamentary Decision on ratification of the CRPD.

28 See below under Section III. A. Focal Point and Co-ordination Mechanism.



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In sum, the process from signature to ratification was relatively short and the amendments to Danish disability law and policy made in preparation of ratification were correspondingly modest. Prior to ratification, no thorough analysis of Danish law in relation to the CRPD was performed or even found necessary. By the time of ratification, no framework had been appointed to promote, protect and monitor the CRPD in Denmark. III. After Entry into Force of CRPD in Denmark In accordance with Article 45(2), the CRPD entered into force for Denmark on the 23th of August 2009. The present Section examines the implementation of the CRPD and efficiency of the different structures set up under Article 33 CRPD. This Section falls into four sub-sections: the first three sub-sections reflect the structure of Article 33 with Sub-section A dealing with the focal point and coordination mechanism for matters relating to the implementation of the CRPD, Sub-section B dealing with the framework including one or more independent mechanisms to promote, protect and monitor the implementation of the CRPD and finally, Subsection C dealing with the involvement and participation of civil society in the implementation and monitoring process. Sub-section D deals with Danish disability law and policy after the entry into force of the CRPD. A. Focal Point and Co-ordination Mechanism (Article 33(1) CRPD) As explained in the theoretical part of the book, Article 33(1) CRPD provides for both a focal point, which must be appointed, and a coordination mechanism within government, which may be appointed. As explained above under Section II, the Parliamentary Decision on the ratification of the CRPD by Denmark only mentions the focal point and not the coordination mechanism. According to the Parliamentary Decision, the Ministry for Social Affairs was given the role as focal point ‘in conjunction with all other Ministries concerned’. In addition, the Intra-Ministerial Committee of Civil Servants on Disability Questions would be involved. In the initial report of Denmark submitted to the UN Disability Committee two years after ratification in August 2011, the following was stated in relation to Article 33(1): The Ministry of Social Affairs was appointed as the national nexus for matters related to implementing the Convention. […] As the coordinating ministry for disability matters, the Ministry exercises its function as the national

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maria ventegodt liisberg nexus in close contact and coordination with the other parts of the government and organisations in the disability area. […] The terms of reference for the Intra-ministerial Committee of Civil Servants on Disability Matters were revised and now provide that the committee is tasked with the central administration’s coordinating function to facilitate Intra-Ministerial activities in different sectors and at different levels aimed at implementing the UN Convention on the Rights of Persons with Disabilities; see Article 33(1) of the Convention. […]’ 29

Thus, the initial report clarifies that the Ministry of Social Affairs is focal point and that the Intra-ministerial Committee of Civil Servants on Disability Matters chaired by the Ministry of Social Affairs acts as coordinating mechanism under Article 33(1) CRPD. The main activities of the Ministry of Social Affairs and the IntraMinisterial Committee of Civil Servants on Disability Matters acting under Article 33(1) CRPD have been the writing of Denmark’s initial report to the CRPD Committee and initiating work on a national Disability Action Plan.30 The work on the Disability Action Plan is led by the Ministry of Social Affairs and will involve the Intra-Ministerial Committee. The Action Plan is expected to be presented in the fall of 2013. The Ministry of Social Affairs has announced that it expects to hold three to four meetings with civil society and the framework under Article 33(2) CRPD during the process of preparation of the Disability Action Plan. In other words, disability organisations and the framework appointed under Article 33(2) CRPD are not expected to be strongly involved in the work on the Disability Action Plan. The work on the initial report to the CRPD Committee was co-ordinated by the Ministry of Social Affairs and the Ministry of Foreign Affairs.31 Again, civil society and the institutions in the Article 33(2) CRPD framework were not involved directly in the preparation of the initial report with the exception of the participation in one open meeting organised by the Ministry of Social Affairs. Presumably, the reason for this lack of involvement was that the general procedure for preparing initial reports was followed and that civil society and the Danish Institute for Human Rights are not ordinarily involved in this process. The Danish Disability 29 Ibid., p. 45. 30 http://www.sm.dk/Nyheder/Sider/Vis%20Nyhed.aspx?NewsItem=645, see also the announcement of the government which entered into office in 2011, http://www.stm.dk/ publikationer/Et_Danmark_der_staar_sammen_11/Regeringsgrundlag_okt_2011.pdf. 31 Link to Danish report to UN Disability Committee: http://www.ohchr.org/EN/ HRBodies/CRPD/Pages/futuresessions.aspx.



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Council and the Danish Institute for Human Rights have since criticised the initial report for being a list of initiatives and measures for the promotion of equal treatment of persons with disabilities rather than being a base-line study of the human rights situation of persons with disabilities in Denmark. More than three years after ratification of the CRPD, in august 2012, no major developments have taken place in Denmark as regards disability law and policy. For example, persons with disabilities still do not enjoy protection against discrimination on the grounds of disability outside of the labour market. However, the government which entered into office in late 2011 announced that the protection against discrimination will be strengthened, but no details on what this would entail have been disclosed. In relation to legal capacity, no specific steps have been taken by the government to ensure that Danish law and policy in this area reflect the shift in the CRPD towards a stronger recognition of individual autonomy. The Danish Institute for Human Rights has in February 2012 pointed out that a reform of legal capacity law and policy is necessary in order to implement the conceptual shift towards more personal autonomy contained in the CRPD.32 It is yet to be seen whether this will lead to changes in law and policy. However, the Danish government wrote in the initial report to the CRPD Committee and the government programme of 2011 that future disability policy will focus more on the creation of an accessible society than on individual compensation.33 Depending on how this intention is implemented, this would reflect an important shift towards a Danish disability policy based more on the social model of disability. In sum, the Ministry of Social Affairs, which has continuously co-ordinated disability policy at government level interrupted only for a few years in the beginning of the 2000s, was appointed focal point and the IntraMinisterial Committee of Civil Servants on Disability Matters, which is led by the Ministry of Social Affairs, co-ordinating mechanism under the CRPD. A comprehensive action plan on disability, stronger protection against discrimination and ratification of the Optional Protocol have been announced since the entry into force of the CRPD in Denmark but still have to be adopted. 32 The report of the Danish Institute for Human Rights entitled ‘Self-determination and Guardianship’ (Selvbestemmelse og Værgemål) contains an English summary. It may be accessed electronically: http://menneskeret.dk/files/pdf/Publikationer/Vaergemaal _faerdigTilgaeng.pdf. 33 Ibid.

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maria ventegodt liisberg B. Framework and Independent Mechanism (Article 33(2) CRPD)

The present Section examines the mandate and functioning of the framework under Article 33(2) CRPD to promote, protect and monitor the implementation of the CRPD after the entry into force of the CRPD in Denmark in August 2009. This Section is divided into three sub-sections: a) Danish Institute for Human Rights; b) Danish Disability Council and; c) Parliamentary Ombudsman. The Danish Institute for Human Rights is designated independent mechanism and, together, the three institutions form the framework under Article 33(2) CRPD. 1. Danish Institute for Human Rights Following an examination of the different options for a framework under Article 33(2) CRPD by a consultancy company for the Ministry of Social Affairs and discussions in the Intra-Ministerial Committee on Civil Servants on Disability Matters, the Ministry for Social Affairs formulated a Proposal for a Parliamentary Decision on ‘the promotion, protection and monitoring of the implementation of the UN Disability Convention on the Rights of Persons with Disabilities’, which was adopted on 17 December 2010.34 The Parliamentary Decision appoints the Danish Institute for Human Rights with the task to ‘promote, protect and monitor the implementation of the CRPD’. The concept of ‘independent mechanism’ is not mentioned specifically in the Parliamentary Decision. However, it is clear from the wording of the Parliamentary Decision that the Danish Institute for Human Rights has the leading role and is the independent mechanism. In the explanatory notes to the Parliamentary Decision, it is furthermore provided that the Danish Institute for Human Rights, the Danish Disability Council and the Parliamentary Ombudsman constitute the framework to promote, protect and monitor the CRPD. The tasks to promote, protect and monitor the implementation of the CRPD under Article 33(2) CRPD fall within the mandate of the Danish Institute for Human Rights as provided by the legal act establishing the Institute and are qualified by the Parliamentary Decision. As explained above under Section I, the Danish Institute for Human Rights is a national human rights institution and has been accredited with A-Status under the Paris Principles since 2001. The Institute has been provided with

34 The author of this article has not been given access to the consultancy report on different options for a framework under Article 33(2).



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approximately­4.6 million DKK or approximately 620.000 Euros annually to carry out the task under Article 33(2) CRPD. The Parliamentary Decision explains the tasks of the Institute as including the following: promotion in the form of information and education about human rights, protection in the form of general advice to persons who feel that they have been victims of discrimination and monitoring in the form of examinations of legal practice in different areas of law and policy. In relation to the protection of human rights, it is underlined that ‘a new complaint-handling and advisory function is not established under the Institute’. This sentence makes reference to the fact that the Danish Institute for Human Rights is the designated body for the promotion of equal treatment and effective protection against discrimination on the grounds of racial or ethnic origin as well as gender.35 The Danish Institute for Human Rights does not handle complaints in relation to discrimination on the grounds of gender or ethnicity, but provides support to individuals who complain that they have been victims of discrimination. The question of access to protection against violations of the CRPD is examined in more detail below.36 In relation to promotion, the main on-going activities of the Danish Institute for Human Rights are counselling and advising Parliament and Government on the implementation of the CRPD by commenting on new legislative proposals, which are relevant to the human rights situation of persons with disabilities in Denmark. For example, the Danish Institute for Human Rights has made written comments to proposals for new legislation and had meetings in 2011 and 2012 with the Ministry for Children and Education regarding inclusive education and with the Ministry of Health regarding sterilisation. Another important on-going activity is parttaking in the public debate and providing information on human rights of persons with disabilities in the media. Moreover, the Danish Institute for Human Rights has on 28 February 2012 launched a website on the CRPD and the main challenges for Denmark.37 The website contains 35 These mandates follow from Article 13 of the EC Council Directive 2000/43/EC on Equal Treatment Irrespective of Race and Ethnic Origin, Article 20 of the EC Council Directive 2006/54/EC on the Implementation of the Principe of Equal Treatment of Men and Women in Matters of Employment and Occupation (recast) and Article 12 of the EC Council Directive 2000/113/EC on Implementing Principle of Equal Treatment Between Men and Women in the Access of Supply and Goods and Services. 36 See below under Sub-section c) Parliamentary Ombudsman. 37 The website may be viewed at www.handicapkonvention.dk. Unfortunately, neither website nor newsletter are translated into English.

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explanations of the main obligations under each right as well as a short description of the main challenges for Denmark in fulfilling these obligations. For each Article of the CRPD, a Danish disability organisation has been asked to submit a short text with the main problems facing their members in relation to the enjoyment of this right and they have also been invited to provide a 2-minute video on this topic. In addition, experts in the field covered by the right in question have also been asked to provide a text on how they perceive the main challenges for Denmark. Disability accessibility to the website has been a priority although it has proven quite challenging to ensure. All the videos have been given sub-titles and are interpreted for the blind. In addition, the text relating to a number of, but not all, Articles have been sign-language interpreted. An easy-read section provides information with pictures and easy-read text to persons with intellectual disabilities.38 An electronic newsletter on developments relating to Danish implementation of the CRPD and interpretation of the CRPD was launched in June 2012 and may also be viewed on the website. In relation to protection of the rights of persons with disabilities, the theoretical part of this book explains that they consist in ensuring that violations of human rights of persons with disabilities are stopped and remedied, and that in practice, protection of rights takes the form of complaints handling. The Danish Institute for Human Rights does not treat individual complaints. In addition, as explained above, the Danish Institute for Human Rights does not have the same strong mandate to provide assistance in cases relating to the human rights of persons with disabilities as it does in relation to protection against discrimination on the grounds of gender and race where the Institute has been appointed equality body’. This means that the Danish Institute for Human Rights only provides general advice to persons who complain to the Institute that their human rights have been violated due to disability. In contrast, in cases concerning discrimination on the grounds of gender or race, the Institute will be more likely to provide concrete guidance as to the formulation of a complaint to the Equal Treatment Board and may also provide assistance in applying for public support to have a case tried before the Courts. Although the Danish Institute for Human Rights only provides very general support relating to individual complaints of violations of human  rights, the Institute will hold dialogue meetings with the Danish Court Administration, Board of Equal Treatment, the Impartial 38 Easy-read section of the website: http://www.menneskeret.dk/handicapkonvention/ konventionen+i+letl%c3%a6st+og+andre+formater/mine+rettigheder.



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Consultative Service for People with Disabilities (DUKH), local legal aid institutions and other relevant institutions in relation to the protection of the human rights of persons with disabilities. The question of access to protection against violations of CRPD is examined in more detail below.39 In relation to the mandate to monitor the implementation of the human rights of persons with disabilities, the theoretical part of this book explains that it consists in assessing the human rights situation of persons with disabilities with the purpose of alerting States of potential human rights violations. The Danish Institute for Human Rights has made a legal study of inclusion of children with disabilities in Denmark with recommendations that the right to inclusive education be strengthened. The Institute is also taking part in a Nordic project on employment of young persons which examines policies and laws aiming at promoting inclusion on the labour market. In addition, the Institute has also made a legal/anthropological study of legal capacity and guardianship in Denmark which was published in February 2012. Through legal analysis of obligations under human rights law, Danish law and policy and interviews with persons under guardianship, their family-members and guardians, the main challenges under Danish law were identified. The main recommendations include a limitation in the use of substituted decision-making and more use of supported decision-making. In addition, the study shows that the human rights of persons under full guardianship are violated in that they lose the right to vote. The Danish government is taking these problems seriously and has been willing to enter into an open dialogue with the Institute on these questions. It is as yet not known whether the recommendations of the Institute will lead to changes in Danish law and policy relating to legal capacity and guardianship and the right to vote. Although it is not an explicit part of the mandate of the Institute under Article 33(2) CRPD to mainstream disability human rights into all the activities of the Institute, the Institute should naturally be a frontrunner in this field. The mainstreaming of disability into all the activities of the Institute has therefore been a priority since the Institute received the mandate to promote, protect and monitor the implementation of the CRPD in December 2010. This is a long-term project, but some initiatives have been taken. For example, a new accessibility policy for the Institute has been adopted which means that for example all invitations that are 39 See below under Sub-section c) Parliamentary Ombudsman.

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sent out must be in an accessible format. Areas where disability could be more mainstreamed include, for example, the Institute’s develop­ment projects in Asia, Eastern Europe and Africa. Also, the Institute has business-oriented activities, which could also more specifically target human rights of employees and customers with disabilities. The cooperation between the members of the framework under Article 33(2) and the involvement of disability organisations are discussed below. In relation to the Ministry of Social Affairs, a written memorandum of understanding on the cooperation between the Ministry and the Institute has been agreed. The memorandum sets in place two annual meetings and ensures an on-going exchange of information and opinions. 2. Danish Disability Council As explained above, Parliamentary Decision B 15 of 17 December 2010 provides in its explanatory notes that ‘[t]he Danish Institute for Human Rights, the Danish Disability Council and the Parliamentary Ombudsman together constitute the framework for promotion, protection and monitoring of the CRPD in accordance with the obligations under Article 33(2)’. The Parliamentary Decision also closes down the Centre for Equal Treatment of Persons with Disabilities and, consequently, approximately half of the staff of the Centre were transferred to the Danish Institute for Human Rights. The remaining staff makes up the new secretariat of the Danish Disability Council. Moreover, the membership of the Danish Disability Council was enlarged to 17 including the Chairperson and amended. The members of new Danish Disability Council are still appointed by the Ministry of Social Affairs, but representatives of Ministries are no longer members of the Council. The fact that representatives of Ministries are no longer members of the Council renders the Council more independent of the Governments in its daily work which brings the Danish Disability Council more in line with the requirement of independence under the Paris Principles. DPOD recommends the names of five members, the remaining 11 members are appointed after recommendation from the social partners, Local Government Denmark, Regional Government Denmark as well as research institutes and universities. The Danish Institute for Human Rights and the Ministry of Social Affairs both have observatory status at the meetings of the Danish Disability Council.40 According to the regulation of 22 December 2010, the 40 Bekendtgørelse om retssikkerhed og administration på det sociale område, bek nr. 1635 af 22 december 2010, kapitel 11.



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role of the Council is still to give advice in ‘questions relating to disability’ to ‘Parliament, Ministries and central public authorities’.41 It is new however that the regulation also states that the Disability Council must ‘1) discuss and assess the development in society for persons with disabilities on the grounds of the CRPD, work for general inclusion in society […] and (3) transmit information in order to fight stereotypes, prejudices and harmful practices relating to persons with disabilities’. The Council may not treat individual complaints, but ‘may take up general issues and may ask public authorities to provide information relating to political decisions and administrative practice’.42 According to the Action Plan of the Danish Disability Council for 2011–12, the Council will take part actively in the public debate in Denmark and take a stand in relation to new initiatives, public debates, etc. which concern the possibility for person with disability to take part in social life on an equal basis with others. In addition, the Council has identified three specific projects for 2011–12. The first project is in conjunction with the organisation ‘School and Parents’ to promote a debate on inclusive attitudes in public schools. The second project targets the manner in which persons with disabilities are represented in the media. The third project aims at improving the participation of persons with disabilities on the labour market. The Danish Disability Council uses the CRPD as the basis for its work in the sense that it refers to the CRPD when arguing its positions. However, the focus of the work of the Danish Disability Council is not on analysing the duties of Denmark under the CRPD. Rather the focus of the Disability Council is on seeking to achieve change in Danish law and policy through participation in the media and direct political contacts. 3. Parliamentary Ombudsman The Parliamentary Ombudsman has undergone no structural changes in relation to his appointment as part of the Framework under Article 33(2) CRPD. The main tasks of the Parliamentary Ombudsman are to treat complaints about decisions made by administrative authorities, as described above under Section I. In view of the fact that the Parliamentary Ombudsman is the only member of the framework under Article 33(2) CRPD who treats individual complaints, he has a special role in relation to the mandate to provide protection against violations of human rights 41 Ibid, Section 53. 42 Ibid. Section 55.

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under the CRPD. However, the Parliamentary Ombudsman only treats complaints over decisions by the executive branch of the State at central and local levels. He may not treat complaints over discrimination committed by private parties. In 2009, the Ombudsman was appointed as national preventive mechanism under the Optional Protocol to the UN Convention Against Torture and Other Cruel, Inhumane or Degrading Treatment or Punishment (OPCAT).43 In order to carry out this new function relating to prevention of torture, the Parliamentary Ombudsman carries out inspections of all places where persons are detained, including psychiatric hospitals and other places where inter alia persons with disabilities would be at special risk of being subjected to torture or degrading treatment. The Ombudsman already carried out inspections to group homes and institutions under his disability mandate dating back to 1993.44 To date, the inspections carried out by the Parliamentary Ombudsman to group homes of persons with disabilities under his original disability mandate and the inspections carried out under OPCAT mandate have not been strongly co-ordinated. However, a new Ombudsman was appointed on 1 February 2012 and he has announced that the different types of inspections will in the future be carried out by the same department and presumably this will lead to the development of similar methods and standards for the visits. The inspections under OPCAT mandate are carried out in dialogue with the Danish Rehabilitation Centre for Torture Victims as well as the Danish Institute for Human Rights. The Parliamentary Ombudsman took up the question of his new mandate relating to Article 33(2) in his Annual Report on Disability-Related Activities for 2010.45 The Ombudsman explains that the Ombudsman and the Danish Disability Council ‘are mentioned as cooperation partners for the Danish Institute for Human Rights’ which has been appointed to monitor the implementation of the CRPD.46 In addition, the Annual Report on Disability-Related Activities for 2011, 2010 and 2009 contain references to a handful of individual cases which gave rise to an assessment of whether or not the CRPD had been respected by administrative authorities. In a 43 Lov nr. 502 af 12. juni 2009, som ændrer Lov om Folketingets Ombudsmand. 44 See above under Section I on the original disability mandate of the Parliamentary Ombudsman. 45 Folketingets Ombudsmands Arbejde med Ligebehandling af Personer med Handicap, http://www.ombudsmanden.dk/om/formidling_og_viden/publikationer/ligebehandling _af_handicappede/redegoerelse_2010_ligebehandling_af_mennesker_med_handicap. 46 Ibid, p. 4.



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decision from September 2009, the Ombudsman discussed the extent of the right to education under Article 24 in a case concerning an autistic boy who had been placed in a school for disabled children against the will of his parents.47 The Ombudsman found that the right to inclusive education under Article 24 CRPD was merely a right to be included in the educational system of the State and not a right to be placed in an ordinary school. The Ombudsman and the Danish Institute for Human Rights have since then discussed this interpretation of Article 24 of the CRPD. However, no new cases on this question have been decided by the Ombudsman to reflect whether he has since changed his interpretation of Article 24 CRPD. Moreover, the Annual Reports of the Parliamentary Ombudsman of 2010 and 2011 contain statements by all Ministries on their activities in relation to the implementation of the CRPD. The collection of statements is in practice carried out in the Intra-Ministerial Committee of Civil Servants on Disability Matters which is led by the Ministry of Social Affairs. Neither the Parliamentary Ombudsman or the other members of the framework under Article 33(2) CRPD have to date used this overview of the activities of the different Ministries in their work to promote, protect and monitor the implementation of the CRPD, but the Danish Institute for Human Rights has in the fall of 2012 asked to meet with the IntraMinisterial Committee of Civil Servants on Disability Matters to discuss the statements of the different ministries. Finally, one may speculate why the Equal Treatment Board which treats complaints over discrimination on the grounds of disability was not likewise made part of the framework under Article 33(2) to promote, protect and monitor the implementation of the CRPD in Denmark. The Board replaced the Gender Equality Board in 2009 and considers individual complaints over discrimination on the grounds of gender, race, skin colour, religion or belief, political opinion, sexual orientation, age and national, social or ethnic origin as well as disability.48 As regards disability, religion or belief, political opinion, sexual orientation, age, the Equal Treatment Board only treats complaints over discrimination in the labour market. The Equal Treatment Board is presided over by three judges and 47 ‘Henvisning af autistisk barn til specialskole frem for enkeltintegrering i friskole’, Ombudsmandens afgørelse af 24. september 2009, j.nr. 2009–1787–710. 48 Act no. 387 of 27 May 2008 on the Equal Treatment Board, which entered into force on 1 January 2009 (Lov om ligebehandlingsnævnet). Link to Equal Treatment Board: http:// www.ligebehandlingsnaevnet.dk.

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there are nine ordinary members of the Board who are appointed by the Ministry of Employment. Ordinarily, one judge and two ordinary members decide each case. The decisions of the Board are legally binding, but the Board cannot hear witnesses. During 2009, the Board made 64 decisions in total and two decisions regarding disability, and during 2010, the Board made 7 decisions regarding disability.49 The Board does not have a mandate to make general surveys of issues relating to equal treatment. It is possible that the fact that the mandate of the Board is limited to treatment of individual cases similarly to a court is the reason why the Board was not included in the framework under Article 33(2). As a consequence no administrative body treats complaints over violations of the human rights of persons with disabilities or discrimination on the grounds of disability outside of the labour market. 4. Coordination within the Framework under Article 33(2) CRPD As explained above, although the three institutions may work with related topics such as the inclusion of persons with disabilities in the field of education, the manner in which they undertake this work is mostly complimentary. The Danish Institute for Human Rights works with a stronger focus on the interpretation of the CRPD in all its work. Moreover, the Institute seeks to undertake both promotional and monitoring tasks and, to a lesser extent for the time being at least, protective tasks. The Disability Council focuses on promotional activities and does not have many resources to undertake bigger monitoring tasks. The Parliamentary Ombudsman has a stronger focus on individual decisions although he may also make surveys of administrative practice and inspections. In order to promote synergy between the activities of the three institutions Article 33(2), bi-annual meetings have been set up where all three 49 Decision of Equal Treatment Board, Case 35/2009 of 23 September 2009 regarding a police officer who could no longer take part in trips to abroad due to a reduced working capacity and who could therefore no longer receive a pay supplement linked to participation in trips. The Board did not consider this to be in violation of the ban against indirect discrimination because the differential treatment was found to be justified. In Case 64/2009 of 16 December 2009 a man with a ‘permanent psychological fragility’ had been turned down for a position which required experience with administrative work. Since the plaintiff did not have such experience, the Equal Treatment Board found that he had not been subjected to direct or indirect discrimination due to disability. The Board did not take a stand on whether or not ‘permanent psychological fragility’ qualified as disability. Ligebehandlingsnævnets Årsberetning 2009, p. 3.



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institutions meet at the same time to discuss on-going projects and plans for future activities. In addition the Danish Institute for Human Rights has observatory status in the Danish Disability Council. The Danish Disability Council and Ombudsman are not to date members of the Advisory Council of the Danish Institute for Human Rights, but the Danish Disability Council is currently considering to apply for membership. In conclusion, the independent mechanism and framework required under Article 33(2) CRPD to promote, protect and monitor are in place in Denmark. In relation to the Paris Principles mentioned in Article 33(2) CRPD, it is positive that the framework lives up to the requirements of independence and pluralism as the Danish Institute for Human Rights is fully independent and as the Danish Disability Council ensures pluralism in the framework. Moreover, the framework has the capacity to both promote and monitor the implementation of the CRPD in Denmark. However, it is a serious shortcoming that individual complaints about violations of rights under the CRPD may only be treated to a limited extent by the Ombudsman who may not treat complaints over actions committed by private parties. Moreover, it is clear that the mandate is relatively new and that the co-operation between the three institutions as well as the mainstreaming of the mandate under Article 33(2) within the institutions may be strengthened. However, it is positive that although the three institutions may work with related topics, the manner in which they undertake this work is mostly complimentary, as already said. C. Civil Society (Article 33(3) CRPD) It follows from Article 4(3) CRPD that States Parties shall consult closely with and actively involve persons with disabilities in the implementation of the CRPD and from Article 33(3) CRPD that persons with disabilities and their organisations shall be involved and participate fully in the monitoring of the implementation of the Convention in each Member State. As explained in Section I, persons with disabilities in Denmark have a strong tradition of joining disability organisations. Around 6% of the population of Denmark are members of the around 30 organisations which in turn are organised in DPOD. At least 50 other disability or diagnosis-based organisations exist in Denmark without being members of DPOD. DPOD has organisations with members who have physical, mental, intellectual and sensory impairments. The organisations outside of DPOD may not consider themselves to be a disability organisation or may not want to be

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a part of the umbrella organisation for example due to the work that this entails. Finally, a few smaller organisations may not be members because bigger organisations representing persons with the same impairments are already members of DPOD. It is important for both government and institutions in the framework under Article 33(2) CRPD to remember that DPOD is not representative of all disability organisations in Denmark. Other relevant organisations must also be involved in both the implementation of the CRPD by the State and in promotion and monitoring by the framework under Article 33(2). Also as explained in Section I, formal structures are in place to ensure the involvement of disability organisations in the execution of laws and policies in Denmark with local disability councils in all municipalities and the Danish Disability Council being the most clear manifestation hereof. However, many other examples exits such as DPOD membership of regional employment councils, the employment board and the board on special education. In relation to Article 33, the Danish Disability Council has a special status since it forms a bridge between disability organisations mentioned in Article 33(3), the framework under Article 33(2) and the governmental focal point under Article 33(1) CRPD. This is so since five out of 16 members of the Council represent disability organisations, since the Council is a part of the Article 33(2) framework to promote, protect and monitor the implement the CRPD and since the Council is appointed by the Ministry of Social Affairs which is the Danish focal point under Article 33(1). The other members of the Disability Council are recommended by the social partners, from the organisations of municipalities and regions, from universities and research institutions and are personally appointed by the Minister of Social Affairs. Thus, the Council does not convey the view points of disability organisations alone, but of a number of civil society organisations and public institutions. However, the Council allows for an on-going dialogue between different interests in society and the government which is helpful in developing policies and laws with broad support in society. In relation to the Danish Institute for Human Rights, DPOD is represented in the Advisory Council and a representative of DPOD shall according to the new Act on the Institute for Human Rights from 2012 be among the persons appointed by the Advisory Council of the Institute to the Board of the Institute. From the perspective that the Institute has a



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specific mandate under Article 33(2) CRPD, it is positive that DPOD is now guaranteed a seat on the board of the Institute. The Institute also has an Equal Treatment Committee where all the members of the Advisory Council of the Institute that work for equal treatment irrespective of disability, gender, sexual orientation, age and ethnicity and race are represented. The Committee meets twice a year and the members of the Committee and the Danish Institute for Human Rights host an annual conference on equal treatment together. In the carrying-out of its mandate under Article 33(2) CRPD, the Danish Institute for Human Rights has from the outset placed great importance on the involvement of disability organisations. The Institute has formulated a written strategy for inclusion of persons with disabilities in its work. In addition to two annual meetings between DPOD and the Danish Institute for Human Rights, the dialogue with DPOD takes place on a dayto-day basis and bigger strategic decisions such as annual action plans are discussed with DPOD. Moreover, reference groups of relevant organisations are invited to guide and follow the work of the Institute in relation to all bigger projects or surveys. During 2011, the Institute organised round-table meetings with all disability organisations in Denmark. More than 100 small and big organisations were invited and around 40 organisations came for 5 different meetings where the organisations had the opportunity to inform the Institute about the biggest challenges facing the members of these organisations and how the Institute could be of assistance to them in their work. Many organisations requested guidance in how to use the CRPD in their dialogue with local municipalities relating to individual cases. Consequently, the Institute will hold seminars for the organisations regarding this question. The Parliamentary Ombudsman also mentions meetings with DPOD in his annual report for 2010. Thus, the Ombudsman has held at least one annual meeting with DPOD to discuss the implementation of his original disability mandate dating from 1993 and his new mandate under CRPD article 33(2). In sum, persons with disabilities are extremely well organised in Denmark. Moreover, inclusion and dialogue between authorities and disability organisations is ensured through formal structures such as the local disability councils and the Danish Disability Council. Also in relation to the mandate to promote, protect and monitor, disability organisations are strongly involved.

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The present Chapter shows how the national structures required under Article 33 CRPD are in place in Denmark. A focal point and coordination mechanism have been appointed. An independent mechanism and framework for promotion, protection and monitoring have been appointed. Moreover structures are also in place to ensure the involvement of disability organisations in the implementation of the CRPD. The only structural lacuna consists in the lack of a body with a mandate to provide effective protection against violations of the CRPD in general and discrimination on the grounds of disability outside the labour market. As regards the Article 33(2) CRPD mandate to promote, protect and monitor, it is positive that an independent mechanism in the form of a national human rights institution has been appointed. As explained above, the Institute has shortcomings in relation to complaints-handling. This is made up for in part by the mandate of the Parliamentary Ombudsman who is also part of the framework under Article 33(2) although it is a problem that he can only treat complaints over violations over decisions by the executive branch of the State. The membership of the Danish Disability Council in the framework heightens the involvement of disability organisations in the work of the framework. The involvement of disability organisations is also ensured through representation of DPOD in the Board of the Danish Institute for Human Rights and through close working relations between the Institute and disability organisations. However, more work needs to be undertaken in order to ensure the mainstreaming of disability human rights in all the work of the especially the Parliamentary Ombudsman and the Danish Institute for Human Rights. In relation to the involvement of disability organisations, it is positive that formal structures have been set in place to ensure dialogue between government and disability organisations. Thus, Danish disabled persons are members of disability organisations in high numbers and disability councils with strong representation of disability organisations are set up by law both at national and municipal levels. In practice however, the focal point and coordination mechanism could do more to involve disability organisations in their work, for example in relation to the upcoming important work on a national disability action plan. However, in spite of the structures under Article 33 CRPD being practically complete, the rate of implementation of the CRPD in Denmark has not been impressive. Thus, more than six years after the adoption of the



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CRPD by the General Assembly and more than three years after it entered into force in Denmark, neither a thorough base-line study of the human rights situation of persons with disabilities nor a national disability action plan exist. Moreover, in key areas of the CRPD concerning protection against discrimination, legal capacity and political participation, Denmark has yet to take decisive action to rectify existing laws and policies which violate the CRPD. In conclusion, the sails are up. All that is needed to ensure a full and quick implementation of the CRPD in Denmark is political will to fill up the sails.

CHAPTER THREE

IMPLEMENTATION OF ARTICLE 33 CRPD IN THE UNITED KINGDOM: THE NEED TO CONSOLIDATE CIVIL SOCIETY ENGAGEMENT Rachel Murray and Kelley Johnson1 Introduction Whilst the United Kingdom (UK) has designated its Article 33(1) government and 33(2) statutory bodies, the mechanisms by which DPOs and disabled people are involved in these is less clear. The situation is further challenged with devolution in the UK, with several executive, parliamentary and human rights commissions operating separately and in collaboration with each other depending on the legislative framework applicable in that particular jurisdiction. This chapter will examine the choice of bodies designated under Article 33 in the UK, looking at the focal point, national framework, and then the role of civil society. It will argue that further thought needs to be given to coordination between them and consolidation of the mechanisms by which civil society organisations and in particular DPOs can engage with government and the human rights commissions. I. The Ratification Process The UK signed the CRPD on 30 March 2007, the Convention came into force in May 2008, and the UK ratified on 8 June 2009. The government selected the Office for Disability Issues (ODI) as the focal point and the four equality and human rights commissions as the independent mechanism under Article 33 CRPD. There was a considerable amount of discussion at the national level prior to and immediately post ratification on the reservations and declarations the government wished to submit under the CRPD2 and limited 1 Thanks in particular must go to Emily Kakoullis for her assistance in background research for this paper. 2 See ‘Commission Statement re: the Government’s Explanatory Memorandum’, http://www.equalityhumanrights.com/human-rights/international-framework/human

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reference on how Article 33 would work in practice. In fact, at a meet­ ing  held in February 2009, it was apparent that the implementation of Article  33 had not yet been fully considered by many of the players, in particular civil society organisations.3 Indeed, because of the relatively innovative aspect of Article 33 as a clause in international treaties, it is probably fair to say that at that stage relatively little was known about how this would work in practice. The only precedent for this was the national preventive mechanism under the Optional Protocol to the UN Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT). OPCAT requires states to designate or establish independent national bodies to carry out visits to places of detention in order to prevent torture or other abuse, and undertake a broad preventive mandate. Work evaluating how these national bodies were able to operate under an international treaty was in its early stages and very few were cross-referencing the findings from this, in a torture field, to that in the disability field. Lessons learnt from OPCAT, such as the likely need for greater funding in order for the work to be done, and the impact that such designation would have on the institution, were therefore not fully considered. Furthermore, as only one of the bodies in the UK, namely the Scottish Human Rights Commission, would be designated both as the national preventive mechanism under OPCAT and as part of the framework under Article 33 (2) CRPD, the opportunities for cross-over and linkage were limited. In the UK, therefore, Article 33 was a new idea for many of those who would be engaged with it, whether that was the NHRIs, government departments or civil society. II. Article 33 CRPD The designation of the focal point in Article 33(1) and the national framework in Article 33(2) was undertaken by the government laying an explanatory memorandum before parliament in March 2009.4 There was no other legislative process to designate these bodies. -rights-submissions/rights-of-disabled-people/governments-explanatory-memorandum -and-commission-response/commission-statement-re-the-governments-explanatory -memorandum. 3 Monitoring and Implementing the UN Convention on the Rights of Persons with Disabilities in the UK: Role of the Government, Statutory and Civil Society Organisations. Roundtable at the University of Bristol, 9 February 2009. 4 Explanatory Memorandum on the United Nations Convention on the Rights of Persons with Disabilities, Command Paper CM 7564, March 2009, paras 18–20.



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Devolution, with the establishment of separate administrations and parliaments in Scotland, Northern Ireland and Wales, in 1998, raises some challenges with respect to implementation and monitoring of the Convention. The responsibilities devolved to the Scottish, Welsh and Northern Ireland administrations and legislatures are a complex matter and vary from jurisdiction to jurisdiction. A. Article 33(1) CRPD The Office for Disability Issues (ODI) was designated as the focal point and the coordinating mechanism for the UK as set out in Article 33(1) of the CRPD.5 The ODI sits within the Department for Work and Pensions (DWP) and its aim is to coordinate policy on disability across government departments. There is a specific Minister dedicated to disability issues: the Minister for Disabled People. It was recognised at the outset that arrangements would need to be made with the various devolved administrations and there are now additional focal points in the devolved administrations in Scotland, Northern Ireland and Wales: in Scotland, this is the Equality Unit in the Scottish government, in Northern Ireland, this is the Office of the First and Deputy First Minister (OFMDFM) and in Wales, the Equality, Diversity and Inclusion Division.6 As the Parliamentary Joint Committee for Human Rights (JCHR) stated in 2009, the focal point ‘requires a strong presence with clear influence across government’.7 Although many consider the ODI to be best placed to coordinate the work on ratification of the CRPD,8 its role with respect to implementation of the Convention has raised a number of challenges. Because of its position within the larger government DWP, some have concerns that the ODI lacks the necessary

5 ODI, Draft UK initial Report on the UN Convention on the Rights of Persons with Disabilities, http://odi.dwp.gov.uk/docs/disabled-people-and-legislation/uk-initial-report, p. 103. 6 Equality and Human Rights Commission Guidance. The Convention on rights of persons with disabilities. What does it mean to you? (2010) www.equalityhumanrights .com. 7 JCHR, UN Convention on the Rights of Persons with Disabilities: Government response to the Committee’s First Report of the Session 2008–09, Sixth Report of Session 2008–09, HL Paper 46, HC 315, 6 March 2009, para 101. 8 Human Rights Council Resolution 10/7: Human Rights of Persons With Disabilities: National Frameworks for the Promotion and Protection on Persons with Disabilities, EHRC September 2009, para 4.

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autonomy9 as well as the resources and clout to fulfil its Article 33(1) role effectively.10 Article 33(1) provides the opportunity for there to be coordination with respect to government. The ODI has undertaken this role formally and has recognised the responsibility of other government departments in implementing the Convention and the need for them ‘to work together to coordinate some policy responses’.11 However, in practice, ‘it is unclear exactly what this role has been’.12 Furthermore, questions then rise as to the extent to which coordination should be ‘light touch’ such as simply sharing information, or more, such as trying to ensure consistency in approach of methodology or standards. The need for strong coordination is also underscored when considering the devolved context, not only between but also within the various devolved administrations. The Scottish Government has said, for example, that individual government departments are responsible for taking forward action to implement the Convention in the areas where they have policy responsibility. Therefore, because many of the areas covered by the articles are devolved to the Scottish government, it is the responsibility of the Scottish Government to ensure effective implementation of these articles in Scotland, and also to feed into the UK report.13

There are challenges in defining exactly what is required of government and its focal point under Article 33(1). In this regard the ODI has said that it will promote implementation of the Convention among different 9 Equality and Human Rights Commission Submission to the Joint Committee on Human Rights concerning ‘Rights of People with Disabilities: Minister to Explain Government’s Commitment to New Convention, http://www.equalityhumanrights.com/human-rights/ international-framework/human-rights-submissions/rights-of-disabled-people/ submission-to-the-joint-committee-on-human-rights, paras 2 and 4.2. 10 ‘The Office of Disability Issues…has yet to define its true role and character and to establish the leverage it needs to deliver’, N. Crowther, ‘Nothing without us or nothing about us?’ (2007) 22 (7) Disability and Society 791–794, 791. This would appear to be an issue not just for the UK however but for other states, see L.F.A. Gatjens, ‘Analysis of Article 33 of the UN Convention: The Critical Importance of national Implementation and Monitoring’ (2011) 8 (14) International Journal on Human Rights 71–82, 76. 11 Implementation of the UN Convention, http://odi.dwp.gov.uk/disabled-people-and -legislation/un-convention-on-the-rights-of-disabled-people/implementation-of-the-un -convention.php. 12 JCHR, UN Convention on the Rights of Persons with Disabilities: Government response to the Committee’s First Report of the Session 2008–09, Sixth Report of Session 2008–09, op. cit., para 39. 13 SHRC, EHRC, ODI, Scottish Government, The UN Convention on the Rights of Persons with Disabilities in Scotland, Report of the joint information and consultation event in Glasgow, 22 January 2010, 22.



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government departments and outside government to others, including disabled people and there may need to be guidance provided in this regard. This may not be anything different: ‘to some extent it is about making policy makers think more about the impact policies have on real people and their lives. This is not something that is completely new’.14 It would appear that a considerable amount of the ODI’s work on the CRPD is on state reporting as required under Article 35 CRPD.15 The ODI sees that the process of drafting this report is a way of coordinating activities among government departments: ‘engaging departments in the reporting process will itself be a way in which the knowledge and understanding of the Convention amongst policy makers can be raised’.16 For example, it was noted in January 2010 that ‘the ODI has been considering whether any new mechanism is needed to help formalise the process by which disabled people are consulted on the reporting process. It has been suggested, for example, that there could be a ‘forum of disabled peoples’ organisations to advise on the convention’.17 The ODI and Scottish Executive have established working groups of disabled peoples’ organisations around the state reporting process.18 The ODI has spent some considerable time on this task, and although there is evidence of the ODI undertaking awareness raising activities,19 interestingly, a lot of what the government sees as monitoring seems to relate to its reporting obligation under the Convention.20 Thus, many of its activities around the Convention have centred on the process by which this report should be drafted and how to engage civil society organisations. While these initiatives may be laudable, the focus around state reporting is potentially limiting: state reporting is a useful function but on its own is unlikely to have much impact on the ground. This should not be the sole focus of a government’s activities with respect to Article 33. It may be that it has been used as a

14 Ibid, 17. 15 ODI, UK Initial Report on the UN Convention on the Rights of Persons with Disabilities, http://odi.dwp.gov.uk/docs/disabled-people-and-legislation/uk-initial-report.pdf. 16 SHRC, EHRC, ODI, Scottish Government, The UN Convention on the Rights of Persons with Disabilities in Scotland, op. cit., 18. 17 Ibid. 18 SHRC, EHRC, Joint Response to OHCHR Study following human Rights Council resolution 16/5 on the Human Rights of Persons With Disabilities by the Scottish Human Rights Commission and the Equality and Human Rights Commission, August 2011, para 4. 19 See UK Initial Report on the UN Convention, op. cit., paras 348–349. 20 The government submitted its report under the Convention to the UN Committee in November 2011. It has yet to be examined by the Committee.

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useful catalyst for activity around the Convention and to spearhead developments on this front. There is some evidence of a broader approach with the public consultation on a new disability strategy, which is intended in part to build upon its report under CRPD.21 It is important however that its Article 33(1) role does not remain confined to this task. The four commissions have requested the government to provide a national action plan for implementation of the Convention.22 Indeed, the Equality and Human Rights Commission (EHRC) has suggested that the ODI should work on producing an action plan for implementation of the Convention, working with government departments and others to do so.23 However, although the ODI have said they are going to do this, there is little appetite amongst government for elaboration of a national human rights strategy.24 B. Article 33(2) CRPD 1. Which Organisations Make up the Framework? There are four statutory bodies in the UK which deal with equality and human rights issues: the EHRC, the Northern Ireland Human Rights Commission (NIHRC), the Equality Commission for Northern Ireland (ECNI), and the Scottish Human Rights Commission (SHRC). The decision to appoint these four commissions as the framework under Article 33(2) was taken with little discussion or consultation with others and it is not clear why civil society was not included. On the one hand, they are the obvious statutory bodies to undertake this role, but further thought could have been given in the process to other potential mechanisms for engagement and involvement of civil society organisations, in particular DPOs, in the formal structure of Article 33(2). The EHRC, established in 2007, had a strong past record in disability issues, it having been formed from three previous equality bodies, one of which was the Disability Rights Commission. This ensured that disability 21 http://odi.dwp.gov.uk/odi-projects/fulfilling-potential.php. 22 EHRC, The Commission’s Work on UNCRPD—Update March 2012. 23 Equality and Human Rights Commission Submission to the Joint Committee on Human Rights concerning ‘Rights of People with Disabilities: Minister to Explain Government’s Commitment to New Convention, http://www.equalityhumanrights.com/human-rights/ international-framework/human-rights-submissions/rights-of-disabled-people/ submission-to-the-joint-committee-on-human-rights, para 4.4. 24 See J. Kissane, ‘Does the United Kingdom need a national human rights action plan?’ (2012) EHRLR 1–7.



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was reflected as a key part of the merged and expanded EHRC and this is recognised with the requirement in the Equality Act that the Commission should have a separate Disability Committee.25 The other commissions were the result of devolution: the Scottish Human Rights Commission was formed in 200826 and the Northern Ireland Human Rights Commission and Equality Commission of Northern Ireland were both established following the Good Friday Agreement, under the Northern Ireland Act 1998. As a result of devolution, the remit of the different commissions is complicated with respect to human rights and equality issues and therefore monitoring of the CRPD. The EHRC’s remit is for Great Britain, not Northern Ireland, where the NIHRC and ECNI jointly undertake this monitoring role. The EHRC has a separate Wales Commissioner and Scotland Commissioner, as well as a separate office in Scotland. It also has a Wales Committee which has decision-making powers. Some of the commissions have additional remits not matched in the other jurisdictions.27 Some matters remain reserved to Westminster and are those as listed in the respective acts,28 and what is reserved differs between Scotland, Wales and Northern Ireland and as a result the legal framework for equality and human rights differs across the different countries in the UK. For example, although the Human Rights Act applies across all of the UK, in Scotland and Northern Ireland any act which is contrary to the ECHR is considered to be ultra vires.29 There are parallel processes taking place for the creation of Bills of Rights in Northern Ireland and in Britain. Furthermore, the legislative framework for equality issues in particular differs if one looks at Northern Ireland, which comes out of the Good Friday Agreement and resulting legislation, when compared with Scotland and England and Wales on the other hand. The Equality Act 2010 incorporates a number of pieces of legislation on discrimination which apply to Great Britain, and introduces a new public sector duty whereby public authorities are required to pay due regard to elimination of discrimination. The Equality Act does not apply to Northern Ireland, although many of the legislative provisions there are similar. Equal opportunities and discrimination are ‘transferred matters’ as per the Northern Ireland Act 1998. 25 There is also the requirement that one Commissioner is (or has been) a disabled person, Equality Act 2006, Schedule 1, part I, s.3(a). 26 Scottish Human Rights Commission for Human Rights Act 2006. 27 For example the Equality Commission in Northern Ireland has a responsibility under s.75 of the Northern Ireland Act as well as under the Disability Discrimination Act. 28 Scotland Act 1998, Government of Wales Act 1998, and Northern Ireland Act 1998. 29 S.6(2)(c), Northern Ireland Act 1998.

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S.75 of the Northern Ireland Act, further provides for a statutory equality duty.30 The Disability Discrimination Act 1995 applies across the UK. This complex arrangement further underscores the need for greater coordination. Collectively the four commissions have carried out a range of disability work, some of which is a direct result of their designation under Article 33(2). These have included holding seminars and conferences,31 producing joint responses to UN studies,32 holding ‘participation days’33 and other awareness raising events34 and online seminars. The two commis­ sions in Northern Ireland have a joint committee for their CRPD work35 and have undertaken evaluation on shortfalls in policies with respect to the Convention.36 The four commissions have ‘discussed shared production and “branding” of promotional materials’.37 Individually, the EHRC spent some time initially focusing on the reservations and interpretative declaration submitted by the UK, producing a public statement.38 It has produced a Guide to the CRPD,39 and has a 30 See proposals from the Equality Commission for Northern Ireland, Disability Equality Law. Proposals for Reform, November 2011. 31 See e.g. UN Convention on the Rights of Persons With Disabilities in Scotland, Report of the Joint Information and Consultation Event in Glasgow, 22 January 2010 http://www .scottishhumanrights.com/application/resources/documents/CRPDPartnershipReport .pdf; SHRC, EHRC, ODI, Scottish Government, Being part of Scotland’s Story under the Disability Convention, the Report of the Joint Commission’s participation event with disabled people in Scotland about the United Nations Convention on the Rights of Persons with Disabilities, April 2011; see also www.scottishhumanrights.com/ourwork/crpd/CRPDback ground. 32 SHRC, EHRC, Joint response to OHCHR study following Human Rights Council resolution 16/5 on the Human Rights of Persons with Disabilities by the Scottish Human Rights Commission & the Equality and Human Rights Commission, August 2011. 33 SHRC, EHRC, Being part of Scotland’s story, op. cit. 34 SHRC, EHRC, ODI, Scottish Government, The UN Convention on the Rights of persons with Disabilities in Scotland, op. cit. 35 EHCR, Human Rights Council Resolution 10/7: Human Rights of Persons with Disabilities: National Frameworks for the Promotion and Protection of Persons with Disabilities, September 2009, para 4. 36 See C. Harper, S. McClenahan, B. Byrne and H. Russell, Disability Programmes and Policies: How does Northern Ireland Measure up? Monitoring Implementation (public policy and programmes) of the United Nations Convention on the Rights of Persons with Disabilities (“UNCRPD”) in Northern Ireland. Research Summary, Equality Commission for Northern Ireland, January 2012. 37 EHCR, Human Rights Council Resolution 10/7: Human Rights of Persons with Disabilities: National Frameworks for the Promotion and Protection of Persons with Disabilities, op. cit., para 4. 38 See EHRC, The Commission’s Work on UNCRPD, update March 2012, 5. 39 EHRC, A Guide to the UN Disability Convention. http://www.equalityhumanrights. com/human-rights/human-rights-practical-guidance/a-guide-to-the-un-disability -convention.



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separate website devoted to the CRPD work which outlines its role, what the Convention means for disabled people and what it covers and who to contact in the Commission.40 The website outlines the work it is doing to ‘promote’ the Convention which includes marking the UN International Day of People with Disabilities, and linking in with the work of its Disability Committee. The EHRC has also said it will work with legal professionals and others to increase awareness of the Convention, organise events and consider use of its inquiry powers.41 With respect to the latter, it has initiated two inquiries, one into disability-related harassment,42 and one on home care and human rights, although the latter was based principally on the European Convention on Human Rights (ECHR).43 With respect to monitoring the Convention, the EHRC has said that it has worked with a number of MPs to submit parliamentary questions on the CRPD.44 It has also made a number of submissions to UN bodies on disability issues45 and national parliamentary bodies46 and submitted responses to government consultations.47 It produces a regular update of its work on the Convention and other relevant information. The SHRC has expressly under its Article 33(2) remit carried out a number of activities.48 These include distribution of electronic newsletters, the provision of evidence to parliamentary inquiries,49 and it has separate sections on its website on promotion, protection and monitoring of the 40 http://www.equalityhumanrights.com/human-rights/international-framework/ un-convention-on-the-rights-of-persons-with-disabilities. 41 http://www.equalityhumanrights.com/human-rights/international-framework/ un-convention-on-the-rights-of-persons-with-disabilities/our-work-to-promote-the -convention. 42 http://www.equalityhumanrights.com/legal-and-policy/inquiries-and-assessments/ inquiry-into-disability-related-harassment. 43 EHRC, Close to Home, November 2011. http://www.equalityhumanrights.com/ uploaded_files/homecareFI/home_care_report.pdf. 44 http://www.equalityhumanrights.com/human-rights/international-framework/un -convention-on-the-rights-of-persons-with-disabilities/monitoring-the-implementation -of-the-convention. 45 E.g. for a range of the Commission’s UN treaty monitoring work see: http://www .equalityhumanrights.com/human-rights/our-human-rights-work/international -framework/monitoring-and-promoting-un-treaties. 46 E.g. to the JCHR inquiry on independent living in March 2012, http://www .equalityhumanrights.com/news/2012/march/response-to-joint-committee-on-human -rights-independent-living-report. 47 E.g. to the UK Border Agency (Home Office) review of the immigration reservation. 48 See a specific webpage on its work on CRPD: http://www.scottishhumanrights.com/ ourwork/crpd. 49 To the UK Joint Committee on Human Rights Inquiry into Independent Living, SHRC, Response to Joint Committee on Human Rights Inquiry on Independent Living The Scottish Human Rights Commission, May 2011.

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Convention. Links are provided to relevant UN, international, government and national bodies’ websites which hold further information on the CRPD. The NIHRC has provided some information on its website on the CRPD, including a short guide and is hosting interactive sessions with ECNI.50 With the ECNI51 they have branded themselves as the ‘Independent Mechanism for Northern Ireland’ and the two commissions have set out a range of activities they will undertake as part of their Article 33(2) role including a range of engagements with the other commissions, events and comments on government compliance as well as working on responses to the state report.52 Indeed, the four commissions are currently collaborating to produce a joint shadow report to the government’s state report that has been submitted to the CRPD Committee and which is due for examination in 2013 or 2014.53 In order to ensure effective implementation and monitoring implementation of the CRPD in the UK, as elsewhere, there needs to be leadership. The human rights and equality commissions are well placed, as independent bodies to undertake this role and those in Scotland and Northern Ireland in particular have shown they are able to do so. It is to be stressed that without this strong steer from independent institutions, the CRPD loses the potential it so clearly has to influence government initiatives that may make a difference for disabled people. One way in which such leadership could be exercised is engagement with DPOs. However, as seen below, this does not appear to have been exploited to its full potential by all the commissions. 2. The Role of the Article 33(2) Framework: Implementation / Monitoring The tasks of the commissions are to ‘promote, protect and monitor implementation’ of the Convention. What exactly this role entails is open to debate. In this regard, one challenge is the division of responsibility between the commissions and government under the Convention.

50 http://www.nihrc.org/index.php?option=com_content&task=view&id =99&Itemid=107. 51 Monitoring Implementation (public policy and programmes) of the United Nations Convention on the Rights of Persons with Disabilities (“UNCRPD”) in Northern Ireland. 52 ‘The Activities and Progress of the Independent mechanism’, http://www.equalityni .org/archive/pdf/UNCRPD_ActivitiesProgress.pdf. 53 See EHRC, The Commission’s Work on UNCRPD Update, March 2012, op. cit.



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With respect to promotion, the commissions have noted that it is promoting implementation which is their responsibility, not promotion per se: it is not the Independent Mechanisms for Northern Ireland’s responsibility to promote the Convention on behalf of the state party, or to publicise the state party’s implementation of the Convention. The Independent Mechanism will provide, collectively or through the work of each Commis­ sion, commentary and advice on draft legislation, policy and practice.54

Promotion of implementation could include: ‘identifying organisations responsible for the implementation; scoping out what change needs to be made or action implemented; working with the organisations and with disabled people to encourage change and implementation and promoting a human rights approach to their work by public bodies’.55 The EHRC for example sees its role here as being strategic, rather than ‘informational’.56 Therefore, it is the commission’s view that it is to assess the state’s actions but not itself ‘decide upon legislation and policies or to engage in other decision-making processes for the state party’s implementation of the Convention’.57 In this regard the commissions have jointly and separately undertaken a range of activities, including holding events and seminars as noted above.58 The EHRC has defined its protective mandate as including: working with government, parliament and others to consider present legislation and identifying what needs to be changed to ensure full protection; ongoing work on removing reservations; using both human rights and equality law and our statutory powers; focusing enforcement activity where a body has powers/duties to achieve broader impact and where action is appropriate; possibly supporting optional protocol complaints; protecting human rights legislation itself.59 54 CRPD Independent Mechanism for Northern Ireland, Roles and Responsibilities within the Framework of Article 33, CRPD4.2a, 2011, 4. 55 SHRC, EHRC, ODI, Scottish Government, The UN Convention on the Rights of Persons with Disabilities in Scotland, op. cit., 29. 56 Equality and Human Rights Commission Submission to the Joint Committee on Human Rights concerning ‘Rights of People with Disabilities: Minister to Explain Government’s Commitment to New Convention’, http://www.equalityhumanrights.com/ human-rights/international-framework/human-rights-submissions/rights-of-disabled -people/submission-to-the-joint-committee-on-human-rights/, para 1.9. 57 CRPD Independent Mechanism for Northern Ireland, Roles and Responsibilities within the Framework of Article 33, CRPD4.2a, 2011, 3. 58 See notes 33 and 34 above. 59 SHRC, EHRC, ODI, Scottish Government, The UN Convention on the Rights of Persons with Disabilities in Scotland, op. cit., 30.

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Here, as noted above, the commissions have lobbied government on the issue of reservations, made submissions to parliament and undertaken a range of inquiries. However, it is perhaps the ‘monitoring’ role and the differentiation of that with the ‘implementation’ (which is the responsibility of the state) that raises the most challenges. The commissions have said that ‘monitoring’ means: working with government and disabled people (the Commissions cannot do this alone); not just monitoring breaches in legislation, but monitoring the steps being taken to achieve progressive relationship of the Convention over time; using equality legislation in particular promoting and enforcing compliance with the public sector duty; developing, promoting and using indicators for the realisation of Convention rights.60

However, in the UK there is evidence that the commissions see the government as attempting to shift some of its responsibility for implementation to the commissions, as reflected in the EHRC’s statement: The government should be able to point to the Commission as evidence of its implementation of the Convention, but doing so requires that Government respects the Commission’s statutory independence and difference between the Commission’s role and responsibilities of its own. Whilst the Commission will from time to time work closely with Government on shared objectives relating to the Convention, clarity must be maintained about those responsibilities which are the Commission’s and those which are Governments.61

Furthermore, the JCHR has stressed that although it may be the role of the framework to monitor, monitoring compatibility cannot be left entirely to the domestic independent mechanism, in this case the UK’s equality and human rights commissions. Government must assume a positive role in its approach to compliance. Article 33 of the UNCRPD, in our view, will not be satisfied by anything less.62

60 Ibid. See also CRPD Independent Mechanism for Northern Ireland, Roles and Responsibilities within the Framework of Article 33, CRPD4.2a, 2011, 4. 61 Equality and Human Rights Commission Submission to the Joint Committee on Human Rights concerning ‘Rights of People with Disabilities: Minister to Explain Government’s Commitment to New Convention, http://www.equalityhumanrights.com/human-rights/ international-framework/human-rights-submissions/rights-of-disabled-people/ submission-to-the-joint-committee-on-human-rights, para 5.4. 62 JCHR, UN Convention on the Rights of Persons with Disabilities: Government response to the Committee’s First Report of the Session 2008–09, Sixth Report of Session 2008–09, op. cit., para 101.



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The government in response stated that ‘it has never been the government’s position that monitoring implementation of the Convention can be ‘left entirely to the domestic independent mechanism’. Clearly there is a distinct obligation on government (and therefore the ODI, other departments and the Devolved Administrations) to promote, protect and monitor implementation of the Convention in so far as it applies to matters that fall within their remit, and the ODI will continue to have a key role to play’.63 Therefore the line between ‘implementation’ and ‘monitoring’ may not be as clear as one may wish and there is a concern that the government is, appropriately, transposing some of its responsibility to implement onto the commissions. What is the responsibility of the commissions and what is the responsibility of government is an on-going challenge, particularly in light of limited resources. 3. Should Other Organisations Be Part of the Framework? Given the lack of consultation on who should be part of the Article 33(2) framework the question has arisen as to whether other organisations should also be formally included. On the one hand, the decision about who should be part of the framework must be made by government, as required under Article 33(1) (‘States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework…’).64 Thus, ‘it is the state’s responsibility to facilitate related action in different sectors and at different levels when implementing the Convention’ and it is up to the state to determine the ‘breadth and inclusivity’ of the Article 33(2) framework itself.65 Having said that, in the event of the government failing to expand the framework formally, there is still a role and a responsibility for the commissions to play, in particular with respect to engaging with DPOs, and indeed, they have themselves recognised this.66 63 Letter from Jonathan Shaw, MP, Minister for Disabled People, JCHR, UN convention on the Rights of Persons with Disabilities: Government response to the Committee’s First Report of the Session 2008–09, Sixth Report of Session 2008–09, op. cit., Appendix. 64 Emphasis added. 65 CRPD Independent Mechanism for Northern Ireland, Roles and Responsibilities within the Framework of Article 33, CRPD4.2a, 2011, 2. 66 ‘The Independent Mechanism for Northern Ireland has responsibilities to engage with disabled people as part of its role’, CRPD Independent Mechanism for Northern Ireland, Roles and Responsibilities within the Framework of Article 33, CRPD4.2a, 2011, 2.

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It is by no means clear in the UK context what formal processes of engagement there are between the four commissions and DPOs. The commissions have clearly individually and jointly engaged with DPOs in a variety of ways, but the establishment of formal working groups and similar structures are less apparent. The extent to which the commissions see themselves as either the framework, or the framework-plus is a contentious issue and may not even find a consistent approach from among the commissions themselves. Arguably, the latter model, where the commissions form the starting point of the Article 33(2) framework but also encompass other civil society, DPOs and statutory bodies, provides a richer basis for national monitoring. As noted above, there has already been collective engagement and coordination among the four commissions, with joint events and submissions. However, the CRPD does not expressly provide for coordination outside of government, for example, between the Article 33(2) framework and civil society organisations, DPOs or indeed with other relevant statutory or constitutional bodies. However, by referring to the Paris Principles, such engagement could be implied.67 This is crucially important not only with respect to DPOs but also with a range of other statutory bodies which have some remit over disabled issues but which are not included within the Article 33(2) framework officially, such as the Care Quality Commission, Independent Police Complaints Commission (IPCC), independent safeguarding authority, and Children’s Commissioner.68 The human rights commissions have engaged with these bodies in a number of ways, but this is not always expressly linked to their Article 33(2) mandate.69

67 The Paris Principles note that within the framework of its operation the NHRI should ‘In view of the fundamental role played by the non-governmental organisations in expanding the work of the national institutions, develop relations with the non-governmental organisations devoted to promoting and protecting human rights, to economic and social development, to combating racism, to protecting particularly vulnerable groups (especially … mentally disabled persons)’, Paris Principles, methods of operation, para 6. 68 EHCR, Human Rights Council Resolution 10/7: Human Rights of Persons with Disabilities: National Frameworks for the Promotion and Protection of Persons with Disabilities, op. cit., para e. 69 For example, in 2011 the EHRC and CQC adopted joint guidance, Equality and Human Rights in the essential standards of quality and safety. An Overview. Guidance for Compliance inspectors and registration assessors, October 2011, http://www.cqc.org.uk/sites/default/ files/media/documents/rp_poc1b2b3b4b_100567_20110914_edhr_overview_guidance_v1 _for_external_publication_201110065709.pdf. It mentions the CRPD, referring to relevant rights.



uk: the need to consolidate civil society engagement111 C. Article 33(3) CRPD

This takes us to the crux of the issue and one of the raisons d’être of the CRPD, namely the involvement of persons with disabilities and disabled people’s organisations (DPOs) in the monitoring of the Convention. Article 33(3) adds to the more general duty on Governments ratifying the Convention described in Article 4(3), with the latter also focusing on implementation: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations.

The importance of respecting the autonomy of disabled people and their rights to be involved in decision making about their lives is a consistent and integral theme in the Convention, based on the principle of ‘nothing about us without us’.70 The Convention therefore seeks to ensure that disabled people and their organisations will be involved in not only monitoring of the Convention but in all aspects of its implementation. 1. The Need for Awareness Raising A prerequisite for involvement is awareness of the CRPD by disabled people and their organisations. In a recent report by the House of Lords and the JCHR investigating progress towards Article 19 CRPD on independent living the Committee concluded that: Our evidence suggests awareness of the Convention among disabled people is low. It is important that disabled people are aware of their rights in order that they can access them. We recommend that the Government work in partnership with DPOs in order to increase awareness.71

Developing awareness takes both time and resources. For some disabled people, particularly some people with intellectual disabilities, abstractions such as ‘rights’ are difficult to understand and there is a need for identifying ways of providing information which go beyond accessible 70 R. Kayess, and P. French, ‘Out of darkness into light? Introducing the Convention on rights of persons with disabilities’ (2008) 8(1) Human Rights Law Review 1–34. 71 House of Lords and House of Commons Joint Committee (2012) Right of disabled people to independent living. HL paper 257. HC paper 1074. HMG. P. 39, para 124.

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written and internet information.72 A failure to obtain a groundswell of awareness of rights by disabled people at a grass roots level, increases the possibility that involvement will only come from organisations which are the ‘usual suspects’. There is a tension between the time, care and resources needed for real engagement with groups with disparate needs and understandings and the need for Government to move quickly and cheaply in relation to implementation and monitoring. Two peak organisations are particularly important in relation to the implementation and monitoring of the Convention. The UK Disabled People’s Council (UK DPC) is the national umbrella organisation of DPOs. It is run and controlled by, and represents the voices of disabled people in the UK. The Council consists of more than 300 DPO members and has a vision for the full inclusion and equality of disabled people both in society and at work. Its objectives are: 1. Representing the views of its member organisations across different disabilities; 2. Securing effective resources including knowledge, finance and expertise to support the attainment of its vision; 3. Strengthening the role of DPOs in the UK to promote the rights of disabled people at a local regional and national level and delivering services which promote independent living; 4. Working with legislators and policy makers to:  – Promote civil rights for disabled people and challenge discriminatory practice.      – Challenge the effectiveness of services used by disabled people to achieve independent living.      – Ensure that they are involving disabled people and children in decision making processes and that their voice is heard.73 Established in 1981 the Council has been involved in both capacity building in relation to DPOs, it created and funded the National Centre for Independent Living and has campaigned for the rights of disabled people both in the UK and internationally. The Council has been involved as chair of the working group established by Government to consult with DPOs in

72 K. Johnson, P. O’Brien and C. Hamilton, ‘In conversation with Bill Roberts, Paul Alford and Marie Wolfe’ (2009) 37 (4) British Journal of Learning Disabilities 242–244. 73 http://www.ukdpc.net/site.



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relation to informing the UK Government activity on the Convention and the UK report to the UN which was submitted in 2011. The second important disability umbrella organisation is Disability Lib, a capacity building umbrella organisation for DPOs which has 300 member organisations. With the UK DPC and Scope, (which provides advocacy, services and campaigns for the rights of disabled people),74 it has sponsored Disability Rights Watch to provide a means for disabled people to provide information and stories which will inform a shadow report on the implementation of the Convention. It provides a very accessible website for disabled people to provide information. It is however not clear how many people have used the website to provide information and the shadow report is not currently available. Information on the division of tasks between UK DPC and Disability Lib is not easily found. The strength of umbrella organisations of DPOs rests on the strength of their membership and there is a multiplicity of DPOs in the UK. Some are small local organisations while others are national. Further there is a distinction between such DPOs and charities which provide services and/ or advocacy with disabled people. The issue of who best represents the interests of disabled people is therefore problematic. This is made more difficult by the divisions between different groups of disabled people on ideological or values grounds. For example, some deaf people do not identify themselves as ‘disabled’ (although they are included within the Convention) but see themselves as culturally different.75 Other organisations and groups representing deaf people do not hold this particular view and there are therefore issues about which organisations can represent them in relation to the Convention. Some DPOs indicated a real interest in taking a lead on particular issues relating to the Convention, in particular with respect to its promotion, at a round table held to discuss its implementation. They saw this as of prime importance in ensuring their continuing involvement and shaping the way the Convention was implemented and monitored. The difficulties of speaking with one voice given the differences in ideological positions and priorities were noted as were the lack of resources to support such involvement. However, representatives considered strategies, such as different organisations taking on responsibility for particular articles of the Convention, and they were strongly interested in finding new ways to

74 Scope is a national charity working with disabled people and their families. 75 P. Ladd, Understanding deaf culture (Clevedon: Multilingual Matters, 2003).

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work together. Currently Disability Rights Watch has provided an online means for disabled people who can use this medium to have a voice. But there does not seem to have been a strong impetus from government to explore different accessible ways for involvement at a local, regional or national level.76 A further issue involves the effects of current government cuts on the capacity of DPOs to be actively involved in the implementation and monitoring of the Convention. While the Government in its initial report states that it is providing funding for DPOs to grow, local advocacy groups funded by local government have experienced difficulties in maintaining their organisations. Government cuts have affected funding for all voluntary sector organisations77 and have an effect particularly on small organisations which represent disabled people. In a time of economic stringency it is difficult to maintain the level of involvement promoted within the Convention without significant focused funding allocation. It is not clear from the government’s initial report that the involvement of disabled people is a strong and consistent focus in the implementation of the Convention. Indeed this is made clear in a comment from participating DPOs in their response to the document which states: Disabled people have welcomed the opportunity to engage in the reporting process, and the chance to comment on the draft report, although it was suggested that a longer period to comment was needed, and that the report does not sufficiently reflect or respond to the views that have been expressed.78

In order for the Convention to work effectively Article 33(1) and (2) bodies need to ensure that there are formal and informal engagement processes with persons with disabilities and DPOs. To develop the kind of participation and involvement by disabled people envisaged by the Convention requires leadership, coordination and resources.

76 R. Murray and K. Johnson, Monitoring and implementing the UN Convention on rights of persons with disabilities. Role of Government, Statutory and Civil Society Organisations. (Round table) (Bristol: University of Bristol, 2009). 77 D. Kane and J. Allen, Counting the costs. The impact of spending cuts on the voluntary and community sector (London: National Council for Voluntary Organisations, 2011). 78 UK Office for Disability Issues, UK Initial Report on the Convention on rights of persons with disabilities. Annex B. Summary of Issues raised by disabled people’s organisations and others (London: Office for Disability Issues, 2011), 118.



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2. Role of Civil Society Organisations: Engagement by Government While in some ways the ODI has the knowledge and networks to undertake this, some DPOs have expressed concern that it does not have the political weight to engage with the issues. Rather they have argued that the focal point needed to be one which was not a sub-section of a larger department but one which would be able to represent disabled people’s issues directly to cabinet.79 In its initial report to the CRPD Committee the ODI reports that it has engaged with disabled people and their organisations in three different ways. It has established a working group made up of representatives from 12 DPOs which were invited by Government to join the group. The working group is chaired by a member of the UK DPC. It has an advisory capacity and its terms of reference were to ensure Disabled People’s Organisations’ (DPO) involvement and participation in the Convention monitoring process, to provide an independent view to the Office of Disability Issues and the UK Government on issues arising from the implementation, monitoring and reporting on the Convention with particular reference to identifying gaps in compliance, and areas requiring action and reporting on success or progress. The working group was also tasked to provide ideas on what disabled people needed to know about the Convention and on how such information should be provided and to share information on how disabled people’s organisations were promoting, and raising awareness of, the Convention.80

The working group was established in 2010 and met eight times until the UK report was submitted.81 However the primary focus appeared to be to advise the ODI on the preparation of the UK report to the CRPD Committee. Indeed the working group was due to complete its work and to be reviewed on the submission of the UK report. The second means of involving disabled people involved the establishment of a network of networks which consisted of Equality 2025 and 12 partner disabled peoples’ organisations. Equality 2025 is an advisory non departmental public body which is sponsored by the ODI and consists of a chair and nine members of publicly appointed disabled people.

79 R. Murray and K. Johnson, Monitoring and implementing the UN Convention on rights of persons with disabilities, op. cit. 80 UK Initial Report on the Convention on Rights of Persons with Disabilities, op. cit., Annex C. p. 121. 81 Ibid, 122.

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Its purpose is to provide strategic advice to Ministers and senior officials to support the journey towards equality between disabled and nondisabled people in the UK.82 The stated aim of the network of networks project is to create a more efficient two-way communication between disabled people and government. Essentially the twelve organisations are asked by the ODI to consult disabled people on the Convention. The responses to this consultation were informed the Government’s report on the CRPD. Information about the network of networks project is minimal and there is no stated role which suggests a consistent involvement by the network in other aspects of implementation and monitoring. While this project was due to be evaluated in 2011 no report of the evaluation is available on the website.83 The third means of engagement with disabled people is through ongoing work by the ODI with the UK DPC.84 For example, the Government has funded training sessions to support the work of the UK-DPC in England to raise awareness of the Convention and an event to help DPOs develop their understanding of the Convention.85 Overall, one of the worrying issues appears to be the lack of transparency of processes of involvement. While conclusions were presented in the Government’s initial report, the ways in which disabled people were consulted or involved remained difficult to discover. And yet this is fundamental to holding to the spirit of the Convention. To engage with people with a range of different impairments and to do this with integrity would not only provide evidence of the realisation of Article 33 but might also provide a blueprint which could be used by other organisations and government departments. The transparency of process would also serve to reassure that the consultations and involvement are more than a superficial meeting of the requirements of the Convention. 3. Engagement with the Commissions Whilst the commissions have reiterated that it is the responsibility of government to engage with DPOs and disabled people, they also have 82 Equality 2025 Terms of Reference. http://odi.dwp.gov.uk/equality-2025/equality -2025-reports-and-work-plans.php. 83 Office for Disability Issues Independent Living Projects http://odi.dwp.gov.uk/odi -projects/independent-living-strategy/independent-living-strategy-projects.php. 84 Implementation of the UN Convention, http://odi.dwp.gov.uk/disabled-people-and -legislation/un-convention-on-the-rights-of-disabled. 85 UK Initial Report on the UN Convention on Rights of Persons with Disabilities, op. cit., para 358.



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stressed their own responsibility to do so: ‘the Commission is particularly mindful of its obligation to collaborate with disabled people and their organisations in executing its role’, in particular through the EHRC’s Disability Committee.86 In doing so, the EHRC has said, for example, that it will: set up an advisory group, call for evidence and consult with DPOs on draft submissions, provide opportunities for them to work with the Commission, among other things.87 To a large extent much of this has been done in practice. However, the line is again not particularly clear, with the Commission noting the responsibility of government under Article 33(3) to ‘carry out specific work to build the capacity of [DPOs] to participate fully in the monitoring process’, the latter also being a key task of the commissions.88 Furthermore, an NHRI may find it harder to engage with DPOs if as a statutory body it is seen as being too close to government and this appears to be the case especially with respect to the EHRC. This is exacerbated with the concern by some DPOs that the EHRC is a threat to their funding stream, it being seen as a ‘safer’ place to invest.89 There are concerns that all the equality and human rights commissions have not taken on the role of leadership in a way which has an impact on the ground and makes a difference to the lives of persons with disabilities. To engage with persons with disabilities in ways that allow meaningful involvement requires work which occurs at a local level and builds the capacity of DPOs to be involved in an on-going way. The EHRC details its work on the CRPD90 including work undertaken by the relevant commissions in Scotland and Wales. As noted above, this work has included two inquiries into issues affecting the rights of disabled people, one into disability related harassment and one concerning older people and home care. In both Scotland and Wales roundtables have been held with DPOs to identify key issues affecting the lives of disabled people. In Scotland 86 Equality and Human Rights Commission Submission to the Joint Committee on Human Rights concerning ‘Rights of People with Disabilities: Minister to Explain Government’s Commitment to New Convention, op. cit., para 5.3. 87 Ibid, para 2.2. 88 ‘The Commission expects the Government, in delivering its responsibilities under Article 33(3) to carry out specific work to build the capacity of DPOs to participate fully in the monitoring process. The Commission will also explore options for supporting and building the capacity of disabled peoples’ organisations’, ibid., para 6.2. 89 M. Oliver and C. Barnes, ‘Talking about us without us? A response to Neil Crowther’ (2008) 23 (4) Disability and Society 397–399, 399. 90 http://www.equalityhumanrights.com/human-rights/international-framework/ un-convention-on-the-rights-of-persons-with-disabilities.

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these have been followed up with on-line seminars. While this is commendable work, what does seem to be lacking are means of working directly with local DPOs in a way which will allow them to translate the Convention into actions which can be taken at local level. Conclusion Article 33 CRPD provides a unique opportunity for the UK to coordinate and consolidate its work on disability issues, providing a further platform for persons with disabilities and their representative organisations to become engaged at the governmental and statutory level to ensure meaningful change for individuals. However, there are concerns that the mechanisms that exist are not transparent in how they operate and are limited in their scope. There is little evidence that the CRPD has made a significant impact on the ground. The government committed to designate Article 33(2) bodies, to establish a focal point and to implement its obligations under the Convention. Both Government and the four commissions have obligations to involve persons with disabilities and DPOs, obligations that are enshrined in an international treaty. In times of considerable budgetary restraints, with the EHRC restructuring and facing resource cuts, international treaties and designation as an Article 33(2) framework provide some safeguard against attempts to undermine the national institutions’ existence and also provide opportunities to consolidate and expand their relationship with organisations on the ground. It is not too late for the UK bodies to maximise their impact in this regard.

CHAPTER FOUR

IMPLEMENTATION OF ARTICLE 33 CRPD IN ITALY: ‘MAGNA PARS EST PROFECTUS VELLE PROFICERE’* Delia Ferri Introduction Almost five years ago, on 30 March 2007 Italy signed the CRPD, then ratified it by Law 18/2009.1 By signing up to the CRPD, Italy has committed itself not only to higher standards of non-discrimination with respect to persons with disabilities, to improve accessibility and social inclusion, but also to reform the structure of its own policymaking process. As explained in the theoretical part of the book, in addition to the international monitoring system and the international quasi-judicial mechanism set forth respectively in Article 34 and in the Optional Protocol, Article 33 CRPD requires Parties to create or designate specific national bodies which will have responsibility for implementation and a framework which will be in charge of ‘monitoring’.2

* Seneca, Letters to Lucilio, 71, 36. This paper takes into account the legal developments up to 30 September 2012. All translations from an original Italian text other than the Italian Constitution (including the decisions commented) are mine. The English translation of the Italian Constitution is published by the Parliamentary Information, Archives and Publications Office of the Senate Service for Official Reports and Communication and can be found at . My special thanks go dr. Alfredo Ferrante of the Ministry of Labour and Social Policies. I am grateful also to Giampiero Griffo for the helpful insights on the National Observatory. I am indebted to Meredith Raley, Aisling de Paor, Giuseppe Martinico and Eilionoir Flynn for their comments on a first draft, and to Elaine Keane for the linguistic revision. Of course, all errors and opinions remain my own. 1 Law of 3 March 2009 n. 18 ‘Ratifica ed esecuzione della Convenzione delle Nazioni Unite sui diritti delle persone con disabilità, con Protocollo opzionale, fatta a New York il 13 dicembre 2006 e istituzione dell’Osservatorio nazionale sulla condizione delle persone con disabilità’, in G.U. n. 61 of 14 March 2009. 2 See supra the theoretical part of this book. See also L. Manca, ‘Articolo 33’, in S. Marchisio, R. Cera, V. Della Fina, La Convenzione delle Nazioni Unite sui diritti delle persone con disabilità. Commentario (Roma: Aracne, 2010) 455; F. Seatzu, ‘La Convenzione delle Nazioni Unite sui diritti delle persone disabili: diritti garantiti, cooperazione,

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In line with the firm call from the Office of the High Commissioner of Human Rights (OHCHR) to consider Article 33 CRPD a priority,3 Italy started the implementation process of this provision: the focal point and the coordination mechanism were designated and a monitoring body, the National Observatory on the Situation of Persons with Disabil­ ities  (‘Osservatorio Nazionale sulla condizione delle persone con disabilità’—National Observatory), was set up through the ratifica­tion instrument. Additionally, Italy is slowly commencing a reform of the legislation in force, with the view of realising the objectives of the Convention. Thus far, national NGO’s representing people with disabilities have warmly welcomed the structural innovations introduced and the independent mechanism created. Trade unions have also looked favourably upon them, without questioning the compliance of these structures with the Convention. Only some sporadic voices openly criticised the implementation of Article 33 in Italy.4 As we will discuss further in this chapter, there is still a considerable gap between Article 33 CRPD, its aspiration and Italy’s achievements: looking procedure di controllo’ (2009) 1 Diritti umani e diritto internazionale 259; M. Stein and J. Lord, ‘Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential’ (2010) 32 Human Rights Quarterly 691–730; G. de Beco, Study on the Implementation of Article 33 of the UN Convention on the rights of persons with Disabilities in Europe, Office of the High Commissioner of Human Rights (OHCHR) Regional Office for Europe. 3 UN Human Rights Council, Human rights of persons with disabilities: national implementation and monitoring and introducing as the theme for 2011 the role of international cooperation in support of national efforts for the realisation of the rights of persons with disabilities, 14 April 2010, A/HRC/RES/13/11, available at (accessed 31 July 2012). 4 See Parliament intervention of M.A. Farina Coscioni at (accessed 4 September 2012). Italian legal scholars have deserved little attention to the CRPD implementation process per se. Academic contributions mainly focus on this international piece of legislation and on its content, or on the multilevel protection of the rights persons with disabilities, rather than on its realisation in the domestic legal order. See ex pluribus L. Simonetti, ‘La Convenzione ONU sui diritti delle persone disabili’ (2007) I diritti dell’uomo 73; F. Seatzu, ‘La Convenzione delle Nazioni unite sui diritti delle persone disabili: i principi fondamentali’ (2008) 3 Diritti umani e diritto internazionale 535; F. Seatzu, ‘La Convenzione delle Nazioni Unite sui diritti delle persone disabili: diritti garantiti, cooperazione, procedure di controllo’ (2009) 2 Diritti umani e diritto internazionale 259; V. Bongiovanni, ‘La tutela dei disabili tra Carta di Nizza e Convenzione delle Nazioni Unite’ (2011) 3 Famiglia e Diritto 310; E. Ambrosi and M. D’Auria, ‘La l. n. 18 del 2009 di ratifica della Convenzione delle Nazioni Unite sui diritti delle persone con disabilità’ (2009) Famiglia Persone e Successioni 5; O. Osio and P. Bariabanti (eds.), Il diritto ai diritti. Riflessioni e approfondimenti a partire dalla Convenzione Onu sui diritti delle persone con disabilità (Milan: Franco Angeli, 2012).

italy: magna pars est profectus velle proficere121 closely at both the designated focal point and the National Observatory, which should, according to the Italian authorities, represent the framework provided for in Article 33 (2), a number of weaknesses can be identified. It is undeniable that Article 33 CRPD is a demanding and unprecedented provision. It is fairly true that it is, by all meanings, challenging the national disability policy; consequently, lights and shadows in its implementation are inevitable. It is also true that Italy has taken seriously its international commitments, in compliance with Article 117 (1) of the Italian Constitution: these years have witnessed some attempts to ‘reimagine’ the configuration of the whole disability domain, and so far the auguries for an efficient implementation are quite good. Nonetheless, the time seems ripe for a more robust debate and a more reflective advocacy, to expand the reach and the effectiveness of the implementation and monitoring system created. This essay aims to investigate the most intriguing legal aspects of the transposition of Article 33 CRPD in Italy. It tries to give a modest contribution in view of a more comprehensive reflection. Hence, it aspires to be read as a basis for future academic exploration. With regard to its structure, following this brief introduction, the chapter is divided into other five sections. Section I will ‘frame’ the Convention in the Italian legal order: we will discuss the ratification process and we will briefly sketch out the first achievements in the implementation of this landmark international treaty. Sections II and III will focus on the implementation of Article 33 CRPD in the Italian legal system, its effects from a practical point of view and its disadvantages and strengths. Section IV will consider the involvement of civil society, and in particular the involvement of disabled people’s organisations in the implementation and monitoring the Convention. The chapter will conclude with some general remarks. I. Framing the CRPD in the Italian Legal System This section is intended to briefly discuss the ratification of the CRPD and to give the reader some insights on the whole process of implementation of the Convention in Italy. Before embarking in the analysis of the transposition of Article 33, it seems useful to give the reader an overview, in order to put into perspective and better understand how the national bodies, which will

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have responsibility for implementation and for ‘monitoring’, fit into the Italian legal system. A. Ratification of the CRPD As mentioned above, Italy ratified the CRPD through Law 18/2009.5 No reservations to the Convention were made upon signature and ratification. The ratification law was approved in compliance with Article 80 of the Italian Constitution. In this respect, it seems useful to recall that, according to this provision, the ‘Parliament shall authorise by law the ratification of such international treaties as have a political nature, require arbitration or a legal settlement, entail change of borders, spending or new legislation’.6 This means that all international treaties (which ‘have a political nature, require arbitration or a legal settlement, entail change of borders, spending or new legislation’) are first negotiated by the Government. Then, the Government itself presents to the Parliament a ratification bill. It is up to the two parliamentary chambers7 to approve the bill and pass the law to expressly authorise the ratification of international agreements. Prima facie the ratification law has the same position in hierarchy of other ordinary laws. However, after the 2001 Constitutional reform, Article 117 (1) provides that ‘legislative powers shall be vested in the State and the Regions in compliance with the Constitution and with the constraints deriving from EU legislation and international obligations’. According to the Constitutional court,8 ‘in the lack of any specific constitutional provision, international norms enter the Italian system with the same rank of the Italian legal act which implements them’, but ‘[t]he platform of

5 On this law A. De Amicis, ‘La l. 3 marzo 2009, n. 18 di ratifica della Convenzione delle Nazioni Unite sui diritti delle persone con disabilità: i principi e le procedure’ (2009) Giurisprudenza di merito 2378. 6 The International treaties falling outside these categories are ratified in a so called ‘simplified form’ by the Government itself. See M. Franchini, ‘I poteri del Governo nella conclusione di accordi internazionali’ (1980) 1 Rivista Trimestrale di Diritto Pubblico 26. 7 It is worth recalling that the Italian Parliament consists of the Chamber of Deputies and the Senate of the Republic (Art. 55 of the Italian Constitution), and the legislative function is exercised collectively by both the Houses of the Parliament (Art. 70 of the Italian Constitution). 8 See Cases No. 348 and 349/2007, the subsequent decisions No. 311/2009, No. 317/2009, No. 80/2011 and No. 113/2011 at .

italy: magna pars est profectus velle proficere123 Article 117 (1) guarantees an infra-constitutional rank to international treaty law (ECHR included) in the Italian legal order’.9 As regard to the CRPD ratification process, it must be noted that, before the discussion of the ratification bill in the Parliament, a study to assess the overall compliance of the internal legislation with the Convention was carried out by the Institute of International Legal Studies (Istituto di Studi Giuridici Internazionali—ISGI) of the National Council of Research (Consiglio Nazionale delle Ricerche—CNR), upon the request of the Ministry of Labour and Social Policies.10 This ISGI Study was released in December 2008. It underlined a general compliance of the Italian legal framework on disability with the objectives of the Convention, but highlighted the need for amendments to the current legislation in order to fully comply with the CRPD and advance its goals.11 For the purpose of this essay, it is useful to note that the ISGI Study while recalling the meaning and the importance of Article 33, stated that the National Observatory envisaged by ratification bill was to be considered a ‘coordination mechanism’ compliant with Article 33 (1) CRPD. The ISGI Study highlighted that the National Observatory was not in compliance with the Paris Principles, and Italy should have created a new, different and fully independent structure with the purpose of carrying out the tasks mentioned in Article 33 (2) CRPD. The criticism of the ISGI did not led to a modification of the ratification bill presented by the Government to the Parliament, even before the completion of the study, on 28 November 2008.    9 F. Biondi Dal Monte and F. Fontanelli, ‘The Decisions No. 348 and 349/2007 of the Italian Constitutional Court: The Efficacy of the European Convention in the Italian Legal System’ (2008) German Law Journal 889. 10 ISGI, La Convenzione delle Nazioni Unite del 2007 sui diritti delle persone con disabilità; modalità di recepimento, attuazione a livello nazionale e regionale, strumenti di monitoraggio, at (accessed 20 August 2012).   11 It suffices here to point out that the ISGI Study mentions the need for a more consistent terminology, and underlines the need to substitute the word handicapped with the term ‘persons with disabilities’ in the meaning of the CRPD. This means that national definitions of disability should not only focus on the existence of an impairment resulting from a health situation, but should reflect the role of external barriers and focus on participation, and should probably include, for example, persons with short-term disabilities. The main challenge is that Law 104/1992 (see infra para. 2.3) still reflects the medical model which is incompatible with the Convention. However, it is to note that the National Institute for Social Security’s (Istituto Nazionale per la Previdenza Sociale- INPS) explanatory memorandum n. 155/2010 explicitly refers to the terminology of the Convention: in particular, INPS underlines that the term ‘handicapped person’ will be avoided and substituted by the terms ‘person with serious disabilities’ or ‘disabled person in serious condition’, in order to be in line with the CRPD.

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The discussion in both chambers was very brief. First, the Senate, almost unanimously, approved the ratification bill presented by the Government in January 2009, rejecting the amendments proposed by the Radical Party. The criticism raised by the Radicals concerned Article 3 of the bill (now Article 3 of Law 18/2009) and, particular, the limited presence of people with disabilities within the National Observatory, as well as the inadequate financial equipment, which was taken by extracting money from the social fund. The amendments proposed by them aimed to increase the members of DPOs inside the National Observatory and to create a new budget line (separate from the social fund) to finance this body. However, significantly for the purpose of this essay, these censures did not point out a lack of conformity with the Convention, but the shortcomings inherent to the Observatory. After the Senate’s approval, the discussion moved to the Chamber of Deputies: a brief but lively debate began on 20 February 2009. As happened in the Senate, it mainly focused on Article 3 of the Bill (i.e. on the provision aimed to implement Article 33 (2) CRPD and to set forth a general discipline of the National Observatory), rather than on the Convention as a whole. Silvana Mura, a member of the ‘Italia dei Valori’ (a centre-left party), whilst stressing the importance of the Convention, criticised inclusion of the general discipline of the National Observatory in Article 3 of the ratification law (as we will discuss further in Section III). According to Mura, the specific implementation of international pro­ visions should be kept separate to the ratification. In particular, she deemed appropriate a specific Act implementing Article 33 CRPD. Additionally, Mura claimed, like the radicals in the Senate, that the representation of people with disability within the National Observatory was too limited and its financial equipment was inappropriate. Analogous criticism was raised also by Maria Antonietta Farina Coscioni of the Democratic Party (another centre-left party). The amendments proposed during the discussion within the Chamber of Deputies by the Democratic Party, Italia dei Valori and by the centre party Unione di Centro aimed at modifying the composition of the National Observatory, reducing the total number of its members and improving participation of people with disabilities, were all rejected. The Chamber finally passed the law at the end of February 2009. It is illustrated that the approval of Law 18/2009 was relatively quick, compared to that of other European countries, some of them still in the process of concluding the Convention. In Italy, the ratification of the CRPD took place two years after the signing, and within three years from

italy: magna pars est profectus velle proficere125 the UN approval. We argue that there are three main reasons that explain this prompt ratification. First, the inherent importance of the CRPD and the need to radically change the detrimental situation experienced by the majority of people with disabilities12 was acknowledged by all the political parties. An extraordinary (considering the troubled Italian political system) consonance was found in both the chambers, and the criticism raised on the governmental bill was set apart. Secondly, as mentioned above, even if the Ministry of Labour and Social Policies gave mandate to the ISGI to carry out a study to assess the overall compliance of the internal legislation and policies with the CRPD, no amendments to the bill or any other law and no other actions to eliminate the few inconsistencies highlighted by the study itself were provided for. In addition, no preliminary scrutiny of regional laws took place beforehand. It seems that the organisations representing persons with disabilities (DPOs) did not force a comprehensive preliminary scrutiny of all national and regional rules on disability, since they feared it would have delayed the approval of the ratification bill. Thirdly, and most importantly, DPOs played a fundamental role in the ratification process, exerted a steady influence on the legislative process, and pushed forward a prompt and timely ratification of the Convention. Several initiatives were adopted in this respect: for example, a letter was sent to each member of the Parliament by a national umbrella organisation which unifies more than thirty associations (Lega per i diritti delle persone con disabilità—LEDHA)13 to ask for a swift approval of the ratification bill.14 B. Implementing the CRPD in Italy: An Overview This chapter focuses on the implementation of Article 33 CRPD. However, it seems important to frame this discussion and briefly consider how the whole implementation process has commenced. 12 ISTAT 2003, see (accessed 10 August 2012). For an analysis of these data: C. Chiatti, G. Altamura, I nodi dell’Italia, in C. Gori (ed.), Il sistema di protezione e cura delle persone non autosufficienti Prospettive, risorse e gradualità degli interventi, at (accessed 25 July 2012). 13  (accessed 25 July 2012). 14  (accessed 25 July 2012).

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With regard to legislation, after the entry into force of the Convention, no substantive changes have occurred at the national level. The legal framework, at the core of which is Law 104/1992 (‘Framework law for care, social integration and rights of persons with disabilities’),15 is currently in force. It is useful to recall that Law 104/1992 aims at guaranteeing the dignity and autonomy of disabled people and combating social exclusion (Article 1) in compliance with the constitutional principles of equality.16 It sets out a framework for social and medical care, services of personal aid (Article 9), assistance and allowances for persons with disabilities, which is implemented and completed at the regional level. Its general purpose is to ensure rights of persons with disabilities, creating a uniform national standard that Regions must comply with. Significantly, Law 104/1992 promotes integration of persons with disabilities into mainstream education, i.e. in the ordinary scholastic institutions and universities. The scholastic integration has as its objective the development of the potentialities of the person with disabilities in learning, in communication, in relationships and in socialisation (Articles 12 and 13). According to Articles 17 and 18, the Regions will be in charge of ensuring vocational training and integration into the labour market for persons with disabilities. This framework law contains specific measures to promote the ‘total integration into the world of work’, and has extended the quota system (collocamento mirato) to people with psychological impairments (Article 19), has guaranteed disabled people participating in public competitions and qualifying examinations the necessary help and extra time they need (Article 20), has given disabled workers, hired through competition in the public sector, the choice of a working site close to where they live (Article 21). Law 104/1992 also has the great merit of setting out general principles regarding accessibility and provides for tax relief and allowances (Articles 32 and 33). The right to vote on an equal basis has also been provided for in Law 104/1992, and then ensured by other subsequent laws. Thus, the key thrust of this law is to remove obstacles, improve access and make it possible for disabled people to enjoy mainstream services and facilities. 15 ‘Legge-quadro per l’assistenza, l’integrazione sociale e i diritti delle persone handicappate’ (G.U. of 17 February 1992, No. 39). On this law see: G. Cimaglia and A. Covatta, L’invalidità civile e la tutela della disabilità (Milan: Giuffrè, 2009) 349 et seq.; V. Valdalà, La tutela della disabilità (Milan: Giuffrè, 2010) 59. The court has recognised that the national law creates a framework within which the Regions must act. 16 On the constitutional status of disability see C. Colapietro, Diritti dei Disabili e Costituzione (Naples: Editoriale scientifica, 2011).

italy: magna pars est profectus velle proficere127 Even if this legal framework, which is in line with the constitutional principles of equality and social solidarity has not been modified, some notable improvements merit highlighting. First, amendments to align existing non-specialised legislation to the Convention and to mainstream disability rights have been already provided. A significant innovation is certainly Article 3 of the Code on Tourism, entered into force on 21 June 2011, which aims to implement the CRPD and to foster accessibility and non-discrimination in the tourism field. In addition, Law 49/200917 must be mentioned. This piece of legislation extended home voting for certain categories of persons with disabilities. This amendment seems to be in line with the Convention, even if it is not expressly justified on the basis of the CRPD. Secondly, a couple of relevant laws were passed in the past two years. Law 107/2010,18 which recognises deaf-blindness as a specific type of disability. Even if it does not mention the Convention, and it does not expli­ citly apply any of the CRPD provisions, we can firmly state that this law is in compliance with the spirit and rationale of the Convention, as it recognises the specificity and diversity of deaf-blind persons and aims at promoting their rights and underlining the need for targeted inclusion activities. In addition, Law 170/201019 aims to ensure the right to educa­ tion to children with specific learning difficulties (Difficoltà Specifiche di Apprendimento—DSA), i.e. children with difficulties in reading (Dyslexia), writing (Graphic Dyslogia and Dysorthography), or in computing (Discalculia or numeracy problems): even if there is not any explicit refe­ rence to the Convention in the text, it implements the international obligation to ensure an inclusive education system. In this chapter we cannot provide any comprehensive overview of what has been done at the regional level, it deserves to be mentioned that quite a few laws and administrative acts directly or indirectly concerning rights of persons with disabilities, were passed in 2009. A notable example is the

17 ‘Modifiche all’articolo 1 del decreto-legge 3 gennaio 2006, n. 1, convertito, con modificazioni, dalla legge 27 gennaio 2006, n. 22, in materia di ammissione al voto domiciliare di elettori affetti da infermità che ne rendano impossibile l’allontanamento dall’abitazione’ in G.U. of 8 May 2009, No. 106. 18 G.U. of 13 July 2010 No. 161. See also ‘Messaggio INPS 25 agosto 2010, n. 21724- Sordocecità —riconoscimento della fattispecie come disabilità specifica unica ai sensi della legge 24 giugno 2010, n. 107’, at (accessed 10 May 2012). 19 ‘Nuove norme in materia di disturbi specifici di apprendimento in ambito scolastico’ in G.U. of 18 October 2010, No. 244.

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decision of the Lombardia Government (delibera di giunta regionale)20 which sets forth the Regional Plan for policies in favour of persons with disabilities and expressly implements Article 19 CRPD. At the local level, the implementation of the Convention has started too. We can mention here that several municipalities have ‘adopted’ the CRPD, promoting the respect of rights of persons with disabilities within their own administrations and trying to improve inadequate governance arrangements.21 At the policy level, it must be noted that the biannual action plan on disability, which is expressly provided for in Article 3 of Law 18/2009 and in Article 5 of Decree 167/2010, is in the course of elaboration, as we will discuss later in this chapter.22 Moreover, at the time of the writing of this essay, the State report to be submitted to the CRPD Committee, according to Article 35 CRPD, has been prepared and released by the National Observatory. This might sound strange as the report should be prepared by the national focal point, and not by the independent mechanism. However, as we will see in Section III, as provided for by Article 3 Law 18/2009, it is the National Observatory in charge of it. The State report, after being translated into the English language, will be passed on to the Interministerial Committee for Human Rights (Comitato interministeriale per i diritti umani—CIDU), articled to the Ministry for Foreign Affairs, which will formally submit it to the CRPD Committee. In concluding this brief overview, we can affirm that small steps forward have been made. However, the economic crisis and the consequent public budget cuts are endangering the full realisation of the rights of persons with disabilities.23 In this respect, it is notable that a unofficial (and not statistic-based) survey conducted by Superabile to the question of whether the economic crisis affects persons with disability more than it 20 ‘Determinazione in ordine al Piano d’Azione Regionale per le politiche in favore delle persone con disabilità e alla relativa Relazione tecnica’ in B.U. Lombardia of 28 December 2010, No. 52. 21 See at accessed 20 March 2012). It must be mentioned that DPOs are collaborating with local authorities in order to promote the knowledge of the Convention, and to carry out awareness raising activities. In this respect see the booklet published by the Province of Milan and the FISH (accessed 20 March 2012). 22 See infra Section III. 23 N. Foggetti, ‘Risanamento pubblico vs diritti fondamentali delle persone con disabilità’, at (accessed 11 August 2012).

italy: magna pars est profectus velle proficere129 does other people, almost the 90% of the respondents answered yes.24 The new ‘Bill on Stability’ presented by the Government on 9 October 2012, and now under discussion in the Parliament, has been deeply criticised by DPOs because of the envisaged budget cut to social assistance policies, which could be seriously threaten the rights of persons with disabilities. II. Focal Point and the Coordination Mechanism: Implementing Article 33 (1) CRPD In Italy, the focal point and the coordination mechanism are the Directorate-General for Inclusion and Social Policies (Directorate), which recently replaced and absorbed both the Directorate-General for Inclusion, Social Rights and Social Responsibility and the DirectorateGeneral for the Govern of the Social Policy Fund and for Monitoring Social Expenses.25 Following the general overview provided above, this Section will first look at the role of the Directorate as a focal point, highlighting its strengths and weaknesses. Then, it will analyse the functions of the Directorate as coordination mechanism. A. The Directorate-General for Inclusion and Social Policies as Single Focal Point Italy has started the CRPD implementation process by designating the focal point and the coordination mechanism: as mentioned above, both of them are the Directorate-General for Inclusion and Social Policies. Unsurprisingly, as with many other EU Member States, Italy designated as focal point for matters relating the implementation of the Convention an internal structure of the Ministry of Labour and Social Policies. It seems that no other options had been considered. The Directorate has been (probably) deemed by the Italian authorities the most appropriate focal point since it is traditionally in charge of 24  (accessed 20 August 2012). The surveys of Superabile do not have any scientific value, but they may be useful to reveal trends in public opinion. 25 Art. 10 of the Decree of 7 April 2011 No. 144 (in G.U. of 25 August 2011 , No. 197) re-organised the Ministry of Labour and Social Policies. See (accessed 28 August 2012).

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disability matters. Nonetheless, even if the requirement that the focal point(s) must be at the governmental level is fully accomplished, this choice could be questioned. As clearly highlighted in the theoretical part of this book, the preference for a social affairs-related structure has been criticised by many commentators26 and by DPOs since it does not fully reflect the comprehensive human rights approach to disability envisaged by the CRPD. It was suggested that the focal point should have been placed within ministries dealing with justice, human rights or under the jurisdiction of the office of Prime Minister, to symbolise the rejection of the outdated model of compartmentalising persons with disabilities in view to their perceived inadequacies.27 As regard to Italy, the scope of action of the Directorate may seem, at a first sight, too weak to transform (or, better, revolutionise) the still limited scope of disability policy. One might also sustain that the Directorate is too ‘specialised’: it does not cover all the fields touched upon by the Convention, but mainly addresses issues related to employment, social affairs, non discrimination, without any (at least explicit) wide-ranging rights approach. It might be argued that, in view of effectively implementing the CRPD far-reaching provisions, the Ministry of Justice, which has a general competence on the protection of human rights, should have been elected as ‘focal point’. The abovementioned Interministerial Committee for Human Rights (Comitato interministeriale per i diritti umani—CIDU), whilst articled to the Ministry of Foreign Affairs,28 could have be deemed more appropriate to reflect the human-rights approach of the Convention because it is expressly in charge of human rights issues. In this respect, 26 EFC, Study on ‘Challenges and good practices in the implementation of the UN Convention on the Rights of Persons with Disabilities’, at (accessed 28 August 2012). 27 Open-ended consultation on National Frameworks for the Implementation and Monitoring of the Convention on the Rights of Persons with Disabilities organised by the OHCHR, Geneva, October 26 2009, at (accessed 20 March 2012). 28 The Committee was originally created by the Ministerial Decree of 15 February 1978, No. 519, then modified in 2007 by the Ministerial Decree . The Committee of Ministries for orientation and strategic guidance on human rights protection (Comitato dei Ministri per l’indirizzo e la guida strategica in materia di tutela dei diritti umani), that was created in 2007 by a Decree of the Presidency of the Council of Ministers and was attached to the Presidency of the Council of Minister, could also have represented a good option. It must be noted, however, that at present this Committee has ‘disappeared’ from the structure of the presidency.

italy: magna pars est profectus velle proficere131 one could also note that the CIDU already plays the role of focal point as regard to other UN treaties and to the Council of Europe framework, and, in any event, it will be in charge of submitting/presenting the report to the CRPD Committee and preparing answers and provide explanations if requested by the UN organ. Despite this criticism, it must be recognised that the choice of a social affairs-related structure presents considerable strengths, which have been highlighted in the theoretical part of this book. Having regard to Italy, we can underline that the Directorate fulfils many of the expectations regarding what a focal point will do, and its mandate include the tasks to build capacity within government on disability-related issues, to contribute to the development of policies, legislation that affect disabled people. In addition, the choice of the Directorate does not automatically neglect the conception of disability as a human rights issue, nor the social model itself, because the switch from the old charity approach do not really depend by the ‘location’ as focal point. The Directorate has shown from the very beginning the aim to put in practice the social model of disability envisaged by the Convention, and being (as it will be discussed further) the secretariat within the National Observatory,29 has attempted to create fruitful conditions to mainstream the rights of people with disability. Italy clearly opted for a single focal point. Neither were other focal points at the ministerial level formally appointed, nor were regional focal points elected and, at present, there is not any sign that reveals project or attempts to appoint regional focal points. As mentioned in the theoretical part, even if there is no fixed scheme, different horizontal focal points dealing transversally with disability policy within their respective competences have been considered a viable and remarkable solution to foster the implementation of the social model envisaged by the CRPD, while several focal points covering each of the different layers of government (local, provincial, regional, national) have been envisaged to ensure the implementation of the CRPD in regional or federal States. The Italian option of a single focal point at the ministerial level presents considerable strengths. A single focal point can be the driver of a consistent national disability policy agenda and be more efficient, since it avoids duplication of functions. The Directorate as a focal point can contribute to

29 See also (accessed 28 August 2012).

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rationalise and centralise all possible institutional players involved in disability policies. By contrast, the proliferation of focal points may seriously endanger the efficiency and effectiveness in the implementation of the Convention. The single focal point minimises the risk that when many are responsible, no one is finally responsible for the proper transposition of the CRPD in the domestic legal framework. Moreover, in times of economic crisis and spending review, a single focal point is probably ‘less expensive’ and makes it possible to devote resources to the substantive implementation rather than to structural aspects. Lastly, it is easier both for persons with disabilities and international institutions to identify the body responsible for implementation. By contrast, to choice elect a single focal point and the lack of regional focal points cannot but be questioned. Italy could be certainly described as a regional30 or even as a ‘de facto federal system’.31 The legislative competence over disability matters is shared between the State and the Regions, and the boundaries between their respective competences are not clear as they pretend to be. Article 117 of the Italian Constitution gives the State the exclusive legislative powers on ‘determination of the basic level of benefits relating to civil and social entitlements to be guaranteed throughout the national territory’ (so called LEP),32 ‘general provisions on education’, and ‘social security’. The competence on ‘job protection and safety’, on ‘education, subject to the autonomy of educational institutions and with the exception of vocational education and training’, ‘large transport and navigation networks’, ‘communications’, ‘national production, transport and distribution of energy’, ‘complementary and supplementary social security’, ‘co-ordination of public finance and taxation system’, ‘enhancement of cultural and environmental properties, including the promotion and organisation of cultural activities’ is shared between State and Regions. The ‘Regions have legislative powers in all subject matters that are not

30 Ex pluribus A. Anzon-Demmig, I poteri delle Regioni. Lo sviluppo attuale del secondo regionalismo, (Turin: Giappicchelli, 2008); P. Caretti and G. Tarli Barbieri, Diritto regionale (Turin: Giappichelli, 2009). 31 P. Bilancia-F. And Palermo-O. Porchia, ‘The European Fitness of Italian Regions’ (2010) 2 Perspectives on Federalism, at (accessed 28 July 2012). 32 On the LEP as interpreted by the Constitutional court see ex pluribus G. Guiglia, I livelli essenziali delle prestazioni sociali alla luce della recente giurisprudenza costituzionale e dell’evoluzione interpretativa (Milan: Giuffré, 2007).

italy: magna pars est profectus velle proficere133 expressly covered by State legislation’. Certainly, the State has a strong legislative power over disability issues, since it is in charge of the ‘determination of the basic level of benefits relating to civil and social rights’: such a cross cutting national competence implies that whenever a regional law provides for benefits related to civil or welfare rights, it must be subordinated to the national law that establishes the minimum standards with regard to those rights.33 Up to now, the Constitutional court has recognised this key responsibility of the State in legislating on disability, and accordingly has always rejected the constitutional review for violation of the division of competences of the most important national piece of legislation on disability, the abovementioned Law 104/1992. However, there is a myriad of regional laws and regulations governing the situation of people with disabilities, and it seems regrettable that there is no formal and explicit involvement of the regions in the implementation process. It appears that the involvement of the Regions would prove essential to exert the full potential of the CRPD. Italy should have appointed regional focal points, like other EU States, such as the UK or Belgium, in order to ensure the respect of its constitutional structure. The choice of more focal points should have followed the  division of competence set out in Article 117 of the Italian Constitution. The lack of regional focal points can potentially cause inconsistencies and may jeopardise the attainment of the objectives of the Convention. In particular, the deficiency in creating regional focal points may endanger the implementation of Article 9 CRPD in connection with the right to take part to cultural life or sports, which are mainly regional matters. It may also may create gaps in the protection of the rights of persons with disabilities with regard to matters such as the right to education, and  social assistance, since the regions have considerable powers in these areas. The option of a single focal point fails to involve all the territorial administrations which have relevant competences in the fields covered by  the CRPD, and prevent (at least potentially) different governmental layers from contributing to the implementation of the CRPD, in compliance with the subsidiarity principle, which is an inescapable

33 Ex pluribus on this competence, see the Constitutional court’s decisions No. 248/2006; No. 50/2008; No. 207/2010; No. 248/2011.

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feature of compound states and is expressly provided in the Italian Constitution.34 Concluding, the choice of electing a single focal point is formally obedient to Article 33 (1) CRPD and brings considerable practical (and financial) advantages. It is uncertain whether this solution really fits into the Italian system, in the same manner as it might fit into States with a minimum level of decentralisation (traditionally referred as unitary). In any case, and regardless of any censure that can be raised, the capacity of the Directorate as focal point to competently and resourcefully carry out the tasks provided for in Article 33 (1) and to mainstream disability is to be verified in concreto and in the long run. Up to now, there are no major achievements exclusively attributable to the Directorate itself. The legislative amendments to align existing non-specialised legislation to the Convention and to mainstream disability rights, described in Section I, have to be attributed to the Parliament or both the Government and the legislative. In addition and remarkably, as we will discuss in the subsequent Section, in its capacity of technical secretariat within the National Observatory (ex Article 4 of Decree 167/2010), it has provided a remarkable contribution in preparing the biannual action plan on disability. However, it cannot but be recognised that this plan has been prepared by the National Observatory. It can be noted that the Directorate has been occasionally and informally collecting suggestions and pitches for reform of legislation from civil society, maintaining a liaison with NGOs and citizens, and together with the whole Ministry is promoting studies on disability, such as the new report on disability, recently published on the website of the Ministry of Labour and Social Policies.35 B. The Directorate-General for Inclusion and Social Policies as Coordination Mechanism The Directorate has been designated as coordination mechanism too and no other options have been explored for this.

34 Art. 118 and Art. 5 of the Italian Constitution. 35 G. Gori (ed.), Il sistema di protezione e cura delle persone non autosufficienti Prospettive, risorse e gradualità degli interventi, at (accessed 10 May 2012).

italy: magna pars est profectus velle proficere135 Indeed, the Convention does not provide a clear distinction between the focal point and the coordination mechanism. Even the OHCHR study has not provided a fruitful guidance, since it advocates the designation of an overall focal point, in toto similar to the coordination mechanism, and it is quite obscure how this would distinguish itself from the coordination mechanism, where it exists.36 We think that the Italian choice to designate the same Directorate as coordination mechanism reflects this substantial lack of clarity. The Directorate should carry out a horizontal coordination (i.e. coordination among different Ministries within the Government). However, it is doubtful that the Directorate has the necessary authority to carry out this function, which could have been carried most effectively by the Presidency of the Council of Ministers. It is evident that the Presidency would have had the strong power to require cooperation from other ministries and mainstreaming disability. At present it is uncertain how this horizontal coordination is taking place. It seems that a certain degree of informal cooperation has been ensure up to now, but no relations with other bodies or directorates in other Ministries has been formalised. Most importantly, the Directorate should also guarantee a vertical coordination (i.e. cooperation among different level of governments), in particular with Regions. By contrast, any open and formalised collaboration with regional authorities is still absent. The fact that there are no sub-focal points makes that this will probably never happen. With regard the purely operational aspects, there are no apparent insights on what the Directorate is doing as coordination mechanism, nor practical examples capable of illustrating its activities. This is so also because a certain degree of coordination is taking place within the National Observatory: as we will explain later, both representatives of other ministries and of the so called State-Regions Conference (Conferenza Stato-Regioni),37 a cooperative body established to discuss issues of regional interest, are included in the National Observatory. In concluding this succinct overview, we cannot but note that the coordination mechanism should have been an opportunity to reinforce the cooperation among different ministries (despite an explicit commitment of the directorate in this respect in view of fully implement the Con­ vention), and to reinforce vertical coordination among different territorial

36 UN Human Rights Council, op. cit., para. 33 et seq. 37  (accessed 31 August 2012).

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administrations. It appears, however, that the formal coincidence among the focal point and the coordination mechanism and the existence of the National Observatory makes the situation blurred and ultimately frustrates the spirit of Article 33 (1) CRPD in this respect. III. Independent Monitoring or Government Control over the Convention? Challenges and Perspectives in the Implementation of Article 33 (2) CRPD In order to implement Article 33 (2) CRPD, Italy created the National Observatory on the Situation of Persons with Disabilities (Osservatorio Nazionale sulla condizione delle persone con disabilità), which should represent the independent mechanism. The National Observatory was envisaged in Article 3 of Law 18/2009. Subsequently, it was ruled by Decree No. 167 of 6 July 2010 (Regulation of the Observatory, hereinafter Decree 167/2010),38 which entered into force in October 2010. The Ministerial Decree of 30 November 2010 (recently modified by Ministerial Decree of 10 March 2011) nominated the members of the Observatory. This Section will first describe the National Observatory, in view of allowing the reader to fully appreciate the main features of this body, its connotations and ‘undertones’. Secondly, it will provide a critical analysis of it: the composition, mandate and powers of the National Observatory will be evaluated against the Principles relating to the Status and Functioning of National Institutions for the Promotion and Protection of Human Rights, better known as the Paris Principles, and Article 33 (2) CRPD. Finally, the Section will consider how to face the disadvantages of the National Observatory, taking into account the current Italian legal framework. A. The National Observatory on the Situation of Persons with Disabilities: Structure, Functions and Functioning The complexity of the transposition of Article 33 (2) CRPD is well known and recognised by both scholars and DPOs. As mentioned in the theoretical part of this book, the difficulty in setting up independent mechanisms compliant with the Paris Principles, especially for those countries which 38 Ministerial Decree of 6 July 2010, No. 167 ‘Regolamento recante disciplina dell’Osservatorio nazionale sulla condizione delle persone con disabilità ai sensi dell’articolo 3 della legge 3 marzo 2009, n. 18’ (Entry into force 23/10/2010), available at (accessed 20 July 2012).

italy: magna pars est profectus velle proficere137 do not have a national human rights institution (NHRI),39 and the need for a framework capable of carrying out the complex tasks mentioned in Article 33 (2) have challenged several States. Some of them, within the EU, are still in the process of choosing a framework as well as examining how to set up the independent mechanism. By contrast, Italy did not vacillate and, from the very beginning, opted for setting up a new structure, the abovementioned National Observatory. No other options but the Obser­ vatory were taken into consideration: neither the creation of an NHRI, nor the establishment or several independent mechanisms were examined. As previously mentioned, the National Observatory was provided for in Article 3 of Law 18/2009. The choice of the Government to include the general discipline of this body in the ratification bill was criticised during the parliamentary discussion. As noted above in Section I, representatives of centre-left parties claimed that the implementation of international provisions, such as Article 33 CRPD, should have been kept separate to the ratification and open to a larger parliamentary debate. The National Observatory is ruled by Decree No. 167/2010. The approval of this decree was preceded by an informal consultation process carried out by the Directorate-General for Inclusion and Social Policies which involved the major DPOs, such as National Council on Disability (Consiglio Nazionale sulla Disabilità—CND) and FISH (Federazione Italiana per il Superamento dell’Handicap). Thus, we can affirm that the text of the Decree No. 167/2010 is the result of a common will to create an adequate body to fully implement the Convention.40 With regard to the structure, the National Observatory is organisationally placed within the Ministry of Labour and Social Policies in Rome (Article 1 of Decree 167/2010), which finances it and is chaired by the Ministry (Article 3 (2) of Law 18/2009). In compliance with Article 4 (1) of Decree 167/2010, the Directorate-General for Inclusion and Social Policies provides the National Observatory with a ‘technical secretariat’. With regard to the composition, according to the Law 18/2009, the number of members should not exceed 40, and must respect the principle of equal opportunities between men and woman. The Ministerial Decree of 30 November 2010, which set up the National Observatory, appointed 39 G. de Beco, ‘Article 33(2) of the UN Convention on the Rights of Persons with Disabilities: Another Role for National Human Rights Institutions?’ (2011) 29 Netherlands Quarterly of Human Rights 84. See also G. de Beco, ‘Networks of European National Human Rights Institutions’ (2008) 14 European Law Journal 860. 40 See reply of the Vice-Ministry of Labour, Michel Martone of 16 April 2012.

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40 members, which include nine representatives of various ministries, two representatives of local authorities (respectively Province and Muni­c­ipalities), two representatives of the Conference State-Regions, two representatives of the Social Security Institutions (Istituto Nazionale della previdenza Sociale—INPS and the former Istituto nazionale di previdenza per i dipendenti dell’amministrazione pubblica—INPDAP),41 one representative of the National Statistics Institute (Istituto Nazionale di Statitisca— ISTAT), seven representatives of social partners (trade unions and industry organisations), three independent experts and fourteen representatives of organisations of persons with disabilities. The DPOs represented are: FAND (Federazione Associazioni Nazionali Disabili), UIC (Unione Italiana Ciechi), ENS (Ente Nazionale Sordi), ANMIL (Associazione Nazionale Mutilati e Invalidi Lavoro), UNMS (Unione Nazionale Mutilati per Servizio), ANMIC (Associazione Nazionale Mutilati e Invalidi Civili), FISH, FAIP (Federazione Associazioni Italiane Para-Tetraplegici), EDF (European Disability Forum), DPI (Disabled Peoples’ International), FIADDA (Famiglie Italiane Associate per la Difesa dei Diritti degli Audiolesi), ANFFAS (Associazione Nazionale di Famiglie di Persone con Disabilità Intellettiva e/o Relazionale), Autismo Italia, FIABA (Fondo Italiano Abbattimento Barriere Architettoniche), COORDOWN, UNIAMO F.I.M.R. Onlus (Federazione Italiana Malattie Rare) and Gli Amici di Luca. Many of these DPOSs are part of the National Council on Disability. The National Observatory also includes ten permanent guest members (invitati permanenti), without voting rights, who are mainly representatives of civil society.42 It is not clear what is the function of these participants, but they certainly increase the inner pluralism of the body, and they could provide input and feedback on the activities carried out. It is to note that the Decree of 10 March 2011 slightly modified the composition of the National Observatory, in particular it substituted a single member (the representative of the Ministry of Health). Inside the National Observatory, a Scientific Committee has been constituted, in compliance with Article 3 (1) of Decree 167/2010. This Scientific Committee is composed of two representatives of the Ministries (one

41 The INPDAP no longer exists per se. Article 21 of Law Decree 201/2011 (now Law 214/2011) provided for the absorption of the INPDAP in the INPS, in order to increase the efficiency and the effectiveness of social security. See (accessed 20 August 2012). 42 Article 2 of the Decree of 30 November 2010.

italy: magna pars est profectus velle proficere139 representative of the Ministry of Labour and Social Policies and one representative of the Ministry of Health), one representative of the Regions and one of the local authorities three representatives of organisations of disabled persons, and three experts (chosen by the Ministry). According to Article 3 of Law 18/2009, its task is to provide the National Observatory with ‘analysis and scientific orientation’. No further specification has been given by the Decree on the specific duties of this Committee, but it seems that it has to ensure technical, methodological and legal guidance on disability issues. With regard to the mandate of the National Observatory, Article 1 of Decree 167/2010 defines expressly it as a consultative body in charge of technical support for the elaboration of national disability policies. Its tasks, according to Article 3 of Law 18/2009, are to promote the implementation of the Convention, to prepare the report to submit to the CRPD Committee, to prepare the biannual action plan for promoting rights of persons with disabilities, to monitor disability policies in Italy (through the preparation of a specific report, in compliance with Article 41 (8) of Law 104/1992), to promote studies and research activities on disability, including the collection of statistical data on the situation of persons with disabilities.43 The preparation of both the State report to be submitted to the CRPD Committee and the biannual action plan are certainly the most noteworthy tasks of the National Observatory. It appears at a first sight that devolving the preparation of the plan to the independent mechanism represents a peculiarity of the Italian system. As mentioned in the theoretical part of this book, this plan is normally prepared by the focal point. By contrast, in Italy, the plan is to be discussed in and prepared by the National Observatory (which should vest as the independent mechanism), and then adopted by Decree of the Presidency of the Republic upon the proposal of the Ministry of Labour and Social Policies, after the approval of the Council of Ministers, thus taking the rank of a by-law. As regard to finances, the National Observatory has been provided with an annual budget of 500.000 Euros, from 2009 to 2014. The sum has been taken from the general budget of the Ministry, and decisions on the use of the budget are adopted by the Ministry and the National Observatory by consensus.44 In 2010, almost all the annual budget was spent for the preparation of the biannual action plan, and in particular for research activities

43 Article 3 (5) of Law 18/2009. 44 Article 8 of Decree 167/2010.

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carried out by the Institute for the development of vocational training of workers (Istituto per lo sviluppo della formazione professionale dei lavoratori—ISFOL). In 2011, most of the budget was allocated for an agreement with ISTAT for the collection of updated statistical data on disability. Remarkably, the National Observatory has started to operate relatively quickly after its creation, also thanks to the pressures placed on it by DPOs. Further to its first meeting, which took place on 16 December 2010, it elaborated a procedural document sought to establish its own working scheme. On May 2011, Methodological Notes on the organisation of the work of the National Observatory (Notes) were released, and then finally approved on 6 July 2011. The latter soft law document was the first tangible act of the Italian body, and discloses its strong will ‘to create synergies and most effectively orient the efforts and the actions of different institutions […] which have the task of collecting and managing statistic information on the conditions of persons with disabilities, of elaborating programmatic documents’.45 The Notes also show a commitment towards the preparation of the report to submit to the CRPD Committee, as well as a biannual disability action plan to set forth the policy priorities, and a revision of statistical index to monitor more effectively the implementation of the Convention. Further to the Notes, six interdisciplinary working groups were constituted, each of them ‘chaired’ by a DPO member.46 These groups were supported by external experts hired on ad hoc basis by the National Obser­ vatory itself. Each group undertook a separate line of analysis with somewhat different purposes within three main headings explicitly individuated by the Notes: ‘statistic information on the conditions of persons with disabilities, monitoring of disability policies, definition of the new action plan for disability’.47 The results of each have been reported to contribute both to the elaboration of the biannual plan and the State report, which are, at present, the main achievements of the National Observatory. It must be noted that, during 2011, all the groups analysed the national statistic available and defined benchmarks and indicators to effectively monitor the conditions of persons with disabilities, discussed the reporting system on discrimination on the ground of disability, and analysed national legislation relevant affecting people with disabilities.

45 Methodological Notes, para. 1, p. 3. 46 Ibid., para. 8, p. 15. 47 Ibid., para. 3, p. 4.

italy: magna pars est profectus velle proficere141 B. A Critical Analysis of the National Observatory Since Italy does not have an NHRI, and the wording of the Convention leaves the door open to the designation as a framework of a single existing (or new) independent mechanism, the choice to create a new body was probably the most suitable and the easiest way to implement Article 33 (2). Nevertheless, it emerges from the overview provided above that there has been some ‘confusion’ in the implementation of Article 33 (1) and (2). It appears that the National Observatory does not fully respect the Paris Principles, according to which independence and pluralism must be guaranteed. In addition, it is clear that the tasks of the National Observatory are not exactly those of the independent mechanism. First, as regard to its structure, it is undeniable that the National Observatory fully respects the requirement of pluralism set forth in the Paris Principles. It ensures appropriate inputs from different sectors in society and offers an opportunity to confront different perspectives, but also guarantees the mainstreaming. The 40 members reflect the plurality of views of both state and regional authorities and of non-government bodies and DPOs. In addition, the number of people with disabilities appointed as members of the National Observatory is noteworthy, especially if it is considered that initially it was provided only a minimum percentage of 20% of DPO members within it.48 The significant participatory nature of the National Observatory is well exemplified by the fact that the six working groups are all chaired by DPO representatives. However, even if pluralist representation of the social forces is guaranteed, independence, in the meaning explained in the theoretical part, is far from being ensured. Government departments are heavily represented and they participate in the deliberations, whilst the Paris Principles clearly provide that they may only participate as observers. The presence of members of the public administrations makes the Observatory an amalgam, more similar to a coordination mechanism, rather than to the framework/independent mechanism provided for in Article 33 (2) CRPD. Secondly, the National Observatory does not have any functional independence because, whilst acting in a participatory manner as clarified above in Section III.A, it is openly exposed to governmental interference and is organisationally placed within Ministry. It is not even given a fully

48 See reply of the Vice-Ministry of Labour, Michel Martone, of 16 April 2012.

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independent budget. As stated above, the amount is detracted from the funds of the Ministry, and decision on how to allocate the funding are taken by the Ministry and the National Observatory. This is clearly in breach of the Paris Principles, which provides for financial independence, as explained in the theoretical part of the book. According to the Convention, the independent mechanism should have sufficient resources at disposal, but it could be highly questioned that the annual budget of 500.000 Euros is an adequate budget for the National Observatory. Nonetheless, the current harsh crisis and the attempt to reduce public expenditure makes unlikely any modifications in this respect. At the time of the writing of this essay, it is also unclear whether the forthcoming so called ‘spending review’, which the Monti’s Govern­ ment is attempting to complete, will reduce the budget of the National Observatory. Thirdly, the tasks the National Observatory, mentioned by Article 3 (5) of Law 18/2009 explained in Section III.A, do not fully reflect those set forth in Article 33 (2) CRPD. According to the Convention, the functions of the independent mechanism, in compliance with the Paris Principles, should be: to promote, protect, and monitor the implementation of the Convention. The National Observatory is certainly in charge of promoting the implementation of the Convention, as Article 3 (5) of Law 18/2009 clearly states, through the endorsement of research activities on disability, and of the collection of statistical data. It is also assigned the duty of monitoring, and, as mentioned above, it is in charge of the preparation of the report on disability policies in Italy. It cannot however carry out the task of protection, which is not even cited: it is clear that the National Observatory does not carry out any quasi-judicial competence. It could be argued that the Scientific Committee, set up inside the National Observatory, should represent the independent mechanism. Thus, it might prove useful to consider it vis-à-vis the Paris Principles. First, it is to note that the Committee, is only a internal ‘organ’ of the National Observatory (and it gives the impression of a sort of ‘small Observatory’), hence it is not functionally independent. In addition, whilst having a pluralist composition and being linked to civil society, is itself composed by representatives of the ministries and, more generally, of the public administration. Even if the fact that three of its members come from DPOs, unequivocally shows the efforts to include persons with disabilities in the monitoring process, as required by Article 33 CRPD, independence is not guaranteed at all. Secondly, it does not have its own budget, because it is an internal body. As regard to its functions, it is

italy: magna pars est profectus velle proficere143 apparent that the Committee is intended to be a technical body. Even if it is far from being unambiguous what its functions are, it is not certainly in charge of monitoring, promoting and protecting the implementation of the Convention. This analysis makes apparent a valuable attempt of the Italian authorities to create a specialised, participatory, inclusive and multifunctional body. However, the National Observatory and its Scientific Committee do not comply with the Paris Principles. C. Is there a Room for Improvement? On the basis of the arguments explained, the establishment of the National Observatory is insufficient to comply with Article 33 (2) CRPD, as it was also noted in the ISGI’S study mentioned in Section II of this chapter. Since, at this stage the modification of the National Observatory is unlikely to happen, and Italy does not have a national Ombudsman, an easy way out would be to create, in addition to it, another new body fully compliant with the Paris Principles. This body and the National Observatory would act as a framework, in compliance with the Convention. As regard to the new body, the first possibility would be to set up new truly independent and para-judicial body, i.e. an independent administrative authority, modeled on the other administrative authorities (e.g. the Antitrust Authority, or the Data Protection Authority). Such a body should be able to carry out the task of protection and, to this purpose, it should be authorised to hear and consider complaints and petitions, and should conciliate or issue binding decisions (because the National Observatory does not have any of these prerogatives). However, it is undeniable that the creation of this authority would take time and consideration, and would require a stable political majority, which is not the case in Italy (at present). Another option (probably the best option in abstracto, better than the setting up of a independent administrative authority) would be the creation of an NHRI. The NHRI would act beside the National Observatory and should not, at least initially, take over it. However, it is difficult to predict whether this option is plausible. Indeed, a new law on the creation of the Italian NHRI is currently under consideration in the Senate, but it is not clear when (and if) it will be approved.49 It must be noted that, the bill

49 Bill on the setting up of the National Commission for the promotion and protection of human rights (DDL C4534 ‘Istituzione della Commissione nazionale per la promozione e

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under discussion is the latest of a series of draft never passed: a first draft law was already approved in April 2007 by the Chamber of Deputies, but remained to be endorsed by the Senate. Another draft was introduced in the Senate in late 2009, then discussed in February 2010. The current bill, presented on 5 May 2011, is under discussion, but the forthcoming electoral period and the harsh crisis are quite likely to delay the final endorsement. In addition to the creation of a truly independent mechanism, compliant with the Paris Principles, connections between the National Obser­ vatory and other bodies already in place, such as the abovementioned ISFOL, which will carry out, according to the Notes, the legislative analysis for the report to be submitted to the CRPD Committee, the Permanent Observatory on Pupils with Disabilities (Osservatorio permanente per l’integrazione degli alunni con disabilità),50 the Committee for the promotion of accessible tourism (Comitato per la promozione e il sostegno del turismo accessibile) should be optimised and clarified. It must be recalled, that, up to now, only an informal collaboration with the Observatory on Infancy and Adolescence (Osservatorio per l’Infanzia e l’Adolescenza)51 has been conducted. The advantage of a formalised and more intense cooperation is that the implementation of the CRPD would benefit from the mutual expertise of these bodies. A more transparent partnership with bodies having relevant competencies could be done immediately, and with no additional costs for the State: this would contribute to exert the full potential of the Convention. Finally, in relation to the implementation of Article 33 (2) CRPD (as well as of Article 33 (1) CRPD), there is a very weak involvement of parliamentary structures. That is quite surprising, if we consider that the Parliament usually has the legislative power, i.e., the power to adopt appropriate laws to implement the Convention. Thus, in view of creating the framework envisaged by the provision under discussion, forms of collaboration with both the chambers should be put in place.

la protezione dei diritti umani’) (accessed 31 August 2012). 50 In January 2012 a Permanent Observatory on Pupils with Disabilities (Osservatorio permanente per l’integrazione degli alunni con disabilità) has been established within the Ministry of Education. The functioning of this Observatory is still unclear. However, this body could be certainly part of the network. 51 .

italy: magna pars est profectus velle proficere145 IV. Participation of People with Disabilities: The Implementation of Article 33 (3) CRPD It is well known that Article 33 (3) CRPD does not require any specific body, but explicitly refers to the obligation to engage civil society (in particular persons with disabilities and their respective organisations) in the monitoring of the Convention through the framework and outside of any structure.52 In doing so, this provision does further specify the general principle of participation of people with disabilities provided for in the Convention. It is useful to recall that in Italy there are several DPOs active at the national, but also at the local level. Many of the national ones are assembled in umbrella organisations. In particular, 36 DPOs forms the National Council on Disability (Consiglio Nazionale sulla Disabilità—CND),53 which is an independent an unitary organisation representing people with disabilities, and is accredited at the United Nations. Another important umbrella organisation, which unifies several associations, is FISH.54 Created in 1994, FISH aims at promoting non-discrimination, social inclusion, autonomy and participation. The Italian Disability Forum also deserves to be mentioned: it is the larger umbrella organisation which represents Italy within the European Disability Forum. All these organisations are non-profit NGOs and, generally speaking, are not directly financed by the State. They are independent and build networks, mobilise campaigns that advance disability rights through advocacy, and try to communicate with public institutions with a great emphasis on the Convention.55 Furthermore, these organisations have put in place several specific websites devoted to explain and comment laws and judicial decisions affecting disability, such as Superabile.it or Handylex.org. At present, DPOs are not formally involved in the focal points activities, whilst some form of consultation has been put in place (even if not open and on a stable basis): it is not clear how many DPOs have been consulted and how, though. It is worth noting that representatives of DPOs sit in the so called ad hoc tables of consultation (concertazione), together with trade

52 See the theoretical part of this book. 53  (accessed 20 August 2012). 54  (accessed 20 August 2012). 55 See e.g. (accessed 11 May 2012).

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unions when called by the Ministries. Additionally, some of them sit in committee or in governmental bodies and can play a consultative role: e.g. the FISH sits in the Committee for the promotion of accessible tourism. As already examined in Section III, DPOs have been involved and are currently actively collaborating with the National Observatory. DPOs have also produced, through their own advocacy activities, a practical guide on how to implement the CRPD in order to ensure that its principles and the relevant legal (and non-legal) concepts were not mistranslated or misunderstood. In this respect, a quite practical example of inclusive implementation of the Convention is the translation of the text into the Italian language. In addition, DPOs boost day by day social and political changes and combat discrimination and marginalisation.56 Conclusion Perhaps it is too early to examine whether the national structures for the implementation and monitoring of the Convention are functioning properly and have empowered persons with disabilities. However, the overview provided for in this chapter allows us to draw some tentative conclusive remarks. The ratification of the CRPD in Italy has not led to substantial processes of change, whether political or legislative. As regard the implementation of Article 33 (1) CRPD, it has proven to be relatively easy, and the designation of the Directorate-General for Inclusion and Social Policies satisfies the formal requirements set forth in the CRPD in this regard. It is, however, lamentable, for a State like Italy, that neither have regional focal points nor a coordination mechanisms have been created. The implementation of Article 33 (2) CRPD is also proving problematic, since the National Observatory, whilst being significantly pluralist and inclusive, is not independent and has no mandate to protect the rights 56 Astonishing episodes have demonstrated that discrimination and prejudice remain significant problems: on 31 March 2011, the disabled deputy Ileana Argentin was insulted by other two deputies (accessed 10 May 2012). In April 2011, a deputy of Lega Nord made a speech against falsi invalidi which was considered discriminatory against persons with disabilities by FISH, one of the main representative organisation of disabled persons. (accessed 10 May 2011). Against this statement, the NGO Cittadinanzattiva has launched an advertising campaign: ‘Sono un VIP’, where VIP means ‘Very Invalid Person’ ( accessed 16 May 2012).

italy: magna pars est profectus velle proficere147 envisaged in the Convention. From the analysis provided above, it appears lucidly that National Observatory is an unusual hybrid participatory body, more similar to the coordination mechanism of Article 33 (1), than to the monitoring mechanism envisaged in Article 33 (2). It is certainly a notable and interesting body and presents considerable strengths, but also important weaknesses and a substantial lack of compliance with the Paris Principles. Italy is therefore not fully in compliance with the CRPD and should more convincingly engage in the construction of a true framework formed by a network of structures, which would capture the transformative potential of the Convention. Some efforts towards the implementation of Article 33 (3) CRPD have been made. In this respect, even if the Convention leaves a great deal of flexibility in experimenting different tools to involve persons with disabilities: e.g. public consultations, participatory fora,57 meetings, referenda. We can firmly state that the National Observatory, as a sort of consultative participatory structure (regardless its lack of compliance with Article 33 (2) CRPD) is an important starting point, and cannot be considered a point of arrival. In particular, DPOs should also be formally consulted on a stable basis by the focal point. To conclude, some cautious attempts towards a more comprehensive disability policy and the full implementation of Article 33 CRPD have been made, but we are still at the beginning and adjustments should be provided, involving all of the political institutions together with civil society.

57 On the participatory fora (meaning and methods) see L. Bobbio, Dilemmi della democrazia partecipativa (2006) 4 Democrazia e diritto 11.

CHAPTER FIVE

IMPLEMENTATION OF ARTICLE 33 CRPD IN SLOVENIA: A FEELING OF CONFUSION Aleksandra Tabaj and Cveto Uršič Introduction Slovenia was the third EU Member State to sign and to ratify the CRPD and its Optional Protocol, which is in part due to the Slovenian Presidency of the EU in the first half of 2008. Section I focuses on the Slovenian disability policy as well as its compliance with the general principles and obligations of the Convention. Section II examines the implementation of Article 33 CRPD, analysing the focal point and the independent mechanism in light of the Paris Principles. Section III sketches the role and the position of Disabled People’s Organisations (DPOs) in the monitoring of the CRPD. The conclusion examines the need to re-evaluate the role of the focal point and the independent mechanism, as well as the possible ways of strengthening the role of the DPOs. I. Ratification Process Slovenia signed the CRPD and the Optional Protocol on 30 March 2007. The official Slovenian translation of both documents was completed in 2007. The Act Ratifying the CRPD and Optional Protocol was adopted by the Slovenian Parliament on 2 April 2008. Slovenia was the third EU Member State which finished the ratification process. On 24 April 2008 the UN Permanent Mission of Slovenia deposited the documents at the UN headquarters in New York. From the very beginning, Slovenia has supported the idea that the CRPD should be adopted and it actively participated in the drafting process at three levels: at the national level, by cooperating in reviewing the development of the Convention with DPOs;1 at the European level, by 1 Ministry of Labour, Family and Social Affairs, Directorate for Persons with Disabilities, Internal documents on Convention and correspondence with Ministry of Foreign Affairs 2003–2006.

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cooperating within the European Union COHOM’s meeting and; at the UN level, by participating within the Working Group on the Convention (5–16 January 2004) as well as in the Ad Hoc Committee. Slovenian efforts were concentrated on supporting the development of views on disability and human rights for persons with disabilities, including the definition of disability and persons with disabilities in the Convention, supporting the inclusion of international cooperation in the text, gender sensitivity related insertions (women, exploitation, abuse, violence), as well as reasonable accommodation as one of the main issues in the CRPD, and, finally, supporting statistics and data collection in line with monitoring and effective implementation.2 In Slovenia, DPOs have the right to be actively involved in all matters related to disability and national authorities have the obligation to consult DPOs: Disabled persons’ organisations shall participate in creating national policies and measures for ensuring equal opportunities and equal treatment of disabled persons. National authorities shall consult disabled persons’ organisations in all matters referred to their needs.3

In accordance with this, several consultations were carried out with organisations of persons with disabilities—represented by the National Council of Disabled People’s Organisations—and persons with disabilities (representatives of the National Council of Disabled People’s Organisations) were invited to become members of the Slovenian delegation at the UN headquarters. The preparatory step for the ratification process was supported and taken very early, before signing the CRPD. A screening analysis was carried out with all the relevant ministries to establish the degree of conformity between Slovenia’s legislation and the CRPD.4 In the initial screening, the assessment was that Slovenian legislation, measures and policies are not completely in accordance with CRPD. The main issues regarded accessibility, equal recognition before the law, legal capacity, living independently, education, rehabilitation, health and statistics, as these were considered as not fulfilling the criteria. However, no reservations were

2 Ibid. 3 Act on Organisations of Persons with Disabilities, Official Gazette RS, No. 108/2002, 2002 Article No. 4. 4 Ministry of Labour, Family and Social Affairs, Directorate for Persons with Disabilities, Internal document: Draft report, prepared after the eight session of the Ad Hoc Committee.



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made during the process of signing and ratification. Slovenia ratified the CRPD and its Optional Protocol simultaneously. This preparatory step provided clear evidence that the key ministries involved in the screening process all supported the signing and ratification of the CRPD. The main drivers from the state’s point of view were the Ministry of Labour, Family and Social Affairs and the Ministry of Foreign Affairs. In the period leading up to the ratification of the CRPD, it was crucial that signatories exhibited economic stability, steady development, and generally speaking, no significant instability. At the time, Slovenia was seen as exhibiting these basic traits. Nonetheless, Slovenia was not, so to speak, a ‘perfect’ signatory state, as the screening process had revealed certain legislative lacunae. It was decided that Slovenia would be allotted the time to resolve such issues through legislation. Morever, and somewhat notably, Slovenia did not have a national human rights institution. In the meanwhile, obligations from Article 33 (2) CRPD were placed on the (Government) Council for Persons with Disabilities, within the new competencies enumerated in the Act on Equal Opportunities for Persons with Disabilities. II. Disability Policy Assessment In ensuring ‘full and effective participation and inclusion in society’5 to persons with disabilities, the legislation as explained by the Constitutional Court6 must consider the basic constitutional principle of a social state,7 according to which the state must take into account the social interests of individuals or population groups. In accordance with this principle, the state must take active measures to ensure a decent life for each individual. The principle of the social state, in its relevance to the social interests of persons with disabilities as one of the groups at risk, is defined in the Slovenian Constitution.8 This right to special protection of persons with disabilities is a positive right which commits the state to adopt an active disability policy and take various measures for the improvement of the position of persons with disabilities. The right to special protection of persons with disabilities is thus a collection of various rights of persons with

5 Article 3, CRPD. 6 Constitutional Court, Official Gazette RS, No. 122/2007, 2007. 7 Constitution, Official Gazette RS, No. 33/1991, Article 2. 8 Ibid., Article 52.

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disabilities. Among others, it overlaps with other rights that are protected by the Constitution: the right of persons with disabilities to social security, their right to personal dignity and safety and the right to inviolability of their physical and mental integrity. The Constitution of Slovenia further states9 that ‘everyone shall be guaranteed equal human rights and fundamental freedoms irrespective of national origin, race, sex, language, religion, political or other conviction, material standing, birth, education, social status, disability or any other personal circumstance’.10 With this provision, in 2004 the National Assembly explicitly named disability as one of the prohibited grounds for discrimination. In Slovenia, the rights of persons with disabilities are (therefore) a constitutionally protected category. In the period after gaining its independence, Slovenia put in place a number of national programmes and regulations to ensure formal and actual equality or equal opportunities to persons with disabilities and has since then promoted a policy of mainstreaming disability issues. The rights and obligations may be incorporated into general legislation or contained in special legislation. More than 70 acts and programmes—‘mainstream’ or ‘lex-specialis’—regulations and programmes have been adopted in the two decades since Slovenia’s independence. Among them are regulations that prohibit discrimination on the basis of disability and give persons with disabilities equal opportunities on various areas—such as the Human Rights Ombudsman Act,11 the Implementation of the Principle of Equal Treatment Act,12 the Employment Relationships Act,13 the Employment Rehabilitation and Employment of Disabled Persons Act,14 the Equal Opportunities for Persons with Disabilities Act,15 the Construction Act,16 the Act on the Use of Slovenian Sign Language,17 the Act on Organisations of Persons with Disabilities,18 the Action Programme for People with Disabilities 2007– 2013,19 etc.     9 Ibid., Article 14. 10 Amended Constitution, Official Gazette RS, No. 69/2004.   11 Human Rights Ombudsman Law, Official Gazette RS No. 71/93 and 15/94. 12 Official Gazette RS No. 50/2007, 61/2007. 13 Official Gazette RS No. 42/2002, 79/2006, 103/2007, 83/2009. 14 Official Gazette RS No. 63/2004, 72/2005, 114/2006, 87/2011. 15 Official Gazette RS No. 94/2010. 16 Official Gazette RS No. 110/2002 with amendments. 17 Official Gazette RS No. 96/2002. 18 Official Gazette RS No. 108/2002. 19 Government of the Republic of Slovenia. Action Programme for People with Disabil­ ities 2007–2013. 99th session, 30. November 2006 http://www.mddsz.gov.si/fileadmin/ mddsz.gov.si/pageuploads/dokumenti__pdf/api_07_13_en.pdf (accessed 7. May 2012) 2012.



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The Slovenian Constitution and legislation can therefore be considered ‘fundamentally adequate’ as regards fighting against discrimination.20 However, there are several problems in the implementation and the normative framework. III. Implementation of Article 33 CRPD The existence of a right does not necessarily lead to its full enjoyment in practice. The ratification of the CRPD was just the first step towards the implementation of the rights of persons with disabilities in Slovenia. The same could be said regarding the focal point, the independent mechanism and the participation of organisations of persons with disabilities. A. Focal Point and Coordination Mechanism (Article 33 (1) CRPD) In Slovenia, in accordance with Article 3 of the Act Ratifying the CRPD and Optional Protocol,21 the Ministry of Labour, Family and Social Affairs is responsible for the implementation of the CRPD and the Optional Protocol and is designated as the focal point in accordance with Article 33 (1) CRPD. This decision is based on Article 28 of the Public Administration Act which states that ‘the Ministry of Labour, Family and Social Affairs performs tasks in the fields of employment relationships and workstemming rights, employment and vocational training, family, social affairs and protection of persons with disabilities’.22 In 2005, the Directorate for Persons with Disabilities was established within the Ministry of Labour, Family and Social Affairs in accordance with the coalition contract on governmental cooperation during the 2004–2008 government’s mandate. The directorate is responsible for regulating issues concerning: – the enabling of independent life for persons with disabilities; – the co-creation of the regulations and programmes in all fields of life of persons with disabilities (mainstreaming); – the training and employment of persons with disabilities; – issues concerning disabled persons’ organisations; – rights of the deaf and hard of hearing, concerning sign language, etc. 20 M. Avbelj, National Council’s Consultation ‘The roles of persons with disabilities and the state in monitoring and implementing the Convention on the Rights of Persons with Disabilities’, Transcript, p. 28, 14. 9. 2011. 21 Act Ratifying the Convention on the Rights of Persons with Disabilities and Optional Protocol, Official Gazette RS, No. 38/2008, 2008. 22 State Administration Act, Official Gazette RS, No. 52/2002, 2002.

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With the establishment of the new Directorate for Persons with Disabilities in 2005, the Slovenian Government and Ministry of Labour, Family and Social Affairs gave a clear signal that disability issues are important and meaningful. As indicated in the theoretical part of this book, a focal point ensures a legitimate place for disability rights on the political agenda, making it visible enough to compel governments to take this issue up. On the other hand, the designation of one or more focal pointsis an administrative tool meant for rationalising and centralising all possible institutional players involved in disability rights policies.

In the performance of its tasks, the Directorate closely cooperates with, and on the regular basis consults, persons with disabilities and their representative organisations, through the National Council of Disabled People’s Organisations of Slovenia. Regular consultations are practice when preparing changes in Slovenian legislation concerning persons with disabilities. In recent years, all new legislation prepared by Directorate for Persons with Disabilities was discussed with DPOs (Act on Equal Opportunities, Act on Employment Rehabilitation for Persons with Disabilities, Act on the Use of Slovenian Sign Language). In 2008, the CRPD and the Optional Protocol in the Slovenian language were made available in both the usual and accessible formats for persons with disabilities: in easy-to-read version, in Braille and in sign language. The easy-to-read version was prepared on the basis of pictures and shortened text. The Braille version of CRPD was printed in format adapted to the needs of blind persons. An audio version of the text was also prepared. Sign language in Slovenia is an officially recognised language for deaf persons. Accordingly, the Convention was published in a video format with a sign language interpreter. The team that translated the CRPD included representatives of persons with disabilities appointed by the National Council of Disabled People’s Organisations. The recommendation that additional staff and resources would be necessary, including the employment of persons with disabilities as part of a focal point team, has not been followed so far. Until now, the focal point has not employed staff working exclusively in matters related to the CRPD. Regular staff members employed at the Directorate for Persons with Disabilities have to deal with the CRPD. The Ministry had been designated as focal point in part because of its key position in the national and international activities that took place during the negotiation of the CRPD.



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According to the Act amending the Public Administration Act, the Office for Equal Opportunities, working as a government office and covering the area of the Equal Treatment Act and the responsibilities of the Advocate of the Principle of Equality, was abolished in March 2012. The area of equal opportunities was shifted to the Ministry of Labour, Family and Social Affairs. Therefore, one of the basic work streams of the Ministry is now also the protection and promotion of the rights of persons with disabilities, although this is not addressed in its title. Despite this lacuna, it is reasonable to expect that the new competencies added to the Ministry will have positive implications for the focal point’s tasks, particularly as far as equal opportunities of persons with disabilities are concerned. That said, heretofore, there has not been a formal evaluation of the Ministry in this regard, especially since, as of this writing, the new structure had only been enacted a few months ago. The Principle of Equal Treatment Act23 is the basic and general antidiscrimination piece of legislation prohibiting discrimination. In accordance with the Act, a specialised body for prevention and elimination of discrimination, the Advocate of the Principle of Equality, was established in 2007. Its main responsibilities are: – to assist victims of discrimination; – to provide guidance and advice in order to prevent discrimination; – to inform on discrimination and equality. The Act determines common bases and premises for ensuring the equal treatment of all persons in exercising their rights and duties and implementing human rights and fundamental freedoms. The Act defines the actors that create conditions for the implementation of the principle of equal treatment, through measures within the framework of their competence, and raise awareness amongst discriminated persons and alleged offenders, as well as in society as a whole. The Advocate of the Principle of Equality provides assistance to discriminated persons through consideration of cases of alleged unequal treatment under the provisions of this Act. Human rights are also the domain of the Human Rights Ombudsman, with its jurisdiction to protect human rights and fundamental freedoms against state bodies, local self-government bodies, and bodies entrusted 23 Implementation of the Principle of Equal Treatment Act, Official Gazette RS, No. 50/2007, 61/2007, 2007.

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with public authorities. The remit of its mandate comprises individual violations of human rights and more general issues relevant to the protection of human rights and fundamental freedoms and legal security of the citizens of Slovenia. The Parliament in Slovenia works through two main bodies—the National Assembly as its main legislative instrument and the State Council as the consultative body. Within the National Assembly there is a Committee on Labour, Family, Social Policy and Disability and within the State Council of the Republic of Slovenia an independent Commi­ ssion  for Social Care, Labour, Health and the Disabled (the current president of this commission is a person with disability). These two bodies, in the area of their respective competencies, also monitor the implementation of the CRPD in Slovenian legislation and programmes. Both bodies are independent as regards the ‘focal point’. When they relate to work on disability issues, the Ministry of Labour, Family and Social Affairs is invited to their sessions if the ministry’s work is concerned. The Committee and the Commission discuss draft laws—for example in 2011 they focused on the following aspects: labour relations and rights of labour, employment and vocational training, family, social affairs and disability policy, war veterans and victims of war, and war graves. However, the minister or the deputy in charge should participate in meetings about relevant draft papers, within the competencies of the National Assembly bodies. There­ fore, the minister will also be invited to discuss the draft report on the implementation of the CRPD prepared by the ‘focal point’ and adopted by the Government, when they are briefed for discussions in the National Assembly and the State Council.24 With regard to the idea that the Parliament should also play an active role in the development and follow-up of a national disability rights policy through special committees in charge of disability rights. Slovenia follows this recommendation with the above two mentioned bodies. Beside the mandate of the focal point, with clear definition in the Act, regarding article 33 CRPD, also other actors deal with the rights of persons with disabilities, yet no direct connection with the CRPD was made with their mandate. In practice, the focal point has to cooperate with all the aforementioned bodies. In the Act Ratifying the CRPD and Optional Protocol, Slovenia did not decide to form a new coordination body responsible for the manner of 24 The report on CRPD will be approved by the Slovenian Government. Both the Committee and the Commission will be acquainted with the report.



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cooperation in the government in various fields and at various levels. The government did not specifically explain this decision in its documents for the ratification of the CRPD. The Ministry of Labour, Family and Social Affairs held the opinion that Slovenia is a small country and does not need a special coordinating body, as the Ministry itself can coordinate activities among all relevant agencies. Related to the theory that federal or decentralised States may benefit from the establishment of a coordination mechanism, Slovenia is neither federal nor a de-centralised state. Within the focal point, i.e. the Directorate for Persons with Disabilities, coordination activities within the government, its ministries and public services, when disability is concerned, are standard procedure. It is also standard practice that civil society is invited to express its views on ongoing questions regarding disability. Many organisations are active, such as the Social Chamber of Slovenia, the Slovenian Social Protection Institute, the Alliance of Centres of Social Work, the Alliance of Disability Enterprises and the Employment centres, etc. However, the final decision always rests with the ministries. Considering the fact that so many different institutions are sharing competencies not only for disability, but also human rights and antidiscrimination issues, and considering the very complex legislation, it would be reasonable to have in Slovenia a coordination mechanism with a clear mission. Such a coordination mechanism could formalise the participation of civil society as well as the implementation of the Convention. This is especially the case since it appears that during the period 2008–2012, nothing more than the initial activities to promote the Convention were done. On a final note regarding the focal point, its tasks were in the years 2008–12 predominantly connected with drafting the initial report on the implementation of the CRPD in Slovenia. The initial report will be discussed in public in Spring 2013 and it is expected to be sent to the CRPD Committee in the end of 2013. B. Independent Mechanism (Article 33 (2) CRPD) In comparison with other EU Member States, no national human rights institution exists in Slovenia. Therefore, a new human rights mechanism was needed to fulfil the obligations under Article 33 (2) CRPD. In 2010, the new legislation on equal opportunities for persons with disabilities was adopted with the aim to create equal opportunities and to ban discrimination. Among other aims the Slovenian Equal Opportunities for Persons

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with Disabilities Act25 resolves the issue of independent mechanism under Article 33 (2) CRPD through the Council for Persons with Disabilities. The Act establishes the Council as an independent mechanism,26 and gives the Council the task ‘to promote and monitor the implementation of the Act Ratifying the CRPD and Optional Protocol.’27 The Council will begin its work in 2013. Till then the Government Council for Persons with Disabilities continues to operate. The Government Council was created in 1996 by a Decision of the Government. The Government Council’s tasks are as follows: – to take care that disabled persons are properly addressed in all relevant state programmes; – to assess the position of disabled persons and implementation of disability programmes; – to coordinate new programmes for disabled persons; – to give professional opinion to the new legislation; – to give incentives and recommendations to the government, in view with accepted disability policy; – to give opinion to the reports prepared by ministries; – to promote work of disability and humanitarian organisations; – to promote international cooperation; – to evaluate and assess programmes for persons with disabilities; – to assess planning and implementation of national policy and annual reports; – to organise consultations, seminars and other forms of meetings related to disability issues; – to give incentives for educational and training programmes.28 Currently the Government Council has fifteen members, elected from the government, DPOs, public bodies and professional organisations. The work of the body is mainly limited to giving opinion on new legislation and proposing changes to present legislation. During 2008–2012, the Government Council prepared several sessions with DPOs and special events on the International Day of Persons with Disabilities (3 December). 25 Equal Opportunities for Persons with Disabilities Act, Official Gazette, No. 94/2010, 2010. 26 Ibid., Article 28. 27 Ibid. 28 Decision on Establishing and Tasks of the Government Council for Persons with Disabilities, Official Gazette RS, No. 35/1996, 1996.



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The new Council for Persons with Disabilities will start working in September 2013, when the mandate of the present Government Council for Persons with Disabilities expires. The primary tasks of the new Council, established by the Equal Opportunities for Persons with Disabilities Act, include the following: – to monitor the development and implementation of programmes in the field of protection of persons with disabilities and to provide initiatives for said programmes’ development and implementation; – to deliver opinions to proposers of laws and regulations applicable to the protection of persons with disabilities during public discussion; – to participate in drawing up reports on the implementation of national programmes and provide opinion thereon; – to provide initiatives, proposals and recommendations concerning the protection of persons with disabilities; – to facilitate cooperation among ministries, professional institutions and organisations of persons with disabilities; – to promote and monitor the implementation of the Act Ratifying the CRPD and Optional Protocol; – to carry out other tasks in accordance with the adopted rules of operation of the Council.29 The Act also provides that ‘professional, administrative and technical work for the Council is performed by the Ministry in charge of protection of persons with disabilities. The Council is financed from the state budget’. One of the tasks of the Council concerns facilitation of the cooperation among ministries, professional institutions and organisations of persons with disabilities, which is an obligation from Article 33 (1) related to the coordination mechanism. As explained in the theoretical part of the book, an independent mechanism should cover three functions: promotion, protection and monitoring. What is obviously missing in the Council is the protection function. Until the establishment of the new Council for Persons with Disabilities in 2013, its tasks will be performed by the existing Government Council for Persons with Disabilities. So far, the Government Council has operated as a central point in the structured dialogue between DPOs, professional 29 Ibid., Article 28.

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institutions and state bodies. The difference between ‘old’ Government Council for Persons with Disabilities and new coming Council for Persons with Disabilities lies in the content of the tasks and the number of the elected members. The Government Council is a professional and consultative body of the Government of the Republic of Slovenia, offering professional support in governmental decisions on disability issues. Professional and administrative tasks for the Council are carried out by the Ministry of Labour, Family and Social Affairs. Members of the Government Council were appointed for a period of four years on 23 April 2009, on the basis of nominations from ministries, public institutions, professional associations and DPOs. In the explanatory note to the proposal of the Act on the Equal Opportunities for Persons with Disabilities, the legislator did not give an exact rationale for its decision to give the Government Council for Persons with Disabilities the role of independent mechanism. The document only states that the establishment of the Council aims to implement Article 33 CRPD. It should be noted though that the decision was supported by representatives of ministries, public institutions, professional associations and DPOs cooperating in the task group for the preparation of the Act. The working group, consisting of representatives of DPOs, professional institutions and ministry of labour, supported this option. There were also no comments on Article 28 in the public discussion on the draft Act. It would, however, have received more attention had it been written from the start in the form in which it was eventually adopted. The National Assembly adopted a version of the text quite different from the one formed by the task group and approved by the government. One key change is the appointment of representatives of persons with disabilities. It is likely that more discussion on Article 33 CRPD would have taken place and perhaps more Paris-Principle-oriented status and functioning would have been achieved if persons with disabilities and professional public had been familiar with solutions in other countries that had ratified the CRPD and appointed independent mechanisms. The Council is defined as an independent mechanism, established by the Act and in line with the agreement of the representatives of DPOs, institutions in the disability area and the Slovenian Government. It is a tripartite body in which each party is represented by seven members, with a four years’ mandate. All members are equal. One third of the Council’s representatives are appointed from representative DPOs and other DPOs. The difference about representative DPOs and other DPOs is defined in



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the Act on Organisations of Persons with Disabilities adopted in 2002. Representative DPOs are defined through their representativeness at the state and international level, whereas all other DPOs are those who do not meet these criteria. The second third of the Council’s representatives are appointed mainly from (government) public institutions, service providers and professional associations which operate under these ministries: the National Health Insurance, the National Pension and Disability Insurance, the Employment Service of Slovenia, the Association of providers of employment rehabilitation services, the Association of organisations for training persons with special needs, the University Rehabilitation Institute and the Institute for Social Protection. Five of these institutions are public (government) institutions; all except two are associations of service providers. The managers of all these public institutions are approved by competent ministers of the government. The last third of the Council’s representatives are appointed from ministries (labour, health, education, higher education, culture, finance and environment). They have full membership, as does any other representative in the Council. Furthermore, during the sessions it is clearly seen that they play a coordination role within the Council and not just advisory one. In the Act,30 the independent role of the Council is defined. According to the Paris Principles, two dominant characteristics of national human rights institutions are independence and pluralism.31 Regarding independence, representatives of the ministries may be included but they must only participate in an advisory capacity, which is not the case with the present Government Council, nor with the future Council. The Paris principles also require sufficient funding and delineated budgets. Regarding its budget, the Council operates under the umbrella of the Ministry of Labour, Family and Social Affairs. There is no separate funding, as required by the Paris Principles. The Council fulfils its duties for the CRPD, and also other issues in line with its tasks, within the annual budget of Directorate for Persons with Disabilities. The Paris Principles specify that various elements are to be included in order to ensure pluralism—NGOs, trade unions, social and professional organisations, trends in philosophical or religious thought, universities, 30 Equal Opportunities for Persons with Disabilities Act, Official Gazette, RS No. 94/2010, 2010. 31 G. de Beco, Study on the Implementation of Article 33 of the UN Convention on the rights of persons with Disabilities in Europe, Office of the High Commissioner of Human Rights (OHCHR) Regional Office for Europe.

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parliament, and governmental departments (in an advisory capacity). The composition of the new Council includes seven representatives of the Government, seven of public institutions, service providers and professional associations and seven of DPOs. Parties not included under the Paris Principles are trade unions, trends in philosophical or religious thought, universities and parliament. Government representatives do not operate in an advisory capacity; they hold a full membership position. Last but not least, the Council works as a consultative body in all matters concerning disability; rather, it operates more akin to a coordination mechanism than as an independent mechanism. As mentioned above, officially there is no coordination mechanism in Slovenia; instead, the Council appears to have taken on a coordination task. Persons with disabilities cited the lack of representation as the Council for Persons with Disabilities’ main deficiency, and stressed that this is not in compliance with provisions enumerated in the Act on Organisations of Persons with Disabilities and the role of the National Council of Disabled People’s Organisations of Slovenia.32 The apparent deficiency is important and presents the question of who is the legitimate voice of persons with disabilities and who is not. Often, the differences of opinion between DPOs appears to be a manifestation of an ongoing competition over resources between new and old organisations; other times, it is simple misinterpretation of each other’s positions. The Ministry of Labour, Family and Social Affairs’s Directorate for Persons with Disabilities, in the preparatory step of the Equal Oppor­tu­ni­ ties for Persons with Disabilities Act, launched a consultation with DPOs. Article 2833 was subsequently subject to many critiques upon its adoption. Consider the following statement from one consultation o­ rganised by the National Council of Disabled People’s Organisations in particular:34 by evaluation of the Human Rights Ombudsman and disability ­organisations the suggested structure of the new council does not ensure independence. 32 Cf. Boris Šuštaršič, President of the National Council of Disabled People’s Organ­ isations during the 14. 9. 2011 Consultation on ‘The roles of persons with disabilities and the state in monitoring and implementing the Convention on the Rights of Persons with Disabilities’, the National Council of Disabled People’s Organisations, 14. 9. 2011, Conclusions and transcript. 33 Equal Opportunities for Persons with Disabilities Act, Official Gazette, RS No. 94/2010, 2010. 34 Slovenian National Council, 40th meeting, 14. 9. 2011 Consultation ‘The roles of persons with disabilities and the state in monitoring and implementing the Convention on the Rights of Persons with Disabilities’, 14. 9. 2011, Conclusions and transcript.



slovenia: a feeling of confusion163 The independence is prevented due to membership of representatives of government organisations, dependent public financing, as well as due to the following facts: unavailability of funds, no authority of protection function and no mechanisms of coercion or sanctions.

The conclusions of the consultations include several proposals for the independent mechanism in Slovenia. The authors feel that they should highlight one proposal in particular, namely, that the Human Rights Ombudsman could be given additional competencies regarding its protection function. However, due to the existing limited competencies of the Ombudsman, a wider authority seems doubtful at this stage. In the same vein, it was proposed that ‘for improved monitoring of the implementation of the CRPD, regarding the Council for Persons with Disabilities, government representatives should participate only in an advisory capacity’.35 The authors would like to support the proposal; they hope that, within the very first amendments of the Equal Opportunities for Persons with Disabilities Act, this proposal will be adopted. The conclusions reached by the National Council of Disabled People’s Organisations of Slovenia take the discussion on an independent mechanism in the right direction. It needs to be explained, though, that the issue of independent mechanisms, especially for monitoring the fight against discrimination, is problematic not only in the field of disability but also in other fields for instance, children’s rights. The Annual Report on the activities of the Advocate of the Principle of Equality gives evidence of this.36 The Advocate emphasised that ‘in Slovenia there is no comprehensive system for solving key problems and taking multi-level measures against discrimination. Key shortcomings are reflected in the following’: – the partial incongruence of legislation with assumed international obligations; – the absence of an efficient protection system; –  the deficient system for independent support to victims of discrimination; – in non-implementation of legislation, mostly in view of effective, appropriate and deterrent sanctioning;

35 Ibid. 36 Advocate of the Principle of Equality Annual Report 2010, www.zagovornik.net/ uploads/media/zagovornik_lp_2010.pdf (accessed 28. January 2012), 2012.

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– the absence of efficient, congruent policies and political leadership and role-models, which is related to an inefficient institutional system for promotion, adoption and implementation of policies; – the underestimation or even denial of the problem of discrimination and lack of political will to fight against it.37 In the same report, the Advocate gives reasons for a necessary new comprehensive institutional solution:38 – the efficient protection of the right to equal treatment; – meeting international legal requirements for ensuring efficient legal protection and active anti-discrimination policy; – the principle of user-friendly and transparent administration; – rational and efficient work as regards administration; – finding the highest possible synergies between those bodies tasked with protecting disabled persons against discrimination and those tasked with implementation of preventive and curative policies.39 The last note is interesting with respect to the coordination mechanism under Article 33 (1). As explained above, in Slovenia no coordination mechanism has been designated. Yet, the Advocate made very clear that such coordination mechanism would be useful. The analysis of the legal provision on the competencies, structure and financing of the Council for Persons with Disabilities during discussions in the National Council supports the conclusions that the legislator did not completely follow the Paris Principles. Hence, making the proper changes to comply with the Paris Principles is an absolute necessity. Professional opinion will be needed, especially from the Human Rights Ombudsman, the Advocate of the Principle of Equality and from other independent mechanisms under Article 33 (2) CRPD in the EU. Article 33 (2) CRPD requires that an independent mechanism—in the case of Slovenia, the Council—should also have a complaint procedure for violations of the CRPD, as well as a way to assist persons with disabilities including acting in their name before the court and not only promote and monitor the implementation of the CRPD by providing advice to the government, in sum, what the authors see as the Council’s crucial deficiencies. 37 Ibid. 38 Ibid. 39 Ibid., p. 8.



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Therefore, the structure and the mandate of the Council for Persons with Disabilities of Slovenia is not fully adequate for performing the task of promoting, protecting and monitoring the implementation of the CRPD, while its independence, financing, representation and competencies are not in line with the Paris Principles and competencies according to Article 33 (2) CRPD. C. Organisations of Persons with Disabilities (Article 33 (3) CRPD) Slovenia’s DPOs can claim to have nearly a 100-year tradition. The first DPOs were established soon after the First World War (e.g. in 1920, the Association of the Blind in Ljubljana; in 1931, the Association of the Deaf). In 2011, there were 19 DPOs with the status of a representative organisation, and 229 DPOs operating at the local level.40 Nearly all the representative organisations exist under the umbrella organisation, the Slovenian National Council of Disabled People’s Organisations. Therefore, the umbrella organisation can be said to represent more than 106,000 persons with disabilities. The goal of the National Council is to coordinate the interests of all persons with disabilities in the country and to represent them in the dialogue with professional associations, national authorities, public institutions and other public representatives. In 2002, the Act on Organisations of Persons with Disabilities was passed to regulate the position of DPOs. The Act introduced the obligation of state authorities to consult DPOs in all matters related to disability. In the Act, several DPOs are covered: local level DPOs, representative DPOs and the National Council of Disabled People’s Organisations which unites them at the national level. DPOs carry out programmes that cover those needs of persons with disabilities that are not covered by the state. The programmes are financed by the Foundation for the Financing of Disability and Humanitarian Organisations (the Foundation was established by the state for the purpose of financing or co-financing socially beneficial activities). The Foundation finances over 330 different programmes at national and local levels. These are mostly programmes for rehabilitation and health main­ tenance, psychosocial assistance and technical aids helping persons with disabilities by compensating the high level of limitation in perform­ ing  everyday tasks. Also, it finances programmes for social events, for 40 Register of Organisations of Persons with Disabilities, http://www.mddsz.gov.si/si/ delovna_podrocja/invalidi_vzv/invalidske_organizacije/ (accessed: 7 May 2012), 2012.

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r­ ecreational and sporting activities, and for leisure activities and specific and additional education to support people with disabilities concerning their social inclusion and equal opportunities. The Act on Organisations of Persons with Disabilities41 on the engagement to consult DPOs, provides that DPOs should participate in shaping national policies and measures for providing equal opportunities and equal treatment of persons with disabilities. National authorities are to consult DPOs on all matters from the previous paragraph. Furthermore, DPOs roles are set up: – to define interests and defend the needs of persons with disabilities on all levels concerning the life of disabled persons; – to contribute to the awareness of the general public and have an impact on changes in favour of disabled persons; – to plan, organise and deliver programmes that enable active participation to groups of persons with disabilities; – to contribute to the removal of barriers and support the leading of a more independent life.42 It is also supposed to be a practice that in all issues relating to CRPD, that DPOs are informed about all matters through the focal point, i.e. the Ministry of Labour, Family and Social Affairs. So far, this has consisted of ad hoc meetings, wherein DPOs were involved as the members of Slovenian delegation in the Ad Hoc Committee, as members of the team that prepared the translation of the CRPD and its Optional Protocol and in the promotion campaign as well as in the preparation of the Slovenian EU Presidency Conference. Discussions on draft Acts take place during the sessions of the Government Council for Persons with Disabilities. We mentioned before that this coordination role of the independent mechanism is not in line with three main tasks—promotion, protection and monitoring. Yet, the government and ministries consistently respect the provision of con­ sulting the representatives of disability organisations on all important issues, although it is not the obligation of the state to do more than that. The authors have however noticed that the ultimate decisions taken by the government and ministries are not always the ones demanded by 41 Act on Organisations of Persons with Disabilities, Official Gazette RS, No. 108/2002, 2002, Article 4. 42 Ibid., Article 10.



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the DPOs. Moreover, in one of the Ombudsman deputy speeches in the State Council, it was said that this right of the DPOs was not always respected, for example the case of legislation changes in 2011 which would redistribute the financial resources for DPOs in the framework of the Foundation for financing humanitarian and DPOs. Representatives of persons with disabilities thus cooperate in different administrative bodies that are responsible for ensuring the quality of life for persons with disabilities, such as the Health Insurance Institute of Slovenia, the Institute of Pension and Disability Insurance of Slovenia, the Council of the Foundation for Financing Disability and Humanitarian Organisations, the Board for issues of disability at the Council of Radio and Television Broadcasting of Slovenia, and the Social Chamber of Slovenia. Persons with disabilities actively cooperate in the committee for monitoring the implementation of the Action Programme for Persons with Disabilities and so on. Additionally, representatives of persons with disabilities are invited to cooperate in the formation of systemic laws in the area of protection of persons with disabilities and in the preparation for the implementation of measures of the national disability policy. The role of coordinator is held by the National Council of Act on Organisations of Persons with Disabil­ ities. According to the Act the National Council shall bring together the interests of all people with disabilities in the country, taking account of the respective autonomy of each organisation, and represent them in dialogue between disabled people’s organisations and in dialogue with professional associations, national authorities, public institutions and other public groups. Additionally, the National Council shall propose, in line with regulations, common representatives of disabled persons for the authorities of state and other public institutions.43

It can be concluded that the implementation of Article 33 (3) CRPD is provided ‘de iure’. Formally, representatives of persons with disabilities are included in the Government Council for Persons with Disabilities. The National Council of Disabled People’s Organisations and representative DPOs are invited to cooperate in the preparation of national regulations and programmes. Persons with disabilities are invited to the meetings of key working bodies of the National Assembly and National Council. However, the ‘de facto’ implementation of Article 33 (3) CRPD will require 43 Act on Organisations of Persons with Disabilities, Official Gazette RS, No. 108/2002, 2002, Article 25.

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much more involvement. Despite persons with disabilities being formally present in the key bodies, their actual power is questionable. At a National Council discussion, they emphasised that ‘the saying ‘nothing about the disabled without them’, has been abused so often that persons with disabilities are frequently disappointed. We often speak of the preschool of legal acrobatics when this meaning is explained to us’.44 Conclusion Slovenia appointed a focal point within a government ministry, in accordance with Article 33 (1) CRPD. No coordination mechanism was designated, although there are different institutions covering legislation, human rights and equal opportunities at present. The independent mechanism, the Council for Persons with Disabilities, was created by law, which is in line with the Paris Principles. However, the independent mechanism should be working outside of the government, which is not the case at the moment. Moreover, this entity should also have independent funding for its work. It should take a more pluralistic approach. According to the Paris Principles, the independent mechanism should take into account elements such as trade unions, nongovernmental organisations responsible for human rights and efforts to combat discrimination, trends in philosophical or religious thoughts, universities and qualified experts, parliament, and government departments, but only in an advisory capacity. In fact, representatives of the Council are predominantly appointed from government ministries and other public institutions, controlled by the ministries. Moreover, concerning its tasks, the independent mechanism serves confusingly more as a coordination mechanism. Also, the independent mechanism has competencies on promotion and monitoring, but not on protection of the implementation of the CRPD, which is one of three vital functions of independent mechanisms. Additionally and crucially, the structure of the independent mechanism does not follow the Slovenian Act on DPOs: this is one of the main concerns of DPOs. DPOs’ cooperation in Slovenia is based on the Disabled Persons Organisations Act. This is a rule, and the government should 44 Š. Kušar, Consultation ‘The roles of persons with disabilities and the state in monitoring and implementing the Convention on the Rights of Persons with Disabilities’, the National Council of Disabled People’s Organisations, 14. 9. 2011, Conclusions and transcript, p.28.



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respect it, while in practice this is not always the case. It is also often the case that Government decisions taken are not in line with DPOs recommendations. In conclusion, since the CRPD’s ratification in 2008, it appears that not all solutions in Slovenia conform with the State obligations as far as Article 33 CRPD is concerned. It does not mean that this could not be changed in favour of more appropriate solutions in the future.

CHAPTER SIX

IMPLEMENTATION OF ARTICLE 33 CRPD IN AUSTRIA: AN EVOLVING SENSE OF ACTION Marianne Schulze1 Introduction Austria was fast in signing and ratifying the CRPD. The government’s initial conclusion was that there was no need for significant action to comply with the treaty, assuming that most regulations and policies were in fact in sync with the obligations, the exception being the creation of a monitoring entity. Following a cursory overview of Austria’s involvement in the negotiation process of the Convention—heightened by its presidency of the European Union in the first half of 2006—this text sketches policy regarding persons with disabilities in Austria. The establishment of focal points and a coordination mechanism, respectively, are explained as is the newly created federal monitoring mechanism, which is situated in a vast landscape of Ombudsmen and other monitoring entities. The important role of civil society in the monitoring process is recognised in a separate sub-section. The work of the new entity increased awareness of the implications of the Convention among officials, creating an evolving sense of action. I. Negotiation Process The Austrian engagement in the negotiation process of the Convention on the Rights of Persons with Disabilities (CRPD) was in no small part spurred by the EU Presidency it assumed in the first half of 2006, propelling the Austrian delegation into having to cover the longest of the Ad Hoc Committee’s sessions on behalf of the European Union: three weeks. While the task was discharged formidably by one of the smallest teams 1 I would like to acknowledge the generous and most helpful support provided by Maya Sabatello in compiling this text.

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among the European Union delegations, a telling fact was the absence of a representative of persons with disabilities. Contrary to other EU delegations, that seemed to go out of their way in ensuring the participation of at least one person with disabilities, not to speak of governments that vested the delegation’s lead with representatives of non-governmental organisations (NGOs), Austria’s delegation was left wanting.2 The delegation was headed by the Ministry of Foreign Affairs and the delegation’s experts heralded from the Ministry of Social Affairs’ small international department only. Representation of NGOs and Disabled People’s Organisations (DPOs), respectively from Austria remained insignificant, the past-president of Inclusion International and a representative of the Austrian development organisation Light for the World3 were the only civil society representatives on the ground; the latter supporting a concerted effort by the International Disability and Development Consortium (IDDC) to push for a stand-alone provision on international cooperation. II. Disability Policy A well-established set of rules and regulations governs policy about persons with disabilities in Austria, which is split along the lines of the country’s federalist structure. Particularly but not confined to the areas of social benefits and education the overlap of responsibilities creates significant challenges, most obviously for adjustment processes. Notably, Austrian disability policy is not rights based and is largely framed by a welfare-state approach guided by a medical model of disability. 19.000 persons with disabilities are said to be ‘working’ in sheltered workshops, the number of housing facilities—i.e. institutions—cannot be determined exactly. Similar statistics challenges apply to the realm of guardianship: there are estimates of 60.000–90.000 cases.4 Inclusion of persons with disabilities in primary education is varied, one region, Reutte/Tyrol, has divested special education institutions and Styria has a high-degree of integration classes but the education system has yet to embrace and be based on inclusive education.

2 The effort focused on one representative fell through due to immigration requirements. 3 The representative of Light for the World was this author. 4 Compare, Recommendation Monitoring Committee, 24 May 2012, Now I’m Going To Decide—Supported Decision Making, available at: http://www.monitoringausschuss.at.



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Reluctance to involve and include persons with disabilities is high, which can be attributed to a range of factors. The contemporary image of persons with disabilities is largely defined through a charity show aired around Christmas time, which features persons with disabilities as pitiful and in need of alms, changes in perspective and framing have been slow. The aftermath of National Socialism is palpable in the inadequate discussion of ‘euthanasia’ and related programs, which targeted, persecuted and frequently led to the killing of persons with disabilities. While the historic facts have been documented, the image framed by Nazi policies was never substantially discussed or scrutinised by the public. War veterans, however, have had significant impact on disability discourse and policy through various organisations. The sections of the main decree on disability assessment, concerning veterans were only recently voided. As a follow-up to its first States Party Report, the government, under the leadership of the Federal Ministry of Social Affairs, developed a national action plan, adopted in July 2012, that provides for measures to be implemented by 2020. In fact, the elaboration of the action plan has been the mainstay of the Ministry’s work in relation to CRPD implementation. III. Road towards Ratification A new government had only started its work in Austria a few days before the United Nations General Assembly adopted the CRPD on December 13, 2006. The discussion about ratification possibilities was largely based on the initiative of Light for the World, that having been involved on the ground and succeeded in enshrining a stand-alone provision on international development, was keen to enable national implementation. Calling on the international development speakers of the various parliamentary parties, Light for the World was instrumental in putting together an informal background meeting held at the Parliament three days prior to the opening for signature of the CRPD, i.e. on 27 March 2007. The angle was thus set by foreign relations and international development considerations and far less by genuine human rights or social policy concerns, respectively. Present were representatives from the various political parties, the Ministry of Foreign Affairs, the Ministry of Justice, and the Ministry of Social Affairs. Austrian governments since 1945 have ratified most international human rights treaties in good time, largely holding that compliance was

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given prior to ratification and stating that reservations were a mere formality to protect sui generis regulations. The exception to this rule is the European Convention on Human Rights (ECHR). Following initial confusion about its position within the hierarchy of laws, the ECHR was adopted with qualified majority and thus made a ‘constitutional law’. Subsequently, judgments by the European Court of Human Rights in Strasbourg have had significant impact on legal interpretation as well as legal reform. All United Nations core human rights conventions have been ratified with a constitutional reservation. According to Article 50 of the Constitu­ tional Act no international treaty can be directly applied, unless the content is published as a law or enshrined as a legal provision, respectively. Against this backdrop it comes as little surprise that the Austrian government was not only fast in signing the CRPD but even more so put the treaty to the Parliament with an explanatory note, which states that there was ‘no need for action’, i.e. Austrian laws were in compliance with the treaty. The exception to this stance was the monitoring mechanism as the implications of the Paris Principles were fast understood to possibly require some action. Thus, ratification discussions quickly narrowed down to the requirement of a national monitoring mechanism, as the thrust of the CRPD was deemed implemented.5 In other words, the assessment was largely made on the impression that the CRPD did not create any ‘new’ rights and that Austrian compliance with preceding UN human rights treaties was a given. With the assumption that the angle and principles of accessibility, inclusion and independent living did not require significant changes, the smooth ratification, with limited to no changes, was approved. The drivers for ratification from the development realm did not feel competent to review the substance of national implementation as this is clearly outside their expertise in international cooperation. The pertinent provisions on international cooperation, however, were speedily scrutinised for lack of compliance of mainstream programmes with accessibility and inclusion requirements, respectively. The Ministry of Social Affairs and the Ministry of European and International Affairs jointly prepared the documents, instigating the ratification process. The preparatory materials were circulated among the pertinent ministries but no substantial objections were raised.

5 Explanatory Notes (Erläuternde Bemerkungen), BGBl III 155/2008.



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The discussion in Parliament took place on 7 July 2008 in the National Council and two weeks later in the Federal Council of the Parliament. The ratification documents were deposited on 26 September 2008 and the CRPD as well as the Optional Protocol (OP-CRPD) entered into force on 26 October 2008 with consecutive publication in the public law gazette: BGBl. III 155/2008. An amendment to the Federal Disability Act establishing the Monitor­ ing Committee to comply with Article 33 (2) CRPD—National Implemen­ tation and Monitoring—was briefly discussed with representatives of civil society. Notably representatives of the independent living movement and the international development field seemed the most engaged. The details of this discussion will be set out below. The amendment passed in time for ratification and no objections were raised.6 The only other initiative related to ratification was the translation of the English treaty into German. Traditionally, the German speaking countries—Austria, Germany, Switzerland, Luxembourg and Liechtenstein— share the burden of translation. Objections, particularly raised by German DPOs led to a ‘shadow translation’, which highlights the impact of different terms for words, such as inclusion, accessibility, and independent living.7 IV. Article 33 CRPD in Austria Defying the original conclusion that Austria was principally complying with the CRPD and largely ignoring the internal reservation on implementation8 the federal government is now taking steps cognisant of necessary changes. While the cross-cutting nature of the CRPD has still not dawned on all ministries, there is an increasing awareness about potential gaps and the impact of the treaty. Also, almost four years after ratification, the provinces appreciate that they need to review their legislation and policies, accordingly. A main trigger for this sea-change and the emergence of a sense of action was the compilation of the first State Party Report to the CRPD Committee in line with Article 35. The gathering of responses and particularly the feedback from civil society turned the Report into a sketch board for charting some action.9 6 Compare BGBl I 109/2008 (8 August 2008). 7 Netzwerk Artikel 3 e.V., Schattenübersetzung. 8 See above on Article 50, Federal Constitutional Act. 9 See above on development of a national action plan, July 2012.

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marianne schulze A. Focal Points and Coordination Mechanism (Article 33 (1) CRPD)

The discussion of a focal point and coordination mechanism was kept under wraps, the Ministry of Social Affairs made it known—in presentations and written statements—that it had been designated, possibly having done so itself, as the focal point as well as the coordination mechanism, respectively. The CRPD’s intention that focal points be established throughout government departments was not discussed in its full breadth and thus no additional focal points were nominated. As part of the evolving of action it appears that the previously designated coordinators for human rights in the line ministries—which essentially serve as focal points for human rights issues generally—could be assigned as focal points under Article 33 (1) CRPD. The Ministry of Social Affairs has historically been the main policy driver in the realm of persons with disabilities, thus it took on the CRPD as the first and primary responder. Consequently, it serves as the coordination mechanism. As will be discussed below, the full grasp of the CRPD’s institutional implications was slow. With a primary understanding of the CRPD as being about ‘disability’ (in a classic/historic sense) rather than ‘human rights’, there was no consideration of moving the coordination to the government’s main human rights coordination mechanism in the Chancellor’s office. Obviously, the coordination function, particularly the aspect of applying the CRPD cross-cuttingly, would have better fit there. The designation of focal points and establishment of coordination mechanism has yet to take place in the provinces (Länder), which have largely taken the monitoring mechanism as their entry point and are only slowly discovering potential obligations under the CRPD. B. Independent Mechanism (Article 33 (2) CRPD) Austria has an expansive string of institutions, which cover varying and partly overlapping aspects of human rights promotion and protection. There are, among others, Ombudsman offices for children and youth, patients, persons with disabilities, advocates for institutional residents and an Equality Commission as well as an advocacy office for equality. The rather confusing nature of this set-up has been scrutinised by the Council of Europe’s Human Rights Commissioner as ‘apparent complexity’, which makes it ‘difficult even for experts to identify the competent complaints mechanism’,10 The sentiment was previously expressed,



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among others, by the Independent Expert in the Field of Cultural Rights, Farida Shaheed.11 1. Institutional Landscape The most important human rights institution is the Ombudsman’s Office (Volksanwaltschaft) under the leadership of three former politicians with an alleged track record in the realm of human rights. Mainly in charge of complaints related to administrative and bureaucratic decisions at the Federal level, the Office has established itself as a key institution. This is also due to a high profile format on television featuring individual cases. The comparatively narrow mandate of the Office, which has yet to allow for full compliance with the Paris Principles, has recently undergone substantial changes ahead of Austria’s ratification of Optional Protocol to the UN Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT), whereby the national preventive mechanism is established within the Office. At the time of ratification of the CRPD the intention to ratify OPCAT had already been flagged. However, the potential addition of the monitoring requirements under CRPD was flatly rejected and the specific monitoring requirements in pursuit of protecting persons with disabilities against violence—Article 16 (3)—were not yet fully appreciated. The framework nature of the monitoring requirements under Article 33 was not understood at the time and the Ombudsman’s Office thus did not wish to take on any monitoring obligations in line with said provision. It clearly could have expanded its protection mandate to that effect. As of 1 July 2012 the Ombudsman’s Office is specifically tasked with preventing violence against persons with disabilities (Article 16 (3)) and has started a process of engagement on the CRPD, accordingly. Among the plethora of entities, which cover parts of the human rights protection agenda, an equal opportunities office is charged with resolving disputes over unequal treatment (Gleichbehandlungsanwaltschaft), based on the European Union’s anti-discrimination directives. In addition to its Commissions for Equal Treatment (Gleichbehandlungskommissionen)

10 Report by Nils Muizňieks following the visit to Austria 4–6 June 2012, CommDH(2012)28, 11 September 2012, para. 12. 11 Report by the Independent Expert in the Field of Cultural Rights, A/HRC/20/26/ Add.1, 10 April 2012, paras 35–42; see also the suggestions made a spart of the Universal Periodic Review A/HRC/17/8 (18 March 2011), paras 93.14 to 92.20.

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there is a Data Protection Commission (Datenschutzkommission), Children and Juvenile Ombuds Offices (Kinder- und Jugendanwälte), and others. The Human Rights Council (Menschenrechtsbeirat) was broadly tasked with counseling the Minister for the Interior in relation to potential police action depriving persons from liberty, it was recently abolished after a little more than a decade of work. The ratification of OPCAT significantly revamps the Council’s mandate and a necessitates a move to the Ombudsman’s Office. The Ombudsman for Disabilities (Bundesbehindertenanwalt), established in 2006 has a specific mandate in addressing individual cases of discrimination in the realm of federal administration based on impairment and disability, respectively. The Ombudsman is to review existing and draft legislation as well as make proposals on improving laws to ensure equality of opportunities for persons with disabilities. Not institutionally connected but part of the same administrative entity, the Ombudsman’s Office is an arbitration and mediation service, which offers assistance for individuals who have been discriminated. 2. Monitoring Committee The Monitoring Committee is created to ‘discharge the monitoring of the Convention on the Rights of Persons with Disabilities’.12 The Committee is tucked into the Federal Disability Council (Bundesbehindertenbeirat), an advisory board to the Minister for Social Affairs. Established in 2001, its core function is to advise the Minister for Social Affairs on all matters related to persons with disabilities. Members of the Council include pertinent—but not all—federal ministries, the Social Partners, the umbrella DPO Austrian national Council of Disabled Persons (ÖAR) and other representatives of persons with disabilities as well as the Members of Parliament who are spokespersons of their respective political parties on disability matters. The Committee is only in charge of federal matters and the provinces (Länder) are to determine their own regime of monitoring.13 The setup corresponds with the Federalist principle of Austria’s Constitution whereby the provinces have discretion and sovereignty in their own affairs. The provinces’ zest for implementing the CRPD only developed in the wake of the States Party Report, particularly the subsequent national 12 Section 13, Federal Disability Act. 13 Compare Section 13 para. 8, Federal Disability Act.



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action plan. The discussion around implementing Article 33 (3) CRPD has arrived in all provincial governments but so far14 only Vienna and Carinthia have designated monitoring bodies. The Carinthian model establishes an Advisory Council, which lacks independence as well as monetary autonomy. In Vienna, the Ombud for the City’s civil servants was tasked with establishing a monitoring entity. The law foresees an advisory board largely composed of DPO and NGO representatives, all of whom are nominated by the umbrella for Viennese DPOs (Interessenvertretung). While aspiring to become a full-fledged committee and modeling the Paris Principles to some extent, the ‘committee members’ were swiftly advised that they would not be given more than a meager opportunity to advise and that there would be no binding force to their recommendations. The discussion between the social affairs department of the city of Vienna and the umbrella organisation has been going strong since October 2011 and remains unresolved.15 3. Membership and Composition The members of the federal Monitoring Committee are to be nominated by the umbrella organisation (ÖAR) and appointed by the Minister of Social Affairs. Four of the members are to herald from organisations of persons with disabilities and one member each from academia, a general human rights organisation and a development organisation. A deputy is to be nominated for each of the seven members. All members are to serve in their individual capacity and are by law independent. Representatives of the Ministry of Social Affairs as well as, any other ministry called upon for consultation by the Committee, are to partake in meetings, however, without a right to vote. Cognisant of Article 33 (3) CRPD, the Ministry of Social Affairs was keen to maximise the representation of civil society. Given that the Monitoring Committee is part of a larger governmental entity, the Federal Disability Council, it was apparently deemed appropriate to assign the overwhelming majority, that is all the votes, to representatives of civil society. The composition itself mirrors the debate around ratification. The majority of members—four—are to represent persons with disabilities and therewith the key constituency of the CRPD. The representation of an expert in international development is directly connected to the involvement of the 14 As of this writing, September 2012. 15 Idem.

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development NGO Light for the World and its critical role in the initial ratification discussion. Complementing each the contribution from mainstream organisations are a representative of a human rights organisation as well as from academia. With three votes they form a minority vis-à-vis the DPO representatives. The law does not prescribe any qualifications other than the affiliation with the respective fields. There is no need, however, to verify a membership or other form of tie to those subject matters. Furthermore, there is no process prescribed for the selection and nomination by the umbrella DPO. Consequently, there are no guarantees for the selection process in terms of transparency, qualifications, merits and related factors. The plurality of the members thus completely depends on the awareness, preferences and sensitivities of the ÖAR board members. The nomination of the inaugural members of the Committee thus did not garner much attention. A list was drawn up rather swiftly, with two employees of the ÖAR, one employee of a key ÖAR member as well as the author in her capacity as an independent consultant, representing ‘persons with disabilities’. A representative of the independent living movement was assigned a deputy position but the self-representation of persons with disabilities was not an apparent objective. The lack of representation of persons with disabilities as experts in their own right therefore rightfully came under attack as the profile of the Committee rose. The cooperation of the Monitoring Committee with the coordination mechanism (Article 33(1)) is largely facilitated through the participation of representatives of the Ministry of Social Affairs. Per Section 13 Federal Disability Law—the Committee’s founding regulation—the Ministry is to participate in the Committee’s meetings. The Ministry representatives serve the challenging double role of supporting the Committee’s work as the administrative bureau and simultaneously feeding the information to and from the Committee both in the bureau-role as well as the Ministry role. The team supporting the inaugural Committee outdid itself in striking a balance between the conflicting tasks and discharging this fundamentally fraught mandate with highest professionalism and much admired bravery.16 In the initial stages, the representation of Ministry officials was higher but soon dwindled to the main and assisting bureau member. On occasion Ministry officials have joined Committee sessions and thus provided a clearer link to, and exchange with, the focal point. 16 Dr. Wolfgang Iser who was mainly responsible as a bureau member and a liaison to the Ministry has to be specially mentioned here.



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A Ministry official is usually present during those public meetings that take place in Vienna.17 4. Budget The Monitoring Committee’s design was based on the modus operandi of the Federal Disability Council. Assuming that the sub-committee of the larger body would follow suit, it was alleged that the body would meet rarely and that all members would have day-jobs, which would cover the cost of their participation. Accordingly, the Federal Disability Act foresees that the members of the Monitoring Committee serve pro bono. Other than allocating the time of a part-time position in the Ministry of Social Affairs to support the Committee’s work, there were no resources foreseen. This impacted comparatively ‘small’ issues, such as setting up a web site and other means of publicising the Committee’s existence or renting space and hiring assistance for public meetings. It quickly emerged that the government’s self-assessment of being in compliance with the CRPD would not hold up and as one of the consequences the Committee would require a lot more meeting time than anticipated. The Committee swiftly concluded that there was ample room to improve legal provisions as well as customs and practices to ensure compliance with the CRPD and thus set out to work, unpaid. The resources of the Committee remain scarce. Eighteen months into the mandate, the Parliament amended the Federal Disability Act to provide the Committee’s chair with an expense allowance.18 Publication efforts have been limited to piece-meal additions to the web site, any larger undertakings prove to be impossible. A particular thorn is the limited possibilities to support individual complainants: the Committee lacks the resources to actively support such cases. Intertwined with the lack of resources is the federalist set-up of Austria. Most cases have a significant if not overwhelming link to regulations and institutions at the provincial level. In the absence of any authorisation to take charge of such matters, the Committee’s possibilities are rendered into haplessness. Additionally, the ‘complex institutional landscape’ also has repercussions for many of the individuals approaching the

17 See on the public meetings, below. 18 Note that the main motivation for the amendment was the fact that the incumbent Chair is a freelancer and does not fall under the Ministry’s assumption of being fully employed.

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Committee. Frequently, complaints have already been lodged elsewhere and the sovereignty and independence of those other entities has to be respected. The majority of complaints pertains to issues in primary education: the need for assistance, the lack of assistive devices and special teachers, challenges around transportation to and from school. The second largest cause for complaint are problems in the realm of guardianship: inadequacy of support, transgressions but more so lack of action by guardians, questions around the frequency of communication and interaction with the guardian. 5. Rules of Procedure The Monitoring Committee was incepted on the day of the 60th anniversary of the Universal Declaration of Human Rights, i.e. 10 December 2008. The task of formulating comprehensive Rules of Procedure consumed the bulk of its first meetings.19 In an effort to emulate the Paris Principles, the Committee set itself a multitude of tasks, which it clearly could not fulfill in the absence of resources. The CRPD was established as the clear yardstick, processes and aims were to be guided by the treaty rather than prevailing, contemporary circumstances. The discussion of the Rules of Procedure quickly materialised into a list of shortcomings of the Committee’s foundations. Nevertheless, the Rules of Procedure set out duties and responsibilities,20 which are clearly guided by the Principles Relating to the Status of National Institutions: • The Committee monitors the domestic implementation of the Convention on the Rights of Persons with Disabilities. • The Committee promotes and protects the human rights of persons with disabilities. • The Committee advises the legislature, the government, the administration—particularly the Ministry of Labour, Social and Consumer Affairs— and the judiciary. • The Committee compiles reports to the legislature, the government, the administration—particularly the Ministry of Labour, Social and Consumer Affairs—and the judiciary. • The Committee issues recommendations on all questions related to the promotion, implementation and monitoring of the Convention (Art. 33 para. 2 Convention). 19 See minutes of meetings December 2008 to April 2009, available at: www .monitoringausschuss.at (in German). 20 Compare, Section 2 Rules of Procedure, available, in an unofficial English translation at: www.monitoringausschuss.at.



austria: an evolving sense of action183 • The Committee assesses the legal and administrative rules in force as well as corresponding practice and issues recommendations for amendments. • The Committee compiles statements on draft legislation and decrees. • The Committee recommends new legislative and administrative rules. • The Committee examines data and statistics. • The Committee contributes to the awareness raising and sensitisation of the public, also through public relations work. • The Committee collaborates with schools, universities, other educational institutions, medical, social and other relevant institutions. • The Committee cooperates with institutions, agencies and bodies nationally and internationally, foremost with representatives of civil society, particularly with persons with disabilities and their representative organisations, to include them in the monitoring process. • The Committee cooperates in particular with the focal points and coordination mechanism established in accordance with Art. 33 para. 1 of the Convention. • The Committee cooperates with the independent authorities, which are to effectively monitor all facilities and programmes designed to serve persons with disabilities in order to prevent the occurrence of all forms of exploitation, violence and abuse (Art. 16 para. 3 Convention). • Based on the unlimited application of the Convention for all parts of the State (Länder)—Art. 4 para. 5 Convention—the Committee cooperates in particular with the ‘authorities of the Länder that are to be established or named’ in accordance with § 13 para. 8 BBG. • The Committee cooperates with agencies related to the Convention abroad, in particular with other monitoring committees under Art. 33 para. 2 of the Convention as well as the Committee on the Rights of Persons with Disabilities (Art. 34 Convention), to which it will report as required. • The Committee advises and supports individuals and groups who want to file a communication with the Committee on the Rights of Persons with Disabilities established in line with Art. 34 of the Convention. • The Committee deals with complaints, which can also be submitted informally, by the complainants or their representatives (including representative organisations) on asserted violations of the Convention; the Committee can also inquire into the presumption of a violation of the Convention ex-officio: a. Based on a complaint or a presumption the Committee can request further information from the authority or institution in question as well as a statement from the administrative bodies (§ 13 para. 2 sub. 2 BBG). b. For this purpose the Committee may seek the consent of the concerned person or their representative in compliance with data security regulations. c. The Committee can, in line with data protection, seek the expertise of experts and civil society organisations, particularly organisations which represent persons with disabilities.

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marianne schulze d. The Committee can invite the complainant or her/his representative to a dialogue. e. The Committee examines the complaint or presumption, can make a statement within reasonable time, and makes a recommendation in case of a violation. • The Committee informs the public as necessary in all matters related to monitoring.

Furthermore, the Committee utilised the Rules of Procedure to establish its competences,21 again trying to follow the benchmarks set by the Paris Principles: In discharging their mandate committee members have, if necessary, also as a delegation as well as in cooperation with experts, particularly a. unlimited access to all relevant institutions and authorities necessary to discharge the mandate; b. an unlimited right to inspect files, the content of which is naturally covered by public confidentiality; c. the possibility to request statements from administrative bodies (§ 13 para. 2 sub. 2 Federal Disability Act, provision establishing the Committee); d. the possibility to request data and statistics (Art. 31 Convention).

Obviously, the implementation of both the duties and responsibilities as well as the competences as set out in the Rules of Procedure are dramatically confined by the inadequate—more precisely inexistent—financial resources of the Committee. Undoubtedly, the approach is prone to criticism given that hopes and expectations are created as to what the Committee should effectively be doing in discharging its mandate. There are two main arguments against curtailing the latitude of the Rules of Procedure that lead the Committee’s considerations. First, it was clear that the government’s expectations of the role and scope of work of the Committee—and thus the resources—needed to be clarified. In that vein one may frame the Rules of Procedure as an educative tool for the government. Secondly, one of the most challenging tasks of a novice unit, particularly a monitoring entity, is to resist the forces that try to create an institution that is defined by the circumstances rather than the obligations, here the lack of resources rather than the Paris Principles. Recommendation after recommendation, the challenge re-occurs, i.e. to stay true to the words of the CRPD rather than create a second or even

21 Compare Section 3, Rules of Procedure.



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third-rate standard that is defined by the situation on the ground rather than the yardstick enshrined in the CRPD. The stakes for any novice unit pushing the limits are high. They are made starker by the constituency that CRPD aspires to protect, namely persons with disabilities. The invisibility that most policies reinforce carries a moral and ethical obligation to re-set the rules of the game. In the absence of the monitoring body there is hardly any political entity that would feel obliged to act upon that responsibility and to create a space to enable participation on an equal basis with others. The inadequacies were immediately turned into the Committee’s first recommendation, which called for the establishment in a truly independent realm, distinctly separated from the Ministry of Social Affairs to underscore the cross-cutting nature of the CRPD as well as a call for a budget that would enable the work of a Paris-Principle-based entity. 6. Participation Subsequently, the Committee determined that it had to find ways to bring its work in line with the participation requirement set out in Article 33 (3) CRPD, cognisant that its composition alone would not suffice. Accordingly, the Committee proposed to hold public meetings on a regular basis. The first such event featured many shortcomings due to the lack of resources. There was no web site, the announcement was disseminated to a comparatively small number of organisations for persons with disabilities and an even smaller group of organisations of persons with disabilities. The draft documents for discussion were distributed only as the meeting commenced and were not made available in easy-to-read format. However, the second such meeting took place in the Parliament building’s largest room. The issue—inclusive education—sparked sufficient public attention to attract a significant crowd and hold a viable discussion. The fact that the draft document was revised based on comments provided during said meeting and in a designated period thereafter contributed significantly to a sense of meaningful participation and minimum level of ownership. For example, a public meeting in the fall of 2011 focused on challenges of the current guardianship regime and the potential of supported decision-making models. Importantly, a substantial number of persons with learning difficulties actively participated in the discussion, voicing their discontent with some of the challenges they face as well as sharing their concerns about potential changes to the existing regime. In an effort

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to increase participation of persons with disabilities outside the country’s capital city, the public meetings now alternate between a capital city of the provinces and Vienna, respectively. While the move to hold public meetings regularly has established a basis for participation, it is certainly fraught with challenges. The format only allows for so much contribution and impact and the lack of resources limits the number of such events to two per annum. While the importance of this form of participation has gained some acceptance among public officials, two basic lessons have yet to be learned regarding participation: firstly, there is a wide variety of modes or degrees of participation from consultation to cooperation to a give-and-take at eye-level and secondly, participation needs to be made possible in all spheres of policy deliberation, not just monitoring.22 Tellingly, the Austrian government has committed itself to upholding the EU Commission recommendation on participation23 by way of Standards of Public Consultation.24 The application thereof has been limited and largely reserved for environment related processes, where mediation and similar techniques have been utilised for some time. The Committee’s frequent referral to the Standards of Public Consultation has caused some indignation as to the low level of awareness. 7. Recommendations The Monitoring Committee has made recommendations on a string of issues, including employment, education, protection from violence, the risk of poverty and others. Some of the topics were discussed as part of public meetings and significantly informed by those deliberations, but the majority is developed and concluded in-camera with the occasional support from pertinent ministries and external experts. In fact, participation of ministry representatives in Committee meetings has become a regular feature. Furthermore, the Committee is increasingly included in the review process of draft laws sent out by ministries and the Parliament, respectively. This has enabled the Committee to respond to very specific legislation, such as the contested issue of monetary damages for children born with an impairment due to medical malpractice or the substantial 22 Compare Article 4 (3) and 33 (3), CRPD. 23 KOM(2002) 704, Towards a reinforced culture of consultation and dialogue—General principles and minimum standards for consultation of interested parties by the Commission. 24 Compare www.partizipation.at.



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revision of the ordinance setting the standards for determining impairment and disability, respectively. An exception to this rule was the draft law establishing a national preventive mechanism in accordance with OPCAT. It had to be tracked down ex officio and the addition of specific protection from violence for persons with disabilities had to be flagged by the Monitoring Commit­ tee in spite of previous discussion with the Chancellor’s legislative office.25 Generally, the Committee’s recommendations are disseminated in targeted fashion. Addressed to the Council of Ministers when of a broad, i.e., cross-cutting, nature, and to specific ministries as well as provincial governments, when necessary. The recommendations are increasingly cited in parliamentary papers and debates as well as government policy discussions. The composition of the Monitoring Committee led to considerable confusion over its exact position in the trajectory of government, civil society, and other entities. Initially, the Committee was viewed as a civil society entity that examines the government’s implementation of the CRPD. Establishing a role as an entity that collaborates both with government and non-government entities but that is distinctly different from a civil society organisation remains a challenge. An evolving sense of what monitoring might mean and what the precise functions of a human rights institution should be was on display in the Ministry’s assumption that the Monitoring Committee would write a ‘shadow report’ to the CRPD Committee in Geneva; i.e., that there would be one report outside the State Party report and the Monitoring Committee was to write it on behalf of Austrian civil society. It seemed to come as a great surprise to some representatives that in fact there could be a plethora of such reports from civil society and that the Committee would file its own report as a sui generis human rights entity. As mentioned earlier, a distinct challenge for the Committee remains the perception that Austria generally complies with its human rights obligations, including those enshrined in the CRPD. It clearly goes against public expectations that the Monitoring Committee repeatedly underscores the obligatory nature of the Convention. While there is no outright countering of this notion, there continues to be puzzlement over the charge that a country like Austria may not be delivering on the promises it has made by ratifying a human rights treaty. 25 Generally, the elaboration of the rules related to national preventive mechanism are rightly hailed as a highly participatory process.

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The nominations for the Committee are made by the umbrella DPO, ÖAR.26 Consisting of some 78 Member Organisations it is the government’s go-to entity for issues related to persons with disabilities. With rather arcane structures and an outdated mission, still informed by the prism of war veterans, its interests are also heavily guided and guarded by the service organisations among its ranks, which have a decisive influence in the governing bodies. Financially dependent on the government, particularly the Ministry of Social Affairs, as well as the aforementioned donation campaign hosted by the public broadcasting company, its room for maneuver is unsurprisingly curtailed. Principally Austria has a diverse landscape of NGOs, which in the broad sense of the term also includes a plethora of religious organisations, which herald from various denominations as well as the so-called Social Partners.27 As representative organisations of employees and employers respectively, they have historically enjoyed decisive political influence as a consensus-driven out-of-government forum that at times took on the stature of a shadow-government. While the mainstay of governing no longer can be attributed to the ‘shadow government’, the social partners, have maintained strong influence and are by and large viewed as ‘civil society’ per se, accorded pivotal sway. The organisation and particularly resourcing of NGOs outside these main entities remains challenging. Donations are the primary source of income in the absence of any larger public funds specifically designated to NGO-work and in the absence of established culture of philanthropy or other forms of non-state support, the situation is wanting. Reflective of international developments, the disability movement features a set of self-advocates with associations of persons with disabilities and a plethora of organisations for persons with disabilities, by and large service providers. The independent living movement is strong in some of the provinces and weak to non-existent in others. The Vienna, Upper Austria and Tyrol representations are professionally and politically engaged entities, they either provide or are closely linked to personal assistance services.

26 See, above, composition and membership. 27 See, e.g., the 360 Organisations that supported the Joint Submission for Austria’s first Universal Periodic Review in the Human Rights Council in January 2011, compare www .menschenrechte-jetzt.at.



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Also as a consequence of the CRPD implementation, the discussion about strengthening People First and Independent Living Associations is evolving fast. Governments in the provinces have a growing awareness of the need for self-representation. The far Western province of Vorarlberg has, e.g., provided resources and political support for the founding of a people first association, Mensch Zuerst Vorarlberg. The representation of persons with disabilities in political fora is fraught with challenges. Currently—2012—there are two members of Parliament who have disclosed to have an impairment and they are inevitably the spokespersons for disability for their respective parties. While the first wheelchair user—Manfred Srb—was elected in 1986, representing the Green Party, a steady flow of self-representation, importantly beyond the token disability spokesperson per party, has been wanting. A concerted effort to ensure participation of persons with disabilities in political fora, including the National Assembly is, however, lacking. The debate around political representation of persons with disabilities is regularly revived ahead of the appointment of the Ombudsman for Disabilities. Since its establishment in 2006, two past Ministers for Social Affairs have held the position. Thus, the public perception is that of a role reserved for former politicians, whereas the disability community adamantly calls for self-representation of persons with disabilities based on a transparent selection process. The participation in the Monitoring Committee has mainly been facilitated by the public meetings, which in three years attracted some 1.000 participants. The meetings have been varyingly described as ‘empowering’, ‘a showcase of democratic participation’, and a ‘wholly new and very useful experience’. After initial hesitation at using the forum and some learning on the Committee’s side in designing the discussion papers in such a way that the deliberative aspect became clearer—by posing questions and not only providing a draft text—the quality of the debate can be described as standard-setting. Self-representation is high, the diversity of experiences as well as support needs is also highly commendable. Within three years the public meetings have been established as a reliable forum for high quality debate with a good sense of ownership, also by seeing the interventions from the meeting clearly reflected—often verbatim—in the Committee’s subsequent recommendations and statements, respectively. Cooperation with the coordination mechanism and the focal points depends on the subject matter and appears largely incremental. ‘Projects’ such as the elaboration of the national action plan or a discussion about a

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personal assistance scheme lead to a certain degree of participation of persons with disabilities. It would be fair to say that while the government, particularly the Ministry of Social Affairs, would label the level of participation as high—based on previous practice—the representatives of orga­ nisations of persons with disabilities frequently do not feel adequately included in policy processes. More often than not the invitations are for show only, with outcomes defined and possibly decided beforehand. While the DPOs have largely adapted to the change from street fighting to greentable negotiations, the Ministry struggles to adjust to the circumstances, leaving lots of potential and opportunities untapped. More frequently than they would like to, DPO representatives feel that taking to the streets is necessary to make their case, in turn being labeled as unruly and at least covertly as unreliable by government officials. Conclusion The attitude of Austrian governments vis-à-vis international human rights obligations has slanted toward self-satisfaction and is prone to conceit. The exclusion of persons with disabilities from mainstream society being no less than in most other countries and with the added legacy of the Nazi-Era with its resulting imagery of persons with disabilities by and large not deconstructed, there are significant challenges in applying a human rights based approach to the inclusion of and accessibility for persons with disabilities. Welfarism as a defining feature of Austria’s public identity, the stakes for introducing rights based social policy are high. Given that the starting point was framed by the assumption of being in compliance, the sense of a re-assessment and consequently action has emerged comparatively fast. The government should rightly be commended for changing course at such pace, while the subsequent actions may equally rightly be criticised for stopping far short of the pledges made by ratification. The second largest challenge in addition to a contemporary image of persons with disabilities based on ability and assistance needs is meaningful participation. The government is obviously grappling with evolving from long-held patterns and clearly defined roles at the bargaining table, which solely comprised of themselves and sporadically representatives of the Social Partners. For the time being, anxiety based on lack of experience stands in the way of seeing the potential and the clear benefits of participatory processes.



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Beset with shortcomings and fraught with distinct limitations, the Committee’s work has clearly assisted the government’s understanding of the scope and meaning of the CRPD. The rules of procedure, a plethora of recommendations but particularly the public meetings, have created a clearer sense of understanding of where the path toward accessibility and inclusion needs to lead. The set-up of the Monitoring Committee is a classic product of the ‘modus austriacus’28—finding a sui generis solution, which does not entirely fulfill the initial aims or the obligations, respectively, but which will serve the purpose in a classic Viennese concoction of easy-going charm and a love of all things blurry. While frequently told that the Committee was acting far outside the expectations of the Ministry, it was never overtly curtailed—other than the complete and jarring lack of resources—in its work. A bulk of the credit goes to the members of the Committee who diligently and unwaveringly stood up to the challenge, all of them pro bono—save halfway the Chairperson. The formidable and commendable support by the representatives of the Ministry serving in a double role also as bureau members is the vital complementary factor for the Committee’s perseverance. The process of designating the national preventive mechanism in line with OPCAT has created some momentum in the institutional set-up. The fact that the Ombudsmen’s Office is now also in charge of parts of the CRPD’s monitoring is likely to increase the attention given to the treaty’s implementation. Whether the scattered institutional landscape will be retooled, remains to be seen. Fulfilling the CRPD’s goals and aspirations hinges also on a change of paradigm, particularly in the perception of persons with disabilities. In Austria this will necessitate a painful and vigorous appraisal of the immediate past. Additionally, resources will have to be allocated to create awareness about the human rights of persons with disabilities as well as implementation and monitoring. Participation of persons with disabilities in all these efforts will be key.

28 See E. Wiederin, ‘Denken vom Recht her Über den modus austriacus in der Staatsrechtslehre’, in H. Schulze-Fielitz (ed.), Staatsrechtslehre als Wissenschaft (Berlin: Duncker & Humblot, 2007) 293–317.

CHAPTER SEVEN

IMPLEMENTATION OF ARTICLE 33 CRPD IN SPAIN: A RATHER ERRATIC AND IMPROVISED EXPERIENCE Francisco J. Bariffi Introduction The purpose of this chapter is to explore the implementation of Article 33 CRPD within the Spanish context. Accordingly, Section I provides a brief introduction to the current Spanish disability law and policy. Section II gives a summary chronicle of both CRPD’s negotiation and implementation process at domestic level. Section III is devoted to explore the core elements of this Article, namely, how was Article 33 implemented within the Spanish context. In order to structure the analysis, Section III is divided into the three paragraphs of Article 33. Lastly, Section IV provides a conclusion. I. Brief Introduction to the Spanish Disability Law and Policy In 1982, the Spanish Parliament enacted the first comprehensive legislation addressing specifically disability issues, known as LISMI (13/1982).1 LISMI clearly adopted a medical model approach. Yet, the Act signalised an important improvement for persons with disabilities, especially in the fields of labour integration, education, rehabilitation and for social and economic benefits.2 In 2003, the Spanish Parliament enacted a new comprehensive piece of legislation on disability known as LIONDAU (51/2003).3 This Act supposed a substantial shift of Spanish disability law towards a human rights 1 Spanish acronym for ‘Ley de Integración Social de los Minusválidos’ - Social Integration of the Handicapped Act (availale at: www.boe.es/boe/dias/1982/04/30/pdfs/A11106-11112. pdf). 2 For further details about LISMI see: A Palacios, ‘Discapacidad, derechos humanos y protección constitucional’, in Los Derechos de las personas con discapacidad, Vol. I. Aspectos jurídicos (Consejo General del Poder Judicial: Madrid, 2007). 3 Spanish acronym for ‘Ley de Igualdad de Oportunidades, No Discriminación y Accesibilidad Universal’—Equality of Opportunities, Non-Discrimination, and Universal Accessibility Act (available at: www.boe.es/boe/dias/2003/12/03/pdfs/A43187-43195.pdf).

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perspective based on the social model of disability. LIONDAU does not replace but complements LISMI. LIONDAU focuses on two interrelated strategies, i.e. the fight against discrimination and accessibility. Article 1 states that the purpose of the Act is to provide necessary measures in order to ‘ensure’ and ‘fulfil’ the right to equality of opportunities of persons with disabilities under the Constitution. Equality of opportunities is defined as the absence of discrimination (direct or indirect) based on grounds of disability.4 Article 2 declares and defines as inspiring principles: independent life, normalisation, universal accessibility, design for all, civil dialogue, and mainstreaming of disability policies. LIONDAU not only triggered an important amount of subsidiary regulations, but also other related norms such as the ‘Disabled Persons Assets Protection Act of 2003’,5 the ‘Recognition of Spanish Sign Language Act of 2007’,6 and the ‘Regime of Offences and Sanctions under LIONDAU Act of 2007’.7 In relation to the above mentioned subsidiary regulations, LIONDAU prompted four important regulations, i.e. ‘Regulation for the creation of the National Disability Council of 2004’,8 ‘Regulation for the establishment of an Arbitral Procedure under LIONDAU of 2006’,9 ‘Regulation for the establishment of an Accessible Voting Procedure for persons with visual disabilities of 2007’,10 and ‘Regulation for the Participation of Persons with disability in the political life and voting process of 2011’.11   4 This definition has been recently adjusted to the CRPD’s definition of ‘disability based discrimination’ (See Section II).   5 Ley del Patrimonio Protegido de las Personas con Discapacidad (available at: www.boe .es/boe/dias/2003/11/19/pdfs/A40852-40863.pdf).   6 Ley de Reconocimiento de la Lengua de Signos Española (available at: www.boe.es/ boe/dias/2007/10/24/pdfs/A43251-43259.pdf).   7 Régimen de Infracciones y Sanciones en Material de Igualdad de Oportunidades, No Discriminación y Accesibilidad Universal de las Personas con Discapacidad) (available at: www.boe.es/boe/dias/2007/12/27/pdfs/A53278-53284.pdf).   8 Real Decreto 1865/2004, de 6 de septiembre, por el que se regula el Consejo Nacional de la Discapacidad (available at: www.boe.es/boe/dias/2004/09/07/pdfs/A30612-30616 .pdf).   9 Real Decreto 1417/2006, de 1 de diciembre, por el que se establece el sistema arbitral para la resolución de quejas y reclamaciones en materia de igualdad de oportunidades, no discriminación y accesibilidad por razón de discapacidad (available at: www.boe.es/boe/ dias/2006/12/13/pdfs/A43718-43724.pdf). 10 Real Decreto 1612/2007, de 7 de diciembre, por el que se regula un procedimiento de voto accesible que facilita a las personas con discapacidad visual el ejercicio del derecho de sufragio (available at: www.boe.es/boe/dias/2007/12/08/pdfs/A50615-50617.pdf). 11 Real Decreto 422/2011, de 25 de marzo, por el que se aprueba el Reglamento sobre las condiciones básicas para la participación de las personas con discapacidad en la vida



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At last, an innovative law was enacted in late 2006 in order to recognise as universal and subjective rights a set of benefits to promote the personal autonomy of persons in a situation of dependency under the ‘Promotion of Personal Autonomy and Attention to Persons in situations of Dependency Act of 2006’.12 The Act aims mostly at disabled and elderly persons, and regulates as ‘pseudo-rights’ some social benefits in order to compensate situation of dependency. Finally, and in relation to the disability policy, the government has approved in 2011 the so called ‘2012–2020 Spanish Disability Strategy’.13 This document is inspired in both the CRPD and LIONDAU and it is framed within the scope of the European Disability Strategy 2010–2020.14 II. Negotiation and Ratification Process of the CRPD in Spain Right after the adoption of the final text, Spain was among the first States to sign the Convention and its Optional Protocol on 30 March 2007, and to ratify both instruments on 3 December 2007. The internal legislative process for the ratification of the CRPD took place between 18 October and 23 November 2007.15 On 21 and 22 April 2008, both the Convention and the Optional Protocol where published in the official bulletin, respectively, formally becoming part of Spanish domestic law.16 Likewise, and pursuant Articles 95 and 96 of the Constitution, the CRPD was incorporated to the domestic system with hierarchy over ordinary laws, so any inconsistency with lowers provisions, should be amended or repealed. This way Spain became the first EU Member State to ratify to the CRPD. However, this unusual interest shown by the Spanish government towards the whole CRPD process simply reveals the domestic general consensus política y en los procesos electorales. (available at: http://www.boe.es/boe/dias/2011/03/30/ pdfs/BOE-A-2011-5714.pdf). 12 Ley de Promoción de la Autonomía Personal y Atención a las Situaciones de Dependencia (available at: www.boe.es/boe/dias/2006/12/15/pdfs/A44142-44156.pdf). 13 For a complete version of this document see: http://www.msps.es/politicaSocial/ discapacidad/docs/estrategia_espanola_discapacidad_2012_2020.pdf. 14 See: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2010:0636:FIN:EN :PDF. 15 For details of the legislative debates see: Diario de Sesiones del Senado. Año 2007. VIII Legislatura. Núm. 136. Sesión del Pleno celebrada el martes 6 de noviembre de 2007. 16 BOE núm. 96, de 21 de abril de 2008, and BOE núm. 97, de 22 de abril de 2008.

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achieved on the need to recognise and protect the rights of persons with disabilities from the perspective of the social model of disability. Even before the CRPD’s negotiation process was initiated, Spain had turned domestically towards a rights based approach with the adoption on the LIONDAU in 2003.17 The first and, perhaps only exhaustive, screening exercise of the Spanish legislation under the CRPD18 was carried out by a team of university experts, together with CERMI (Spanish Committee of Representatives of Persons with Disabilities) which is Spain’s umbrella organisation for Disabled People’s Organisations (DPOs).19 As for the government, on 10 July 2009, the Council of Ministries (Consejo de Ministros), approved the creation of a Working Group, chaired by the Ministry of Health and Social Policy and with representation of all ministerial departments, in order to carry out a comprehensive study of the Spanish legislation in the light of the CRPD. Almost a year after its creation, on 30 March 2010, the Working Group issued an official report called ‘Report on the necessary measures for the compliance of the legislation with the UN Convention on the Rights of Persons with Disabilities’.20 However, this report makes no reference what so ever to the national structures for the implementation and monitoring of the Convention. The above mentioned report prompted the subsequent enactment of two pieces of law in 2011. The first one is Act 26/2011 of 1 August on the normative adjustments to the Convention of the Rights of Persons with Disabilities21 which amends ten normative bodies directly and indirectly 17 See Section I. 18 For a complete version of the report see: http://www.cermi.es/es-ES/Biblioteca/ Paginas/Inicio.aspx?TSMEIdPub=55. Likewise, a summary of this report was published at: P Cuenca Gómez (ed.), Estudios sobre el Impacto de la Convención Internacional sobre los Derechos de las Personas con Discapacidad en el Ordenamiento jurídico español (Dykinson: Madrid, 2010). 19 Comité Español de Representantes de Personas con Discapacidad. CERMI’s mission is to represent and defend people with disabilities and to protect their human rights, both individually and as a whole. CERMI acts with one sole and unified voice but respecting diversity and pluralism. CERMI establishes contacts with public authorities, stakeholders and society to raise awareness on the needs and claims of this social group. CERMI became the interlocutor and referent of disability, to promote non-discrimination, equal opportunities and social emancipation and to improve living conditions for citizens with disabilities and their families in Spain. Information available at: www.cermi.es. 20 For a complete version of this report (in Spanish) see: http://www.cermi.es/es-ES/ Novedades%20e%20informaci%C3%B3n%20de%20interes/Paginas/Inicio .aspx?TSMEIdPub=198. 21 Ley 26/2011, de 1 de agosto, de adaptación normativa a la Convención Internacional sobre los Derechos de las Personas con Discapacidad (BOE 2/08/2011).



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related to disability issues. The Act starts devoting great attention to LIONDAU with the amendment of over 15 provisions.22 Among these, the Act incorporates to LIONDAU—with quite similar terms—the concepts of ‘disability based discrimination’, as well as the concept of ‘person with disability’ based on Articles 2 and 1 CRPD, respectively. In addition to Act 26/2011, the second piece of law prompted by the Working Group Report was Royal Decree 1276/2011 on the normative adjustments to the Convention of the Rights of Persons with Disabilities,23 affecting the Spanish legislation with a lower hierarchical level (subsidiary regulations).24 This legal piece deals with the independent mechanism under Article 33(2) which will be discussed in detail below. III. Article 33 CRPD within the Spanish Context As explained in the theoretical part of this book, Article 33 CRPD embodies the obligation upon States Parties to designate or establish national implementation and monitoring mechanisms. Article 33 puts forward, perhaps in a not much clear language, national structures in which two basic components can be distinguished. On the one hand, Article 33(1) requires States Parties to ‘designate one or more focal points within 22 Besides LIONDAU, Act 26/2011 amends other statutes such as: Act 27/2007 (Spanish sign language act); Act 49/2007 (enforcement measures for the breach of LIONDAU); Decree 5/2000 (Enforcement measures on Social Welfare); Act 30/1979 (organs extraction and transplant); Act 14/1986 (general health); Act 41/2002 (patient rights); Act 14/2006 (assistive human reproduction technique); Act 16/2003 (national health system); Act 44/2003 (regulation of sanitary professions); Act 7/2007 (statute of the public employee); Act 2/1985 (civil protection); Act 23/1998 (international cooperation and development); Act 50/1980 (insurance contracts); Act 49/1960 (buildings); Act 34/2002 (information society and e-commerce); Act 39/2007 (Military career); and Act 30/2007 (public procurement); Act 13/1982 (LISMI). 23 Real Decreto 1276/2011, de 16 de septiembre, de adaptación normativa a la Convención Internacional sobre los derechos de las personas con discapacidad (BOE 17/09/2011). 24 Royal Decree 1276/2011 amends a series of existing Decrees such as: Royal Decree 1544/2007 (accessibility standards for access and use of transportation by persons with disabilities); Royal Decree 1494/2007 (accessibility standards for the access of persons with disabilities to technologies, goods and services related to the information society and social communication media); Royal Decree 407/1992 (basic statute for civil protection); Royal Decree 1546/2004 (nuclear emergency plan); Royal Decree 1564/2010; (guidelines for civil protection against radiologic risk); Royal Decree 1123/2000 (support units before disasters); Decree 2 June 1944 (notary regulation); Royal Decree 2070/1999 (human organs extraction and transplant); Royal Decree 1301/2006 (human cells and tissues); Royal Decree 1088/2005 (blood transfusion); and Royal Decree 223/2004 (drugs clinical trials). Additionally, Royal Decree 1544/2011 appoints the Spanish independent mechanisms under Article 33(2) CRPD.

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government for matters relating to the implementation of the’ CRPD, and on the other hand, Article 33(2) requires States Parties to ‘maintain, strengthen, designate or establish (…) a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation’ of the CRPD.25 At the beginning, Spain’s governmental position in relation to Article 33 was rather ambiguous. However, civil society pressure has been able to change the course of action and, as we will discuss below, the government has finally acknowledged Article 33’s double approach. A. Article 33(1) CRPD Article 33(1) CRPD asserts that: States Parties, in accordance with their system of organisation, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels.

1. Focal Point Currently the focal point on matters related to the implementation of the CRPD in Spain is the Directorate-General on Policies to Support Disability26 (Dirección General de Políticas de Apoyo a la Discapacidad) inserted within the Ministry of Health, Social Policy and Equality. This focal point has changed name and ministry a few times since the ratification of the CRPD.27 Under Article 6 of Royal Decree 200/2012 the 25 For further details see also: M. Stein & J. Lord, ‘Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential’ (2010) 32 Human Rights Quarterly 689–728; M. Schulze, ‘Effective Exercise of the Rights of Persons with Disabilities: National Monitoring Mechanisms’, in W. Benedek, C. Gregory, J. Kozma, M. Nowak, C. Strohal and E. Theuermann, (eds.), Global Standards—Local Action. 15 Years Vienna World Conference on Human Rights (Vienna/Graz: Intersentia, 2009) 217– 226; G. Quinn, ‘Resisting the ‘Temptation of Elegance’: Can the Convention on the Rights of Persons with Disabilities Socialise States to Right Behaviour?’, in O. Arnardottir and G. Quinn (eds), The UN Convention on the Rights of Persons with Disabilities. European and Scandinavian Perspectives (London/Boston: Martinus Nijhoff Publishers, 2009) 215–256. 26 Pursuant Royal Decree 1887/2011, of December 30th, Article 13(4). 27 First, it was the Directorate-General for the Coordination of Sectorial Policies on Disability falling under the competencies of the Ministry of Labour and Social Affairs. Then it changed into State Secretary of Social Policies, Family, Attention to Depedencies and Disabilty under the Ministry of Education, Social Affairs and Sports.



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Directorate-General on Policies to Support Disability has competencies, inter allia, in the following areas: a) promotion of sectorial policies on disability and the coordination between ministries as well as with the General Administration and the autonomic communities and local authorities; b) planning and design of programs and plans on disability at national level, and their coordination with autonomic authorities; c) administration and evaluation of programs and plan at national level in cooperation with other ministries, autonomic authorities, and local authorities; d) normative proposals on disability, without prejudice of the competencies of the General Technical Secretary; e) promotion of cooperation with organisations and other entities of persons with disabilities and their families, and the coordination and monitoring of consultative bodies on disability. The Directorate-General on Policies to Support Disability is rather a low rank governmental body and therefore it is uncertain whether it will have the adequate power to implement decision affecting other bodies, foremost other ministries. In addition, the allocation of the focal point within the scope of the Ministry of Health is certainly not a good decision taking into account the social model of disability which clearly inspires the CRPD.28 2. Coordination Mechanism As regards to the coordination mechanism for matters relating to the implementation of CRPD in Spain, this task was entrusted to the National Disability Council (NDC).29 The NDC is a collective inter-ministerial organ with consultative character, acting under the Ministry of Health and Social Policy. The NDC was originally created under the mandate of Article 15 of LIONDAU30 and aims at institutionalising the cooperation between representative organisations of persons with disabilities and the public

28 A Palacios, El modelo social de discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad, Colección CERMI, Ediciones Cinca, Madrid, 2008. 29 According to Royal Decree 1855/2009, of December 4. 30 NDC was created under Royal Decree 1865/2004, of September 6, and subsequently amended pursuant Royal Decree 1468/2007, of November 2. This last regulation already

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administration, in order to coordinate and define a coherent and comprehensive policy on disability. The NDC has representation of all governmental ministries, the organisations of persons with disabilities, and experts and consists of 40 members: a) one President (who is the Minister of Health and Social Policy and Equality); b) three vice-Presidents (two representing the Ministry of Health and Social Policy and Equality and one representing organisations of persons with disabilities); c) 16 representatives of ministries (the Ministry of Health and Social Policy and Equality, the Ministry of Economy and Finance, the Ministry of Interior, the Ministry for Public Works, the Ministry of Education, the Ministry of Industry, Tourism and Trade, the Ministry of the Presidency, the Ministry of Work and Immigration, the Ministry of the Environment, Rural and Marine Affairs and the Ministry for Regional Policy and Public Administration); d) 16 representatives of organisations of persons with disabilities; e) four experts.31 According to Article 1 of Royal Decree 1855/2009, the main purpose of the NDC is the promotion of equality of opportunities and nondiscrimination of persons with disabilities, and pursuant Article 2, the NDC has the following functions: a) to promote the basic principles and guidelines of the comprehensive policy for persons with disabilities within the scope of the general administration, incorporating the principle of mainstreaming; b) to submit recommendations and implement initiatives in relation to plans or programmes of action; c) to acknowledge, and implement initiatives in relation to funding for the programmes for persons with disabilities, and distribution criteria;

included among the functions of the NDC to become the coordination mechanism in Spain for the CRPD. (Official Link: http://www.boe.es/boe/dias/2007/11/26/pdfs/A48329 -48331.pdf). 31 See: G. de Beco, Study on the Implementation of Article 33 of the UN Convention on the rights of persons with Disabilities in Europe, Office of the High Commissioner of Human Rights (OHCHR) Regional Office for Europe, 36.



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d) to issue reports with no binding character about any bill or any other initiative related to the scope of the Council submitted for its consideration, in particular, the initiatives about equality of opportunities, non-discrimination and universal accessibility; e) to promote the development of actions related to the collection, analysis, drafting and distribution of information; f) to encourage activities of research, capacity building, innovation, ethics, and quality within the field of disability; g) to acknowledge policies, funds and programmes within the European Union and other international bodies and to collect information in relation to the Spanish position and proposals at the international forums; h)  to become the reference body within the National General Administration for the promotion, protection and monitoring in Spain of all international conventions about human rights of persons with disabilities incorporated into the domestic law, and specifically, in relation to the International Convention on the Rights of Persons with Disabilities, which entered into force of May 3 2008; i)  to take on any other function attributed under any act or regulation within the scope of its competencies. In addition, the NDC created under its auspices, a Specialised Permanent Office (Oficina Permanente Especializada).32 Among the main functions of the Office are: 1) to provide legal advice and support to victims of discrimination on the ground of disability; 2) to study and analyse of the complaints about discrimination on the ground of disability; 3) to propose measures to prevent situations of discrimination in all the fields covered under LIONDAU; 4) to carry out an annual report about the situation of equality of opportunities, non-discrimination and universal accessibility of persons with disabilities; 5) to cooperate with judicial and administrative bodies in all relevant disability related matters. Officially, the government has not provided detailed information on how is the NDC dealing with the coordination of public policies and the 32 For further details see the official website: http://www.oficinape.mspsi.es/home.htm.

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implementation of the CRPD, nor has it indicated this information in the initial report before the Committee for the CRPD.33 The Specialised Permanent Office depending from the NDC has extensive and valuable information on the situation of rights enjoyment by persons with disabilities in Spain,34 yet it does not indicate how ‘coordination’ is, or should, be carried out. While the NDC’s structure and functions seem to meet the expectations for an effective and influential body, there is no official record or information on how is the NDC dealing with the application of the CRPD. The fundamental role of the coordination mechanism, as well as, the need to include persons with disabilities in the application process, require the existence of clear functioning and decision making rules, and public access to decisions adopted. All this needs to be improved in the current status of the Spanish coordination mechanism. To sum up, it seems like Spain has acknowledged the need to designate competent bodies to carry out the obligations set forth on Article 33(1) CRPD. Likewise the government has been able to differentiate and appoint different bodies to serve as a ‘focal point’, i.e. the Directorate-General on Policies to Support Disability, and as a ‘coordination mechanism’, i.e. the NDC. However, if we take a deeper look into the functioning of these bodies, there seem to be some issues, which will need to be improved.35 B. Article 33(2) CRPD Article 33(2) CRPD asserts that: States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights.

33 See Spain’s Initial reports submitted by States parties in accordance with Article 35 of the Convention, CRPD/C/ESP/1, 5 October 2010. 34 Official annual reports in full text since 2005 are available at: http://www.oficinape .mspsi.es/informesOPE/home.htm. 35 For further details on the expected functioning structure of both the ‘focal point’ and the ‘coordination mechanism’ see, in addition to the theoretical part of the book: Thematic study by the Office of the UN High Commissioner for Human Rights on the structure and role of national mechanisms for the implementation and monitoring of the



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Spain acknowledged already in November 2007—even before the CRPD entered into force—that the government needed to designate a focal point and coordination mechanism for the implementation of the CRPD, entrusting the NDC to become the reference body within the State General Administration for the promotion, protection and monitoring of the international legal instruments on the rights of persons with disabilities incorporated at domestic level.36 The ambiguity of this new role of the NDC did not clarify whether the NDC would become only the Spanish body under Article 33(1), or if it would also assume the monitoring role under Article 33(2). This ambiguity persisted in 2009, as explained above, when the regulation of NDC was replaced with the new Royal Decree, which, in relation to this issue simply reaffirmed NDC’s role as ‘reference body’ for the ‘promotion, protection and monitoring’ including an express reference to the CRPD. The Spanish initial report submitted before the CRPD Committee pursuant Article 35 CRPD on 3 May 2010 did not bring any light as the wording issued by the governments is rather confusing. The Government suggested that in order to comply with Article 33 ‘… in 2007 the regulations governing the National Disability Council (now regulated by Royal Decree No. 1855/2009 of 4 December 2009) were amended to designate it as the institutional body responsible for the application and implementation of the Convention, incorporating into its functions that of serving as the focal point in the general administration of State for the promotion, protection and monitoring in Spain of the international legal instruments relating to the human rights of persons with disabilities which been incorporated into domestic law, and, in particular, the United Nations International Convention on the Rights of Persons with Disabilities…’37 Accordingly, and considering the lack of independent element on line with the Paris Principles, the Committee urged the Spanish government in the list of issues to ‘report on how the national monitoring mechanisms required under Article 33, paragraph 2, of the Convention, especially the National Disability Council, are mainstreamed in the national human rights mechanism of Spain’.38 As a common practice among human rights Convention on the Rights of Persons with Disabilities, A/HRC/13/29, 22 December 2009, paras 22–36. 36 Pursuant Article 1 of Royal Decree 1468/2007, of November 2. 37 Spain’s Initial reports submitted by States parties in accordance with Article 35 of the Convention, CRPD/C/ESP/1, 05 October 2010, para. 252. 38 List of issues to be taken up in connection with the consideration of the initial report of Spain (CRPD/C/ESP/1), concerning Articles 1 to 33 of the Convention on the Rights of Persons with Disabilities, CRPD/C/ESP/Q/1, para. 32.

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treaty based monitoring bodies, the CRPD Committee can, on the basis of information at its disposal, ‘formulate in advance a list of issues for which supplementary information to that contained in the common-core and treaty specific documents is required’.39 The government replied to the this issue on 4 July 2011, clarifying that the NDC should be considered as the coordinating mechanism provided under Article 33(1) and that the NDC meets the criteria of the so-called ‘Paris Principles’. In addition the government responded that the ‘promotion, protection and monitoring’ tasks of the NDC are accomplished through the Annual Reports submitted to the NDC by the Specialised Permanent Office.40 The Spanish responses to the CRPD Committee reveal that the governmental ambiguity in differentiating, or drawing a clear cut between the tasks entrusted to the ‘coordinating mechanism’ and the ‘independent mechanism’ still persists. Even worse, the government states that the NDC meets the criteria of the Paris Principles, when these principles are in fact destined to national human rights institutions, and not governmental bodies depending on the executive branch. In addition, the CRPD’s reference to the Paris Principle is in Article 33 (2) and not in Article 33 (1). However, the Spanish initial report also highlights that ‘the Spanish Committee of Representatives of Persons with Disabilities (CERMI) was designated the primary independent civil society organisation in this area by decision of the National Disability Council dated 17 September 2009’.41 Officially this appointment was not confirmed until September 2011 when Royal Decree 1276/2011 included on the first additional provision the following text: ‘… without prejudice of the powers of the People’s Ombudsman as High Commissioner for the defense of human rights, and pursuant Article 33 paragraph 2 of the International Convention on the Rights of Persons with Disabilities, the Spanish Committee of Representatives of Persons with Disabilities (CERMI) as the most representative national association of public interest covering all types of disabilities, is appointed as the independent mechanism to promote, protect and monitor in Spain …’ the CRPD (emphasis added). 39 Working methods of the Committee on the Rights of Persons with Disabilities adopted at its fifth session (11–15 April 2011), CRPD/C/5/4, 2 September 2011, para. 5. 40 Lista de cuestiones que deben abordarse en relación con el examen del informe inicial de España (CRPD/C/ESP/1), en relación con los artículos 1 a 33 de la Convención sobre los derechos de las personas con discapacidad, Respuestas de España (4 julio 2011). 41 Spain’s Initial reports submitted by States parties in accordance with Article 35 of the Convention, CRPD/C/ESP/1, 05 October 2010, para. 253.



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While the Spanish initial report before the CRPD Committee uses an ambiguous wording referring to CERMI as the ‘primary independent civil society organisation’, Royal Decree 1276/2011 makes clear that this body has become the independent mechanism envisaged on Article 33(2) CDPD. However, this designation still leaves some uncertain issues. On the one hand, it seems like Spain has opted for the ‘appointment’ format i.e. simply designated an existing body to perform national monitoring, without indication of the structure of such a mechanism and without allocating financial or human resources. This raises some questions such as: how would the independent body carry out the monitoring tasks, how to ensure independence or undue influence from government, or how operational funding would be provide, especially if we take into account the reference of Article 33(2) to the ‘Paris Principles’?42 In relation to this last issue the CRPD Committee explicitly requested to the Spanish Government to ‘explain whether the Committee of Representatives of Persons with Disabilities (CERMI) complies with the principles relating to the status of national institutions for the promotion and protection of human rights (Paris Principles)’.43 The official response to the Committee’s request does not provide much clarity. The government simply states (but does not explains) that CERMI meets the Paris Principles in relation to its attributions, composition and functioning, but recognises that CERMI fails to meet both the ability to hear and consider individual complaints and the official appointment and specific duration requirements.44 On the other hand, and even though CERMI seems to be the ‘primary’ independent organisation, Royal Decree 1276/2011 acknowledges that other bodies may also have jurisdiction in this matter, such as the People’s Ombudsman in its character of High Commissioner for the defense of human rights which is Spain's national human rights institution with A-Status. Furthermore, all these bodies have only a national scope so it is unclear whether other bodies with autonomic or provincial jurisdiction could also become independent mechanisms in light of Article 33(2). 42 Principles relating to the Status of National Institutions (The Paris Principles), adopted by General Assembly resolution 48/134 of 20 December 1993. 43 List of issues to be taken up in connection with the consideration of the initial report of Spain (CRPD/C/ESP/1), concerning Articles 1 to 33 of the Convention on the Rights of Persons with Disabilities, CRPD/C/ESP/Q/1, para. 32. 44 Lista de cuestiones que deben abordarse en relación con el examen del informe inicial de España (CRPD/C/ESP/1), en relación con los artículos 1 a 33 de la Convención sobre los derechos de las personas con discapacidad, Respuestas de España (4 julio 2011).

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The People’s Ombudsman has a constitutional mandate enshrined on Article 54 of the Spanish Constitution, and has the mission to protect and defend basic rights and public freedom on behalf of citizens. However and surprisingly, the 2011 Ombudsman‘s Annual Report45 does not acknowledges the possible implications in the Ombudsman functions of the competences conferred to this body in relation to Article 33(2) CRPD in Royal Decree 1276/2011. It can be interpreted then that the Ombudsman will likely adopt a rather minimalist approach. The wording of Royal Decree 1276/2011 - without prejudice of the powers of the Peoples Ombudsman- may give room to this interpretation. It should be pointed out however that, unlike with the CRPD, the Ombudsman—designated as the national preventive mechanism—has become an active and central monitoring body of the Optional Protocol to the UN Convention Against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT) in Spain.46 Besides official statements, it is important to mention that CERMI has created recently a ‘Support Committee’ (Comité de Apoyo del CERMI).47 According to the preamble of the decision,48 CERMI decided to create such a support mechanism, open to civil society, in order to provide the optimal conditions to carry out the national monitoring of the CRPD. For this purpose, CERMI should have appropriate infrastructure, as well as sufficient funds to avoid financial control from the public administration which could compromise its independence. The Support Committee has the following functions: a) to submit to CERMI, opinions, proposals and reports about matters related to the promotion and protection of the human rights of persons with disabilities; b) to submit to CERMI proposals for the harmonisation of the legislation, regulations or national practice to the international standards; c) to review and make propositions to the reports prepared by CERMI acting as independent monitoring mechanism; 45 See: Informe Anual a las Corte Generales año 2011 del Defensor del Pueblo, available  at: http://www.defensordelpueblo.es/es/Documentacion/Publicaciones/anual/ Documentos/Informe_2011.pdf. 46 See: Annual Report available in English at: http://www.defensordelpueblo.es/en/ Documentacion/Opcion5/Documentos/Spain_NPM_2010.pdf. 47 For information about the Support Committee see: http://www.convenciondiscap acidad.es/Comite_new.html. 48 Decisión sobre la creación de un Comité de Apoyo del CERMI para el mejor desarrollo de su función como organismo independiente de seguimiento de la Convención Internacional sobre los Derechos de las Personas con Discapacidad en España.



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d) to submit proposals to CERMI on how to cooperate with the UN, other bodies of the UN system, regional bodies, and others countries in relation to promotion and protection of the human rights of persons with disabilities; e) to submit proposals to CERMI on how to contribute to the research and education on the human rights of persons with disabilities; f) to propose to CERMI strategies for the capacity building of the rights of persons with disabilities, and for the fight again discrimination raising the awareness of the public opinion; g) to recommend to CERMI strategies or guidelines in order to provide advice and material and technical support to the persons or entities looking to file an individual complaint before the UN Committee for the CRPD. The Support Committee has a structure composed of two organs: the Council and the Permanent Delegation. The Council shall be the organ with powers to approve the Support Committee’s opinions, recommendations, proposals and reports, as well as to lead the Support Committee’s courses of action. The Council shall have up to 21 independent members elected for a four years term. The appointment should meet to following criteria: a)  six persons from the most representative association of the different types of disabilities at national level, preferably persons with disabilities. Among these there shall be appointed at least one women with disability with accredited expertise on gender and disabilities issues; b) one person from organisations for the defense of the rights of persons with disabilities; c)  one person from general organisations for the defense of human rights; d)  one person from the National Disability Observatory; e)   one person from the Spanish Federation of Municipalities and Provinces; f)    one or two persons from the academia, experts on the rights of persons with disabilities; g)   one person from the union sector; h) one person from the business sector; i)      one person from the People’s Ombudsman Office; j)      one representative from the Congress; k)   one person from the Spanish government; l)      one person from the Judicial Power;

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m) one person from the Public Prosecutor Office;   n) one person from professional entities involved in the defense of human rights;   o) one person from the autonomic territorial administration. The Council shall be chaired by a delegate form CERMI, and shall meet at least once a year. The Permanent Delegation shall be the executive organ providing administrative support to the Committee. The actual structure of CERMI seems to provide a good basis for the promotion, protection and monitoring process envisaged on Article 33(2).49 As for the promotion, CERMI has proven to become an active and effective political platform to dialogue with a unified discourse before the parliament as well as the executive branch. In this respect, CERMI has been able to propose both new legislation and the revision of existing one directly or indirectly dealing with disability issues. In addition, CERMI has active representation at the international level, whether in Latin America, at the European Union, or before the UN. As for the protection, CERMI generates, on regular basis, reports, studies, or publications on pressing disability issues, as well as, it provides to any person or group of persons with disabilities legal advice, including the possibility to receive individual complaints. As regards this last function, CERMI does however not have power to decide over individual complaints but it simply facilitates access to justice (legal representation, amicus curiae, legal counseling, etc.). As for the monitoring, CERMI has been able to work in at least three different ways. First, it can do so by promoting the national screening exercise of the Spanish legislation under the CRPD, and reporting existing legal inconsistencies to the government.50 Secondly, CERMI has intensively participated in both the Conferences of States Parties and before the

49 For further details on the activities that can be considered to fall within the scope of ‘promotion, protection and monitoring’ see besides the theoretical part of the book: Thematic study by the Office of the UN High Commissioner for Human Rights on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities, op. cit., paras 62–68. 50 In addition to the general and comprehensive screening exercise carried out by CERMI and the University Carlos III (referred in Section II), CERMI has expressed to the government the need to revise legislation on forced sterilisation, on accessibility, on political participation, on gender, on inclusive education, among many others.



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UN Committee on the Rights of Persons with Disabilities, even with the presentation of a shadow report, and proposals for the list of issues.51 Thirdly, CERMI carries out and publishes each year an Annual Report on Human Rights and Disability in Spain. These reports analyse the situation of the human rights of persons with disabilities in Spain in relation to each Article of the CRPD.52 C. Article 33(3) CRPD Article 33(3) CRPD asserts that: Civil society, in particular persons with disabilities and their representative organisations, shall be involved and participate fully in the monitoring process.

This provision reinforces the general obligation set forth in Article 4(3) CRPD which reads as follows: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations.

For a good reason, the negotiators of the CRPD believed necessary to reinforce the general obligation of Article 4(3) in a key area for the realisation of the rights enshrined in the CRPD. The wording of Article 33(3) is clear and revealing: persons with disabilities and their organisations, shall be involved and participate fully in the monitoring process. The verb ‘shall’ clarifies that it should be considered a State’s legal obligation and not simply a recommendation. To be ‘involved’ and ‘participate’ gives the clear indication that persons with disabilities must have an active and participatory role in the process and not simply be consulted of the outcome. Finally, the word ‘fully’ clear indicates that persons with disabilities must get involved and participate in the whole process, from the beginning to the end.53 51 See Human Rights and Disability: Alternative Report Spain 2010. Drawn up by CERMI State Delegation for the UN Convention. For an English version of this report see: http:// www2.ohchr.org/SPdocs/CRPD/5thsession/CERMI_Spain_5thSession_en.doc. 52 For a complete version of these reports since 2008 see: http://www.convenciond iscapacidad.es/Informes_new.html. 53 For further details on a theoretical analysis of Article 33(3) see the theoretical part of this book.

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Therefore, while Article 33(3) seems to refer specifically to the monitoring process, the connection with Article 4(3) and with a comprehensive interpretation of the whole treaty, it seems quite clear that the mandatory participation of persons with disabilities should be ensured by the State both in relation to ‘implementation’ and ‘monitoring’ of the CRPD. At governmental level, there is no record or indication that persons with disabilities and/or representative organisations are in some way included in the decision making process of application of the CRPD at national level within the designated ‘focal point’ (i.e. the DirectorateGeneral on Policies to Support Disability). As referred above, the Directorate-General has among its functions the ‘promotion of cooperation with organisations and other entities of persons with disabilities and their families, and the coordination and monitoring of consultative bodies on disability’. A lower rank office is entitled to coordinate this function, namely the ‘General Sub-Directorate for Participation and Trust Entities’ (Subdirección General de Participación y Entidades Tuteladas). On a more general level, the Government has created in 2005 the so-called ‘State Council of Non-Governmental Organisations of Social Action’ (Consejo Estatal de Organizaciones no Gubernamentales de Acción Social).54 The mission of this body is to promote the participation of nongovernmental organisations in the elaboration of social policies. To this end the Council can advise and propose measures in favour of the most vulnerable social groups. While the Council is clearly a body created to promote participation of civil society in the design and implementation of public policies and it inserted within the Ministry of Health and Social Policy, it has merely a consultative status and deals generally with social issues, which includes but not restricts to disability. Perhaps a good option to use the Council as a bridge for the participation of persons with disabilities in the application of the CRPD by the Spanish government could be to create a specialised working group to deal with this issue.55 As for the coordination mechanism, the NDC has a much clearer and active participation of persons with disabilities. The NDC is composed of 16 representatives of organisations of persons with disabilities, and these representatives are entitled to vote in the decision making. These 54 According to Royal Decree 235/2005 of March 4. 55 The Council has currently five working groups: 1) strategic plan for civil society social action, 2) social, labour and rural inclusion; 3) legislation and funding; 4) gender and equality; and 5) volunteering.



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organisations are selected by the head of the Ministry of Health among the most representative organisations of national reach and covering the different types of disabilities. In relation to the independent mechanism, the compliance with Article 33(3) in Spain seems to be covered since this function is carried out by an umbrella organisation for DPOs, as indicated above. In this respect, the creation of the Support Committee56 by CERMI in order to ensure the participation of the civil society has provided a more participatory platform for the monitoring process in line with the Paris Principles. Aside from DOPs and the government, the Support Committee has representation from general human rights organisations, regional and local authorities, academics and experts, labor unions, employer’s organisations, ombudsman, and the judicial power. Conclusion The process for complying with Article 33 within the Spanish context was erratic and rather slow. Not until the moment of summiting the State’s initial report under Article 35, the Spanish government acknowledged Article 33 as a real priority. At last the government has chosen to allocate the focal point and the coordinating mechanism pursuant Article 33(1) under the competencies of the Ministry of Health. Besides the ideological effect of this political decision, the truth is that neither the focal point nor the coordination mechanism seems to have adequate political rank or hierarchy to implement a mainstreamed policy according to the obligations and challenges set forth under CRPD. As regards the independent mechanisms, the Spanish government has opted to designate an umbrella organisation for DPOs. This appointment is quite unique in relation to comparable experiences in other States Parties. On the bright side, Spanish experience can be highlighted as positive in the sense that recognises and empowers DPOs in the monitoring process. In this respect, the framework seems to have legitimacy, background and structure to effectively promote, protect and monitor the implementation of the CRPD. It can meet most the Paris Principles requirements

56 Referred in Section III b).

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and can, and have done so far, promotion, protection and monitoring of the rights of persons with disabilities in Spain. However, there are still two important issues which will need further developments. On the one hand, the government has not officially allocated funds to CERMI to become an effective national monitoring body. In this respect, and in order to meet the ‘independence’ requirement of both the CRPD and the Paris Principles, it should be advisable that the necessary funds should be contemplated within the State‘s general budget (Presupuestos Generales del Estado) and for a whole legislative term. On the other hand, and as indicated above, it is still unclear how Spain will deal with a possible overlap between CERMI and the People’s Ombudsman in relation to Article 33(2). Both institutions have equal status on the monitoring process. The Ombudsman office has also formal representation before the Support Committee created by CERMI.

ANNEX

UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES Preamble The States Parties to the present Convention, (a) Recalling the principles proclaimed in the Charter of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world, (b) Recognizing that the United Nations, in the Universal Declaration of  Human Rights and in the International Covenants on Human Rights, has proclaimed and agreed that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind, (c) Reaffirming the universality, indivisibility, interdependence and inter­ relatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoy­ ment without discrimination, (d)  Recalling the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights, the International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, the Convention on the Rights of the Child, and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families, (e) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others, (f)  Recognizing the importance of the principles and policy guidelines contained in the World Programme of Action concerning Disabled Persons and in the Standard Rules on the Equalization of Oppor­ tunities  for Persons with Disabilities in influencing the promotion,

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formulation and evaluation of the policies, plans, programmes and actions at the national, regional and international levels to further equalize opportunities for persons with disabilities,   (g) Emphasizing the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development,      (h) Recognizing also that discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person,        (i) Recognizing further the diversity of persons with disabilities,        ( j) Recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support,      (k) Concerned that, despite these various instruments and undertakings, persons with disabilities continue to face barriers in their participa­ tion as equal members of society and violations of their human rights in all parts of the world,          (l) Recognizing the importance of international cooperation for improv­ ing the living conditions of persons with disabilities in every country, particularly in developing countries, (m) Recognizing the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental free­ doms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty,     (n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,      (o) Considering that persons with disabilities should have the oppo­ rtunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them,      (p) Concerned about the difficult conditions faced by persons with dis­ abilities who are subject to multiple or aggravated forms of discrimi­ nation on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status,

    convention on the rights of persons with disabilities217      (q) Recognizing that women and girls with disabilities are often at greater risk, both within and outside the of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation,         (r) Recognizing that children with disabilities should have full enjoy­ ment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end under­ taken by States Parties to the Convention on the Rights of the Child,        (s) Emphasizing the need to incorporate a gender perspective in all efforts to promote the full enjoyment of human rights and funda­ mental freedoms by persons with disabilities,        (t) Highlighting the fact that the majority of persons with disabilities live in conditions of poverty, and in this regard recognizing the criti­ cal need to address the negative impact of poverty on persons with disabilities,       (u) Bearing in mind that conditions of peace and security based on full respect for the purposes and principles contained in the Charter of the United Nations and observance of applicable human rights instruments are indispensable for the full protection of persons with disabilities, in particular during armed conflicts and foreign occupation,        (v)  Recognizing the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms,  (w) Realizing that the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsibil­ ity to strive for the promotion and observance of the rights recog­ nized in the International Bill of Human Rights,   (x) Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of per­ sons with disabilities,   (y) Convinced that a comprehensive and integral international conven­ tion to promote and protect the rights and dignity of persons with disabilities will make a significant contribution to redressing the pro­ found social disadvantage of persons with disabilities and promote

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their participation in the civil, political, economic, social and cultural spheres with equal opportunities, in both developing and developed countries, Have agreed as follows : Article 1 – Purpose The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. 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. Article 2 – Definitions For the purposes of the present Convention:

“Communication” includes languages, display of text, Braille, tactile com­ munication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology; “Language” includes spoken and signed languages and other forms of nonspoken languages; “Discrimination on the basis of disability” means any distinction, exclu­ sion   or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental free­ doms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation; “Reasonable accommodation” means necessary and appropriate modifica­ tion and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms; “Universal design” means the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, with­ out the need for adaptation or specialized design. “Universal design” shall not exclude assistive devices for particular groups of persons with disabili­ ties where this is needed.

    convention on the rights of persons with disabilities219 Article 3 – General Principles The principles of the present Convention shall be:   (a) Respect for inherent dignity, individual autonomy including the free­ dom to make one’s own choices, and independence of persons; (b) Non-discrimination;   (c) Full and effective participation and inclusion in society; (d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;  (e) Equality of opportunity;    (f) Accessibility;   (g) Equality between men and women; (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Article 4 – General Obligations 1. States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with dis­ abilities without discrimination of any kind on the basis of disability. To this end, States Parties undertake:   (a) To adopt all appropriate legislative, administrative and other mea­ sures for the implementation of the rights recognized in the pres­ ent Convention;   (b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;   (c) To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes;   (d) To refrain from engaging in any act or practice that is inconsistent with the present Convention and to ensure that public authorities and institutions act in conformity with the present Convention;   (e) To take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise; (f) To undertake or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the present Convention, which should require the mini­ mum possible adaptation and the least cost to meet the specific

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needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines;  (g) To undertake or promote research and development of, and to pro­ mote the availability and use of new technologies, including infor­ mation and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost; (h) To provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities;     (i) To promote the training of professionals and staff working with persons with disabilities in the rights recognized in this Convention so as to better provide the assistance and services guaranteed by those rights. 2. With regard to economic, social and cultural rights, each State Party undertakes to take measures to the maximum of its available resources and, where needed, within the framework of international coopera­ tion, with a view to achieving progressively the full realization of these  rights, without prejudice to those obligations contained in the present Convention that are immediately applicable according to international law. 3. In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their rep­ resentative organizations. 4. Nothing in the present Convention shall affect any provisions which are more conducive to the realization of the rights of persons with dis­ abilities and which may be contained in the law of a State Party or international law in force for that State. There shall be no restriction upon or derogation from any of the human rights and fundamental freedoms recognized or existing in any State Party to the present Convention pursuant to law, conventions, regulation or custom on the pretext that the present Convention does not recognize such rights or freedoms or that it recognizes them to a lesser extent. 5. The provisions of the present Convention shall extend to all parts of federal states without any limitations or exceptions.

    convention on the rights of persons with disabilities221 Article 5 – Equality and Non-Discrimination 1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law. 2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds. 3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accom­ modation is provided. 4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimi­ nation under the terms of the present Convention. Article 6 – Women with Disabilities 1. States Parties recognize that women and girls with disabilities are sub­ ject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms. 2. States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, for the pur­ pose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention. Article 7 – Children with Disabilities 1. States Parties shall take all necessary measures to ensure the full enjoy­ ment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. 2. In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration. 3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

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annex Article 8 – Awareness-raising

1. States Parties undertake to adopt immediate, effective and appropriate measures:   (a) To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;   (b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;   (c) To promote awareness of the capabilities and contributions of per­ sons with disabilities. 2. Measures to this end include:   (a) Initiating and maintaining effective public awareness campaigns designed:        (i)  To nurture receptiveness to the rights of persons with disabilities;       (ii) To promote positive perceptions and greater social awareness towards persons with disabilities;     (iii) To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market;   (b) Fostering at all levels of the education system, including in all chil­ dren from an early age, an attitude of respect for the rights of per­ sons with disabilities;   (c) Encouraging all organs of the media to portray persons with dis­ abilities in a manner consistent with the purpose of the present Convention;   (d)  Promoting awareness-training programmes regarding persons with disabilities and the rights of persons with disabilities. Article 9 – Accessibility 1. To enable persons with disabilities to live independently and partici­ pate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and

    convention on the rights of persons with disabilities223 services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elim­ ination of obstacles and barriers to accessibility, shall apply to, inter alia:   (a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;   (b) Information, communications and other services, including elec­ tronic services and emergency services. 2. States Parties shall also take appropriate measures to:   (a) Develop, promulgate and monitor the implementation of mini­ mum standards and guidelines for the accessibility of facilities and services open or provided to the public;   (b) Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;   (c) Provide training for stakeholders on accessibility issues facing per­ sons with disabilities;   (d) Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;   (e) Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;   (f) Promote other appropriate forms of assistance and support to per­ sons with disabilities to ensure their access to information;   (g) Promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;   (h) Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost. Article 10 – Right to Life States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

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Article 11 – Situations of Risk and Humanitarian Emergencies States Parties shall take, in accordance with their obligations under inter­ national law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natu­ ral disasters. Article 12 – Equal Recognition before the Law 1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. 2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. 3. States Parties shall take appropriate measures to provide access by per­ sons with disabilities to the support they may require in exercising their legal capacity. 4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tai­ lored to the person’s circumstances, apply for the shortest time possi­ ble and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be propor­ tional to the degree to which such measures affect the person’s rights and interests. 5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own finan­ cial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property. Article 13 – Access to Justice 1. States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the

    convention on the rights of persons with disabilities225 provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investiga­ tive and other preliminary stages. 2. In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff. Article 14 – Liberty and Security of the Person 1. States Parties shall ensure that persons with disabilities, on an equal basis with others:   (a) Enjoy the right to liberty and security of person;   (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty. 2. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation. Article 15 – Freedom from Torture or Cruel, Inhuman or Degrading Treatment or Punishment 1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected with­ out his or her free consent to medical or scientific experimentation. 2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment. Article 16 – Freedom from Exploitation, Violence and Abuse 1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with

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disabilities, both within and outside the, from all forms of exploitation, violence and abuse, including their gender-based aspects. 2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appro­ priate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive. 3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities. 4. States Parties shall take all appropriate measures to promote the physi­ cal, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provi­ sion of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account genderand age-specific needs. 5. States Parties shall put in place effective legislation and policies, includ­ ing women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted. Article 17 – Protecting the Integrity of the Person Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others. Article 18 – Liberty of Movement and Nationality 1. States Parties shall recognize the rights of persons with disabilities to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others, including by ensuring that persons with disabilities:

    convention on the rights of persons with disabilities227   (a) Have the right to acquire and change a nationality and are not deprived of their nationality arbitrarily or on the basis of disability;   (b) Are not deprived, on the basis of disability, of their ability to obtain, possess and utilize documentation of their nationality or other documentation of identification, or to utilize relevant processes such as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement;   (c) Are free to leave any country, including their own;   (d) Are not deprived, arbitrarily or on the basis of disability, of the right to enter their own country. 2. Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents. Article 19 – Living Independently and being Included in the Community States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoy­ ment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:   (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;   (b) Persons with disabilities have access to a range of in-, residential and other community support services, including personal assis­ tance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;   (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. Article 20 – Personal Mobility States Parties shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities, including by:

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  (a) Facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost;   (b) Facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at afford­ able cost;   (c) Providing training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities;   (d) Encouraging entities that produce mobility aids, devices and assis­ tive technologies to take into account all aspects of mobility for persons with disabilities. Article 21 – Freedom of Expression and Opinion, and Access to Information States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opin­ ion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communica­ tion of their choice, as defined in article 2 of the present Convention, including by:   (a) Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropri­ ate to different kinds of disabilities in a timely manner and without additional cost;   (b) Accepting and facilitating the use of sign languages, Braille, aug­ mentative and alternative communication, and all other accessi­ ble means, modes and formats of communication of their choice by persons with disabilities in official interactions;   (c) Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities;   (d) Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities;   (e) Recognizing and promoting the use of sign languages.

    convention on the rights of persons with disabilities229 Article 22 – Respect for Privacy 1. No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, or correspondence or other types of communication or to unlawful attacks on his or her honour and repu­ tation. Persons with disabilities have the right to the protection of the law against such interference or attacks. 2. States Parties shall protect the privacy of personal, health and rehabili­ tation information of persons with disabilities on an equal basis with others. Article 23 – Respect for and the Family 1. States Parties shall take effective and appropriate measures to elimi­ nate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that:   (a) The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full con­ sent of the intending spouses is recognized;   (b) The rights of persons with disabilities to decide freely and respon­ sibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided;   (c) Persons with disabilities, including children, retain their fertility on an equal basis with others. 2. States Parties shall ensure the rights and responsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. 3. States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of

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children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families. 4. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities sub­ ject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents. 5. States Parties shall, where the immediate family is unable to care for a child with disabilities, undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting. Article 24 – Education 1. States Parties recognize the right of persons with disabilities to educa­ tion. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and life long learning directed to:   (a) The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fun­ damental freedoms and human diversity;   (b) The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential;   (c) Enabling persons with disabilities to participate effectively in a free society. 2. In realizing this right, States Parties shall ensure that:   (a) Persons with disabilities are not excluded from the general educa­ tion system on the basis of disability, and that children with dis­ abilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability;   (b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;   (c) Reasonable accommodation of the individual’s requirements is provided;   (d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education;

    convention on the rights of persons with disabilities231   (e) Effective individualized support measures are provided in environ­ ments that maximize academic and social development, consis­ tent with the goal of full inclusion. 3. States Parties shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including:   (a) Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring;   (b) Facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community;   (c) Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropri­ ate  languages and modes and means of communication for the individual, and in environments which maximize academic and social development. 4. In order to help ensure the realization of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education. Such training shall incorporate disability awareness and the use of appropri­ ate augmentative and alternative modes, means and formats of com­ munication, educational techniques and materials to support persons with disabilities. 5. States Parties shall ensure that persons with disabilities are able to access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others. To this end, States Parties shall ensure that reasonable accommodation is provided to persons with disabilities. Article 25 – Health States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimi­ nation on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In par­ ticular, States Parties shall:

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  (a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as pro­ vided to other persons, including in the area of sexual and repro­ ductive health and population-based public health programmes;   (b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identifica­ tion and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among chil­ dren and older persons;   (c) Provide these health services as close as possible to people’s own communities, including in rural areas;   (d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with dis­ abilities through training and the promulgation of ethical stan­ dards for public and private health care;   (e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insur­ ance is permitted by national law, which shall be provided in a fair and reasonable manner;   (f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability. Article 26 – Habilitation and Rehabilitation 1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, educa­ tion and social services, in such a way that these services and programmes:   (a) Begin at the earliest possible stage, and are based on the multidis­ ciplinary assessment of individual needs and strengths;   (b) Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with

    convention on the rights of persons with disabilities233 disabilities as close as possible to their own communities, includ­ ing in rural areas. 2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and reha­ bilitation services. 3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabili­ ties, as they relate to habilitation and rehabilitation. Article 27 – Work and Employment 1. States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realiza­ tion of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, includ­ ing through legislation, to, inter alia:   (a) Prohibit discrimination on the basis of disability with regard to all matters concerning all forms of employment, including condi­ tions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions;   (b) Protect the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances;   (c) Ensure that persons with disabilities are able to exercise their labour and trade union rights on an equal basis with others;   (d) Enable persons with disabilities to have effective access to general technical and vocational guidance programmes, placement ser­ vices and vocational and continuing training;   (e) Promote employment opportunities and career advancement for persons with disabilities in the labour market, as well as assistance in finding, obtaining, maintaining and returning to employment;   (f) Promote opportunities for self-employment, entrepreneurship, the development of cooperatives and starting one’s own business;

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  (g) Employ persons with disabilities in the public sector;   (h) Promote the employment of persons with disabilities in the pri­ vate sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures;    (i) Ensure that reasonable accommodation is provided to persons with disabilities in the workplace;    (j) Promote the acquisition by persons with disabilities of work expe­ rience in the open labour market;   (k) Promote vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities. 2. States Parties shall ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour. Article 28 – Adequate Standard of Living and Social Protection 1. States Parties recognize the right of persons with disabilities to an ade­ quate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improve­ ment of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability. 2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimi­ nation on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures:   (a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable ser­ vices, devices and other assistance for disability-related needs;   (b)  To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabili­ ties, to social protection programmes and poverty reduction programmes;   (c) To ensure access by persons with disabilities and their families liv­ ing in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counsel­ ling, financial assistance and respite care;

    convention on the rights of persons with disabilities235   (d) To ensure access by persons with disabilities to public housing programmes;   (e) To ensure equal access by persons with disabilities to retirement benefits and programmes. Article 29 – Participation in Political and Public Life States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to:   (a) Ensure that persons with disabilities can effectively and fully par­ ticipate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by:          (i) Ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use;        (ii) Protecting the right of persons with disabilities to vote by secret ballot in elections and public referendums without intimidation, and to stand for elections, to effectively hold office and perform all public functions at all levels of govern­ ment, facilitating the use of assistive and new technologies where appropriate;      (iii) Guaranteeing the free expression of the will of persons with disabilities as electors and to this end, where necessary, at their request, allowing assistance in voting by a person of their own choice;   (b)  Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including:      (i) Participation in non-governmental organizations and associ­ ations concerned with the public and political life of the country, and in the activities and administration of political parties;    (ii) Forming and joining organizations of persons with disabili­ ties to represent persons with disabilities at international, national, regional and local levels.

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1. States Parties recognize the right of persons with disabilities to take part on an equal basis with others in cultural life, and shall take all appropriate measures to ensure that persons with disabilities:   (a) Enjoy access to cultural materials in accessible formats;   (b) Enjoy access to television programmes, films, theatre and other cultural activities, in accessible formats;   (c) Enjoy access to places for cultural performances or services, such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national cultural importance. 2. States Parties shall take appropriate measures to enable persons with disabilities to have the opportunity to develop and utilize their cre­ ative, artistic and intellectual potential, not only for their own benefit, but also for the enrichment of society. 3. States Parties shall take all appropriate steps, in accordance with inter­ national law, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials. 4. Persons with disabilities shall be entitled, on an equal basis with oth­ ers, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture. 5. With a view to enabling persons with disabilities to participate on an equal basis with others in recreational, leisure and sporting activities, States Parties shall take appropriate measures:   (a) To encourage and promote the participation, to the fullest extent possible, of persons with disabilities in mainstream sporting activ­ ities at all levels;   (b) To ensure that persons with disabilities have an opportunity to organize, develop and participate in disability-specific sporting and recreational activities and, to this end, encourage the provi­ sion, on an equal basis with others, of appropriate instruction, training and resources;   (c) To ensure that persons with disabilities have access to sporting, recreational and tourism venues;   (d) To ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system;

    convention on the rights of persons with disabilities237   (e) To ensure that persons with disabilities have access to services from those involved in the organization of recreational, tourism, leisure and sporting activities. Article 31 – Statistics and Data Collection 1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and imple­ ment policies to give effect to the present Convention. The process of collecting and maintaining this information shall:   (a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities;   (b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the col­ lection and use of statistics. 2. The information collected in accordance with this article shall be dis­ aggregated, as appropriate, and used to help assess the implementation of States Parties’ obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights. 3. States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others. Article 32 – International Cooperation 1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will under­ take appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant interna­ tional and regional organizations and civil society, in particular organi­ zations of persons with disabilities. Such measures could include, inter alia:   (a) Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to per­ sons with disabilities;

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  (b) Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programmes and best practices;   (c) Facilitating cooperation in research and access to scientific and technical knowledge;   (d) Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies. 2. The provisions of this article are without prejudice to the obligations of each State Party to fulfil its obligations under the present Convention. Article 33 – National Implementation and Monitoring 1. States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall give due consideration to the establishment or designation of a coordi­ nation mechanism within government to facilitate related action in different sectors and at different levels. 2. States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relat­ ing to the status and functioning of national institutions for protection and promotion of human rights. 3. Civil society, in particular persons with disabilities and their represen­ tative organizations, shall be involved and participate fully in the moni­ toring process. Article 34 – Committee on the Rights of Persons with Disabilities 1. There shall be established a Committee on the Rights of Persons with Disabilities (hereafter referred to as “the Committee”), which shall carry out the functions hereinafter provided. 2. The Committee shall consist, at the time of entry into force of the present Convention, of twelve experts. After an additional sixty ratifi­ cations or accessions to the Convention, the membership of the

    convention on the rights of persons with disabilities239 Committee shall increase by six members, attaining a maximum num­ ber of eighteen members. 3. The members of the Committee shall serve in their personal capacity and shall be of high moral standing and recognized competence and experience in the field covered by the present Convention. When nominating their candidates, States Parties are invited to give due consideration to the provision set out in article 4.3 of the present Convention. 4. The members of the Committee shall be elected by States Parties, con­ sideration being given to equitable geographical distribution, repre­ sentation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities. 5. The members of the Committee shall be elected by secret ballot from a list of persons nominated by the States Parties from among their nationals at meetings of the Conference of States Parties. At those meetings, for which two thirds of States Parties shall constitute a quo­ rum, the persons elected to the Committee shall be those who obtain the largest number of votes and an absolute majority of the votes of the representatives of States Parties present and voting. 6. The initial election shall be held no later than six months after the date of entry into force of the present Convention. At least four months before the date of each election, the Secretary-General of the United Nations shall address a letter to the States Parties inviting them to submit the nominations within two months. The SecretaryGeneral shall subsequently prepare a list in alphabetical order of all persons thus nominated, indicating the State Parties which have nomi­ nated them, and shall submit it to the States Parties to the present Convention. 7. The members of the Committee shall be elected for a term of four years. They shall be eligible for re-election once. However, the term of six of the members elected at the first election shall expire at the end of two years; immediately after the first election, the names of these six members shall be chosen by lot by the chairperson of the meeting referred to in paragraph 5 of this article. 8. The election of the six additional members of the Committee shall be held on the occasion of regular elections, in accordance with the rele­ vant provisions of this article. 9. If a member of the Committee dies or resigns or declares that for any other cause she or he can no longer perform her or his duties, the

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State Party which nominated the member shall appoint another expert possessing the qualifications and meeting the requirements set out in the relevant provisions of this article, to serve for the remainder of the term. 10. The Committee shall establish its own rules of procedure. 11. The Secretary-General of the United Nations shall provide the neces­ sary staff and facilities for the effective performance of the functions of the Committee under the present Convention, and shall convene its initial meeting. 12. With the approval of the General Assembly, the members of the Committee established under the present Convention shall receive emoluments from United Nations resources on such terms and condi­ tions as the Assembly may decide, having regard to the importance of the Committee’s responsibilities. 13. The members of the Committee shall be entitled to the facilities, privi­ leges and immunities of experts on mission for the United Nations as laid down in the relevant sections of the Convention on the Privileges and Immunities of the United Nations. Article 35 – Reports by States Parties 1. Each State Party shall submit to the Committee, through the SecretaryGeneral of the United Nations, a comprehensive report on measures taken to give effect to its obligations under the present Convention and on the progress made in that regard, within two years after the entry into force of the present Convention for the State Party concerned. 2. Thereafter, States Parties shall submit subsequent reports at least every four years and further whenever the Committee so requests. 3. The Committee shall decide any guidelines applicable to the content of the reports. 4. A State Party which has submitted a comprehensive initial report to the Committee need not, in its subsequent reports, repeat information pre­ viously provided. When preparing reports to the Committee, States Parties are invited to consider doing so in an open and transparent pro­ cess and to give due consideration to the provision set out in article 4.3 of the present Convention. 5. Reports may indicate factors and difficulties affecting the degree of ful­ filment of obligations under the present Convention.

    convention on the rights of persons with disabilities241 Article 36 – Consideration of Reports 1. Each report shall be considered by the Committee, which shall make such suggestions and general recommendations on the report as it may consider appropriate and shall forward these to the State Party con­ cerned. The State Party may respond with any information it chooses to the Committee. The Committee may request further information from States Parties relevant to the implementation of the present Convention. 2. If a State Party is significantly overdue in the submission of a report, the Committee may notify the State Party concerned of the need to examine the implementation of the present Convention in that State Party, on the basis of reliable information available to the Committee, if the relevant report is not submitted within three months following the notification. The Committee shall invite the State Party concerned to participate in such examination. Should the State Party respond by submitting the relevant report, the provisions of paragraph 1 of this article will apply. 3. The Secretary-General of the United Nations shall make available the reports to all States Parties. 4. States Parties shall make their reports widely available to the public in their own countries and facilitate access to the suggestions and general recommendations relating to these reports. 5. The Committee shall transmit, as it may consider appropriate, to the specialized agencies, funds and programmes of the United Nations, and other competent bodies, reports from States Parties in order to address a request or indication of a need for technical advice or assis­ tance contained therein, along with the Committee’s observations and recommendations, if any, on these requests or indications. Article 37 – Cooperation between States Parties and the Committee 1. Each State Party shall cooperate with the Committee and assist its members in the fulfilment of their mandate. 2. In its relationship with States Parties, the Committee shall give due consideration to ways and means of enhancing national capacities for the implementation of the present Convention, including through international cooperation.

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Article 38 – Relationship of the Committee with Other Bodies In order to foster the effective implementation of the present Convention and to encourage international cooperation in the field covered by the present Convention: (a) The specialized agencies and other United Nations organs shall be entitled to be represented at the consideration of the implementation of such provisions of the present Convention as fall within the scope of their mandate. The Committee may invite the specialized agencies and other competent bodies as it may consider appropriate to provide expert advice on the implementation of the Convention in areas fall­ ing within the scope of their respective mandates. The Committee may invite specialized agencies and other United Nations organs to submit reports on the implementation of the Convention in areas fall­ ing within the scope of their activities; (b) The Committee, as it discharges its mandate, shall consult, as appro­ priate, other relevant bodies instituted by international human rights treaties, with a view to ensuring the consistency of their respective reporting guidelines, suggestions and general recommendations, and avoiding duplication and overlap in the performance of their functions. Article 39 – Report of the Committee The Committee shall report every two years to the General Assembly and to the Economic and Social Council on its activities, and may make sug­ gestions and general recommendations based on the examination of reports and information received from the States Parties. Such suggestions and general recommendations shall be included in the report of the Committee together with comments, if any, from States Parties. Article 40 – Conference of States Parties 1. The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention. 2. No later than six months after the entry into force of the present Convention, the Conference of the States Parties shall be convened by the Secretary-General of the United Nations. The subsequent meetings

    convention on the rights of persons with disabilities243 shall be convened by the Secretary-General of the United Nations bien­ nially or upon the decision of the Conference of States Parties. Article 41 – Depositary The Secretary-General of the United Nations shall be the depositary of the present Convention. Article 42 – Signature The present Convention shall be open for signature by all States and by regional integration organizations at United Nations Headquarters in New York as of 30 March 2007. Article 43 – Consent to be Bound The present Convention shall be subject to ratification by signatory States and to formal confirmation by signatory regional integration organiza­ tions. It shall be open for accession by any State or regional integration organization which has not signed the Convention. Article 44 – Regional Integration Organizations 1. “Regional integration organization” shall mean an organization consti­ tuted by sovereign States of a given region, to which its member States have transferred competence in respect of matters governed by this Convention. Such organizations shall declare, in their instruments of formal confirmation or accession, the extent of their competence with respect to matters governed by this Convention. Subsequently, they shall inform the depositary of any substantial modification in the extent of their competence. 2. References to “States Parties” in the present Convention shall apply to such organizations within the limits of their competence. 3. For the purposes of article 45, paragraph 1, and article 47, paragraphs 2 and 3, any instrument deposited by a regional integration organization shall not be counted. 4. Regional integration organizations, in matters within their compe­ tence, may exercise their right to vote in the Conference of States

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Parties, with a number of votes equal to the number of their member States that are Parties to this Convention. Such an organization shall not exercise its right to vote if any of its member States exercises its right, and vice versa. Article 45 – Entry into Force 1. The present Convention shall enter into force on the thirtieth day after the deposit of the twentieth instrument of ratification or accession. 2. For each State or regional integration organization ratifying, formally confirming or acceding to the Convention after the deposit of the twentieth such instrument, the Convention shall enter into force on the thirtieth day after the deposit of its own such instrument. Article 46 – Reservations 1. Reservations incompatible with the object and purpose of the present Convention shall not be permitted. 2. Reservations may be withdrawn at any time. Article 47 – Amendments 1. Any State Party may propose an amendment to the present Convention and submit it to the Secretary-General of the United Nations. The Secretary-General shall communicate any proposed amendments to States Parties, with a request to be notified whether they favour a conference of States Parties for the purpose of considering and decid­ ing upon the proposals. In the event that, within four months from the date of such communication, at least one third of the States Parties favour such a conference, the Secretary-General shall convene the conference under the auspices of the United Nations. Any amend­ ment adopted by a majority of two thirds of the States Parties present and voting shall be submitted by the Secretary-General to the General Assembly for approval and thereafter to all States Parties for acceptance. 2. An amendment adopted and approved in accordance with paragraph 1 of this article shall enter into force on the thirtieth day after the num­ ber of instruments of acceptance deposited reaches two thirds of the

    convention on the rights of persons with disabilities245 number of States Parties at the date of adoption of the amendment. Thereafter, the amendment shall enter into force for any State Party on the thirtieth day following the deposit of its own instrument of accep­ tance. An amendment shall be binding only on those States Parties which have accepted it. 3. If so decided by the Conference of States Parties by consensus, an amendment adopted and approved in accordance with paragraph 1 of this article which relates exclusively to articles 34, 38, 39 and 40 shall enter into force for all States Parties on the thirtieth day after the num­ ber of instruments of acceptance deposited reaches two thirds of the number of States Parties at the date of adoption of the amendment. Article 48 – Denunciation A State Party may denounce the present Convention by written notifica­ tion to the Secretary-General of the United Nations. The denunciation shall become effective one year after the date of receipt of the notification by the Secretary-General. Article 49 – Accessible Format The text of the present Convention shall be made available in accessible formats. Article 50 – Authentic Texts The Arabic, Chinese, English, French, Russian and Spanish texts of the present Convention shall be equally authentic. In witness thereof the undersigned plenipotentiaries, being duly autho­ rized thereto by their respective Governments, have signed the present Convention.

PRINCIPLES RELATING TO THE STATUS OF NATIONAL INSTITUTIONS FOR THE PROMOTION AND PROTECTION OF HUMAN RIGHTS (PARIS PRINCIPLES) Competence and Responsibilities 1. A national institution shall be vested with competence to promote and protect human rights. 2. A national institution shall be given as broad a mandate as possible, which shall be clearly set forth in a constitutional or legislative text, specifying its composition and its sphere of competence. 3. A national institution shall, inter alia, have the following responsibilities:   (a) To submit to the Government, Parliament and any other competent body, on an advisory basis either at the request of the authorities concerned or through the exercise of its power to hear a matter without higher referral, opinions, recommendations, proposals and reports on any matters concerning the promotion and protection of human rights; the national institution may decide to publicize them; these opinions, recommendations, proposals and reports, as well as any prerogative of the national institution, shall relate to the following areas:      (i) Any legislative or administrative provisions, as well as provisions relating to judicial organizations, intended to preserve and extend the protection of human rights; in that connection, the national institution shall examine the legislation and administrative provisions in force, as well as bills and proposals, and shall make such recommendations as it deems appropriate in order to ensure that these provisions conform to the fundamental principles of human rights; it shall, if necessary, recommend the adoption of new legislation, the amendment of legislation in force and the adoption or amendment of administrative measures;   (ii)  Any situation of violation of human rights which it decides to take up;   (iii) The preparation of reports on the national situation with regard to human rights in general, and on more specific matters;

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  (iv) Drawing the attention of the Government to situations in any part of the country where human rights are violated and making proposals to it for initiatives to put an end to such situations and, where necessary, expressing an opinion on the positions and reactions of the Government;   (b) To promote and ensure the harmonization of national legislation, regulations and practices with the international human rights instruments to which the State is a party, and their effective implementation;   (c) To encourage ratification of the above-mentioned instruments or accession to those instruments, and to ensure their implementation;   (d) To contribute to the reports which States are required to submit to United Nations bodies and committees, and to regional institutions, pursuant to their treaty obligations and, where necessary, to express an opinion on the subject, with due respect for their independence;   (e) To cooperate with the United Nations and any other orgnization in the United Nations system, the regional institutions and the national institutions of other countries that are competent in the areas of the protection and promotion of human rights;   (f) To assist in the formulation of programmes for the teaching of, and research into, human rights and to take part in their execution in schools, universities and professional circles;   (g) To publicize human rights and efforts to combat all forms of discrimination, in particular racial discrimination, by increasing public awareness, especially through information and education and by making use of all press organs. Composition and Guarantees of Independence and Pluralism 1. The composition of the national institution and the appointment of its members, whether by means of an election or otherwise, shall be established in accordance with a procedure which affords all necessary guarantees to ensure the pluralist representation of the social forces (of civilian society) involved in the protection and promotion of human rights, particularly by powers which will enable effective cooperation to be established with, or through the presence of, representatives of:



paris principles249

 (a) Non-governmental organizations responsible for human rights and efforts to combat racial discrimination, trade unions, concerned social and professional organizations, for example, associations of lawyers, doctors, journalists and eminent scientists;  (b) Trends in philosophical or religious thought;  (c) Universities and qualified experts;  (d) Parliament;  (e) Government departments (if these are included, their representatives should participate in the deliberations only in an advisory capacity). 2. The national institution shall have an infrastructure which is suited to the smooth conduct of its activities, in particular adequate funding. The purpose of this funding should be to enable it to have its own staff and premises, in order to be independent of the Government and not be subject to financial control which might affect its independence. 3. In order to ensure a stable mandate for the members of the national institution, without which there can be no real independence, their appointment shall be effected by an official act which shall establish the specific duration of the mandate. This mandate may be renewable, provided that the pluralism of the institution’s membership is ensured. Methods of Operation Within the framework of its operation, the national institution shall: (a)  Freely consider any questions falling within its competence, whether they are submitted by the Government or taken up by it without referral to a higher authority, on the proposal of its members or of any petitioner; (b) Hear any person and obtain any information and any docu­ ments  necessary for assessing situations falling within its competence; (c) Address public opinion directly or through any press organ, particularly in order to publicize its opinions and recommendations; (d) Meet on a regular basis and whenever necessary in the presence of all its members after they have been duly concerned; (e) Establish working groups from among its members as necessary, and set up local or regional sections to assist it in discharging its functions;

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(f) Maintain consultation with the other bodies, whether jurisdictional or otherwise, responsible for the promotion and protection of human rights (in particular, ombudsmen, mediators and similar institutions); (g) In view of the fundamental role played by the non-governmental organizations in expanding the work of the national institutions, develop relations with the non-governmental organizations devoted to promoting and protecting human rights, to economic and social development, to combating racism, to protecting particularly vulnerable groups (especially children, migrant workers, refugees, physically and mentally disabled persons) or to specialized areas. Additional Principles Concerning the Status of Commissions with Quasi-Jurisdictional Competence A national institution may be authorized to hear and consider complaints and petitions concerning individual situations. Cases may be brought before it by individuals, their representatives, third parties, nongovernmental organizations, associations of trade unions or any other representative organizations. In such circumstances, and without prejudice to the principles stated above concerning the other powers of the commissions, the functions entrusted to them may be based on the following principles: (a) Seeking an amicable settlement through conciliation or, within the limits prescribed by the law, through binding decisions or, where necessary, on the basis of confidentiality; (b) Informing the party who filed the petition of his rights, in particular the remedies available to him, and promoting his access to them; (c) Hearing any complaints or petitions or transmitting them to any other competent authority within the limits prescribed by the law; (d) Making recommendations to the competent authorities, especially by proposing amendments or reforms of the laws, regulations and administrative practices, especially if they have created the difficulties encountered by the persons filing the petitions in order to assert their rights. 

INDEX Action plans 4, 25, 31, 32, 32n40, 60, 74–75, 74n20, 80, 81, 87, 93, 94, 95, 102, 128, 138, 139, 140, 173, 178, 189 Advisory boards 3, 24, 60–61, 65, 178, 179 Case studies Denmark Centre for Equal Treatment of Persons with Disabilities 70, 71, 74, 76, 86 Disabled People’s Organisations Denmark (DPOD) 6, 70, 72, 73, 74, 75, 75n22, 76, 77, 78, 86, 91, 92, 93, 94 Danish Disability Council 6, 70, 71, 71n5, 73, 76, 77, 78, 81, 82, 86–87, 88, 91, 92, 93, 94 Danish Institute for Human Rights (DIHR) xiv, 6, 42, 70, 71n9, 72, 72n13, 73, 73n16, 74, 76, 77, 78, 80, 81, 82–86, 88, 89, 90, 91, 92, 93, 94 Danish Parliamentary Ombudsman 6, 71n9, 71–72, 74, 76, 77, 82, 86, 87–90, 93, 94 Equal Treatment Board 84, 89–90, 90n49 Intra-Ministerial Committee of Civil Servants on Disability Questions 70, 70n1, 79–81, 82, 89 Ministry of Social Affairs 6, 70n1, 74, 79–81, 82, 86, 89, 92 United Kingdom Disability Committee 103, 117 Disability Lib 113 Equality and Human Rights Commission (EHRC) 7, 102–104, 105–106, 108, 117, 118 Equality Commission for Northern Ireland (ECNI) 7, 102, 106 Joint Committee for Human Rights (JCHR) 7, 100, 108 Northern Ireland Human Rights Commission (NIHRC) 7, 102, 106 Office for Disability Issues (ODI) 6, 97, 99–102, 62, 109, 115, 116 Scottish Human Rights Commission (SHRC) 7, 102, 106 UK Disabled People’s Council (UK DPC) 112–113, 115, 116

Italy Directorate-General for Inclusion and Social Policies (as focal point) 7, 129–134, 137, 146 Directorate-General for Inclusion and Social Policies (as coordination mechanism) 7, 129, 134–136, 137, 146 Italian Disability Forum 145 Ministry of Labour and Social Policies 119, 123, 125, 134, 137, 139 National Observatory on the Situation of Persons with Disabilities 7, 120, 121, 123, 124, 128, 131, 134, 135, 136–144, 146, 147 Scientific Committee 7, 138–139, 142, 143 Slovenia Advocate of the Principle of Equality 155, 165 Directorate for Persons with Disabilities 153–157, 162, 162 (Government) Council for Persons with Disabilities 7, 151, 157–165, 168, 169 Ministry of Labour, Family and Social Affairs 7, 150, 151, 153–157, 160, 162, 165, 166 National Council of Organisations of Persons with Disability 150, 154, 162n32, 163, 164, 165, 166, 167, 168 Ombudsman 152, 156, 163, 164, 167 Austria Austrian National Council of Disabled Persons (ÖAR) 178, 179, 180, 188 Federal Disability Council 178, 179 Human Rights Council 178, 188n27 Ministry of Social Affairs 7, 172, 173, 174, 176, 179, 180, 181, 185, 188, 190 Monitoring Committee 7, 172, 175, 178–188, 189, 191 Ombudsman 171, 176, 177, 178, 189 Spain Committee of Representatives of Persons with Disabilities (CERMI) 7, 196, 196n19, 204–209, 211, 212

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Directorate-General on Policies to Support Disability 7, 198–199, 202, 210 National Disability Council (NDC) 7, 199–202, 203, 204, 210 People’s Ombudsman 204, 205–206, 207, 212 Support Committee 206–208, 211, 212 Convention on the Rights of Persons with Disabilities (CRPD) Articles Article 4 (3) 91, 209, 210 Article 9 126, 133, 220 Article 12, 13, 17, 222 Article 16, 183 Article 19, 112, 126, 128, 225 Article 24, 89, 228 Article 34, 183, 243 Article 35, 101, 128, 175, 203, 211, 238 Negotiation xiii, xiv, 3, 12, 13, 13n3, 14, 55, 56, 69, 74, 75, 76, 171, 190, 193, 195, 196 Optional Protocol xiii, 14, 36, 47, 77, 78, 81, 88, 98, 108, 119, 149, 151, 153, 154, 158, 160, 175, 177, 195 Ratification xii, 2, 3, 5, 13, 14, 14n7, 17, 19, 22, 25, 56, 69, 77, 78, 79, 81, 97, 100, 120, 121, 122, 123, 124, 125, 137, 146, 149, 150, 151, 153, 157, 169, 173, 174, 175, 177, 178, 179, 180, 190, 195, 198, 236, 241, 242, 246 Reservations 3, 13n5, 97, 105, 108, 122, 150, 174, 242 Coordination mechanism Coordiniation Horizontal 23, 26, 30, 131, 135 Vertical 23, 26, 27, 28, 30, 135 Joined-up govervance 28 National disability rights agenda 26, 29, 31, 59, 65 European Court of Human Rights xii, 47, 174 Focal points Federal States / decentralised States 26, 27, 28, 30, 34, 40, 55, 131, 132, 132n31, 134, 157, 172, 173, 175, 218 Layers of government 23, 63, 131 Lead focal point 23, 24, 26, 30, 60, 64 Sub-focal points 3, 7, 30, 131, 132, 133, 135, 146 Gerard Quinn v, viii, 43

Independent mechanisms Framework 4, 6, 14, 24n30, 26, 30, 31, 32, 33, 34, 38, 39, 39n55, 43, 45, 46, 52, 53, 54, 55, 59, 61, 64, 65, 72, 74, 75, 76, 77, 78, 79, 80, 82, 86, 87, 89, 90, 91, 92, 94, 97, 98, 99, 102, 103, 106, 109, 109, 118, 119, 121, 123, 126, 126n15, 127, 131, 132, 136, 137, 141, 143, 144, 145, 147, 153, 156, 168, 177, 198, 202, 218, 236, 247 Functions Monitoring iii, v, vi, viii, ix, xi, xiii, 1, 2, 4, 5, 6, 7, 11, 13, 14, 15, 17, 18, 19, 21, 22n28, 23, 25, 27, 29, 30, 31, 32, 33, 35, 37, 39, 41, 43, 44, 45, 46, 47, 48–50, 51, 52n77, 53, 55, 57, 59, 61, 63, 64, 65, 69, 72, 74, 76, 78, 79, 82, 83, 86, 90, 91, 92, 94, 98n3, 99, 100n12, 101, 102, 105, 106, 108, 109, 110, 111, 112, 114, 115, 116, 117, 119, 120, 121, 122, 129, 1, 136, 140, 142, 143, 145, 146, 147, 149, 150, 160, 163, 165, 167, 168, 169, 171, 172n4, 174, 175, 176, 177, 178, 179, 180, 181, 182, 183, 184, 185, 186, 187, 189, 191, 193, 196, 197, 199, 201, 203, 204, 205, 206, 208, 208n49, 209, 210, 211, 212, 236 Promotion 6, 19, 30, 33, 34, 35, 37, 38, 39, 39n55, 43, 44, 45–46, 48, 50, 51, 53, 59, 63, 64, 69, 70, 72, 76, 82, 83, 86, 92, 94, 106, 107, 113, 133, 136, 143n49, 144, 146, 155, 160, 164, 166, 167, 168, 176, 182, 195, 199, 200, 201, 202, 203, 204, 205, 206, 207, 208, 208n49, 210, 211, 213, 214, 215, 217, 229, 235, 236, 245, 246, 247, 248 Protection 6, 7, 19, 33, 34, 35, 37, 38, 39, 40n59, 42, 43, 46, 47–48, 51, 53, 59, 63, 64, 70, 72, 73, 75, 81, 82, 83, 84, 85, 86, 87, 94, 95, 106, 120, 130, 132, 133, 136, 142, 143, 151, 152, 153, 155, 156, 157, 159, 160, 160, 161, 163, 164, 167, 169, 176, 177, 178, 183, 186, 187, 194, 201, 202, 203, 204, 205, 206, 207, 208, 208n49, 211, 213, 215, 217, 219, 222, 224, 227, 231, 232, 235, 236, 245, 246, 247, 248 Requirements Independence 35, 36, 38, 46, 47, 49, 50, 51, 71, 76, 86, 91, 108, 141, 142, 152, 161, 163, 165, 179, 182, 205, 206, 212, 214, 217, 225, 230, 246, 247 Pluralism 35, 36, 38, 91, 138, 141, 161, 196, 246, 247

index253 Resources 5, 6, 14, 18, 19, 22, 24, 25, 27, 28, 29, 31, 32, 36, 58, 60, 62, 64, 65, 70, 73, 76, 90, 100, 109, 111, 113, 115, 124, 128, 129, 132, 139, 140, 142, 155, 159, 160, 162, 167, 181, 182, 184, 185, 186, 189, 191, 205, 212, 218, 234, 238 See also National human rights institutions (NHRIs) Indicators 31, 32, 51, 60, 108, 140 Mainstreaming 3, 23, 25, 32, 40, 46, 74, 75, 85, 91, 94, 135, 141, 152, 154, 194, 200, 214 National bodies Equality bodies 47, 48, 54, 55 Ombudsmen 47, 53, 55 National human rights institutions (NHRIs) International Coordinating Committee 40, 41, 43, 72 A-Status 41, 41n61, 42, 42n65, 53, 72, 82 Sub-Comittee on Accreditation 41, 42 National human rights institution (NHRI) vii, xi, xiii, 6, 13, 20, 33, 33n42, 35, 35n46, 36, 37, 38, 39, 40, 41, 41n61, 42, 42n65, 43, 44, 44n69, 45, 47, 48, 49, 50, 52, 53, 54, 55, 64, 65, 82, 94, 98, 110n69, 117, 137, 141, 143, 151, 157, 161, 204 See also Independent mechanisms Non governmental organisations (NGOs) xi, xii, 17, 37, 40, 42, 47, 57, 58, 134, 145, 162, 172, 188, 210 Other international legal documents Directive 2000/78 75, 76 International Covenant on Economic, Social and Cultural Rights (ICESCR) 18, 19, 213, International Covenant on Civil and Political Rights (ICCPR) 18, 19, 213 Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT) xiii, 36, 39, 42, 48, 88, 98, 177, 178, 187, 191, 206 National preventive mechanisms (NMPs) 36, 39, 48, 187n25 Sub-Committee on Prevention 136, 139 Vienna Declaration and Programme of Action 19 Universal Declaration of Human Rights 21, 182, 213

UN Standard Rules on Equality of Opportunities for Persons with Disabilities 16n10, 22, 70 Persons with disabilities Disabled People’s Organsations (DPOs) 3, 5, 6, 7, 25, 26, 31, 43, 46, 55, 56, 57, 58, 59, 60, 61, 62, 65, 97, 103, 106, 109, 110, 111, 112, 113, 115, 116, 117, 118, 124, 125, 128n21, 129, 130, 136, 137, 138, 140, 141, 142, 145, 146, 147, 149, 150, 160, 161, 162, 165, 166, 167, 168, 169, 170, 172, 175, 179, 190, 196, 211 ‘Nothing about us without us’ 6, 56, 57, 66, 111 Participation of 1, 2, 4, 11, 13, 16, 18, 40, 44, 55, 56, 57, 58, 63, 65, 75, 79, 87, 124, 145, 157, 172, 180, 186, 189, 190, 191, 194, 210, 211, 237 Umbrella organisations 5, 73, 92, 112, 113, 165, 196, 211 Reporting process List of issues 203, 204, 209 Shadow reports 6, 49, 62, 106, 113, 187, 209 State reports 2, 4, 6, 39, 49, 51, 61, 79, 80, 81, 101, 106, 128, 139, 140, 202, 203, 204, 205, 211, 238 Shifts Conceptual 14, 15, 16, 18, 69, 81 Medical model of disability 15, 69, 123, 172, 193 Social model of disability viii, 1, 3, 15, 16, 16n11, 17, 23, 69, 75, 81, 131, 194, 196, 199 Paradigm 13, 15, 18, 24, 191 Structural 6, 11, 14, 15, 17, 18, 19, 20, 21, 30, 63, 87, 94, 120, 132, 146 UN Ad Hoc Committee xi, xiii, 12, 56, 69, 73, 171 Commission on Human Rights / Human Rights Council 35, 41 General Assembly 12, 16n10, 35, 52, 95, 173, 238, 240, 242 Office of the UN High Commissioner for Human Rights (OHCHR) xi, 22n29, 29, 30, 31, 41, 120n, 135, 209 UN Committee on the Rights of Persons with Disabilities (CRPD Committee) 80, 81, 106, 115, 128, 131, 139, 140, 144, 175, 187, 203, 204, 205