Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life (Cambridge Disability Law and Policy Series 1108475647, 978-1108475648

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Supported Decision-Making The United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognized that people with disabilities should have the right to exercise their legal capacity and identified ‘supported decision-making’ as a means by which people with disabilities can be directly involved in decisions that impact their lives. Offering an overview of its emergence in the disability field and highlighting emerging research, theory, and practice from legal, psychology, education, and health fields, this volume provides a much-needed theoretical and evidence base for supported decision-making. Evidence and strengths-based frameworks for understanding disability, supports, and their roles in promoting supported decision-making are synthesized. The authors describe the application of a social-ecological approach to supported decision-making, and focus on implications for building systems of supports based on current environmental demands. This volume introduces and explains empirical research on critical elements of supported decision-making and the applications of supported decision-making that enhance outcomes, including self-determination and quality of life. Karrie A. Shogren is a Professor in the Department of Special Education and Director of the Kansas University Center on Developmental Disabilities at the University of Kansas. Michael L. Wehmeyer is the Ross and Marianna Beach Distinguished Professor in Special Education and Chair of the Department of Special Education at the University of Kansas. Jonathan Martinis is Director for Law and Policy in the Burton Blatt Institute at Syracuse University, New York.

Supported Decision-Making The United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognized that people with disabilities should have the right to exercise their legal capacity and identified ‘supported decision-making’ as a means by which people with disabilities can be directly involved in decisions that impact their lives. Offering an overview of its emergence in the disability field and highlighting emerging research, theory, and practice from legal, psychology, education, and health fields, this volume provides a much-needed theoretical and evidence base for supported decision-making. Evidence and strengths-based frameworks for understanding disability, supports, and their roles in promoting supported decision-making are synthesized. The authors describe the application of a social-ecological approach to supported decision-making, and focus on implications for building systems of supports based on current environmental demands. This volume introduces and explains empirical research on critical elements of supported decision-making and the applications of supported decision-making that enhance outcomes, including self-determination and quality of life. Karrie A. Shogren is a Professor in the Department of Special Education and Director of the Kansas University Center on Developmental Disabilities at the University of Kansas. Michael L. Wehmeyer is the Ross and Marianna Beach Distinguished Professor in Special Education and Chair of the Department of Special Education at the University of Kansas.

Jonathan Martinis is Director for Law and Policy in the Burton Blatt Institute at Syracuse University, New York. Peter Blanck is University Professor and Chairman of the Burton Blatt Institute at Syracuse University, New York.

CAMBRIDGE DISABILITY LAW AND POLICY SERIES Edited by Peter Blanck and Robin Paul Malloy The Disability Law and Policy series examines these topics in interdisciplinary and comparative terms. The books in the series reflect the diversity of definitions, causes, and consequences of discrimination against persons with disabilities while illuminating fundamental themes that unite countries in their pursuit of human rights laws and policies to improve the social and economic status of persons with disabilities. The series contains historical, contemporary, and comparative scholarship crucial to identifying individual, organizational, cultural, attitudinal, and legal themes necessary for the advancement of disability law and policy. The book topics covered in the series also are reflective of the new moral and political commitment by countries throughout the world toward equal opportunity for persons with disabilities in such areas as employment, housing, transportation, rehabilitation, and individual human rights. The series will thus play a significant role in informing policy makers, researchers, and citizens of issues central to disability rights and disability antidiscrimination policies. The series grounds the future of disability law and policy as a vehicle for ensuring that those living with disabilities participate as equal citizens of the world.

Books in the Series Ruth Colker, When Is Separate Unequal? A Disability Perspective, 2009 Larry M. Logue and Peter Blanck, Race, Ethnicity, and Disability: Veterans and Benefits in Post–Civil War America, 2010 Lisa Vanhala, Making Rights a Reality? Disability Rights Activists and Legal Mobilization, 2011 Eilionóir Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities, 2011 Isabel Karpin and Kristin Savell, Perfecting Pregnancy: Law, Disability, and the Future of Reproduction, 2012 Alicia Ouellette, Bioethics and Disability: Toward a Disability-Conscious Bioethics, 2013 Arie Rimmerman, Social Inclusion of People with Disabilities: National and International Perspectives, 2013 Andrew Power, Janet E. Lord, and Allison S. DeFranco, Active Citizenship and Disability: Implementing the Personalisation of Support, 2013 Lisa Schur, Douglas Kruse, and Peter Blanck, People with Disabilities: Sidelined or Mainstreamed?, 2013 Eliza Varney, Disability and Information Technology: A Comparative Study in Media Regulation, 2013 Jerome E. Bickenbach, Franziska Felder, and Barbara Schmitz, Disability and the Good Human Life, 2014 Robin Paul Malloy, Land Use Law and Disability: Planning and Zoning for Accessible Communities, 2014 Arie Rimmerman, Family Policy and Disability, 2015 Peter Blanck, eQuality: The Struggle for Web Accessibility by Persons with Cognitive Disabilities, 2016 Anna Arstein-Kerslake, Restoring Voice to People with Cognitive Disabilities: Realizing the Right to Equal Recognition Before the Law, 2017 Arie Rimmerman, Disability and Community Living Policies, 2017

Paul Harpur, Discrimination, Copyright and Equality: Opening the e-Book for the Print-Disabled, 2017 Aisling de Paor, Genetics, Disability and the Law: Towards an EU Legal Framework, 2017 Piers Gooding, A New Era for Mental Health Law and Policy: Supported Decision-Making and the UN Convention on the Rights of Persons with Disabilities, 2017 Larry M. Logue and Peter Blanck, Heavy Laden: Union Veterans, Psychological Illness, and Suicide, 2018 Karrie A. Shogren, Michael L. Wehmeyer, Jonathan Martinis, and Peter Blanck, Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life, 2019

Supported Decision-Making Theory, Research, and Practice to Enhance Self-Determination and Quality of Life KARRIE A. SHOGREN University of Kansas

MICHAEL L. WEHMEYER University of Kansas

JONATHAN MARTINIS Syracuse University, New York

PETER BLANCK Syracuse University, New York With a Foreword by Rud Turnbull

University Printing House, Cambridge CB2 8BS, United Kingdom One Liberty Plaza, 20th Floor, New York, NY 10006, USA 477 Williamstown Road, Port Melbourne, VIC 3207, Australia 314–321, 3rd Floor, Plot 3, Splendor Forum, Jasola District Centre, New Delhi – 110025, India 79 Anson Road, #06–04/06, Singapore 079906 Cambridge University Press is part of the University of Cambridge. It furthers the University’s mission by disseminating knowledge in the pursuit of education, learning, and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781108475648 DOI: 10.1017/9781108633314 © Cambridge University Press 2019 This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published 2019 Printed and bound in Great Britain by Clays Ltd, Elcograf S.p.A. A catalogue record for this publication is available from the British Library. Library of Congress Cataloging-in-Publication Data Names: Shogren, Karrie Ann, 1980– author. | Wehmeyer, Michael L., 1957– author. | Martinis, Jonathan, 1968– author. | Blanck, Peter David, 1957– author. Title: Supported decision-making: theory, research, and practice to enhance self-determination and quality of life / Karrie A. Shogren, University of Kansas; Michael L. Wehmeyer, University of Kansas; Jonathan Martinis, Syracuse University, New York; Peter Blanck, Syracuse University, New York. Description: Cambridge, United Kingdom; New York, NY, USA: Cambridge University Press, 2018. | Series: Cambridge disability law and policy series | Includes bibliographical references and index. Identifiers: LCCN 2018018446 | ISBN 9781108475648 (alk. paper) Subjects: LCSH: People with disabilities – Civil rights. | People with disabilities – Government policy. | Autonomy (Psychology) Classification: LCC HV1568.S459 2018 | DDC 362.401/9–dc23 LC record available at https://lccn.loc.gov/2018018446 ISBN 978-1-108-47564-8 Hardback Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this publication and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

Cambridge University Press, Disability Law and Policy Series Title: Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life Authors: Karrie A. Shogren, Ph.D. Professor, Department of Special Education Director, Kansas University Center on Developmental Disabilities Associate Director, Beach Center on Disability University of Kansas Michael L. Wehmeyer, Ph.D. Ross and Marianna Beach Distinguished Professor in Special Education Chairperson, Department of Special Education Director, Beach Center on Disability University of Kansas Jonathan Martinis, J.D. Senior Director of Law and Policy Burton Blatt Institute Syracuse University Peter Blanck, Ph.D., J.D. University Professor & Chairman, Burton Blatt Institute Syracuse University With a foreword by Rud Turnbull

Contents

List of Figure

page xviii

List of Tables

xix

Foreword by Rud Turnbull

xxi

Acknowledgments

Part I 1

xxix

Overview

1

Introduction to Supported Decision-Making and Its Emergence in the Disability Field

3

“Justice for Jenny,” Section 1

4

Guardianship

5

“Justice for Jenny,” Section 2

6

Overbroad and Undue Guardianship

7

Supported Decision-Making

13

“Justice for Jenny,” Section 3

15

xi

Contents Recent Developments in Supported Decision-Making

17

Implications for Supported Decision-Making

Part II 2

and Book Overview

21

Strengths-Based Frameworks for Understanding Disability and Support Needs

27

Social-Ecological Models of Disability Historical Conceptualizations of Disability

29 30

Defining the Social-Ecological Model of Disability International Classification of Functioning American Association on Intellectual and Developmental Disabilities Diagnostic and Statistical Manual of Mental Disorders

32 35 38 39

Components of a Social-Ecological Model of Disability Personal Competencies Environmental Demands Support Needs

40 41 42 43

Implications for Theory, Research, and Practice

3

44

Strengths-Based Approaches: Positive Psychology and Disability

46

Positive Psychology

46

Applications of Positive Psychology to Disability Self-Determination

xii

49 54

Contents

4

Supports Paradigm

55

Conclusion

67

Causal Agency Theory: Self-Determination and Disability

68

Self-Determination in the Disability Field Emergence of Self-Determination in the Disability Field

69

Causal Agency Theory Basic Psychological Needs Causal Action Key Terms and Assumptions Essential Characteristics of Self-Determined Actions

81 82 82 83

Volitional Action Agentic Action Action-Control Beliefs

Self-Determination Research

71

85 85 87 89 90

Self-Determination and Supported

Part III 5

Decision-Making

91

Conclusion

93

Theory Underpinning Supported Decision-Making

97

Social-Ecological Framework for Supported Decision-Making

99

Application of Social-Ecological Models to Supported Decision-Making Environmental Demands and Supported Decision-Making Personal Competencies and Supported Decision-Making

100 102 106

xiii

Contents Support Needs and Supported Decision-Making

111

Integrating Personal Competencies, Environmental Demands, and Support Needs

6

113

Decision-Making Capacity in Law and Practice 118 Guardianship History and Law

119

Reforming US Guardianship Law

121

Supported Decision-Making: International Advances

126

Supported Decision-Making: Advances

7

8

132

Conclusion

138

Environmental Demands for Decision-Making

135 139

Describing Environmental Demands Domains of Environmental Demands Research on Environmental Demands for Decision-Making

140 145

Assessing Environmental Demands

155

147

Decision-Making Skills and Support Needs for Decision-Making

xiv

131

in the United States Texas: The Law of Supported Decision-Making Vermont: State Policies and Practices for Supported Decision-Making

158

Decision-Making Defined Pathways of Decision Processing Model Decision-Making Process Steps

160 161 166

Factors that Influence Decision-Making Personal Factors

170 171

Contents

Environmental Factors and Demands

171 173 173 174

Supports to Promote Decision-Making

175

Conclusion

180

Applications of a Social-Ecological Framework for Supported Decision-Making

181

Sociodemographic Factors Decision-Making Experience Emotional Factors

Part IV 9

Supported Decision-Making and Self-Determination Research Self-Determination Research

184

Supported Decision-Making Research Decision-Making Research Supported Decision-Making Studies and Pilot Projects Ongoing Supported Decision-Making Research

186 187

National Resource Center for Supported Decision-Making Supported Decision-Making Community Living Project Self-Determined Decision-Making Project Giving Mental Health a Voice Project

Conclusion

10

183

189 192 192 194 195 197 199

Assessment and Intervention in Supported Decision-Making Assessment in Supported Decision-Making Supported Decision-Making Inventory System Refinement of the Supported Decision-Making Inventory System

200 201 203 207

xv

Contents Supported Decision-Making Personal Factors Inventory Supported Decision-Making Environmental Demands Inventory Decision-Making Autonomy Inventory Applications of the Supported Decision-Making Inventory System

Using Assessment Information to Develop Interventions and Supports

11

208 211 212 213 215

Intervention and Support Strategies Decision-Making Aids Technology Supports ESCAPE-DD Self-Determined Decision-Making Model

215 216 217 220 221

Conclusion

231

Building Systems of Supports for Supported Decision-Making

233

Supported Decision-Making and Self-Determination

234

Supported Decision-Making and Special Education Educational Models for Supported Decision-Making Supported Decision-Making and Individualized Education Programs

236 237 239

Supported Decision-Making and Vocational Rehabilitation

241

Supported Decision-Making and Health Care

243

Supported Decision-Making and Legal Representation

xvi

246

Contents Supported Decision-Making and State Support Systems: Culture of Coordinated Support Model

247

Supported Decision-Making and the Culture of Coordinated Support Model:

12

Case Study of Vermont

251

Conclusion

252

Implications for Future Theory, Research, and Practice

253

References

259

Index

285

xvii

Figure

4.1

Causal Agency Theory: Development of self-determination

xviii

page 70

Tables

3.1

Primary and secondary steps of the decision-making process

4.1

page 64

Essential characteristics of self-determination, component constructs, and component elements

5.1

Planning for individualized supports for decision-making

5.2

115

Planning for creating systems of support for decision-making

7.1

86

116

Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Environmental Demands section

156

10.1 Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Personal Factors Inventory

210

xix

List of Tables

10.2 Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Decision-Making Autonomy Inventory

213

10.3 Self-regulated problem-solving questions from the Self-Determined Learning Model of Instruction (SDLMI) and the Self-Determined Career Design Model (SDCDM)

225

10.4 Questions, objectives, and decision supports for phase 1 of the Self-Determined Decision-Making Model (SDDMM)

227

10.5 Questions, objectives, and decision supports for phase 2 of the Self-Determined Decision-Making Model (SDDMM)

229

10.6 Questions, objectives, and decision supports for phase 3 of the Self-Determined Decision-Making Model (SDDMM)

xx

230

Foreword

Emancipation from the Dead Hand of Paternalism You begin this book by reading about Jenny, a person with a disability, and about what justice means for her. You learn about how systems imprisoned and controlled her through the allegedly paternalistic and protective legal mechanism of guardianship. You learn how a researchbased practice, using supported decision-making, liberated her. In later chapters, you learn how psychology combines with law – how two disciplines that previously collaborated to limit people with disabilities now cohere to set them free. In a word, you learn about emancipation from the “dead hand of paternalism.”

xxi

Foreword That is the core narrative of this book. It is one that justifies (if I may use that word here) a word or two. Full disclosure: My son Jay, a man with intellectual disability, autism, and rapid-cycling bipolar disorder, lived without guardianship until he was thirty-five years old; he received decision-making support from family, friends (including Karrie Shogren and Mike Wehmeyer, coauthors of this book), and professionals; and, he was not subjected to guardianship until his physicians’ insurance companies interpreted a federal law, the Health Insurance Portability and Accountability Act (1996), to require those physicians to decline to serve Jay until his mother and I had legal guardianship over him. That was a peculiar turn of events: federal law requiring physicians who had relied on his assent and his parents’ consent for nearly sixteen years. Our a-legal approach – the “natural guardianship” that state law does not recognize for adults with disabilities – had to yield to a formal approach. Further disclosure: I was the draftsman of North Carolina’s limited guardianship statute, enacted in 1978 (amended in 1987). At that time, I regarded limited guardianship as progressive, as less drastic and restrictive than the law that allowed for only one kind of guardianship – a plenary, or full, guardianship. I am still of that opinion, but only within the confines of legal guardianship. Final disclosure: I was a draftsman of the policy statement of The Arc of the United States about autonomy, protection, and guardianship (2016).

xxii

Foreword Let’s return to Jenny, and Jay, and ask, “What is justice?” It is, among other things, fairness. That is one of the ways in which John Rawls, the twentieth-century’s most prominent philosopher, defined it (Rawls, 2001). It is also how US Supreme Court Justice Felix Frankfurter described it: justice is the process in law due, as a matter of fairness, when the state seeks to impose a negative consequence on one of its citizens (Frankfurter, 1951 in Joint Anti-Fascist Refugee Committee v. McGrath). So, what’s unfair, you may ask, about guardianship? Let me answer the question by asserting the fairness of guardianship, an argument you are unlikely to hear advanced in this book. Guardianship is fair because, if the process for imposing it meets the requirements of procedural due process, it becomes a prosthetic device for those who are unable to care for themselves without the legal authority of a surrogate (the guardian). No doubt, guardianship removes rights from the person with a disability, but it transfers them to the person’s legally appointed proxy. That seems fair enough: a person with no rights is better off than a person with some rights. But it is not really “fair enough.” Why? Because, for one thing, the process of adjudicating a person too often is formalistic, a ritual in which alternatives to guardianship are not considered or, if considered, not seriously taken into account. That was Jenny’s case. It was my son’s. Lest you think that I am relying on Jenny and Jay as sufficient proof of the argument about formalistic procedures, let me assure

xxiii

Foreword you I am not. You will find support of my argument in this book. So, the US constitutional doctrine of procedural due process is honored in name only; it is a chimera that has the further flaw of not observing another constitutional doctrine, namely the doctrine that when a state has legitimate reason to restrict a person’s liberty, it must do so in the way that is least restrictive of the person’s liberty itself, in a way that is less drastic than other ways available to the state. Note carefully the word “liberty.” It is a consequential word. Among other things, it underlies the first, fifth, and fourteenth amendments of the US Constitution. It conjures two meanings: liberty from (a negative or restrictive right) and liberty to (a positive or affirmative right). Pay attention to those two meanings: liberty from overly restrictive guardianship and affirmative liberty to make decisions for oneself. As a positive right, liberty calls forth two core concepts of disability policy. These are autonomy and empowerment with participation in decision-making (Turnbull, Beegle, & Stowe, 2001). Autonomy – the right to choose how to live – depends on liberty: one cannot be the person one wants to be without the liberty to choose, which, in turn, depends on the liberty to be free from undue state interference (Loving v. Virginia, 1967; Obergefell v. Hodges, 2015). Autonomy – the liberty to be oneself – invokes another liberty, that is, the liberty to participate, and meaningfully to the maximum extent possible, in the public arena

xxiv

Foreword as an elector, a franchised person. Democracy itself – the principle of self-government – depends on understanding liberty to include the concept of empowerment and participatory decision-making. That concept is consequential in one fundamental way: one’s quality of life, either as a person subject to government or as a person in an entirely private sphere, depends on the right to participate and the power to do so authentically. Quality of life, then, depends on one’s understanding of the meaning of separate but cognate concepts: justice, due process, the doctrine of the least restrictive alternative, liberty, autonomy, and empowerment and participatory decisionmaking. When those concepts are absent, one’s quality of life surely is at risk. That is the lesson of Jenny’s case; it is also the lesson of my son’s life (Turnbull, 2011). Let’s parse “participatory decision-making” from a different perspective, taking Jenny and Jay into account. Who participated in their decision-making? Jenny’s friends did, and Jay’s family and friends did. These two people were emancipated from restrictive guardianships because their reliable allies participated with them so that they might make their own decisions about their lives. The emphasis in that sentence has to be on “participated with them.” That is a different set of actions than “making decisions for them, on their behalf or best interests, as their surrogate and proxy, as their guardian.” “With,” not “for,” is the dispositive preposition. “Alliance” is the construct – power with another, power within the

xxv

Foreword relationship with another. It’s not about power over, as guardianship conveys; it’s about support jointly to make a decision. And that support depends on two factors. The first is trust. The second is community. Trust means “assured reliance on the character, ability, strength, or truth of someone or something; one in which confidence is based” (Mish, 1990). Note the centrality of “assured reliance.” Assurance exists because of past behavior: a person (the donor or grantor) places trust in another because the other (the trustee or ally) has earned the donor’s reliance. Trust is more than a legal concept (although I have just described it rather much in that way). It is the fruit of a meaningful relationship. Jenny trusted her friends, and Jay trusted Ann (his mother) and me, because they knew we would safeguard them. They did not need a court to affirm what the evidence of a reliable alliance had adduced. But trust and reliable alliances depend on the presence of community. Here, community refers to “a unified body of individuals” – thus, to “people with common interests living in a particular area” (Mish, 1990). That area is both a physical place and a site as well as a psychological realm, a sensed mutual obligation, an ethic of mutuality – the ethical community. The antithesis of community is segregation; the thesis of community is integration (Americans with Disabilities Act, 1990; Brown v. Board, 1954). Without being in, belonging to, and becoming thereby an inherent part of a body of people

xxvi

Foreword unified in support of herself and himself – here, Jenny and Jay – one will not have access to supports to make decisions as an alternative to overly restrictive guardianship. Yes, one accidentally may have access to support, as Jenny and Jay did – the support was accidental in the sense that it was not formally established; it arose from extrinsic conditions. But until the law itself emancipates the Jennies and Jays from the dead hand of undue guardianship by advancing community integration, taking into account the proof of trustworthiness, and affirming the effective practice of authentic support in making decisions, full guardianship will be the norm. With it will be the loss of liberty and, indeed, loss of dignity; for a liberated person – the person who has autonomy and the power to participate in making judgments about one’s quality of life – is one who the law recognizes as inherently worthy of respect (Turnbull, 2009; Turnbull & Stowe, 2001). This book is about supported decision-making and the evolving law and practice. But it is also, as I hope to have persuaded you, about much more. It is about emancipation from the dead hand of paternalism. Read it for its prescriptions; read it, too, for its overarching themes, for its core narrative. It deserves both kinds of attention. Rud Turnbull, B.A., LL.B., LL.M. Co-founder, Beach Center on Disability Distinguished Professor Emeritus University of Kansas

xxvii

Foreword

References Americans with Disabilities Act (1990). P.L. 101–336, 104 Stat. 327, 42 U.S.C. Secs. 12101 et seq. The Arc Position Statement on Autonomy, Decision-Making Supports, and Guardianship. www.thearc.org/who-we-are/position-state ments/autonomy-decisionmakingsupportsandguardianship Brown v. Board of Education of Topeka, 349 U.S. 885 (1954). Frankfurter, F. (1951), in Joint Anti-Fascist Refugee Committee v. McGrath, 341 U.S. 123, at 161, holding that the Attorney General violates the committee’s right to due process by listing the committee as fascist without affording the committee a right to protest the decision. Health Insurance Portability and Accountability Act (1996), 42 U.S.C. Sec. 1320d et seq. Loving v. Virginia, 388 U.S. 1 (1967), striking down Virginia’s antimiscegenation statute. Mish, F. C. (1990) (ed.). Webster’s ninth new collegiate dictionary. Springfield, MA: Merriam-Webster, Inc. North Carolina General Statutes, Ch. 35A, Art. 4, Sec. 1201 (1987). Obergefell v. Hodges, 576 U.S. __ (2015), holding that same-sex couples have a constitutional liberty right to marriage. Rawls, J. (2001). Justice as fairness: A restatement, ed. E. Kelly. Cambridge, MA: Harvard University Press. Turnbull, H. R. (2009). A modest proposal in four parts. Focus on Exceptional Children, 42, 1–10. Turnbull, H. R. (2011). The exceptional life of Jay Turnbull: Disability and dignity in America 1967–2009. Amherst, MA: White Poppy Press. Turnbull, H. R., Beegle, G., & Stowe, M. J. (2001). The core concepts of disability policy affecting families of people with disabilities. Journal of Disability Policy Studies, 12, 133–143. Turnbull, H. R. & Stowe, M. J. (2001). A taxonomy for organizing the core concepts of disability policy. Journal of Disability Policy Studies, 12, 177–197.

xxviii

Acknowledgments

T

he authors are grateful to their colleagues and partners engaged in research, policy, education, and

practice

on

supported

decision-making,

which is propelling change in the disability field and made

this book possible. The authors particularly thank the selfadvocates who every day push us all to recognize, respect, and partner in advancing causal agency and human flourishing in all aspects of life. Karrie Shogren thanks her colleagues at the University of Kansas and the Kansas University Center on Developmental Disabilities. Michael Wehmeyer would like to acknowledge the SelfAdvocate Coalition of Kansas, whose members have contributed to our work in supported decision-making and, more

xxix

Acknowledgments importantly, who continue to push the fight for full citizenship for all Kansans. Jonathan Martinis acknowledges his family with awe: they live what he can only describe. He also thanks Tina Campanella, Morgan Whitlatch, and Quality Trust for Individuals with Disabilities for their vision, values, and leadership in this field. Peter Blanck is thankful for having known so many pioneers and advocates in the disability rights field, on whose efforts we all continually attempt to build upon. The authors gratefully acknowledge the funding support provided by the US Department of Health and Human Services, Administration on Community Living, Administration

on

Intellectual

and

Developmental

Disabilities, through Cooperative Agreement #90DM000101–00, National Resource Center for Supported Decision Making, awarded to Quality Trust, with a subcontract to the University of Kansas and Syracuse University; and the support provided by the US Department of Health and Human Services, Administration on Community Living, National Institute on Disability, Independent Living, and Rehabilitation Research through Grant 90DP0076-01–00 awarded to Syracuse University with a subcontract to the University of Kansas. For additional information on this and related grants, please visit the Burton Blatt Institute website at: http://bbi.syr.edu. The opinions expressed in this text are those of the authors and do not represent views of the US Department of Health and Human Services or of any other funding agency. xxx

PART I Overview

1 Introduction to Supported Decision-Making and Its Emergence in the Disability Field

S

upported decision-making is receiving attention throughout the world as a means to enable people with disabilities to remain at the center of decision-

making processes in their lives. This text is focused on the emergence of theoretical and empirical frameworks that operationalize the provision of supports for decisionmaking to enable people with disabilities to be agentic and involved in decisions about their lives. This introductory chapter provides a context for the emergence of supported decision-making, the relationship between guardianship and supported decision-making, and a frame for understanding the remaining sections and chapters of the text.

3

Overview

“Justice for Jenny,” Section 1 The year she turned age twenty-nine, Margaret “Jenny” Hatch had a job she loved, lived in her own apartment, had friends she enjoyed being with, and was active in her church and politics (Hatch, Crane, & Martinis, 2015). Perhaps most importantly for Jenny, who has Down syndrome, she had people in her life she could count on, who helped her when she needed it. Jenny’s friends, employers, professionals that she knew, and others, helped her when she needed information to make decisions. With their support, and her natural capabilities, Jenny had a life like almost everyone else: she worked, lived interdependently, and took care of herself; she made her own choices on where to go, who to see, and what to do. Unfortunately for Jenny, she was struck by a car while riding her bicycle. Shortly thereafter, she was served with a petition for full guardianship, which asked the local state court to appoint another person to take control over Jenny’s life, and to make all decisions for her. After a short hearing on the petition, the court placed Jenny under a temporary guardianship. Jenny’s guardian was given the legal power to decide, at least for the time being, where she lived, who she saw, how she spent her time and money, what (if any) health care she received, and what type of education, living, and employment services she was provided (Ross and Ross v. Hatch, 2013).

4

Introduction to Supported Decision-Making and Its Emergence

Guardianship While guardianship laws vary from state to state, in general, Americans are ordered under guardianship when a state court decides that they cannot direct their lives or make some or all decisions due to having a disability or condition that limits their ability to do so. In essence, the individual under guardianship is determined to be incapacitated in the eyes of the law. In these circumstances, the local state court, often called a probate court, then appoints a third party, usually called a guardian but in some states a conservator, to direct the person’s life and make decisions for the person in areas where the court feels he or she cannot (Quality Trust for Individuals with Disabilities, 2013). In cases in which the court directs that all life decisions are to be determined by the guardian an order of plenary guardianship is made, and where only some decisions are covered this is called limited guardianship. The surrogate decision-making process has been roughly the same for more than 2,000 years. In ancient Rome, for example, people deemed feeble-minded were placed under the control of curators (Fleming & Robinson, 1993). In feudal England, the 1324 statute De praerogativa regis stated that people considered to be idiots and lunatics (O’Sullivan, 2002) would be placed under committees that would have the power to make decisions in their place (Regan, 1972). The United States followed this model, giving states “all the powers in this regard which the sovereign

5

Overview possesses in England” (Late Corp. of the Church of Jesus Christ of the Latter Day Saints v. United States, 1890, p. 57). Throughout history, society has viewed the guardianship process as “a humanitarian response to the vulnerability of the incompetent” (Frolik, 1998, p. 350). This paternalistic view has contributed to the estimated number of Americans under guardianship tripling since 1995, with most under plenary guardianship (Reynolds, 2002; Schmidt, 1995; Uekert & Van Duizend, 2011). Yet this dramatic rise in guardianship orders has not typically been accompanied by systematic and individualized analyses as to whether and when these individuals actually require guardianship or, once guardianship is ordered, “whether the protected person continue[s] to need or benefit” from it (Wright, 2004, p. 60).

“Justice for Jenny,” Section 2 While under temporary guardianship, Jenny Hatch found herself in a position where, regardless of what she wanted, had done before, or had shown the ability to do, someone else controlled her life decisions. In Jenny’s words: I was forced to live in a group home. I did not like it there. I didn’t feel safe there. I would tell everyone, but no one would listen. They took away everything that was important to me. I was not allowed to work at my job or see my friends. They would not even let me go to my church. My computer and my cell phone were taken away and I was not allowed to even call my friends . . . They told me

6

Introduction to Supported Decision-Making and Its Emergence I had to work at [a segregated “sheltered” workshop]. I snapped snaps together all day and it was boring. I did not like it. I wanted my life back, but they told me to forget about my old life and move with my new life. (Hatch, Crane, & Martinis, 2015, p. 66)

Jenny’s full or plenary guardianship is by far the most common ordered by a court (Frolik, 2002). One study found that, in more than 90 percent of the guardianships reviewed, the guardian had authority to make all life decisions for the ward (Teaster et al., 2007). Another found that 87 percent of the guardianships it reviewed across ten states gave the guardian full authority over the person (Lisi, Burns, & Lussenden, 1994). In the words of one leading commenter, “It seems that as long as the law permits plenary guardianship, courts will prefer to use it” (Frolik, 1998, p. 354).

Overbroad and Undue Guardianship The recent three-fold increase in guardianship, when coupled with the historical view of guardianship as benevolent, raises concerns about the overuse of overbroad and undue guardianships (Blanck & Martinis, 2015). Guardianships are overbroad or undue when they are imposed on people who are able to make their own decisions and direct their own lives, either on their own or through the use of an alternative to guardianship, or when they restrict more of the person’s rights than necessary (Martinis, 2015a). Scholars and researchers have contended that these types of undue guardianship cause

7

Overview a “significant negative impact on . . . physical and mental health, longevity, ability to function, and reports of subjective well-being” (Wright, 2010, p. 354). As Congressman Claude Pepper, Chair of the US House of Representatives Select Committee on Aging, stated: The typical ward has fewer rights than the typical convicted felon . . . By appointing a guardian, the court entrusts to someone else the power to choose where they will live, what medical treatment they will get and, in rare cases, when they will die. It is, in one short sentence, the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty. (House of Representatives, 1987, p. 4)

Overbroad and undue guardianship may cause such harm because it decreases self-determination. Self-determination refers to making or causing things to happen in one’s own life, and “enhances the possibilities for people to exert some authority in their lives” (Wehmeyer & Schwartz, 1998, p. 4). People exercise self-determination by making the choices that set their life course, the simple and complex everyday decisions (Shogren et al., 2015a) that result in them becoming “causal agents . . . actors in their lives instead of being acted upon” (Wehmeyer et al., 2000, p. 440). When a person is court ordered into a plenary guardianship, their self-determination necessarily decreases because someone else is given the power to make decisions for them, instead of them (Blanck & Martinis, 2015).

8

Introduction to Supported Decision-Making and Its Emergence Numerous studies find that, when people exercise more self-determination, they have a demonstrably better quality of life. Research by Shogren, Wehmeyer, Palmer, Rifenbark, and Little (2015b) and Powers and colleagues (2012) found that young adults with disabilities who were more selfdetermined were more likely to be employed, independent, and live in their communities. McDougall, Evans, and Baldwin (2010) found a positive association between selfdetermination and perceived quality of life in people with disabilities. These studies follow in the wake of others. Wehmeyer and Schwartz (1997) found that young adults with cognitive impairments who had higher self-determination were more likely to live independently, manage their money, and be employed. Wehmeyer and Palmer (2003) likewise found that adults with disabilities who exercised greater selfdetermination were more likely to live independently, have greater financial independence, be employed at higher paying jobs, and make greater advances in their employment. Recent federal laws, such as the Achieving a Better Life Experience (ABLE) Act of 2014, create tax-advantaged savings accounts for people with disabilities to further financial independence by allowing that certain living expenses related to education, housing, and transportation may be covered with such savings (Morris, Rodriguez, & Blanck, 2016). Other studies find that women with intellectual disability who are enabled to be more self-determined are better

9

Overview able to recognize potentially abusive situations and avoid abuse (Khemka, Hickson, & Reynolds, 2005). Moreover, older adults who are more self-determined are better able to adjust to their increasing care needs (O’Connor & Vallerand, 1994). Overbroad and undue guardianship limits individual self-determination because it takes life control away from people who otherwise have the ability to make their own decisions and direct their own lives (Blanck & Martinis, 2015). Decades of research has found that people who are denied opportunities for self-determination often “feel helpless, hopeless, and self-critical” (Deci, 1975, p. 208) and experience “low self-esteem, passivity, and feelings of inadequacy and incompetency” (Winick, 1995, p. 21), decreasing their ability to function. Accordingly, overbroad or undue guardianship “not only divests the individual of the important right to self-determination but also marginalizes that person and removes him or her from a host of interactions involved in decision-making” (Salzman, 2010, p. 160). The personal and social isolation inherent in overbroad and undue guardianship has led legal commentators to argue that it violates the “integration mandate” of the Americans with Disabilities Act (ADA) of 1990 and as amended in the ADA Amendments Act in 2008 and 2012 (Hatch, Crane, & Martinis, 2015; Salzman, 2010). Title II of the ADA states that public entities – governments and any “instrumentality of a state or local government” (ADA, 2012; 42 U.S.C. § 12131) – must ensure that “no qualified

10

Introduction to Supported Decision-Making and Its Emergence individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subject to discrimination by any such entity” (ADA, 2012; 42 U.S.C. § 12132). The regulations of the ADA state that public entities must “administer [their] services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities” (ADA, 2008; 28 C.F.R. § 35.130[d]). The “most integrated setting” is one “that enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible” (ADA, 2008; 28 C.F.R. Pt. 35, App. A 2010 addressing 28 C.F.R. § 35.130). In the seminal United States Supreme Court case Olmstead v. L.C. (1999), two women with intellectual disability argued that the State of Georgia had violated the ADA’s integration mandate when it determined to house them in segregated institutions rather than in integrated community settings. The Supreme Court agreed stating, “[u]njustified institutional isolation . . . is a form of discrimination” (527 U.S. 581 at 600). Salzman (2010) and Hatch, Crane, and Martinis (2015) argue that people in overbroad or undue guardianships suffer the same isolation, in violation of the ADA, as people unjustifiably institutionalized. Salzman states that people forced into overbroad or undue guardianships are “constructively isolated” from their communities because their guardians control where they live, whether they receive medical

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Overview care, who they see, and even when they work or get married (Salzman, 2010). Hence, overbroad and undue guardianships, like the one Jenny Hatch faced, can deny people with disabilities the opportunity to live, work, and interact with others in the community, in violation of the ADA’s most basic principles (Blanck, 2016a; Hatch, Crane, & Martinis, 2015). As in Olmstead, this type of guardianship may “perpetuate unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life” and “diminish[es] . . . everyday life activities . . . including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment” (Olmstead v. L.C., 1999, 527 U.S. at 600–601). Mounting research and commentary demonstrate, therefore, the benefits of promoting causal agency and the harms resulting from restricted opportunities for the development and expression of self-determination (Shogren et al., 2015a). Increasingly, federal laws such as the ADA and Supreme Court decisions such as Olmstead also mandate efforts to promote the development of self-determination and community integration. Yet there remain “deeply embedded tendencies toward protection over autonomy, and courts continue to issue guardianship orders that are not necessary and are overly broad in scope” (Salzman, 2010, p. 178). Accordingly, there is a pressing need to identify and implement alternatives to overbroad and undue guardianship that empower

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Introduction to Supported Decision-Making and Its Emergence people to exercise self-determination and direct their own lives with needed supports (Blanck & Martinis, 2015).

Supported Decision-Making In the United States and internationally, people, professionals, legislatures, policy makers, and courts have begun adopting and using supported decision-making as an alternative to overbroad or undue guardianship (Kohn, Blumenthal, & Campbell, 2013). In general, people use supported decision-making when they work with their friends, family, and/or professionals “to help them understand the situations and choices they face so they may make their own informed decisions” (Blanck & Martinis, 2015). Supported decision-making is consistent with the way most adults make their own decisions and order their lives on a daily basis – how they choose what to do, where to go, who to see, and whether to get “car repairs, sign legal documents, consent to medical procedures, review financial documents, and the like” (Blanck & Martinis, 2015). Like almost everyone, people using supported decision-making look to and rely on others for advice and information, so they may make their own well-informed decisions (Dinerstein, 2012; Quality Trust for Individuals with Disabilities, 2013). The rise in knowledge and use of supported decisionmaking may be traced, in large part, to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (Dinerstein, Grewal, & Martinis, 2016). Article 12 of the

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Overview CRPD states that “persons with disabilities have the right to recognition everywhere as persons before the law,” and “enjoy legal capacity on an equal basis with others in all aspects of life” (CRPD, at Art. 12 (1), (2)). These declarations, that people with disabilities, like everyone, have an inherent right to direct their own lives and receive the support they need to do so, challenge the continued use of overbroad or undue guardianship. They support the use of informal (e.g., Circles of Support), contractual (e.g., Powers of Attorney and Advanced Directives), and formal (e.g., legislatively recognized

supported

decision-making

agreements,

court-

endorsed uses of supported decision-making, and limited guardianship) alternatives generally referred to as supported decision-making (Dinerstein, Grewal, & Martinis 2016). Among others, the governments of Australia, Canada, Germany, Great Britain, Israel, and Ireland have implemented supported decision-making systems in their laws. Supported decision-making provides two immediate personal and social benefits. First, because people using supported decision-making serve as their own primary decisionmakers – as opposed to plenary guardianship where someone else makes all decisions in the person’s place – it increases their control over their lives. As a result, supported decision-making may provide people with access to benefits associated with increased self-determination such as increased independence in life, employment, and community integration (Blanck & Martinis, 2015; Shogren et al., 2015b). Second, supported decision-making helps people

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Introduction to Supported Decision-Making and Its Emergence avoid the social isolation from overbroad or undue guardianship, allowing them to be more integrated in their communities consistent with the CRPD, ADA, and other laws (e.g., Developmental Disabilities and Bill of Rights Act, 2006; Olmstead v. L.C., 1999; Rehabilitation Act of 1973, 2006).

“Justice for Jenny,” Section 3 Jenny Hatch understood that her plenary guardianship was unnecessarily overbroad; she stated: “I don’t need a [guardian] . . . I need help” (Vargas, 2013). At her guardianship trial, Jenny showed that she made her own decisions, with the help and support of people she chose and trusted. Witnesses testified that, even though Jenny didn’t call her decision-making process “supported decision-making,” she had interacted with friends, professionals, and advocates to help her understand and make complex, personal decisions including whether to: •

Sign a Power of Attorney after her attorney explained it to her, gave her the opportunity to ask questions about it, and the time she needed to understand it;

•

Play the primary role in and sign her government Medicaid Waiver Person-Centered Plan after her case manager and support team reviewed it with her page by page, explained issues and concepts she said that she needed help with, and answered her questions;

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Overview •

Choose to have surgery after her accident, after her family and doctor explained the procedure and risks to her; and

•

Authorize people to be her representative payee for Social Security benefits, and to have access to her medical records, after explaining the forms to her and giving her extra time to review and ask questions about them (Ross and Ross v. Hatch, 2013). Jenny’s decision-making process comported with the

recommendations of a professional expert, called to testify by the people seeking to put Jenny under guardianship, who stated that Jenny needed “assistance” to make legal, financial, and life decisions. The psychologist testified that Jenny was “going to need assistance to make decisions regarding her healthcare, her living arrangements and such like that, she will need someone to guide her and give her assistance” (Ross and Ross v. Hatch, 2013). Other experts testified at trial that Jenny’s decision-making process was consistent with supported decision-making and informed the court of the benefits of enhanced self-determination that can result from supported decision-making. Ultimately, the judge denied the petition for permanent, plenary guardianship in favor of the supported decisionmaking relationships Jenny had made and used. The court ruled that Jenny could make her own decisions, with support, in all life areas but health and safety. With regard to those two areas, the judge ordered a one-year limited guardianship for Jenny. However, the court appointed Jenny’s friends, Jim

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Introduction to Supported Decision-Making and Its Emergence Talbert and Kelly Morris, who she wanted to live with, as her guardians. Most significantly, the court ruled that, during the one-year limited guardianship, her friends should “assist [her] in making and implementing decisions we have termed ‘supported decision-making’” (Ross and Ross v. Hatch, 2013). Jenny’s guardianship ended in August 2014. Since then, she has continued to live with her friends and continued to work with them, using supported decision-making, to make her own decisions. In her words: Since I won my case, life has been GREAT! I live with Kelly and Jim and I feel safe and loved with them. I am back at my church and I help with the children and I sing in the choir. I am working at my thrift store again. I have lots of friends and I am learning new things. I go out for ice cream. I go shopping and I go to the bank and cash my check. I pay my cell phone. My life is a lot like yours. I get to make decisions for my life. I am very happy. Jim and Kelly help me and support me. They help me make good choices. (Hatch, Crane, & Martinis, 2015, p. 66)

Recent Developments in Supported Decision-Making Since the “Justice for Jenny” case, supported decision-making increasingly is being recognized and implemented in formal and informal ways as an alternative to overbroad or undue guardianship. In 2014, the Virginia General Assembly directed the state Secretary of Health and Human Services to

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Overview “recommend strategies to improve the use of supported decision-making in the Commonwealth and ensure that individuals . . . are consistently informed about and receive the opportunity to participate in their important life decisions” (H.J.Res. 190, Reg. Sess. (Va. 2014)). The Secretary’s report recommended that Virginia amend state law to recognize supported decision-making as a “legitimate alternative to guardianship;” implement policies and procedures requiring substitute decision-makers to be trained in and commit to using supported decision-making; and develop supported decision-making training for professionals and providers (H.J.Res. 190, Reg. Sess. (Va. 2014)). In 2015, Texas amended its guardianship law to give legal recognition to supported decision-making and to “Supports and Services,” which are formal and informal resources and assistance that enable people to meet their needs; care for their health; manage their finances; and make personal decisions as alternatives to guardianship (Tex. Est. Code § 1002.031). The law requires courts to find by clear and convincing evidence that a person cannot make decisions using Supports and Services before appointing a guardian (Tex. Est. Code § 1101.101(a)(D) & (E)). US federal agencies also have embraced supported decision-making as an alternative to guardianship. In 2014, the Administration for Community Living (ACL) in the US Department for Health and Human Services made funding available to create “a national training and technical assistance center on . . . supported decision-making.”

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Introduction to Supported Decision-Making and Its Emergence The agency described supported decision-making as “an alternative to and an evolution from guardianship” and stressed the importance of people “retain[ing] their own decision-making authorities . . . with the assistance of appropriate services and supports” (ACL, 2014). The US Department of Education also has supported efforts to decrease overreliance on guardianship, calling it “one of the most legally restrictive forms of support . . . [that] can also have negative effects on the individual” (Center for Parent Information and Resources, 2016). Working with an array of partners, the Department has given students, parents, and teachers resources to increase knowledge about alternatives to guardianship, including supported decisionmaking (Center for Parent Information and Resources, 2016). Private organizations likewise have embraced supported decision-making as an alternative to guardianship. In 2012, the American Bar Association (ABA) convened a summit to develop “concrete ways to move from a model of substituted decision-making, like guardianship, to one of supported decision-making, consistent with the human right of legal capacity” (ABA, 2013). In 2015, an ABA-published article called for increased adoption of supported decision-making, stating: “In contrast to overbroad or undue guardianship, Supported Decision-Making can increase self-determination by ensuring that the person retains life control to the maximum extent possible” (Martinis, 2015b). Also in 2015, the National Guardianship Association (NGA), which represents more than 1,000 guardians,

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Overview conservators, and fiduciaries across the United States, issued a position paper on guardianship and supported decision-making. The NGA concluded: “[s]upported decisionmaking should be considered for the person before guardianship, and the supported decision-making process should be incorporated as a part of the guardianship if guardianship is necessary” (NGA, 2015). Around the same time, in 2014, the National Resource Center for Supported Decision-Making (NRC-SDM) was formed through a grant from the ACL. The NRC-SDM launched a multiyear mission to increase knowledge and access to supported decision-making across the United States through: •

Publication, outreach, and training targeted toward individuals, families, professionals, and providers;

•

Advocacy for policies and practices that increase access to supported decision-making;

•

Research on supported decision-making to identify best practices; and

•

Annual symposia to discuss the state-of-the-art in supported decision-making and develop strategies to increase acceptance and use of supported decisionmaking (Blanck & Martinis, 2015). In another groundbreaking effort funded by ACL, in

2016, the NRC-SDM partners began the first longitudinal study of supported decision-making, designed to identify its impact and best practices, as well as to fill gaps in supported

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Introduction to Supported Decision-Making and Its Emergence decision-making. This is a first attempt to demonstrate the efficacy of supported decision-making and its association with self-determination.

Implications for Supported Decision-Making and Book Overview Even though supported decision-making has the “potential to be an empowering alternative to the much-maligned process of guardianship,” there are gaps in research, policy, and practice that must be addressed before it “can fulfill that promise” (Kohn, Blumenthal, & Campbell, 2013, p. 1157). Thus: It is imperative that substantial further research be conducted to examine how supported decision-making actually operates . . . Research is needed to determine the extent to which supported decision-making approaches achieve their goals, and the conditions under which they are likely to do so. (Kohn, Blumenthal, & Campbell, 2013, p. 1157)

This volume examines information, resources, and research on supported decision-making, including the theoretical and research underpinnings for supported decision-making, as well as the predicted and achieved outcomes of supported decision-making research and practice. The following chapters examine the ways in which supported decision-making can enable people with disabilities to achieve positive outcomes, including the enhancement of individual self-determination in all domains of life,

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Overview such as social integration, education, employment, and health care. Chapter 2 defines social-ecological models of disability, distinguishing them from deficit-based models. The elements of the social-ecological model (i.e., personal competencies, environmental demands, and support needs) are defined. The supports model and its implications for theory, research, and practice in the disability field are considered. Chapter 3 examines the role of a strengths-based understanding of disability and the growing field of positive psychology. The status of strengths-based research in the field is examined, and emerging applications of concepts developed in the field of positive psychology related to character strengths assessment and intervention are considered. The role of a strengths-based approach in developing supports for people with disabilities is discussed. Chapter 4 discusses how supported decision-making has the potential to enhance self-determination, defined as acting as a causal agent over one’s life. Self-determination is identified as a valued outcome in the disability field, as well as a predictor of outcomes including employment and community participation. This chapter introduces Causal Agency Theory, a theoretical framework for understanding the development of self-determination, and highlights the relationship between self-determination and supported decision-making in theory, research, and practice. Chapter 5 applies the social-ecological framework to understanding supported decision-making. It highlights

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Introduction to Supported Decision-Making and Its Emergence the role of decision-making abilities and competencies, environmental demands, and support needs in understanding the supports that will enable meaningful decisionmaking. Empirical research (our own) and practice implications of a social-ecological approach are examined. Differences in supported decision-making and other approaches to decision-making, such as guardianship and shared decision-making, are discussed. Cultural considerations related to decision-making, the influence of social values, and the implementation of supported decisionmaking internationally are discussed, including existing models of supported decision-making. Chapter 6 further explicates the role of decision-making abilities in law and practice related to supported decisionmaking. The role of law and public policy in shaping an understanding of decision-making abilities and capacities is discussed. Chapter 7 describes the role of environmental demands in supported decision-making. The individualized nature of these demands is presented, as well as demands associated with differing decisions. Domains within which decisions are made are introduced, as are evidence-based assessment strategies to understand the consequences of decisions and to explore these factors in creating supports for decisionmaking. Chapter 8 defines support needs for decision-making as emerging from the interaction of decision-making abilities and environmental demands. Understanding and assessing

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Overview the supports needed for decision-making, and using this information to build systems of supports, are described. Research is reviewed that defines the steps involved in making a decision; factors that may influence decision-making, such as cognitive, motivational, and emotional factors are reviewed. Chapter 9 reviews empirical research on supported decision-making (conducted by the authors and others), with an emphasis on the relationships between supported decisionmaking and quality of life outcomes, particularly for persons with intellectual disability. The chapter presents areas where research is lacking, and the need for a systematic framework based on empirical study for moving the field forward in understanding the relationships between supported decision-making, self-determination, and valued life outcomes – for example, in areas such as independent living, employment, health decisions, civic engagement, and recreational activities. Chapter 10 reviews and unifies current and emerging theory, research, and practice strategies applying a socialecological model of supported decision-making. In particular, evidence-based assessment tools that are being developed by the authors to understand decision-making abilities, environmental demands, and needed supports across the spectrum of disability are considered in a new unified theoretical and empirical model. Interventions to promote supported decision-making and self-determination that are being developed by the author team are described and applications and

24

Introduction to Supported Decision-Making and Its Emergence intervention strategies discussed. Issues related to cultural and social values and decision-making, and the interdependencies among people with intellectual disability, their families, and systems of support are also discussed. Chapter 11 presents information derived from the prior discussion of theory, research, and emerging assessment and intervention that may be used to build individualized systems of supports for people with disabilities over the life course, which enables supported decision-making to enhance positive life outcomes, including less restrictive guardianship arrangements and self-determination. Chapter 12 reviews and pulls together the implications of the information presented in the text for researchers, policy makers, and individuals and their families and supporters. The focus is on building cohesive theory, research, and

practice

related

to

supported

decision-making.

Implications for people with disabilities (e.g., with intellectual disability and psychosocial conditions over the life course) and for those that support them, as well as for communities and provider organizations, and for research and policy, are examined.

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PART II Strengths-Based Frameworks for Understanding Disability and Support Needs

2 Social-Ecological Models of Disability

C

onceptualizations and understandings of disability have shifted in recent decades, creating the context for supported decision-making to emerge

as a viable option for people with disabilities, linked to broader efforts to promote self-determination and quality of life. This chapter will review historical conceptualizations of disability, identify factors that precipitated changes in conceptualizations of disability throughout the world, and describe social-ecological models of disability that provide a conceptual framework for operationalizing emerging understandings of disability. Finally, we will discuss implications for disability theory, research, and practice with an emphasis on implications for supported decision-making and self-determination and quality of life outcomes.

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Strengths-Based Frameworks for Understanding Disability

Historical Conceptualizations of Disability Throughout modern history, disability has been viewed as a form of difference, or a deviation from normality (Wehmeyer, 2013a). While the response to disability has ranged from euthanasia to charity and remediation, depending on the time and societal context, the prevailing notion was that disability was something to eliminate or remediate when “worthy” of remediation (Blanck, 2014). Disability was apart from normal, not a part of normality. Given such conceptualizations of disability, there have been movements to limit the rights of people with disability, by either segregating them from society in institutions, adopting eugenic and sterilization policies to attempt to reduce the spread of disability, or imposing controlling and often discriminatory policies and practices particularly related to financial, health, and legal decision-making. At times, the focus was on control and power; at other times, the focus was protection from harm; and occasionally, the two intersected. Independent of the intent, however, these attitudes and efforts led to limitations of the legal rights of people with disabilities. As described in Chapter 1, as early as the thirteenth century, laws describing approaches for handling the estates of people deemed mentally impaired decreed that estates of individuals who would not recover should revert to the King. In 1540, the Court of Wards and Liveries was established in England to oversee people with mental impairments and

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Social-Ecological Models of Disability their guardians who were appointed to manage fiscal affairs (Wehmeyer, 2013a). The use of guardianship arrangements for people deemed to have lifelong mental impairments extended beyond early modern times in England and continues to influence legal systems throughout the world. In modern times, the presence of certain diagnoses and functional limitations (e.g., impairment in intellectual functioning) often has come to be viewed as requiring consideration of guardianship when a young person reaches the age of majority, which in most states in the United States is eighteen years of age. Overall, these conceptualizations limit the degree to which people with disabilities are viewed as entitled to and capable of benefiting from basic rights, including the right to legal agency. In addition to the emergence and perpetuation of guardianship models as a way to control and protect people with disabilities – and transfer control of property and decisions to others – multiple other forms of control and segregation have emerged, influenced, and limited the selfdetermination and quality of life of people with disabilities. These include segregated living, learning, and working environments, each of which also acts to support the ongoing restriction of basic human and civil rights, including the right to legal agency. For change to eventually emerge, disability had to be understood differently by society. In the 1960s, parents, professionals, and reformers began systemic efforts to create community-based services for people with disabilities. But it

31

Strengths-Based Frameworks for Understanding Disability was not until people with disabilities themselves united around the civil rights and self-advocacy movements and began asserting their legal capacity to be “rights-bearers” who self-determine their own lives, making choices and decisions about things that mattered to them, that issues related to self-determination and decision-making began to receive significant attention (Wehmeyer, Bersani, & Gagne, 2000). These advances, culminating in the passage of the Americans with Disabilities Act (ADA) in 1990, directed increased attention toward the role of manufactured environmental barriers in limiting the opportunities of people with disabilities, and the degree to which stereotypical attitudes, assumptions, and segregated programs limited the growth and development of people with disabilities (Blanck et al., 2014).

Defining the Social-Ecological Model of Disability Historical models of disability tended to focus on deficits and differences in functioning as defining characteristics of disability. As such, the belief was that disability resided within the person and was a problem in their functioning. Newer conceptualizations of disability, called “person–environment fit” or “social-ecological” models (the term we adopt in this text), fundamentally challenge the assumption that disability resides only within the person. The social-ecological model acknowledges that each person has a unique profile of capabilities and limitations.

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Social-Ecological Models of Disability However, it asserts that “disability” occurs at the interaction of that person’s unique profile of strengths and limitations and the demands of the environments in which he or she lives, learns, works, plays, and so forth. Thus, all people have differing profiles of strengths and limitations, and disability is not inherent to the person. The social-ecological model of disability operates in this interactive paradigm – for example, as under laws like the ADA where sometimes only an inaccessible aspect of physical environment is “disabling.” For this reason, disability often is conceived in law and policy as the result of mismatches between the person’s particular profile of strengths and needs and their environment. As such, disability may create a need for supports and “accommodations” to enable the person to fully and equally meet the demands of the environment (Thompson et al., 2009). The appropriate response is not removal from the environment and removal of rights. Instead, the objective is to determine the supports needed to enable the person to be successful in the environments and activities (e.g., decision-making) they choose. Supports and accommodations may include modifications to the environment (e.g., removing physical and cognitive barriers to accessing and participating). They also may include providing instruction, mentoring, or coaching to enable the person to meet specific demands (e.g., learning problem-solving skills). In addition, they may include supports that mitigate the unfair demands of the environment – for example, technological supports to address inaccessible

33

Strengths-Based Frameworks for Understanding Disability websites, person-based supports, and other resources and strategies (Blanck, 2017). The modern social-ecological model thus changes the question from is the person “able” to complete a task or engage in an activity, such as making life decisions, to what reasonable supports does the person need to be successful in completing the activity? Under the prior deficitbased models, if the response to the first question (e.g., can a person make a decision about medical care) was no, plenary or full guardianship most often would have been the default option. Under the newer social-ecological models, which are reflected in the human and civil rights-based paradigm, the question becomes: what supports and accommodations does the person need to be successful in making medical and other daily decisions? By closely assessing the person’s support needs related to decision-making, an appropriate “personcentered” plan for designing and implementing supports may be generated. The resultant plan of action may involve developing cognitively accessible and appropriate materials and information about the decision that must be made. It may include having a trusted friend or advisor consult on the decision. Or, it may involve medical or other professionals promoting comprehension and support of the person’s will and preferences in decision-making (Blanck & Martinis, 2015). In the following sections, we describe components of the social-ecological model of disability, followed by discussion of

34

Social-Ecological Models of Disability illustrative disability classification systems that adopt a social-ecological framework.

International Classification of Functioning One of the earliest applications of concepts associated with a social-ecological model was the International classification of impairments, disabilities, and handicaps (ICIDH) (WHO, 1980). The ICIDH situated disability within a framework of “typical” human functioning, describing health conditions as impacting that functioning. This represented a fundamental shift from the traditional medical model, which equated health conditions with deficits in functioning. While the ICIDH did not fully recognize the role of the environment and the interaction between health conditions and the environment, it acknowledged the impact of limitations in body anatomy and functions on life activities, and participation in social life. Specifically, the ICIDH described: (1) the “exteriorization of a pathology” in body anatomy and functions (e.g., as pertaining to intellectual disability, central nervous system, and intelligence), (2) “objectified pathology” as expressed in the person’s activities (e.g., adaptive behavior skills), and (3) the “social consequences of pathology” (e.g., participation in social life domains) (WHO, 1980, p. 30). The ICIDH was expanded to recognize the impact of contextual factors (e.g., environmental and personal factors) in shaping human functioning. The ICIDH successor, the International classification of functioning, disability, and

35

Strengths-Based Frameworks for Understanding Disability health (ICF; WHO, 2001), recognized that limitations in human functioning are not necessarily linear and causal consequences of a difference in body functions and structures. Rather, human functioning should be conceived as interactive processes, where each factor may influence dimensions of functioning and each other factor, either directly or indirectly (Wehmeyer, 2013b). The ICF removed “disability” from classifications of diseases and placed it within a model of typical human functioning. The ICF views functioning as an umbrella term for all life activities of a person and encompasses body structures (e.g., anatomical parts of the body) and functions (e.g., physiological and psychological functions of body systems), personal activities (e.g., execution of a task or action by an individual), and participation (e.g., involvement in a life situation).

Limitations

in

functioning

are

labeled

a “disability.” Disability may result from any nontypical functioning in one or more of the three dimensions of human functioning comprised of body structures and functions, personal activities, and participation. The health condition of an individual may affect his or her functioning directly or indirectly in each or all of the three major dimensions. Health conditions are “disorders,” “diseases,” or “injuries,” as classified in the International statistical classification of diseases and related health problems (ICD-10). The ICD-10 provides an etiological framework for health conditions affecting human functioning.

36

Social-Ecological Models of Disability Finally, the ICF identifies contextual factors that include (1) environmental factors and (2) personal factors, which are associated with the background of an individual’s life. They may have an impact on the individual’s functioning and are to be considered in the evaluation of human functioning. Environmental factors make up the physical, social, and attitudinal environment in which people live and conduct their lives. Personal factors are characteristics of a person such as gender, race, age, health conditions, fitness, lifestyle, habits, upbringing, coping styles, social background, education, profession, past and current experience (including past life events and concurrent events), character style, individual psychological assets, and other characteristics, all or any of which may play a role in disability at any level. Essentially, the introduction of the ICIDH, which first conceptualized disability within the context of typical human functioning, and the ICF, which removed disability from taxonomies of disease and disorder, changed how disability is understood. These models represent socialecological or “person–environment fit” models. That is, disability itself is not a disease or disorder existing within the person, but only exists in the gap between the person’s strengths and capabilities and the demands of the environment and context. This conceptualization fundamentally changes how one thinks about promoting the functioning of people with disabilities. Rather than viewing disability as something within a person or a problem in functioning that needs to

37

Strengths-Based Frameworks for Understanding Disability be fixed and addressed by removing rights, under socialecological models, disability is understood as a mismatch between a person’s capabilities and the demands of the environment that creates a need for support in the environment. Instead of remediating the person, there is a need to identify supports that enable the person to meet the demands of the environment, including demands for decision-making.

American Association on Intellectual and Developmental Disabilities The

American

Association

on

Intellectual

and

Developmental Disabilities (AAIDD) is a leader in definition and classification systems for intellectual disability, having published a terminology and classification system since 1911. Beginning with the ninth edition of Mental retardation: Definition, classification, and systems of supports (Luckasson et al., 1992), the authors promoted a shift in thinking about intellectual disability, recognizing, as did the ICIDH and ICF, that intellectual disability was not a characteristic of a person, but instead, a result of a mismatch between personal capacities and environmental demands. While diagnostic criteria for intellectual disability remained largely the same (Schalock et al., 2007), it was situated within a broader framework of human functioning. It was recognized that differences in intellectual functioning and adaptive behavior (i.e., the diagnostic criteria) interacted with other factors (e.g., health, participation, and

38

Social-Ecological Models of Disability contextual factors) to influence human functioning. As such, the purpose of diagnosis and classification shifted. From a social-ecological perspective, the ultimate goal of identifying disability is to build systems of supports that promote optimal human functioning, and full and equal participation in society. The purpose of diagnosis and classification is to identify needed supports to enhance human functioning (Thompson et al., 2009), not to identify deficits in functioning to be remediated. AAIDD’s application of the social-ecological model emphasizes the importance of identifying mismatches between personal capacities and environmental demands, and identifying the supports needed to address these mismatches (Schalock et al., 2010). The model “(a) exemplifies the interaction between the person and their environment; (b) focuses on the role that individualized supports can play in enhancing individual functioning; and (c) allows for the pursuit and understanding of ‘disability identity’ whose principles include self-worth, subjective well-being, pride, common cause, policy alternatives, and engagement in political action” (Schalock et al., 2007, p. 117).

Diagnostic and Statistical Manual of Mental Disorders The Diagnostic and statistical manual of mental disorders (DSM) provides a classification system for mental disorders, including many conditions associated with disability. The DSM had adopted a multiaxial approach to classification based within a biopsychosocial model, recognizing the

39

Strengths-Based Frameworks for Understanding Disability impact of biological, psychological, and social factors on functioning. However, in the most recent edition of the DSM (DSM-5; American Psychiatric Association, 2013), there is a shift toward considering disorders on a spectrum of functioning rather than using a multiaxial classification approach. For example, DSM-5 shifted classification of autism spectrum disorders from an array of five distinct developmental disorders to a three-level system based on the amount of support required in social communication and restricted, repetitive behavior, reflecting the core diagnostic features of autism spectrum disorders. As such, the emphasis is on the spectrum of functioning, recognizing that various factors associated with conditions impact functioning and necessitate different supports. Thus, within the autism spectrum disorder classification system, Level 3 designates the need for very substantial support, Level 2 the need for substantial support, and Level 1 the need for some support.

Components of a Social-Ecological Model of Disability In the previous sections, we provided an overview of applications of social-ecological models. In the following sections, we provide detailed information on the three key components of social-ecological models – personal competencies, environmental demands, and support needs – with a focus on their application to decision-making.

40

Social-Ecological Models of Disability

Personal Competencies Social-ecological models assume that an array of factors influence human functioning, including personal characteristics and competencies. For example, with regard to intellectual disability, such characteristics include intellectual functioning and adaptive behavior as well as personal factors (i.e., health conditions, social competence, gender, race/ ethnicity) that shape who a person is. To effectively assess the supports that a person will need, the strengths and areas of need that each person has must be identified to effectively determine how these strengths and needs interact with environmental demands. As described in greater depth in Chapter 8, personal competencies related to decision-making influence the supports a person needs to successfully exercise legal agency and make decisions with supports regarding one’s life. Decision-making is defined as making choices among competing courses of action (Baron & Brown, 1991; Hickson & Khemka, 2013). In making most decisions, people must judge which solution is best at a given time in context by (1) identifying alternative courses of action, (2) identifying the possible consequences of each action, (3) assessing the probability of each consequence occurring, (4) choosing the best alternative, and (5) implementing the decision (BeythMarom et al., 1991; Furby & Beyth-Marom, 1992; Hickson & Khemka, 2013). Although the ability to engage in the decision-making process is impacted by personal characteristics, including

41

Strengths-Based Frameworks for Understanding Disability cognitive and mental capabilities (Wiliner et al., 2010), researchers find that people who have limitations in intellectual functioning can engage in the process with supports matched with environmental demands (Bailey, Willner, & Dymond, 2011; Lotan & Ells, 2010; Saaltink et al., 2012). Such research provides a framework for enabling people with disabilities to retain legal agency or “capacity” and consider the supports needed to engage in decision-making.

Environmental Demands Another key component of social-ecological models of disability is examination of the environmental demands a person faces. Only in understanding such demands may the appropriate supports needed be identified. Further, the reference environments should be age-appropriate, integrated environments. A social-ecological model assumes that people with disabilities are a part of community environments. As such, supports should be provided to enable full participation, self-determination, and quality of life in those environments. The environments preferred by the person with a disability and their systems of supports must be identified. A personalized or person-centered assessment of support needs, in relation to environmental demands, allows for consideration of individual preferences as well as competencies, and individualized solutions. When such individualized assessment does not occur, programs that provide the same solution for all people with a disability (e.g., full

42

Social-Ecological Models of Disability guardianship models) emerge that do not consider individualized needs and capabilities. Assessments of support needs must consider multiple environments, related to age and context, including community and home living, employment, learning and participation, advocacy, social relationships, and health and safety (Thompson et al., 2015a; Thompson et al., 2016). With regard to decision-making, there are several domains that are often viewed as important and influence discussions about supported decision-making and guardianship, including health needs, legal agency, financial planning and money, social relationships, and community living (Shogren & Wehmeyer, 2015a).

Support Needs Social-ecological models emphasize that people with disabilities may experience a mismatch between their personal capacities or abilities and environmental or contextual demands, which often creates a need for supports. Support needs is defined as “a psychological construct referring to the pattern and intensity of supports necessary for a person to participate in activities linked with normative human functioning” (Thompson et al., 2009, p. 135). Supports are resources and strategies that enhance human functioning (Luckasson et al., 1992). Although everyone uses supports, the types and intensity of supports needed by people with intellectual and developmental disabilities are assumed to be different from those

43

Strengths-Based Frameworks for Understanding Disability needed by most people in terms of intensity, duration, and type. The same is the case for supports related to decisionmaking, particularly with regard to decisions that are complex and high-risk. As for all individuals, supports needed for the decision-making of people with disabilities vary based on the environmental demands.

Implications for Theory, Research, and Practice Social-ecological models provide a framework for expanding the application of supported decision-making to people with disabilities from a legal and supports planning perspective. As described in Chapter 1, there are legal- and practicerelated implications to shifting from deficit-based to socialecological understandings of disability, including a shift from default guardianship to supported decision-making models. This creates an opportunity to think broadly about supported decision-making as a framework for theory, research, and practice that leads to enhanced selfdetermination and quality of life for people with disabilities. Supported decision-making not only has legal implications but also has applications within the context of supports planning based on a social-ecological understanding of disability. Planning teams need to develop individualized processes building on person-centered planning models that facilitate self-directed supports for decision-making. This, in turn, helps promote legal agency by the person with a disability, enhancing self-determination and quality of

44

Social-Ecological Models of Disability life outcomes. One key aspect of such individualized supports for decision-making is consideration of effective strategies in practice to identify and implement supports that are defined by the person and their systems of supports, which are aligned with the person with a disability’s will and preferences, and support needs. The next chapter continues to establish the theoretical and empirical underpinnings for these efforts.

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3 Strengths-Based Approaches: Positive Psychology and Disability

T

he previous chapter suggested that the emergence of social-ecological models of disability supported the central concepts of supported decision-making.

Indeed, the adoption of social-ecological models of disability is part of the broader trend in the human sciences toward strengths-based and person-centered approaches to conceptualize issues that previously had been pathologized and medicalized, as discussed in Chapter 2. This chapter examines how the adoption of social-ecological models is part of and the impetus for strengths-based models of disability, which emphasize supports as central to human functioning.

Positive Psychology As a discipline, positive psychology came to the forefront in the late twentieth century, in large measure due to the

46

Strengths-Based Approaches: Positive Psychology and Disability writings of psychologist Martin Seligman, who as president of the American Psychological Association, argued that psychology, as a discipline, had moved too far from its original purposes and intents, those being to improve the lives of people. Seligman made the case for the importance of a “positive psychology,” one that “emphasizes the understanding and building of the most positive qualities of an individual” (Seligman, 1999, p. 559). Writing

in

a

seminal

article

in

the

American

Psychologist, Seligman and Csikszentmihalyi (2000) argued that psychology, as a field, had: [B]ecome a science largely about healing. It concentrates on repairing damage within a disease model of human functioning. This almost exclusive attention to pathology neglects the fulfilled individual and thriving community. The aim of positive psychology is to begin to catalyse a change in the focus of psychology from a preoccupation only with repairing the worst things in life to also building positive qualities. (p. 5)

Seligman and Csikszentmihalyi (2000) argued that the field of psychology is about “valued subjective experiences: wellbeing, contentment, and satisfaction (in the past); hope and optimism (for the future); and flow and happiness (in the present)” (p. 5). Positive psychology is, at the individual level: [A]bout positive individual traits: the capacity for love and vocation, courage, interpersonal skill, aesthetic sensibility,

47

Strengths-Based Frameworks for Understanding Disability perseverance, forgiveness, originality, future mindedness, spirituality, high talent, and wisdom. (p. 5)

The special issue of the American Psychologist in which Seligman and Csikszentmihalyi were writing had other articles on happiness, subjective well-being, optimism, faith and religiosity, self-determination, creativity, giftedness, and positive youth development. In the intervening years, the field of positive psychology has grown and matured. Although there are no consensus definitions of positive psychology (nor, realistically, would one expect there to be for such a large field), a number of perspectives have been forwarded. Snyder and Lopez (2009) edited the Oxford handbook of positive psychology (second edition) and, in a preface in that text, psychologist Christopher Peterson said of positive psychology: Positive psychology is the “scientific” study of what makes life most worth living. It is a call for psychological science and practice to be as concerned with strength as with weakness: as interested in building the best things in life as in repairing the worst; and as concerned with making the lives of normal people fulfilling as with healing pathology. (p. xxiii)

The table of contents for the Oxford handbook of positive psychology is testimony to the growth of the discipline since Seligman’s proclamations in the late 1990s. In addition to all of the areas that appeared in the aforementioned special issue of the American Psychologist, topics included positive

48

Strengths-Based Approaches: Positive Psychology and Disability emotions, character strengths, resilience, aging well, positive affectivity, mindfulness, problem-solving appraisal, compassion, empathy and altruism, gratitude, humility, toughness, positive schools, positive workplaces, spirituality, and others. To identify general themes in the field, Hart and Sasso (2011) conducted a review of the extant literature on positive psychology. They identified more than 20,000 articles that had been published between 1998 and 2009 that fell within six overarching themes. Those themes were: “(a) virtues, character strengths, positive personality traits, abilities, and talents; (b) happiness, positive emotional well-being, fulfillment, and quality of life; (c) development processes associated with growth, fulfillment, actualization of potential, and the authentic self; (d) the good life or the life worth living; (e) thriving and flourishing, and (f) resilience or adaptive functioning/behavior” (p. 83). For the sake of simplicity, we adopt the definition that positive psychology is the pursuit of understanding optimal human functioning and well-being. We pose the question that, if this is something that is good for psychology, in general, and specifically for all people, then why would not a similar focus on conceptions of disability be warranted? The following section examines answers to this question.

Applications of Positive Psychology to Disability To what degree have issues of disability been addressed within the positive psychological literature? As found in

49

Strengths-Based Frameworks for Understanding Disability the discussion of the history of disability as rooted in conceptualizations of disease and pathology in Chapter 2, the issues that led to the emergence of positive psychology are similar. In 2013, Wehmeyer edited the Oxford handbook of positive psychology and disability and, in this text, Shogren (2013) conducted a review of articles published in the Journal of Positive Psychology from its initial publication (2006) through volume 6, issue 2 (2011) to see what, if any, disability presence existed. There were 162 articles published in that span, and six (4 percent) explicitly mentioned disability or a health-related issue that may be associated with disability. Most of these focused on the latter, that is, on specific health conditions such as asthma and chronic illness. Shogren concluded that, though not prevalent, there was an emerging focus on disability-related issues, although less so for disability independent of disease states. The presence of a disability focus is only now emerging in the discipline of positive psychology. Yet there is a trend in research in disability-related fields that mirrors the growth of the positive psychology movement. Shogren and colleagues (2006) reviewed the literature in the field of intellectual disability to examine the use of constructs derived from positive psychology in research in the intellectual disability field over a thirty-year period. They reviewed one randomly selected issue in each year from 1975 to 2004 from five journals in the field, resulting in 144 journals and 1,124 research articles, literature reviews, and program descriptions. Each article was coded across multiple dimensions

50

Strengths-Based Approaches: Positive Psychology and Disability pertaining to the adoption of a strengths-based perspective and for the inclusion of positive psychology constructs. From the total pool of articles, those that focused on human capacities of people with intellectual disability (not their family members, other support providers, and systems) were coded to see if they adopted a strengths, a deficits, or a mixed or neutral perspective to understanding human capacity. Articles that adopted a strengths and mixed perspective were further coded to determine if they incorporated a construct associated with positive psychology. Of articles that focused on a human capacity, more than one-third (35 percent) adopted a strengths perspective. This focus changed significantly over time, however, from a low of 22 percent of articles in 1975–1984 to a high of half (50 percent) of the articles in 1995–2004. Of these articles, 15 percent

included

a

construct

associated

with

positive

psychology as a primary focus, but this focus gradually shifted. From 1975 to 1984, only 9 percent of the articles focused on a positive psychology construct; from 1985 to 1995, 15 percent of articles; and from 1995 to 2004, 24 percent of articles. These trends mirrored those in the literature of other disciplines, including counseling (Lopez et al., 2006) and health psychology (Schmidt et al., 2011). The most frequently cited positive psychology constructs included personal control (13 percent of articles), personal relationships (10 percent), and interpersonal skills (5 percent). Happiness, one of the most often discussed themes in positive psychology research,

51

Strengths-Based Frameworks for Understanding Disability was only included in 1 percent of studies (Shogren et al., 2006). The trend in the disability-related literature (at least in one primary disability category of intellectual disability, although it seems likely to be so across other disability categories) has been toward strengths-based approaches that emphasize positive attributes. The aforementioned Oxford handbook of positive psychology and disability (Wehmeyer, 2013b) provided the first comprehensive review of the application of psychological constructs in a disability context. One recurrent theme in the handbook is that there is little research about and focus on positive psychological constructs in the field. That is not surprising, however, given the fact that notions of disability as pathology-based personal characteristics continue to outweigh notions of disability as part of natural human functioning, existing on a continuum of strengths and areas of support needs. A more recent volume, the Handbook of positive psychology in intellectual and developmental disabilities (Shogren, Wehmeyer, & Singh, 2017), addresses similar issues specifically for people with intellectual and developmental disabilities, showing the growth in the emphasis on positive psychology within the disability field. The compelling message from the Handbook of positive psychology and disability and the Handbook of positive psychology in intellectual and developmental disabilities is that there is a base of research and knowledge on which to build a strengths-based approach to disability.

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Strengths-Based Approaches: Positive Psychology and Disability Like the table of contents for the Handbook of positive psychology, the Handbook of positive psychology and disability and the Handbook of positive psychology in intellectual and developmental disabilities include chapters on classic positive psychology constructs, such as optimism, hope, self-determination, resilience, problem-solving, decision-making, gratitude, and career design. There are also areas that have a long history of research and operationalization in the disability context that situate within the positive psychology approach to well-being and optimal development, such as research on quality of life. Strikingly, with regard to what disability may contribute to the field of positive psychology, there is a wellresearched foundation of interventions that promote “the good life” and optimal functioning. Topics covered in Wehmeyer (2013b) include positive behavior interventions and supports and their application to promote quality of life, with emphasis on supports and support needs (discussed in detail in the section on “Supports Paradigm” later in the chapter), as well as a focus on supported employment, family quality of life, and aging with disability. The chapters in the handbook detail practices that may result in improved life satisfaction and well-being, with applicability beyond the disability context. Thus, while the disability field may be catching up with positive psychology on the research front, it may be able to lead with regard to interventions and supports that result in outcomes central to positive psychology.

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Strengths-Based Frameworks for Understanding Disability

Self-Determination Issues of free will in decision-making are central to the positive psychological construct of self-determination, as detailed in the next chapter. The emphasis on selfdetermination in the field is an additional impetus in the movement toward supported decision-making. Focus on self-determination was among the top-five positive psychological constructs in the Shogren and colleagues (2006) literature review, and the overall most frequently cited positive psychology construct, personal control, is closely related. Shogren and colleagues (2006) coded articles as to whether

they

addressed

a

component

element

of

self-determined behavior (for example, autonomy, choicemaking, goal-setting, self-advocacy, decision-making, or problem-solving), finding 165 articles addressing one or more of these constructs, with autonomy, choice-making, and selfinstruction being the top three. Similar to the trends found over the three decades for the application of positive psychological constructs, there was an increase in the proportion of articles focusing on component elements of self-determined behavior across the three decades: 9 percent of articles in 1975–1984; 14.5 percent of articles in 1985–1994; and 18.3 percent of articles in 1995–2004. There is a strong history of interventions that promote self-determination in the disability context. These provide guidance in the field of positive psychology in general, but also further development of ways to promote decision-

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Strengths-Based Approaches: Positive Psychology and Disability making skills and abilities for purposes of supported decision-making, as detailed in later chapters.

Supports Paradigm Strengths-based approaches to disability require different responses from “interveners” than those predicated on pathology-based conceptualizations of disability. First and foremost, as suggested in the previous two chapters, these new models include disability as part of natural human functioning (Blanck, 2016a, 2016b). Conceptualizations of “human functioning” have been put forward by the World Health Organization (WHO) and other organizations proposing social-ecological models of disability, including the American Association on Intellectual and Developmental Disabilities (AAIDD). As described in Chapter 2, the WHO International classification of functioning, disability, and health (ICF) views “functioning” as an umbrella term for all a person’s life activities and encompasses body structures (anatomical parts of the body) and functions (physiological and psychological functions of body systems), personal activities (execution of a task or action by an individual), and participation (involvement in a life situation). The AAIDD model proposes five dimensions of human functioning: intellectual abilities, adaptive behavior, health, participation, and context. Both of these paradigms, however, are proposed in the context of a classification or diagnostic system.

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Strengths-Based Frameworks for Understanding Disability The field will stay stuck in a pathology model, however, if it continues to conceive human functioning only in the terms used to describe processes leading to diagnosis and classification. Blanck (in press), for example, examines the fluidity and intersectionality of human characteristics across the life experience. While certainly important, categorical systems by contrast do not capture the full meaning of the notion of “human functioning.” Indeed, on reviewing the prior discussion on strengths-based approaches and positive psychology, we adopted the definition of positive psychology as the pursuit of understanding optimal human functioning and wellbeing. Of course, the dimensions of “optimal human functioning” are as broad as the areas of focus in positive psychology and the term defies easy definition and categorization. Optimal human functioning means being the best we can be. This implies that optimal functioning is individualized and predicated on individual strengths, preferences, interests, values, and capacities, consistent with the principles of the United Nations Convention on the Rights of Persons with Disabilities (Blanck, 2016a). It implies that functioning occurs over time across many contexts and domains – home, school, work, social lives, etc. It also implies that we live in both concert with and opposition to these environments. Optimal human functioning likewise is influenced by dynamic relationships, motivations, and emotions among and between physical and psychological health and wellness, and in environments that support and thwart health

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Strengths-Based Approaches: Positive Psychology and Disability and wellness, as well as personal capacities and abilities. It is without question that “optimal” human functioning implies people are meaningfully involved in decisions that impact their lives in the ways and degrees that they desire and to the maximum extent possible. Human functioning thus implies that one has the equal opportunity to live, learn, work, and play in environments that are typical of all people. That is a broad-brush statement, in that there are individuals for whom optimal functioning involves being isolated in a mountainous region in pursuit of unique knowledge or athletic adventures. Nevertheless, for the majority of people, environments are not that extreme, and rather involve everyday occurrences at schools, workplaces, movie theaters, concert halls, restaurants, bookstores, shopping malls, dental offices, and on the Internet. The AAIDD system emphasizes “typical” in human functioning only for the reason that many people with disabilities today are still segregated from and cannot gain equal access to these settings. The AAIDD manual (Schalock et al., 2010) proposed a system of supports to enable people to bridge the gap between personal capacity and the demands of the environments that comprise the places where integrated human functioning occurs. Thompson, Wehmeyer, and colleagues (2017) argue that the shift to social-ecological models of disability has introduced a new paradigm in the fields of social sciences and human services, which references a set of assumptions and viewpoints that guide work in that field.

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Strengths-Based Frameworks for Understanding Disability Social-ecological models thus have necessitated a new paradigm in this field, referred to as a “supports paradigm.” Thompson, Wehmeyer, and colleagues (2017) chart the paradigmatic shifts in the disability field, from the initial medical-institutional paradigm to the normalization-community services paradigm, to the present supports paradigm. In large measure, as said, the prior paradigms emphasize diagnosis, classification, and homogeneous grouping to deliver services. The supports paradigm shifts emphasis from diagnosis, classification, and homogeneous grouping to consideration of backing a person’s needs to be successful in daily contexts and environments. Social-ecological and person–environment fit models of disability emphasize that disability exists only in the gap between the person’s capacities and the demands of the particular environment in which that person must function; a supports paradigm emphasizes the means to understand disability and the need to design supports that enable people to be included in society. Thompson (2013) described the supports paradigm as: Intellectual disability is best understood in terms of the fit between personal competency and the demands of community environments. Understanding people this way focuses professional efforts on modifying the context by either changing the environment, such as is accomplished through universal design, or introducing personalized supports. (p. 516)

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Strengths-Based Approaches: Positive Psychology and Disability As Thompson, Wehmeyer, and colleagues (2017) noted, “evaluating whether or not a person is ready for participation in community activities and settings is not relevant to a person– environment fit model of disability, what is relevant is evaluating whether or not supports are in place that enable a person to be successful in typical environments” (p. 26). The supports paradigm emphasizes three focal points for intervention. First, efforts are made to improve the capacity of the person for whom supports are designed. Second, efforts focus on modifying environments and contexts to better enable the person being supported to be successful in typical environments. Third, personalized supports are provided to augment and extend the modifications to the environment and to “bridge the gap” between the person’s capacities and the demands of the environment. Within the AAIDD model (Schalock et al., 2010), supports are defined as “resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning” (p. 18). Supports are anything that enhances individual functioning, where such functioning is understood to mean, as discussed in Chapter 2, all life activities, as per the WHO ICF. Supports may refer to technology that aids in successful functioning, such as apps on smartphones that provide directions to a location and that mitigate the impact of a limitation to body structure and functions. Other examples are using a power wheelchair or a synthesized-speech augmentative communication device.

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Strengths-Based Frameworks for Understanding Disability Supports also may refer to the relationships with people who enable someone to be more successful in the environment, from the role of friends and family in assisting a person to find a job and a place to live to that of a coworker who provides needed assistance by job coaching or mentoring. Supports may refer to the monetary resources available from governmental and nonprofit organizations and to the types of community services people use to function successfully in the environments, such as using the municipal transportation system available to all citizens. The key to the supports paradigm is that aids are individually determined and designed to enable people to function successfully in inclusive environments. They are personalized to meet the needs of the individual. The AAIDD has introduced measures that assist in designing such supports. These measures quantify a person’s “support needs.” Support needs is a construct that varies from the notion of generic supports, in that support needs “refer to the pattern and intensity of supports necessary for a person to participate in activities linked to normative human functioning” (Schalock et al., 2010, p. 109). Given the broad nature of the concept, it is difficult to develop a measure of “supports” themselves. In theory, anything may be conceptualized as a support if it meets the definitional criteria of enabling people to function successfully in inclusive environments. Support needs refers to the pattern and intensity a person requires to function successfully, ranging from limited support needs to extensive

60

Strengths-Based Approaches: Positive Psychology and Disability support needs. As Schalock and colleagues (2010) noted, “[a] person’s intensity of support needs reflects an enduring characteristic of the person rather than simply a point-intime description of the need for a particular type of support” (p. 113). Fundamentally, since the social-ecological and person–environment fit model of disability conceptualizes disability as external to the person and as a function of the fit between the person and the demands of the environments, the support needs construct provides one way to measure the intensity of a person’s needs, presuming that the person’s support needs remain fairly consistent across time. To measure support needs, the AAIDD proposes several measures, such as the Supports intensity scale-adult version (Thompson et al., 2015a) and the Supports intensity scalechildren’s version (Thompson et al., 2016). These standardized, norm-referenced measures provide a means to assess the intensity of a person’s support needs. They examine life domains in which more or less support may be needed, from school, community, work, and life-long learning contexts. The task for interventionists is to reduce the “mismatch” between the person’s capacities and the demands of the context to improve personal life outcomes, which is embodied in the notion of supported decision-making. Deficit models viewed disability as residing within the person; the person was, in some way, aberrant or atypical. Thus responses to disability were to diagnose, classify, homogeneously group,

61

Strengths-Based Frameworks for Understanding Disability and attempt to fix, cure, or otherwise change the person. Going back to prior dominant paradigms in the disability movement (described by Thompson, Wehmeyer et al., 2017), this approach was situated in the medical-institutional paradigm. Derived from pathology-based models of disability, attempts to intervene emphasized assessments to identify pathology (e.g., IQ testing), followed, by and large, by segregation and homogeneous grouping. The normalizationcommunity services paradigm changed the location for services from large congregate settings to the community. Yet, since the understanding of disability did not change, the tendency to segregate and classify followed into this era, resulting in “separate,” and purportedly “equal,” classrooms, group homes, and sheltered workshops. For decision-making, the presumption in previous eras was that, for some people with intellectual disability, the level of their impairment (e.g., deficit as measured by IQ tests) was so extensive that the only option available was guardianship and, more often than not, plenary guardianship. Within the social-ecological or person–environment fit model, the relevant question becomes not whether a person’s degree of intellectual impairment is such that guardianship is “necessary,” but instead what types, intensity, duration, and frequency of supports enable someone to maximally participate in decisions that impact their lives. The ultimate goal within the supports paradigm is to lessen the gap between a person’s capacities and the

62

Strengths-Based Approaches: Positive Psychology and Disability demands of the environment so that the person may function as chosen with needed supports. It is important, though, when considering complex issues pertaining to decisionmaking (e.g., a complex medical or financial decision), that the objective may not be to support “independent” decisionmaking, but to put in place supports that maximize the person’s meaningful participation in decisions that impact their life to the maximum extent possible. This harkens back to principles established in the 1980s for maximal participation and partial participation. The principle of maximal participation was that all people have the right to fully participate in activities that contribute to the quality of their lives (Baumgart et al., 1982). The means to achieve maximal participation is mediated by the principle of partial participation, which affirms that all people may meaningfully participate “at least in part, in a wide variety of least restrictive school and nonschool environments and activities” (Baumgart et al., 1982, p. 19). In essence, even the most complex of tasks, including decision-making, may be broken down into discrete steps, components, and elements, and people may be supported to engage in those elements that they may learn to do independently, do with some level of support, or skip entirely if not necessary for the desired outcome (e.g., maximal participation in the decision-making process). Wehmeyer and Shogren (2017) delineated the decisionmaking process into primary and secondary steps (see Table 3.1). Breaking a complex process into component

63

Strengths-Based Frameworks for Understanding Disability Table 3.1 Primary and secondary steps of the decision-making process Primary steps

Secondary steps

Recognition of the circumstances that are creating the threat or opportunity that leads to a decision needing to be made. Awareness of the need to make a decision. Identification of the goal in which the decision is in service of. Identification of action

a.

alternatives.

Recognition of known action alternatives.

b.

Generation of unknown

c.

Determination of the rele-

action alternatives. vancy of the action alternatives. •

Determination if action alternatives are feasible and actionable.

•

Determination

if

the

action alternatives serve the goal. •

Determination

of

the

relevance of action alternatives to the circumstances that are creating the threat or opportunity. d.

Determination if there is a sufficient pool of relevant action alternatives.

64

Strengths-Based Approaches: Positive Psychology and Disability Table 3.1 (cont.) Determination of consequences of a. each action alternative.

Recognition of known consequences of each action alternative.

b.

Generation of not previously known consequences of each action alternative.

c.

Recognition of known risks associated with each action alternative.

d.

Generation of unknown risks associated with each relevant action alternative.

e.

Recognition of known benefits associated with each action alternative.

f.

Generation of unknown benefits associated with each relevant action alternative.

Determination of probability of each consequence occurring if the action were undertaken. Establishment of the relative

a.

alternatives.

each relative action alternative and consequence.

Ranking preference for each of the relevant action

importance (value or utility) of b.

Ranking preference for each

c.

Determining preference for

of the consequences. self-directed vs. otherdirected action alternatives. d.

Determination of just-right match for an action alternative and associated consequence.

65

Strengths-Based Frameworks for Understanding Disability Table 3.1 (cont.) e.

Determination of the efficacy of each action alternative and its associated consequence for achieving the goal.

Integration of the probability and importance determinations to identify the most attractive course of action. Adapted from: Wehmeyer, M. L. & Shogren, K. A. (2017). Decision making. In M. L. Wehmeyer, K. A. Shogren, T. D. Little, & S. J. Lopez (eds.), Handbook on the development of self-determination. New York: Springer.

steps provides the opportunity to identify the skills and knowledge a person may be taught, where a person may receive support for participation, which steps may be modified or excluded to allow progress, and, finally, steps that need to be performed by someone else. Further, complex processes such as decision-making may be supported by technology (Blanck, 2014). Davies, Stock, and Wehmeyer (2003) developed a software prompting system, called Pocket Compass, that uses intelligent audio and visual cues to assist people with intellectual disability to navigate through a complete vocational task, including steps that involve making a decision.

66

Strengths-Based Approaches: Positive Psychology and Disability

Conclusion One central point of this chapter is that the emergence of social-ecological models of disability may be aligned with similar movements in positive psychology. This alignment has resulted in changes to prevailing disability intervention paradigms, moving the field toward a supports paradigm. The supports paradigm enables people to maximize their participation in tasks across all life domains, including the task of decision-making. A second central point is related to a prevalent positive psychological construct in the disability context, which is self-determination. Maximally participating in decisions that impact one’s life leads to enhanced self-determination. Research demonstrates this positive relationship in school and community contexts. The next chapter provides an overview of self-determination and “Causal Agency Theory,” which is a paradigm proposed to further research and support personal development in the area of self-determination.

67

4 Causal Agency Theory: Self-Determination and Disability

A

s described in previous chapters, supported decision-making has the potential to enhance selfdetermination as it promotes greater involvement

of people with disabilities in decisions about their lives. This chapter will introduce Causal Agency Theory, a theoretical framework

that describes

how people become

self-

determined. It introduces a definition of self-determination and its essential characteristics that will be used throughout the remaining chapters of this book. Additionally, research linking self-determination and quality of life outcomes is examined along with its implications for supported decisionmaking.

68

Causal Agency Theory: Self-Determination and Disability

Self-Determination in the Disability Field Critical to understanding and promoting self-determination is having a framework for defining the construct and understanding its development. Such frameworks enable exploration of the relationship between the development of self-determination and other constructs, such as supported decision-making. Causal Agency Theory (Shogren et al., 2015a) was introduced recently. It is the latest iteration of a model for understanding self-determination that emerged in the intellectual and developmental disability field in the early 1990s (Wehmeyer, 1992). Causal Agency Theory advances these

previous

frameworks

for

understanding

self-

determination in multiple ways. First, it broadens notions of self-determination to all people, including people with disabilities. In doing so, the theory holds that disability is part of the continuum of human experience and that constructs relevant for people with disabilities, such as selfdetermination

and

supported

decision-making,

are

relevant to all people. What differentiates people with disabilities is the magnitude and type of individualized supports

and

accommodations

needed

to

enable

self-

determination and supported decision-making. This is a social-ecological perspective, which is aligned with understandings of disability described in Chapter 2. Figure 4.1 provides an overview of the development of selfdetermination as proposed by Causal Agency Theory. At the

69

Basic Psychological Needs

Motivation

Action-Control Beliefs

Autonomy

Competence

Relatedness

Causal Action

Autonomous Motivation

Volitional Action

Causal Agency

SELFDETERMINATION

Agentic Action

Feedback/Learning

Figure 4.1 Causal Agency Theory: Development of self-determination Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2016). Relationship between basic psychological needs, motivation, causal action, and self-determination. Lawrence, KS: Kansas University Center on Developmental Disabilities.

Causal Agency Theory: Self-Determination and Disability start of this system are psychological needs for autonomy, competence, and relatedness proposed by Self-Determination Theory (Deci & Ryan, 2002). Self-Determination Theory assumes that social contexts motivate human action to meet these basic psychological needs. Satisfaction of these needs facilitates autonomous motivation (Deci & Ryan, 2012), which enables people to select and pursue goals to satisfy their psychological needs. It is this motivational drive that initiates a causal action sequence that is the focus of Causal Agency Theory. Through repeated interactions with environmental supports and opportunities, this leads to enhanced self-determination. In subsequent sections, we provide a further explication of Causal Agency Theory. However, prior to this we provide a comprehensive overview of the history of selfdetermination in the disability field, considering the relationship with the emergence of supported decision-making.

Emergence of Self-Determination in the Disability Field The first discussion of the importance of self-determination to people with disabilities may be traced to Bengt Nirje’s (1972) chapter, entitled “The right to self-determination,” in the book Normalization: the principle of normalization in human services (Wolfensberger, 1972). Nirje applied the self-determination construct within a rights-based framework. He emphasized that people with disabilities had a right to live self-determined lives, making choices and decisions in all areas of their lives. He also emphasized the

71

Strengths-Based Frameworks for Understanding Disability role of environmental conditions, suggesting that, without the right to make decisions, people would not be able to live self-determined lives. However, beyond Nirje’s early 1970s call for the rights of people with disabilities to live self-determined lives, there were few other uses of the self-determination construct in the disability field until the 1990s. The only other use was the application of Self-Determination Theory in a single study by Deci and Chandler (1986). Self-Determination Theory emerged in the field of motivational psychology, and continues to be primarily applied in populations of children, youth, and adults without disabilities. Deci and Chandler focused on the role of autonomous motivation and supports for one’s basic psychological need for autonomy using teachers of students with learning disabilities. As data emerged from sources such as the National Longitudinal Transition Study in the United States (Blackorby & Wagner, 1996), which suggested poor adult outcomes for young people with disabilities (e.g., low employment rates and limited engagement in the community post high school) compared to their age peers, there was a push from parents and self-advocates, as well as policy makers, to identify new and innovative ways to enhance available interventions to support post-school outcomes and quality of life. Compared to age peers without disability, it was clear that, despite the focus on providing a free, appropriate public education through P.L. 94–142 (now the Individuals with Disabilities Education Act, first passed in 1975), students

72

Causal Agency Theory: Self-Determination and Disability with disabilities were not transitioning to the life outcomes desired. Relatedly, people with disabilities began to unite in the self-advocacy and disability rights movement (Wehmeyer, Bersani, & Gagne, 2000), placing increased focus on the limitations introduced by low expectations and environmental barriers. The Americans with Disabilities Act (ADA) was passed in 1990 to attempt to address restrictions in environmental access and opportunities (Blanck, 2016a, 2016b). Indeed, the ADA, and the ADA Amendments Act (ADAAA) of 2008, led to dramatic changes in perceptions of cognitive and other disabilities, consistent with discussion in prior chapters of the shift from primarily viewing disability as a medical state to be cured and pitied toward acceptance of disability as an element of human experience and selfidentity. The ADA’s modern understanding of disability is as much shaped by diversity in biology, local culture, and self-identity over the life course as it is by the barriers to inclusion we build and maintain in society (Blanck, 2014). This view reflects the paradigm shift from the prior and dominating medical model to a social and environmental approach to disability civil and human rights (Schur, Kruse, & Blanck, 2013). These social and political factors, as well as the emergence of social-ecological models of disability described in Chapter 2, contributed to the emergence of self-determination, defined as acting as a causal agent over one’s life, as a focus for intervention and outcome enhancement in the disability field.

73

Strengths-Based Frameworks for Understanding Disability The emphasis on self-determination, particularly in the context of promoting greater autonomy and community engagement over the life course, was emphasized in funding allocated between 1990 and 1994 by the US Department of Education’s Office of Special Education Programs (OSEP). During that period, OSEP funded twenty-six model demonstration projects to develop methods, materials, and strategies to promote the self-determination of youth and young adults with disabilities during the transition from school to post-school environments (Sands & Wehmeyer, 1996; Ward, 1996). These projects resulted in numerous programs to promote goal-setting, problem-solving, decision-making, and self-advocacy skills. They also led to specially designed instructional methods, materials, and strategies to promote the self-determination of students with disabilities (CarterLudi & Martin, 1995; Field et al., 1998; Martin & Marshall, 1996; Sands & Wehmeyer, 1996; Serna & Lau-Smith, 1995; Van Reusen et al., 1994; Wehmeyer, Agran, & Hughes, 1998). Several definitional frameworks also emerged for applying the self-determination construct within the special education context (Abery, 1994; Field, 1996; Field & Hoffman, 1994; Mithaug, 1996; Powers et al., 1996; Wehmeyer, 1996; Wehmeyer, Abery et al., 2003; Wehmeyer, Kelchner, & Richards, 1996). The assumption was that, by developing interventions and definitional frameworks to promote selfdetermination, enhanced and meaningful community engagement would result.

74

Causal Agency Theory: Self-Determination and Disability One of the definitional frameworks that emerged from this work in the early 1990s was Wehmeyer’s (1992) “functional” model of self-determination. This model focused on defining self-determined behavior to enable efforts to promote the development of self-determination in youth with disabilities. Wehmeyer initially defined self-determined behavior as “the attitudes and abilities required to act as the primary causal agent in one’s life and to make choices regarding one’s actions free from undue external influence or interference” (1992, p. 305). Wehmeyer further elaborated the functional model, suggesting that self-determination involves “autonomy (acting according to one’s own priorities or principles), selfactualization (the full development of one’s unique talents and potentials) and self-regulation (cognitive or selfcontrolled mediation of one’s behavior)” (1992, p. 395). The notion of causal agency reflected the links of the construct to determinism: people who are causal agents are those who make or cause things to happen in their lives, rather than others (or other things) making them act in certain ways. As such, the functional model of self-determination focused not on specific behaviors as defining self-determination, but instead on the function of those behaviors for the person, that is, the extent to which the behaviors enable the person to act as a causal agent over their lives. The functional model of self-determination has had significant influence on assessment and intervention strategies in the special education, transition, and adult supports and

75

Strengths-Based Frameworks for Understanding Disability services field. Researchers have documented the impact of teaching

skills

and

behaviors

associated

with

self-

determination (i.e., choice, problem-solving, etc.) as well as using multicomponent interventions to teach self-determined behavior,

leading

to

enhanced

self-determination.

The impacts are found for adolescents and adults, and for school-based, postschool transition, and adult outcomes. For example, researchers have found that teaching selfdetermination skills promotes increased academic skills (Konrad et al., 2007), attainment of academic (Agran et al., 2002; Shogren et al., 2012; Wehmeyer et al., 2000) and transition goals (Devlin, 2011; McGlashing-Johnson et al., 2003; Shogren et al., 2012; Wehmeyer et al., 2000; Woods & Martin, 2004), as well as greater access to the general education curriculum (Agran et al., 2008; Lee et al., 2008) in adolescents with disabilities. Teaching self-determination skills such as problemsolving, goal-setting, and self-management enhances the curriculum, providing cognitive and learning strategies that enhance self-determination, goal attainment, and engagement with academic content. Researchers also find that when self-determination interventions are implemented in schools, positive changes in student self-determination result (Wehmeyer et al., 2013). Wehmeyer et al. (2013) conducted a group randomized control study of the efficacy of the Self-Determined Learning Model of Instruction (SDLMI), which is a multicomponent intervention developed to align with the functional model of self-determination. Students

76

Causal Agency Theory: Self-Determination and Disability with intellectual and learning disabilities in the treatment group reported significantly greater increases in selfdetermination, with the greatest growth in the second year of instruction, suggesting the importance of ongoing exposure to self-determination skill instruction for students with extensive and pervasive support needs. Shogren and colleagues (2012) conducted a group randomized control study of the impact of the SDLMI on access to the general education curriculum and goal attainment. They found that students in the SDLMI group (vs. the control group) made significantly more progress on education goals and had significantly greater increases in their access to the general education curriculum than students assigned to the control group, while also increasing their self-determination skills. Other researchers find that these skills are important in the college environment for students with disabilities by promoting self-direction and meeting college expectations (Anctil, Ishikawa, & Scott, 2008; Thoma & Getzel, 2005). Teaching self-determination–related skills to students also impacts teacher perceptions of students with disabilities. Shogren and colleagues (2014) studied teachers’ perceptions of students’ capacity and opportunities for selfdetermination before and after instruction. They found that, when students received self-determination instruction, the SDLMI teachers perceived these students as having more self-determination capacities as well as more opportunities to be self-determining.

77

Strengths-Based Frameworks for Understanding Disability In addition to academic outcomes, researchers find that employment outcomes are more positive for adults with disabilities who are supported to self-determine their career preparation and job search processes (Agran &

Krupp,

2011).

The

relationship

between

self-

determination and employment decision-making and outcomes has been documented. Youth who exit secondary school with higher levels of self-determination achieve more positive employment outcomes (Shogren & Shaw, 2016; Shogren et al., 2015b; Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997). A modified version of the SDLMI, the Self-Determined Career Development Model (SDCDM), which Wehmeyer, Lattimore, Jorgensen, Palmer and colleagues (2003) pilot tested, suggested that teaching self-determination skills to adults led to enhanced career development. Wehmeyer and colleagues (2009) implemented the SDCDM as part of a larger intervention package with young women with developmental disabilities, finding that it enhanced the ability to set and attain employment goals. This study demonstrates that the SDCDM may be implemented (with researcher support) by direct support providers (DSPs) targeting employment to impact self-determined behavior. Shogren and colleagues (2016) conducted a randomized control trial of the SDCDM with adult support providers across the State of Missouri. Direct support professionals that provided employment supports served as facilitators for adults with intellectual and developmental disabilities

78

Causal Agency Theory: Self-Determination and Disability who were focused on goal-setting and attainment for career development and job identification or maintenance. After one year, those in the SDCDM group (vs. the control group that continued business as usual) showed an increase in selfdetermination and goal attainment. However, the study also found that characteristics of provider organizations predicted variability in outcomes. This suggested the need to identify factors that contribute to successful wide-scale adoption of interventions within state systems working to promote integrated employment. Another study conducted by Shogren, Dean, and colleagues (2017) examined the impact of implementing the SDCDM in combination with the “Discovery” process with community support providers in rural areas in Kansas. This study focused on concurrently implementing personal level supports as well as supports for implementation (e.g., provider training and policy changes) and community connections. Across four rural support provider organizations, there were increases in the employment and community integration outcomes of young adults with disabilities as well as systemic changes, including increased cross-collaboration across provider systems (e.g.,

Vocational

Rehabilitation

or

Intellectual

and

Developmental Disabilities provider organizations). These findings are consistent with other studies on developing state governmental programs using a “Culture of Coordinated Support” (CCS) model (Gustin & Martinis, 2016; Martinis & Gustin, 2017a). In CCS, people with

79

Strengths-Based Frameworks for Understanding Disability disabilities, and the governmental agencies and organizations providing services to them, use supported decisionmaking to identify each person’s goals, preferences, and needs and then coordinate their efforts to develop and implement person-centered plans that provide supports designed to meet and achieve them. Prior research also has suggested a positive relationship between self-determination and improved quality of life outcomes (Shogren et al., 2015b; Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997). Research suggests that people placed under guardianship experience “significant negative impact on their physical and mental health, longevity, ability to function, and reports of subjective wellbeing” (Wright, 2010, p. 354). However, additional study is needed to examine the impact of guardianship status on self-determination, quality of life, and community living and participation. To the degree that guardianship imposes unnecessary limitations on self-determination, it may result in the unintended consequence of diminishing quality of life and reducing

inclusive

community

living

and

participation.

Research is needed to determine the ways in which the promotion of self-determination may lead toward increased use of supported decision-making arrangements and enhanced self-determination as well as decision-making capacity.

80

Causal Agency Theory: Self-Determination and Disability

Causal Agency Theory The functional model has provided a framework to guide research and practice in the disability field over the past twenty-five years. Wehmeyer (2005) has provided updates and clarifications to the model. However, further integration of various theoretical perspectives of motivation and self-determination that emerged with the development of positive psychology is needed as well as integration of social-ecological

and

strengths-based

approaches

to

disability. To attempt to address this need, Causal Agency Theory (Shogren et al., 2015a) was introduced and has been described earlier in this chapter. It builds on the functional model, but, as shown in Figure 4.1, the theory further identifies the role of basic psychological needs and

autonomous

motivation

as

defined

by

Self-

Determination Theory in shaping environmental conditions for self-determined actions (i.e., action-control beliefs, volitional actions, and agentic actions). These actions create opportunities for psychological need satisfaction and autonomous motivation, which enhance causal agency and the development of self-determination. With these basic psychological needs met, people are better able to engage in causal actions that support the development of self-determination. These components are described in the following sections.

81

Strengths-Based Frameworks for Understanding Disability

Basic Psychological Needs Self-Determination Theory purports that basic psychological needs serve as the “energizer of behavior” (Deci & Ryan, 2012, p. 101) and that their satisfaction leads to autonomous or intrinsic motivation. Within Causal Agency Theory, the satisfaction of basic psychological needs then energizes causal action and self-determined actions that are goal-directed. The need for autonomy reflects the desire to feel that one’s actions are predicated on the self and volitional in nature (Vansteenkiste & Ryan, 2013). The need for competence is defined as the desire to successfully engage with, manipulate, and negotiate the environment. The need for relatedness reflects the desire for close emotional bonds and feelings of connectedness to others in the social world. Environments may be structured in ways that are supportive of the basic psychological needs for autonomy, competence, and relatedness. One example of this is providing environment opportunities and supports for decisionmaking, which enhance feelings of autonomy, competence, and relatedness, particularly in comparison to surrogate or “other-directed” decision-making arrangements.

Causal Action Causal Agency Theory was developed to explain the causal action sequence that leads to enhanced self-determination, as depicted in Figure 4.1. Causal Agency Theory, as a human agentic theory, assumes that an agentic person uses causal actions to “plot and navigate a chosen course through the

82

Causal Agency Theory: Self-Determination and Disability uncertainties and challenges of the social and ecological environments . . . continuously interpreting and evaluating actions and their consequences” (Little et al., 2002, p. 390). Within the context of Causal Agency Theory, we define self-determination as a “dispositional characteristic manifested as acting as the causal agent in one’s life. Selfdetermined people (i.e., causal agents) act in service to freely chosen goals. Self-determined actions function to enable a person to be the causal agent in his or her life” (Shogren et al., 2015a).

Key Terms and Assumptions Causal Agency Theory has several key terms and assumptions. First, within Causal Agency Theory, selfdetermination is conceptualized as a dispositional characteristic. A dispositional characteristic is an enduring tendency used to characterize and describe differences among people. Causal Agency Theory assumes that selfdetermined people have a tendency to act and think in a particular way. There also is a presumption of contextual variance, that is, environmental opportunities and threats, including the degree to which environments create opportunities and supports for basic psychological need satisfaction. As a dispositional characteristic, self-determination may be measured. Variance will be observed across individuals and within individuals over time, particularly as the context changes (e.g., supports and opportunities are provided for

83

Strengths-Based Frameworks for Understanding Disability self-determined action). This creates opportunities to explore the relationship among self-determination, supported and surrogate decision-making arrangements, and quality of life. Another critical aspect of Causal Agency Theory is the core notion of causal agency. Causal agency implies that it is the individual who makes and causes things to happen in his or her life; specifically, the person acts toward causing an outcome to accomplish a specific end and to cause or create change. Such actions are goal-directed. As such, selfdetermined actions (i.e., action-control beliefs, volitional action, and agentic action) enable a person to act as a causal agent. The emphasis on self-determined actions leading to causal agency is a central feature of Causal Agency Theory. Finally, as described earlier in the chapter, Causal Agency Theory is grounded in broader human agentic theories, which assume that healthy action is self-caused, not other-caused. However, more importantly, human agentic theories differentiate between self-determination as selfcaused action and self-determination as controlling one’s behavior. Self-determined action does not imply control over events or outcomes. Instead, self-determined action refers to the degree to which action is self-caused, volitional and agentic, and driven by beliefs about the relationships between actions (or means) and ends. As such, independence in making decisions is not necessary to be self-determined. Rather, supports that enable the expression of actions associated with the causal action sequence are aligned with

84

Causal Agency Theory: Self-Determination and Disability Causal Agency Theory. Removing the opportunities and support for decision-making and basic psychological need satisfaction limits motivation, causal action, and selfdetermination.

Essential Characteristics of Self-Determined Actions Figure 4.1 shows that there are three essential characteristics – action-control beliefs, volitional action, and agentic action – that contribute to causal agency and the development of self-determination. These characteristics refer not to specific actions performed or the beliefs that drive action, but rather to the function the action serves for the individual. Thus the extent to which the action enabled the person to act as a causal agent impacts the development of selfdetermination. Table 4.1 shows the breakdown of the essential characteristics and associated component constructs and elements that define these aspect of causal action under Causal Agency Theory.

Volitional Action. Self-determined people act volitionally. Volitional action is based on conscious choices that reflect one’s preferences. Conscious choices are intentionally conceived, deliberate acts that occur without direct external influence. As such, volitional actions are self-initiated and function to enable a person to act autonomously (i.e., engage in selfgoverned action). Volitional actions involve the initiation and activation of causal capabilities – the capacity to cause something to happen.

85

Strengths-Based Frameworks for Understanding Disability Table 4.1 Essential characteristics of self-determination, component constructs, and component elements Essential characteristics Volitional Action

Component

Autonomy Self-initiation

Agentic Action

Component elements

constructs

Self-regulation Self-direction

Causal Capabilities •

Choice-making skills

•

Decision-making skills

•

Goal-setting skills

•

Problem-solving skills

•

Planning skills

Agentic Capabilities •

Pathways

skills (self-monitoring,

thinking

Action-Control Beliefs

Self-management self-evaluation, etc.)

•

Goal-attainment skills

•

Problem-solving skills

•

Self-advocacy skills

•

Self-awareness

•

Self-knowledge

Psychological empowerment Self-realization Control expectancy Agency beliefs Causality beliefs

Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2016). Relationship between basic psychological needs, motivation, causal action, and self-determination. Lawrence, KS: Kansas University Center on Developmental Disabilities.

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Causal Agency Theory: Self-Determination and Disability Acting autonomously and with self-initiation involves making conscious choices that reflect one’s preferences and will, interests, values, and goals. Conscious choices are intentionally conceived, deliberate acts that occur without undue external influence. As children develop into adolescence and young adulthood, their focus shifts from basic choice-making and preference expression to complex decision-making tasks, including issues of choosing and preference pertaining to weighing risks and benefits of actions. As such, choice, preference, and decision-making skills are critical to the development of self-determination. They are central to the identification of goals to initiate the use of future orientation and planning skills to solve problems as well as the process of working toward goals. The decisionmaking process incorporates problem-solving and choicemaking skills and, as such, skills related to planning and future orientation are incorporated into the emergence of decision-making capacity.

Agentic Action. An agent is someone who acts. Agentic action is a means by which something is done or achieved. Agentic actions are self-directed toward a goal. When acting agentically, self-determined people identify pathways to specific ends and cause or create change. The identification of pathways is a proactive and purposive process. It is necessary for the decision-making and problem-solving process.

87

Strengths-Based Frameworks for Understanding Disability When acting agentically, action is self-regulated and self-directed. This enables progress toward freely chosen goals. It requires the implementation of several skills, including self-management, goal attainment, problemsolving, and self-advocacy. It is critical to gain experience of problem-solving and to develop capacities and supports for weighing pros and cons, which enables pathways thinking to develop. Another aspect is learning, and being supported, to think consequentially. Inductive and deductive reasoning skills further promote the capacity to consider the consequences of action and understand the role of emotions and supports in making higher risk decisions. Relatedly, self-advocacy skills develop, which are communicating and representing one’s views and interests in regard to expressing one’s interests and solving problems. These skills relate to the process of goal-setting and goal attainment. Goal pursuits are defining features of selfdetermined actions. Goal pursuits energize action and enable people to act as a causal agent in their own life. The early development of goal-setting and goal attainment is related to children’s understanding of causality. Later in life it requires differentiating between aspects such as effort and luck, contingency and uncontrollability, and practice and ability. The understanding of intentionality, causality, and means–end action is necessary to enable goal-directed action. Working toward goals enhances the self-regulation of actions in service of goals. Successful self-regulation

88

Causal Agency Theory: Self-Determination and Disability involves an orientation toward future goals, and the skills to be an active actor in one’s own actions. Self-regulation involves learning self-monitoring and evaluation skills, and applying these skills to act agentically and progress toward goals. In these ways, agentic action involves self-direction, pathways thinking, and self-regulation.

Action-Control Beliefs. Another critical aspect of engaging in causal action is having the belief that one’s actions have the potential to lead to desired changes. In applying volitional and agentic actions, self-determined people develop personal empowerment as well as self-knowledge, both of which influence the ability to sustain causal action and enhance motivation and satisfaction of basic psychological needs. They perceive a link between their action and the outcomes they experience; they develop adaptive action-control beliefs. To account for these beliefs and actions, Causal Agency Theory incorporates tenets of Action-Control Theory. Action-Control Theory posits three types of action-control beliefs: (1) beliefs about the link between the self and the goal (control expectancy beliefs: “When I want to do X, I can”); (2) beliefs about the link between the self and the means for achieving the goal (capacity beliefs: “I have the capabilities to do X”); and (3) beliefs about the utility and usefulness of a given means for attaining a goal (causality beliefs: “I believe my effort will lead to goal achievement” vs. “I believe other factors – luck, access to teachers or social capital – will lead to goal achievement”). As adaptive

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Strengths-Based Frameworks for Understanding Disability action-control beliefs emerge, people are better able to act with self-awareness and self-knowledge in a goal-directed manner. Action-Control Theory posits that, during the life course, individuals develop beliefs that mediate autonomously motivated causal actions (e.g., volitional, agentic) in response to environmental challenges. These include control expectancy beliefs, such as beliefs about the link between the self and the goal; capacity beliefs, such as beliefs about the link between the self and the means for achieving the end; and causality beliefs, such as beliefs about the utility or usefulness of a given means for attaining a goal.

Self-Determination Research Research on self-determination was one of the earliest areas in which a strengths-based focus was brought to bear in a disability context. The emergence of Causal Agency Theory has further advanced opportunities for strengthsbased supports research to emerge, including research on the relationship among self-determination, quality of life, and supported decision-making. Research has made concrete linkages between opportunities and supports for self-determination and decisionmaking. Research in Self-Determination Theory has emphasized the role of environments designed to promote autonomous motivation. However, research also has suggested that people with disabilities are less self-

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Causal Agency Theory: Self-Determination and Disability determined than their nondisabled peers. This line of study highlights the ways in which the controlling and dependency-creating environments to which people with disabilities are exposed, such as environments that limit decision-making

through

surrogate

decision-making

arrangements, depress the development of autonomous motivation and opportunities for causal action. Thus people with disabilities have fewer opportunities to express preferences and make choices in their lives (Stancliffe & Wehmeyer, 1995; Wehmeyer & Abery, 2013; Wehmeyer & Metzler, 1995). For example, research shows that congregate living and segregated work environments in which people with disabilities are disproportionally likely to receive disability services restrict choice opportunity and self-determination (Wehmeyer & Bolding, 1999). By moving to less congregate and less restrictive work and living environments, choice opportunity and self-determination are enhanced (Wehmeyer & Bolding, 2001).

Self-Determination and Supported Decision-Making As described, decision-making is part of volitional and agentic action. Decision-making enables people to act causally, deciding on goals and actions taken to achieve goals, and identifying future goals. There are multiple points in the causal action sequence in which decisions serve the interest of goal attainment, such as decisions about the:

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Strengths-Based Frameworks for Understanding Disability •

Goal to select in the goal generation process;

•

Outcomes of the goal discrepancy process to act on;

•

Options best to implement to reduce the discrepancy between a person’s current state compared to his or her desired state; and

•

Strategies to implement in the discrepancy-reduction plan.

Research on decision-making suggests issues that impact the decision-making process, as well as supports that can enable meaningful engagement in the decision-making process. Beyth-Marom and colleagues (1991) point out that uncertainty is a basic element in many decisions. Other research indicates that adults and children alike tend to underestimate the uncertainty in most decisions. This often leads to less than optimal outcomes from decisions, particularly as there are a number of sources of uncertainty in any decision. Identifying the consequences of a given alternative thus often is a “best guess” situation. This may result from a lack of information about a particular option and may be a factor in the type of alternative chosen. Creating supports for addressing uncertainty in the decision-making process can be useful in enabling supported decision-making. It also is often the case that there is uncertainty as to whether a particular alternative is actually available or will become available after a decision is made. The degree of uncertainty in these steps may be a factor in reaching a decision, and the fact that such uncertainty exists should be a topic of instruction for people with disabilities, as

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Causal Agency Theory: Self-Determination and Disability awareness of uncertainty assists in identifying needed supports. Beyth-Marom and colleagues (1991) suggest instruction that focuses on teaching about uncertainty should address questions such as: What is uncertainty? What are different kinds of uncertainty? What is the relationship between uncertainty and information? In addition to uncertainty, another factor that impacts supports needed for decision-making is the amount of risk involved in making a particular decision. Schloss, Alper, and Jayne (1994) detailed four levels of risk: 1.

The alternative involves limited potential for immediate risk, but little possibility of long-term harm to the individual or others.

2.

The alternative involves mild risk with minimal possibility of long-lasting harm to the individual or others.

3.

The alternative results in a moderate probability for long-lasting harm to the individual or others.

4.

The alternative involves an almost certain outcome that includes personal injury.

Learning strategies to assess risk are necessary to enable effective decision-making and identify supports needed for decision-making.

Conclusion Prior research demonstrates the positive relation between increased self-determination and improved quality of life

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Strengths-Based Frameworks for Understanding Disability outcomes (Shogren et al., 2015b; Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997). It also shows the impact of restrictions that guardianship and surrogate decisionmaking arrangements have on well-being and mental health (Arstein-Kerslake, et al., 2017; James & Watts, 2014; Jeste et al., in press; Kohn & Blumenthal, 2014; Shogren & Wehmeyer, 2015b). To the degree that guardianship imposes unnecessary limitations on self-determination, it may result in the unintended (or perhaps intended) consequence of diminishing life satisfaction and quality of life as well as reducing inclusive community living and participation (Blanck & Martinis, 2015; Hatch, Crane, & Martinis, 2015; Shogren & Wehmeyer, 2015a). This suggests that supported decision-making has the potential to enhance quality of life and well-being as well as self-determination–related outcomes. Moreover, guardianship often is implemented because service providers, family members, judges, and others assume that individuals with disabilities do not have the capacity to make decisions for themselves (Campanella, 2015; Jameson et al., 2015). But this is not necessarily the case, because with adequate supports it is possible for many people with disabilities to meaningfully engage in decision-making (Bailey et al., 2011; Saaltink et al., 2012). The lesson is that supports and opportunities to practice causal actions result in enhanced self-determination for people with and without disabilities. This includes decisionmaking in health, social, and financial areas as well as

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Causal Agency Theory: Self-Determination and Disability development of related skills and attitudes associated with self-determination, motivation, and psychological need satisfaction. Research shows that increased opportunities to make decisions improve self-determination and decision-making capacity – for example, in the area of financial decisionmaking (Shogren et al., 2015b; Suto et al., 2005). In guardianship, when decisions are made for individuals by a third party, there are decreases in opportunities for the individual to make decisions and, concomitantly, for selfdetermination.

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PART III Theory Underpinning Supported Decision-Making

5 Social-Ecological Framework for Supported Decision-Making

C

hapter 2 provided an overview of social-ecological models of disability and applications in the disability field, and defined three key aspects of

social-ecological models of disability: personal competencies, environmental demands, and support needs. A brief introduction to each of these concepts and potential applications in the context of supported decision-making was provided. This chapter provides an in-depth analysis of the application of the prior discussed constructs, emphasizing the importance of considering personal competencies, environmental demands, and support needs in combination as a means to enhance supported decision-making. Subsequent chapters in this section of the book explore each component of the socialecological model of supported decision-making, with a focus on legal, policy, and practice factors that influence supported decision-making (Chapter 6); environment demands that

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Theory Underpinning Supported Decision-Making create the need for supported decision-making (Chapter 7); and decision-making skills and support needs within a socialecological framework (Chapter 8).

Application of Social-Ecological Models to Supported Decision-Making As described in Chapter 2, social-ecological models emphasize that “disability” often results from a mismatch between personal competencies and environmental demands, which creates a need for individualized supports. While, at times, all people experience mismatches between their competencies and the demands of the environment, what differentiates people with intellectual and developmental disabilities is the need for extensive and ongoing supports resulting from mismatches (i.e., barriers) in multiple life domains. One area where mismatches may occur is in decisionmaking, particularly when the demands of medical, financial, and personal/social situations emerge that require consideration of complex options and outcomes. While, as described in Chapter 1, the traditional approach to addressing mismatches experienced by people with disabilities in relation to decision-making was to strip or limit adults with disabilities of the legal right to make major decisions through plenary guardianship, supported decision-making is an alternative paradigm that enables the person with a disability to retain their right in law to make decisions through the use of systems of supports that enable the

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Social-Ecological Framework for Supported Decision-Making person to be actively involved in the decision-making process to the maximum extent possible, with appropriate supports (Blanck & Martinis, 2015). Systems of supports are defined as “the planned and integrated use of individualized supports strategies and resources that encompass the multiple aspects of human performance in multiple settings” (Schalock et al., 2010, p. 106). In the context of decision-making, systems of supports should be individualized to the person’s competencies, needs, and the demands of the decisions faced (Schalock et al., 2010). The individualized nature and need for supports for decision-making highlight why “one-size-fits-all” solutions such as plenary guardianship are not only problematic because they limit legal agency (Browning, Bigby, & Douglas, 2014), but also inadequate to address the complexities of decision-making demands across environments and over the life span. As is more fully described in Chapter 6, as a result of the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD) and the growing emphasis in the disability field on promoting self-determination (Shogren et al., 2015a), supported decision-making models are emerging and replacing, or supplementing, traditional guardianship models. Supported decision-making arrangements recognize that, with supports, people with disabilities may be meaningfully involved in decisions about their lives, promoting legal agency and enhancing self-determination.

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Theory Underpinning Supported Decision-Making Chapter 6 reviews legal and practice efforts undertaken to actualize the supported decision-making model. Prior to discussing these models, it is necessary to describe the key aspects that undergird the creation of systems of supports for decision-making: personal competencies, environmental demands, and needs for supports. As alternatives to plenary guardianship continue to emerge, it is necessary to ensure that frameworks for building the means necessary for actualizing supported decision-making are understood and in place.

Environmental Demands and Supported Decision-Making The everyday environments that we live, learn, work, and play in, as children and adults, are imbued with opportunities to make decisions. The decisions that we make range from simple to complex, implicate different motivational and emotional states, and tend to become more complex as we age and assume adult roles and responsibilities (Hickson & Khemka, 2013). This is why, in most countries, there is a set point in time when legal rights and responsibilities are transferred from parents to children. In the United States, the transfer of rights occurs at eighteen years of age, a time when most young people are moving from school to the adult world (Lindsey at al., 2001). The expectation is that children and adolescents will have had supported opportunities to develop and test their decision-making skills so that when the age of legal majority is attained they have the skills to exercise these rights.

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Social-Ecological Framework for Supported Decision-Making However, research consistently suggests that children with disabilities have limited opportunities to learn and apply decision-making skills (Wehmeyer & Abery, 2013). Although supported decision-making as a legal alternative to guardianship focuses on systems of supports for decisionmaking in adulthood, experiences in childhood and adolescence significantly influence one’s decision-making skills and abilities as an adult. Thus considering how to create opportunities for learning and applying decision-making skills in childhood and adolescence is critical to enhancing the capacity for supported decision-making in adulthood (Wehmeyer & Shogren, 2017). This transition must occur throughout childhood and adolescence, with a strong focus on planning for the transition that occurs at age eighteen, when young adults with and without disabilities achieve the age of majority (Etscheidt, 2006; Millar, 2007). This planning is particularly important, given that it is at the age of majority when guardianship is often considered for young people with disabilities. For students with disabilities and their families who remain in the educational and special educational system, changes in consent for services and participation in the education and transition planning process emerge. Family members may become concerned about being excluded from decisions, although this need not occur if effective systems of supports are put in place. Students may become the legal agent for decisions about their educational experiences, but still make the decision to involve their family members.

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Theory Underpinning Supported Decision-Making This transitional period may be a rich time for building decision-making skills for all parties, including young people with disabilities. Planning tools focus on building systems of support for decision-making during this time (Millar, 2014), providing alternatives to plenary guardianship. Such tools provide guidance for planning teams on how to identify key decisions that will need to be made, and the resources available to support those decisions. These tools may enable supported decision-making arrangements to emerge by bringing together “Circles of Supports” and other people (e.g., vocational rehabilitation professionals) who act as supporters under

supported

decision-making

arrangements

into

adulthood. Beyond the age of majority, the emergence of adulthood roles and responsibilities also may create a need for supports for decision-making. With regard to environmental demands for decision-making in adulthood, while “lowstakes” decisions remain a staple of everyday life in community environments, “high-stakes” (e.g., with important consequences) decisions tend to raise the bar and often contribute to families considering guardianship arrangements. As medical or health-related, financial, and relational or living (e.g., romantic relationships, type of living arrangements, etc.) decisions present, questions emerge about how a person with a disability may address the demands for navigating complex medical, financial, and legal systems as well as how appropriate supports may be put in place.

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Social-Ecological Framework for Supported Decision-Making Again, the traditional model for other-directed decisionmaking is guardianship, but this model often does not recognize the demands encountered over time and the need for individualized supports to enhance the legal agency of the person and enable effective solutions by understanding the supports needed for each demand. One central tenant of understanding

environmental

demands

for

decision-

making from a social-ecological framework is understanding that decision-making demands will shift and change over time. If a person has an acute condition, different supports are needed to address unique medical decisions that may arise as well as ongoing chronic conditions. Thus, for example, a temporary change in employment, health, or social security benefits during a transition from one job to another will create different demands for financial decision-making that also implicate long-term planning for financial stability and security. For all people, including people with disabilities, scanning the environment, exploring the decisions that need to be made, and determining the most effective supports to allow a person to be a causal agent over those decisions are all necessary to understand and address. From a social-ecological perspective, to effectively implement supported decision-making, the environmental demands across the life span for each person must be understood and this knowledge used in combination with information about personal competencies related to decision-making to build systems of supports. The specific

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Theory Underpinning Supported Decision-Making environmental demands, and resultant need for supports, vary based on multiple factors, including the accessibility of information, complexity and risk, relationships and social networks, and attitudes and opportunities about involvement of people with disabilities in the decision-making process (Shogren, Wehmeyer, Lassman, & Forber-Pratt, 2017).

Personal Competencies and Supported Decision-Making In addition to understanding the demands related to decision-making that a person experiences across environments and their life span, another central aspect of a socialecological approach to supported decision-making is understanding the personal competencies, or the decision-making skills and capabilities, that a person brings to the decisionmaking process. As mentioned, the skills that a person has are influenced by the degree to which they have had opportunities to learn and use decision-making skills (Wehmeyer & Shogren, 2017). Research confirms that people with disabilities experience restrictions in their opportunities to make choices and be engaged in decisions ranging from simple to complex. This persists despite research suggesting the benefits of actively engaging children and adolescents in the decision-making process (Shogren et al., 2015b). As such, it is necessary to understand the skills that each person with a disability has had the chance to learn to build effective systems of supports as well as consider ways to enhance those skills through additional teaching, supports, and opportunities.

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Social-Ecological Framework for Supported Decision-Making One fundamental and flawed assumption of guardianship models is that decision-making skills are static and that taking away a person’s rights to engage in legal and fiduciary decisions is appropriate simply because of the presence of a disability. This approach does not consider disability from a social-ecological perspective. First, disability is not static, nor does it reside solely in a person; instead, it is an interaction of personal competencies and environmental demands. Further, with personalized supports (which can include accommodations under the Americans with Disabilities Act), mismatches resulting from environment demands that are not aligned with personal competencies may be addressed, enabling meaningful engagement and participation in decisions across environments and activities. Supported decision-making embodies this understanding of disability through its focus on enabling people with disabilities to exercise their legal capacity, with appropriate supports (Glen, 2015). Legal capacity, in this context, is understood to have two elements: legal standing (i.e., recognition in the legal system) and legal agency (i.e., presence in the legal system) (Browning, Bigby, & Douglas, 2014). Historically, legal capacity has been equated with “mental capacity” (traditionally measured by IQ) with the generalized assumption that if a person had a disability they lacked legal capacity and, therefore, legal standing, resulting in legal agency being removed. Essentially, it was assumed that people with disabilities (even people who do not have cognitive disabilities) had

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Theory Underpinning Supported Decision-Making a lack of decision-making skills and did not have legal capacity, so they could not act as their own legal agent. Researchers and practitioners even find that disability status is used, a priori, to determine legal capacity with no actual or valid assessment of decision-making skills and opportunities (Moye & Naik, 2011; Moye et al., 2007). Supported

decision-making

and

social-ecological

approaches assume that legal and mental capacity are not equivalent, and that a person’s agency and ability to act when making decisions is not static but is influenced by contextual factors (Shogren, Luckasson, & Schalock, 2014). This necessitates individualized approaches and understandings of how to support legal agency. Mental capacity alone, therefore, cannot be used in isolation to determine legal standing (Glen, 2015), and supports that consider contextual factors may promote legal agency. Because decision-making skills also are not static, this further necessitates flexible models of support for varying demands for decision-making across the life span. Decisionmaking skills may be enhanced through the life span and supports devised that address areas that are not strengths. For example, Pickett and colleagues (2012) described an intervention to empower mental health consumers to be more active participants in the treatment decision-making process through training in self-advocacy, communication, and problem-solving skills as well as social support. They found that people who received the intervention, in comparison to controls who did not, were more actively involved in the

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Social-Ecological Framework for Supported Decision-Making treatment decision-making process. This, and the growing body of research that will be further reviewed in Chapter 9, show that decision-making skills are enhanced through instruction and opportunity enhancement across the life span. In teaching decision-making skills and building supports to enhance skills and opportunities, it is important to understand the decision-making process. This assists in identifying and tailoring instructional and support needs. Decisionmaking is making choices among competing courses of action (Baron & Brown, 1991; Hickson & Khemka, 2013). Making a decision involves judging which solution is best in a given situation, at a given time. To make a decision, one implements the following general steps: (1)

Recognize that environmental circumstances are creating the need for action, and that there are various alternative paths;

(2)

Become aware that a decision is necessary;

(3)

Identify the purpose of the decision and the goal it will support;

(4)

Identify alternative actions;

(5)

Determine the consequences of the alternatives;

(6)

Determine the probability of each consequence occurring;

(7)

Identify the relative importance of each action and alternative; and

(8)

Identify the most attractive course(s) of action (Beyth-Marom et al., 1991; Furby & Beyth-Marom,

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Theory Underpinning Supported Decision-Making 1992; Hickson & Khemka, 2013; Wehmeyer & Shogren, 2017). In understanding the decision-making knowledge and skills that a person with a disability has developed from their previous experiences, opportunities for individualized skill instruction and supports may be identified. Further, understanding environmental demands helps highlight steps that may require supports in the context of complex decisions. For example, it may be difficult to determine the consequences of various alternatives when the person has not had experience with the alternatives. If a person is engaged in the process of determining where to live after high school, exposure to and experience with the living options are critical to ensure that the person may meaningfully evaluate the alternatives. Skills related to developing pros and cons, and identifying priorities, are important steps. Alternatively, for example, the consequences of one medical treatment versus another may not be clear without additional information (as is true for all people). However, if this information is inaccessible because it is text heavy or presented verbally, it makes it difficult for people with certain cognitive disabilities and people who are deaf or hard of hearing to evaluate alternatives and their consequences when the information is not made accessible (e.g., through plain language or by a sign language interpreter). Accessible information makes taking action on this step possible. As such, thinking through the steps in the decision-making process and the resources

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Social-Ecological Framework for Supported Decision-Making a person brings to bear on the process in the context of different decisions provides critical information on supported decision-making arrangements. Chapter 8 discusses ways to assess and build on decision-making skills to enhance participation in supported decisionmaking.

Support Needs and Supported Decision-Making The third aspect of a social-ecological approach to supported decision-making involves understanding support needs. As described in Chapter 2, support needs reflect the pattern and intensity of assistance necessary for a person to participate in community environments and activities. Support needs may be reliably assessed and indicate a need for personalized supports to enhance functioning. In the context of supported decision-making, support needs emerge from a mismatch between a person’s decision-making skills and competencies and the demands for decision-making that are encountered in the environment. To implement legal and policy driven efforts to enhance supported decision-making as an alternative to guardianship, a system must be in place to understand a person’s support needs for decision-making. This foundational understanding must be used to build systems of supports, which may include teams of supporters (i.e., people who inform but do not supplant the decision-making process) as well as technology and other aids to enhance and supplement a person’s decision-making skills and preferences.

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Theory Underpinning Supported Decision-Making Decision-making aids repeatedly are used to enhance participation of people with disabilities in the decision-making process (Blanck, 2014). Bailey, Willner, and Dymond (2011) find that when making financial decisions people with intellectual disability are more able to provide justifications for their decisions when provided with visual aids (e.g., graphic and color-coded information). These aids should be individualized to a person’s competencies and needs. “Supporters,” or people who enable the person to engage in the decision-making process, also are a key part of systems of supports. Researchers find that peer supporters enhance the decision-making process regarding treatment and medication use for people with mental health needs by providing information, modeling, and sharing personal experiences (Crickard et al., 2010; Watson et al., 2014). The understanding of support needs highlights the need to move beyond a “one-size-fits-all” mentality of legal capacity, such as plenary guardianship. Rather, the goal is to understand people by their unique needs and align individualized supports to address those needs. It also confirms that supports (and supporters) come in many forms. Individualized supports are provided at the level of the person and include decision aids, peer supports, instruction, modifications, and other resources and strategies to enhance participation in decisionmaking (these are discussed in subsequent chapters). One key aspect of individualized supports, however, is that they are designed in reference to the person and their specific support needs.

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Social-Ecological Framework for Supported Decision-Making Individualized supports are not programs delivered without customization to a person’s needs. However, in addition to individualized supports, supports may be used at differing levels of the ecological system (Bronfenbrenner, 1979, 2005). For example, supports may be developed at the systems level, including educational materials for families, peers, physicians, financial advisors, employers, and members of the community that focus on providing information about supported decisionmaking. Or, they may be provided as information to understand a person’s individualized needs for decision-making. Supports also must be present at the macrosystem level, through policies at the federal and state levels and practices adopted by, for example, the judicial system, to enhance use of alternatives to guardianship with assessment of support needs for decision-making rather than making blanket assumptions about legal capacity on a diagnosis alone. Only with examination across ecological systems, and the building of comprehensive and individualized systems of supports for decision-making in a seamless manner, will legal agency be enhanced.

Integrating Personal Competencies, Environmental Demands, and Support Needs As highlighted in the previous sections, personal competencies, environmental demands, and support needs for decisionmaking are intertwined. Together, they may be understood

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Theory Underpinning Supported Decision-Making comprehensively in the social-ecological model to enhance legal and causal agency in the decision-making process. Chapter 11 highlights ways to build and sustain comprehensive systems of supports across ecological systems. Ultimately, there is a need to address personal competencies and environmental demands through effective supports. For example, decision aids are a powerful support for promoting participation of people with disabilities in the steps of the decision-making process. However, Wennberg and Kjellberg (2010) find that, while decision aids are generally effective, negative attitudes of support providers (e.g., family members and staff) influence the use of such aids. Related research is reviewed in Chapter 9, showing the interactive effects of personal and environment experiences in shaping decisionmaking skills, opportunities, expectations, and outcomes. Systematic approaches within the context of supported decision-making must be undertaken to ensure that effective systems of supports are in place and sustained. This approach should consider the individual and their individual support needs, as well as the ecology in which the person functions, including their immediate context (e.g., family, friends, community members, etc.) and the broader ecology of organizations, policies, and systems-level practices that relate to decision-making opportunities and supports. Tables 5.1 and 5.2 provide an overview of steps that may be taken to assess, plan, and evaluate the implementation of supports for decision-making. Table 5.1 highlights how assessment, planning, and evaluation may occur at the

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Social-Ecological Framework for Supported Decision-Making Table 5.1 Planning for individualized supports for decision-making To effectively plan for and implement individualized supports for decision-making, consider the following actions: 1. Assess a. Decision-making skills and competencies; b. Environmental demands for decision-making; c. Support needs for decision-making; d. Current environmental opportunities and barriers that facilitate or inhibit participation in decision-making. 2. Plan a. Identify needed supports based on the information collected during the evaluation phase; b. Use a person-centered process to develop a plan for how the needed supports will be implemented and sustained; c. Implement the plan; d. Take advantage of legal and organizational supports available to enhance opportunities for supported decision-making and reduce environmental, social, and personal barriers. 3. Evaluate a. Collect data on the impact of the supports as implemented (e.g., are they impacting outcomes in the intended ways? If not, what needs to change?); b. Implement changes needed based on evaluation data in the short term and plan for longer term changes; c. Continuously reevaluate the need for supports based on changes in personal competencies and environmental demands.

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Theory Underpinning Supported Decision-Making Table

5.2 Planning for creating systems of support for

decision-making In addition to individualized supports for decision-making, it is necessary to effect change at the systems level to reduce barriers to supported decision-making. To do so, consider the following steps: 1. Assess a. Availability of supports for decision-making. Are there supported decision-making options available in legal and organization policy? Are there processes in place for building systems of supports when supported decision-making agreements are in place? b. Are there specific areas of need (e.g., medical or financial system policies) to be addressed to reduce barriers and create opportunities for agency in decision-making for people with disabilities? 2. Plan a. Devise legal and organizational policy changes that enhance supports for decision-making based on assessment information. b. Engage in community resource mapping and strategies to identify the opportunities that are available within organizations and communities. 3. Evaluate a. Determine the impact of the implemented supports on personal outcomes (e.g., use of plenary guardianship and supported decision-making arrangements, and self-determination) and make adjustments as necessary.

individual level. Table 5.2 highlights efforts that may be undertaken at the systems level. Considering the activities suggested in Tables 5.1 and 5.2 jointly, and across the microsystem (i.e., person with

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Social-Ecological Framework for Supported Decision-Making a disability and their support network) and meso- or macrosystems, provides a powerful means to make positive change and build effective and sustainable systems of supports. Planning is needed at the individual level as well as at the systems level to create opportunities for supported decisionmaking, thus removing barriers and enhancing legal agency and self-determination for people with disabilities. The remaining chapters in this section of the book explore the ways in which assessment, planning, and evaluation may consider personal competencies, environmental demands, and supports needs at the individual and systems level, with a focus on legal and policy applications, environmental demands for decision-making, and decision-making skills and support needs. The chapters in Part IV of the book examine emerging research, policy, and practices based on this model as well as their impact on life outcomes.

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6 Decision-Making Capacity in Law and Practice

P

revious chapters have discussed how supported decision-making has emerged as an alternative to and evolution from more than 2,000 years of laws

and public policy that endorsed the removal of civic rights with the appointment of substitute decision-makers for people with disabilities (Martinis, 2015b). The present chapter examines more closely the legal and related societal underpinnings for guardianship and other substituted decisionmaking modalities. It then considers the legal justification for supported decision-making as an alternative to traditional guardianship practices in the United States and other countries. Lastly, this chapter describes the ways in which two illustrative US states (Texas and Vermont) have implemented supported decision-making as a legal alternative to guardianship.

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Decision-Making Capacity in Law and Practice

Guardianship History and Law Historically and today, the overarching rational for guardianship has been protection, to do “good for those who cannot protect themselves” (O’Sullivan, 2002, p. 703). From its roots in antiquity, guardianship law and practice have involved appointing substitute decision-makers for people who are “by reason of age or disability . . . incapable of making such decisions for themselves” (Winick, 1995, p. 27). The guardianship process has been viewed as “nonadversarial, conducted for the benefit of the protected person, dealing with incapacity which is presumed to be both permanent and progressive, and focused primarily on the prudent, impartial management of the person and the estate of the incapacitated individual” (Wright, 2004, p. 61). The first documented steps toward a formal guardianship system occurred in ancient Greece, where the law allowed for appointment of third parties to safeguard the property of people with disabilities. In one such proceeding, Sophocles defeated an attempt to take over the control of his property by reading from one of his plays (Wood, 2005). The early Greek model took root in the Roman Republic, where the earliest laws required the property of a “fool” to be placed under the protection of “his family or paternal relatives” (Wood, 2005, p. 18). Subsequent Roman laws allowed for the appointment of curators to direct the lives of people with disabilities (Fleming & Robinson, 1993).

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Theory Underpinning Supported Decision-Making With the fall of the Roman Republic, new nation-states developed laws on the rights of people with disabilities to possess property and enter into contracts. For example, the Visigothic Code, enacted in the seventh century, stated that “insane” persons could not testify or enter into contracts (Scott, 1910, p. 67). As the laws of states matured, the progression toward modern guardianship accelerated in feudal England. In 1324, the statute De praerogativa regis first set forth the concept of parens patriae, that is, the King and the State enjoyed the role of parent to their incapacitated subjects and must protect those individuals unable to protect themselves (Payton, 1992). De praerogativa regis divided people with incapacitating mental disabilities into idiots, people with no reasoning abilities, and lunatics, people who had “lost [their] reason” (O’Sullivan, 2002, p. 690). The law required committees of other subjects to manage these persons and their property (Wood, 2005). Over time, this legal regime evolved to be overseen by legal courts with processes to ascertain whether people were in need of an oversight committee, and ways in which these committees were to direct the lives of the people under their control (Wood, 2005). The American colonies, and later the United States, adopted the British parens patriae paradigm (Regan, 1972). In the United States, because each state uniquely “possesses all the powers . . . which the sovereign possesses in England” (Late Corporation of the Church of Jesus Christ of the Latter Day Saints v. United States, 136 U.S. 1 (1890) at

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Decision-Making Capacity in Law and Practice 57), they each proceeded to adopt their own guardianship laws and associated processes. Unfortunately, over time, the state laws reflected an array of “varying, often antiquated, definitions of incompetency or ‘incapacity’ and some degree of minimal due process with a heavy emphasis on protection of property rather than the person and little attention to individual rights” (Wood, 2005, p. 20).

Reforming US Guardianship Law By the early 1980s, and increasingly thereafter, disability scholars and advocates in the United States and other countries, such as Canada and Australia, began questioning the appropriateness and benefits of guardianship systems and processes. In accord, researchers were finding that the majority of guardianship petitions filed led to benefits for people other than the allegedly “incapacitated” person and provided little to no benefit to the quality of life of the individual at issue (Teaster et al., 2005). In one analysis, the Associated Press reviewed more than 2,000 guardianship cases and conducted interviews with the parties involved. The investigation led to a series of articles concluding that guardianship often “puts elderly lives in the hands of others with little or no evidence of necessity, then fails to guard against abuse, theft and neglect” (Teaster et al., 2005, p. 2). By the late 1980s, the troubling issues about guardianship resulted in an investigation by the United States House of Representatives Select Committee on Aging.

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Theory Underpinning Supported Decision-Making The Committee chair at the time, Representative Claude Pepper, summarized the findings: The typical ward has fewer rights than the typical convicted felon. . . . By appointing a guardian, the court entrusts to someone else the power to choose where they will live, what medical treatment they will get and, in rare cases, when they will die. It is, in one short sentence, the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty. (House of Representatives, 1987, p. 4, emphasis added)

In the years following, and with passage of the landmark Americans with Disabilities Act (ADA) of 1990, as amended in 2008, US states began to modify their guardianship laws and procedures to better ensure the civil rights of persons with disabilities (Blanck, 2016a; Blanck & Martinis, 2015). According to one study of state laws, fifteen states “enacted comprehensive reforms or tossed aside their old guardianship law and started anew” (Wood, 2005, p. 31). The state reforms as to guardianship law and process typically provided for enhanced and more robust: (1)

Procedural

protections

for

alleged

incapacitated

persons; (2)

Functional determinations of incapacity;

(3)

Use of limited guardianship, as opposed to full or plenary guardianship;

(4)

Emphasis on the principle of employing the “least restrictive alternatives;”

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Decision-Making Capacity in Law and Practice (4)

Court monitoring; and

(5)

Development of public guardianship programs and protections (Teaster et al., 2005, p. 3).

During this time, other federal laws such as the Developmental Disabilities and Bill of Rights Act (2006) and seminal United States Supreme Court decisions such as Olmstead v. L.C. (1999) bolstered individual civil rights for full and equal participation by persons with disabilities in all areas of private and public life (Blanck & Martinis, 2015). Title II of the ADA, for example, covers state and local governmental activities. It provides that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subject to discrimination by any such entity” (ADA, 2012; 42 U.S.C. § 12132; Blanck et al., 2014). Thus discrimination on the basis of disability in state guardianship may run afoul of ADA Title II. Nonetheless, there remains “deeply embedded tendencies toward protection over autonomy, and courts continue[d] to issue guardianship orders that are not necessary and are overly broad in scope” (Salzman, 2010, p. 178). Indeed, from 1995 to 2011 alone, the estimated number of US adults under guardianship tripled (Reynolds, 2002; Schmidt, 1995; Uekert & Van Duizend, 2011). Today, the most used form of guardianship remains full or plenary guardianship – in which the guardian is given the complete power to exercise all legal rights in place of the

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Theory Underpinning Supported Decision-Making person (Frolik, 2002). One study found that, in more than 90 percent of the guardianships it reviewed, the guardian was empowered to make all legal decisions for the person (Teaster et al., 2007). As one scholar concluded: “Courts do not [order limited guardianships] because there is little reason or incentive to do so. It seems that as long as the law permits plenary guardianship, courts will prefer to use it” (Frolik, 1998, p. 354). Worse yet, another commentator commented that, even after years of legal and policy reforms, one “cannot say with confidence that if any one of us becomes incapacitated that a robust system is in place to protect our person and our financial assets” (Uekert, 2010, p. 6). More recently, legal scholars have begun to argue with greater force that, in certain instances, guardianship violates the ADA’s principles, as mentioned, for example, nondiscrimination in the provision of state services under Title II of the law. Salzman (2010) and Hatch, Crane, and Martinis (2015) compared the harm resulting from individuals placed in overly broad and undue guardianships (that is, guardianships that are unnecessary and restrict rights more than necessary (Martinis, 2015b)) to that suffered by the plaintiffs in the Supreme Court case Olmstead v. L.C. In Olmstead, the Court held that people with disabilities have a right to receive supports and services in integrated, community settings rather than segregated institutions. The Court set forth that the ADA prohibits unjustified institutional isolation as a form of discrimination under the law (see Olmstead, 527 U.S. 581, at 600). It determined that this

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Decision-Making Capacity in Law and Practice form of social isolation “diminish[es] . . . everyday activities . . . including family relations, social contacts, work options, economic independence, educational advancements, and cultural enrichment” (Olmstead, 527 U.S. 581, at 600–601). People under overly broad and unnecessary full guardianship may be constructively isolated from their communities and suffer discrimination under the law, as did the Olmstead plaintiffs. This may be the case when guardians have complete and unchecked authority over their wards’ lives, including over “where they live, whether they receive medical care, with whom they will socialize, and even whether they will marry,” especially when such oversight is not necessary (Salzman, 2010, p. 68, cited in Hatch, Crane, & Martinis, 2015). The checkered history of guardianship laws and processes thus led policy makers and advocates as well as people with disabilities and their families, in the United States and elsewhere, to search for other formal and informal decision-making options that supported individual self-determination. These approaches would need to be selfdirected as appropriate and less driven by others’ wishes and preferences, or perceived to be in the “best interests” of the ward. Supported decision-making emerged as one primary paradigm established to support individual selfdetermination, a person’s will and preference in their daily life activities, and full and equal community integration and participation in society (Blanck & Martinis, 2015).

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Theory Underpinning Supported Decision-Making

Supported Decision-Making: International Advances The movement away from substitute and other-directed decision-making models such as plenary guardianship and toward more self-determined options such as supported decision-making gained global prominence through a series of innovative laws and policies in Canada and elsewhere. In the early 1990s, supported decision-making policies and practices were pioneered in Canada (Arstein-Kerslake et al., 2017). In 1992, the Canadian Association for Community Living (CACL) issued a report arguing that society relied on and overused guardianship because, among other reasons, it held the “misconception that personal autonomy can only be exercised independently” (CACL, 1992, p. 2). CACL subsequently proposed legislation to empower people with disabilities to collaborate with others to help them make their own decisions (CACL, 1992). In sweeping reforms, and in large part as a result of CACL’s efforts, the Canadian province of British Columbia passed several laws intended to protect the rights of people with disabilities (Arstein-Kerslake et al., 2017). One of these laws, the Representation Agreement Act (1996), permits people to name personal supporters to help them manage their own affairs. So-called supporters are empowered to make decisions for people should they become fully incapacitated. This provided individuals with disabilities the opportunity to avoid court-ordered committeeship (the British Columbian term for guardianship) by giving legal

126

Decision-Making Capacity in Law and Practice authority to the people they themselves chose to support them (Arstein-Kerslake et al., 2017). The British Columbian Representation Agreement Act was a direct precursor of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which has become one of the most important instruments of disability rights law reform across the globe (Dinerstein, Grewal, & Martinis, 2016). The CRPD treaty was entered into force in 2008 and ratified by over 160 countries, with a notable exception of the United States. The Convention touches on nearly every life sphere, including people with disabilities’ human rights to transportation, employment, community living, recreation, health, voting, technology, and education (Dinerstein, Grewal, & Martinis, 2016). The CRPD provides broad recognition of the concept and practice of supported decision-making as a paradigm to enhance human rights. Article 12 of the CRPD, in particular, sets forth that people with disabilities have a human right to “equal recognition before the law” (CRPD, at Art. 12). Article 12 states: “State Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” (CRPD, Art. 12, § 2). Significantly, Article 12 recognizes that sometimes people with disabilities may require support and assistance to exercise their legal capacity (for example, “will and preference”) and it requires signatories to the treaty (i.e., “State Parties”) to provide such support (CRPD, Art. 12, § 3).

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Theory Underpinning Supported Decision-Making Subsequent to the adoption of the CRPD, the United Nations Committee on the Rights of Persons with Disabilities (the body of independent experts that monitors CRPD implementation by State Parties) issued a comment and recommendations as to ways in which states may effectively implement Article 12. The CRPD Committee describes the support that states are required to provide to people with disabilities in exercising their right to legal capacity: “Support” is a broad term that encompasses both informal and formal support arrangements, of varying types and intensity. For example, persons with disabilities may choose one or more trusted support persons to assist them in exercising their legal capacity for certain types of decisions, or may call on other forms of support, such as peer support, advocacy (including self-advocacy support), or assistance with communication . . . Support can also constitute the development and recognition of diverse, non-conventional methods of communication, especially for those who use non-verbal forms of communication to express their will and preferences. (CRPD Committee, 2014, p. 4)

The CRPD Committee further recommends standards that states should meet to implement a supported decisionmaking paradigm, including that: (1)

Supported decision-making must be “available to all,” and not be limited to people who need a high degree of support;

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Decision-Making Capacity in Law and Practice (2)

All forms of support should be based on the “will and preferences of the person,” and not on presumed “best interests;”

(3)

A person’s mode of communication, even if limited or nonconventional, should not be a barrier to obtaining support;

(4)

Legal recognition of the support person(s) chosen by the individual must be available and accessible, and “the state has an obligation to facilitate the creation of support,” especially for those who are isolated and do not have access to natural supports in their daily lives;

(5)

Objective third parties must have the ability to verify the identity of the supporter and validate the actions of the support person if they believe that the support person is not following the will and preferences of the individual;

(6)

“Lack of resources is not to be a barrier” to using support;

(7)

States must provide supports at no or nominal cost to the person;

(8)

“Support in decision-making (or the need for it) cannot be used to deny other fundamental rights,” such as voting, reproductive rights, and parental rights;

(9)

The person has the “right to terminate or change the support relationship at any time;”

(10)

Safeguards designed to respect the will and preferences of the person must be available in all processes related to legal capacity and its exercise; and

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Theory Underpinning Supported Decision-Making (11)

The provision of support should “not be based on assessments of mental capacity” but on “new, nondiscriminatory indicators of support needs” (CRPD Committee, 2014, cited in Dinerstein, Grewal, & Martinis, 2016, p. 447).

In accord with the CRPD Committee recommendations, in 2010 the Yokohama Declaration on Adult Guardianship, a nonbinding document, set out a series of principles designed to guide nations on issues regarding guardianship and selfdetermination (International Guardianship Network, 2010). The First World Congress on Adult Guardianship prepared the Yokohama Declaration. This collective, with representatives from over twenty countries, engaged hundreds of delegates, including disability advocates, academics, attorneys, governmental and judicial officials, and guardians and fiduciaries (World Congress on Adult Guardianship, 2013, cited in Dinerstein, Grewal, & Martinis, 2016). Like the CRPD, the Yokohama Declaration supports the principles of equality before the law. It calls for the use of selfdirected decision-making options other than traditional guardianship, including “substituted proxy decision-making,” that, as described by the Declaration, are consistent with supported decision-making (World Congress on Adult Guardianship, 2013, at I (1)(6)). The Declaration states that guardianship laws should give primary consideration and effect to the person’s will and preference, and wishes and beliefs, and be implemented in ways that support individual self-determination and prevent harm to the person (Dinerstein, Grewal, & Martinis, 2016). 130

Decision-Making Capacity in Law and Practice

Supported Decision-Making: Advances in the United States Presently, the United States has not ratified the CRPD. Nevertheless, many US legislators, policy makers, courts, and advocates recognize that “even when it is functioning as intended [guardianship] evokes a kind of ‘civil death’ for the individual, who is no longer permitted to participate in society without mediation through the actions of another if at all” (Dinerstein, 2012, p. 9). In the United States, there is a growing consensus that

supported

decision-making

may

improve

self-

determination and life outcomes for individuals across the spectrum of disability and across the life course. This view is consistent with federal laws such as the ADA and the Developmental Disabilities Assistance and Bill of Rights Act (Blanck & Martinis, 2015). Particularly in the wake of the “Justice for Jenny” case, discussed in Chapter 1 of this book, there is growing demand to implement supported decision-making paradigms across the states (Blanck & Martinis, 2015; Kohn, Blumenthal, & Campbell, 2013). Chapter 1 highlighted that state legislatures across the United States, in Texas, Delaware, and Virginia, recognize, recommend, and implement supported decision-making as an alternative to traditional guardianship. In addition, other state laws endorse “less restrictive alternatives” to guardianship, which encompass supported decision-making.

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Theory Underpinning Supported Decision-Making This section examines the ways in which two illustrative states have implemented supported decision-making systems: (1) Texas, which has passed legislation recognizing supported decision-making, and (2) Vermont, which has implemented the supported decision-making paradigm through its state policies and practices.

Texas: The Law of Supported Decision-Making In 2009, Texas became the first US state to pass a law recognizing supported decision-making. Texas did this by creating and funding a statewide pilot project to “promote the provision of supported decision-making services to persons with intellectual disability and developmental disabilities and persons with other cognitive disabilities who live in the community” (Tex. Gov’t Code Ann. § 531.02446 (2009)). The Texas project allowed volunteers to assist people in making “life decisions such as where the person wants to live, who the person wants to live with, and where the person wants to work, without impeding the self-determination of the person” (Tex. Gov’t Code Ann. § 531.02446 (2009)). After the Texas pilot program expired, the state legislature passed new laws recognizing supported decisionmaking as an alternative to traditional guardianship, and providing legal recognition to supported decision-making agreements and relationships. Texas law recognizes alternatives to guardianship known as “Supports and Services,” which are formal and informal resources enabling people to meet their personal needs, care for

132

Decision-Making Capacity in Law and Practice their health, manage their finances, and make personal decisions (Tex. Est. Code Ann. §1002.031 (2015)). These identified “supports and services” correspond to supported decision-making paradigms in which individuals with disabilities collaborate with friends, family members, and professionals to understand the situations and choices they face, so that they may make their own decisions (Blanck & Martinis, 2015). Texas courts may not appoint a guardian unless they find that the person in question cannot make their own decisions using such “supports and services” (Tex. Est. Code Ann. §1101.101 (2015)). Texas law provides legal recognition of supported decision-making relationships that are prepared in prescribed written agreements. Under Texas law, therefore, consenting adult individuals may enter into legally binding “Supported Decision-Making Agreements.” These enforceable agreements, as such contracts, authorize a designated supporter to: (1)

Provide supported decision-making services, including assistance in understanding options, responsibilities, and the consequences of the individual’s life decisions, but not to make those decisions on behalf of the person with a disability;

(2)

Assist the individual in accessing, collecting, and obtaining from any person information relevant to a given life decision, including in areas of medical, psychological, financial, educational, and treatment records;

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Theory Underpinning Supported Decision-Making (3)

Assist the individual with a disability in understanding the information requiring a decision; and

(4)

Assist the individual in communicating their decisions to appropriate persons (Texas Est. Code Ann. § 1357.051 (2015)).

Texas law establishes the required format for Supported Decision-Making Agreements, which must be substantially complied with to be legally enforceable. The agreement requires that the individual identify the chosen supporter and the areas in which support is offered – for example, in obtaining food, clothing, and shelter, in taking care of physical health, and in managing financial affairs (Texas Est. Code Ann. §1357.056 (2015)). Nonetheless, designated supporters may not make ultimate decisions for the person. Supported Decision-Making Agreements also empower supporters to assist the person to access and obtain information needed to make a decision (e.g., in regard to medical, psychological, financial, educational, and treatment issues), to understand the options to make an informed decision, and to assist in the communication of the decision to appropriate other persons (Texas Est. Code Ann. §1357.056 (2015)). Presently, in the United States, Texas has among the most advanced legally enforceable Supported DecisionMaking Agreement processes. Texas state agencies and other nongovernmental organizations provide assistance for people with disabilities who choose to enter into Supported Decision-Making Agreements. These organizations, such as the Texas Council on Developmental

134

Decision-Making Capacity in Law and Practice Disabilities, also provide appropriate customized versions of the Supported Decision-Making Agreement form (Texas Council on Developmental Disabilities, n.d.).

Vermont: State Policies and Practices for Supported Decision-Making Vermont law does not formally recognize supported decisionmaking. However, through innovative policies and practices, the state is encouraging the use of supported decisionmaking in its governmental service system for people with intellectual and developmental disabilities. For instance, Vermont law provides that people with intellectual and developmental disabilities should only be placed under guardianship when they are not able to manage their lives and are “not receiving the active assistance of a responsible adult” to manage their lives (Vermont Code, 18 VSA § 9302). Similar to the concept of individualized “supports and services” recognized in Texas law, Vermont’s conceptualization of “active assistance” by responsible adults is consistent with a supported decision-making paradigm in which supporters assist people with disabilities to make their own decisions and manage their lives to the maximum extent possible. Hence, Vermont citizens with disabilities who collaborate with others to engage in supported decision-making may not be placed under plenary guardianship. Recently, Vermont became the first US state to endorse a system-wide commitment to the supported decisionmaking paradigm (Gustin & Martinis, 2016). In 2016, the

135

Theory Underpinning Supported Decision-Making Vermont state government convened a Supported DecisionMaking Task Force, which was comprised of people with disabilities, families, and representatives of state agencies and service provider organizations that work with people with intellectual and developmental disabilities. The task force engaged medical, legal, educational, employment, advocacy, mental health, aging, and developmental disabilities professionals (Martinis & Gustin, 2017a). The goals of the Vermont task force are to: (1)

“reduce the overreliance on guardianship by empowering older adults and people with disabilities to make their own decisions and direct their own lives;” and

(2)

“create solutions and initiatives that transform practices in a way that brings a culture of collaboration to advance supported decision-making to the state” (Vermont

Developmental

Disabilities

Services

Division, 2016, emphasis added). The task force is establishing supported decision-making as a “common tongue” across the state’s service systems and agencies. In this way, people, service providers, and state agencies better collaborate to support personcentered planning and services to ensure that the people receive the supports they want and need to manage their own lives. People with disabilities, their families and friends, and professionals are engaged across state service delivery systems to identify and provide personcentered and person-driven supports as opposed to

136

Decision-Making Capacity in Law and Practice traditional models that have employed substitute decision-making. Vermont is implementing statewide pilot projects designed to foster the use of supported decision-making for people with disabilities to manage their own lives to avoid guardianship and to restore their rights. These innovative projects include activities such as: (1)

Enhancing collaboration among state guardianship agencies and service provider organizations for people with developmental disabilities;

(2)

Identification by state guardians of people under guardianship who may benefit from supported decisionmaking models to direct their own lives and receive the supports and services they need to do so;

(3)

Enhancing supports from attorneys to aid in the termination of unnecessary and overly broad guardianships;

(4)

Partnerships among schools, state agencies, and selfadvocacy organizations to identify young adults at risk of unnecessary guardianship; and

(5)

Efforts to engage all stakeholders to aid people with disabilities to plan for and receive supports they desire and prefer to direct their own lives (Martinis & Gustin, 2017a).

Vermont’s task force is continuing its efforts. Additional Vermont state agencies and advocacy organizations are engaged with people with disabilities to help them understand and implement supported decision-making to manage

137

Theory Underpinning Supported Decision-Making their own lives and avoid unnecessary guardianship (e.g., Green Mountain Self Advocates, 2016).

Conclusion For too long, laws and public policies in the United States and other countries have endorsed traditional guardianship and substituted decision-making modalities to divest people with disabilities of their right to life choices (Salzman, 2011). This chapter has discussed recent advances in laws, policies, and practices that increase recognition and use of supported decision-making by states, courts, and agencies in the United States and abroad. These advances in law and policy are aimed at supporting individuals with disabilities to be self-determined and to act as their own decision-maker, to the maximum extent possible (Dinerstein, 2012).

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7 Environmental Demands for Decision-Making

C

hapter 2 introduced social-ecological models of disability, andChapter 5 explored implications of social-ecological models for supported decision-

making. In defining a social-ecological approach to supported

decision-making,

Chapter

5

highlighted

the

importance of understanding environmental demands as well as decision-making abilities and support needs associated with decision-making. Chapter 6 provided an overview of issues in law and practice that influence understandings of decision-making abilities and capacity in line with a social-ecological model, as well as examples of ways in which supported decision-making arrangements may be implemented to enable people with disabilities to meaningfully participate in decision-making processes consistent with their right to legal and causal agency over their lives (Dinerstein, 2012; Shogren et al., 2015a).

139

Theory Underpinning Supported Decision-Making The purpose of this chapter is to further explore issues related to environmental demands for decision-making. Only by understanding the demands that each person with a disability faces in the environments they live, learn, work, and play in can we effectively identify and individualize supports that enable participation in decision-making and supported decision-making arrangements (Shogren & Wehmeyer, 2015a). To this end, we describe environmental demands, research on the influence of environmental demands, and ways to assess environmental demands. We emphasize the role of an individualized understanding of environmental demands, as demands differ across environments and time, based on a person’s current interests, motivations and emotions, preferences, values, and life circumstances.

Describing Environmental Demands When disability is understood as a state of functioning resulting from an interaction between personal competencies and environmental demands, identifying the nature of environmental demands is critical to determine supports needed to enhance outcomes. When applied to supported decisionmaking, understanding demands encountered across environments with respect to making decisions is central to determining the individualized supports needed to enhance participation and engagement in the decision-making process and supported decision-making arrangements. It is

140

Environmental Demands for Decision-Making only through understanding decision-making skills and environmental demands that the supports a person with a disability needs to be maximally involved in decisions about their life may be determined. Chapter 8 will more specifically describe frameworks for understanding decisionmaking skills and determining support needs for decisionmaking, building on the understanding of environmental demands provided in this chapter. To determine environmental demands, it is necessary to understand the demands and requirements of the contexts within which a person functions (Shogren, Luckasson, & Schalock, 2014). With regard to understanding contextual factors

that

shape

environment

demands,

Shogren,

Luckasson, and Schalock (2014) suggested that the disability field has not adopted a systematic definition of context to guide assessment and intervention to enhance functioning. After a systematic review of the literature, they concluded that context was currently used in the disability literature to describe multiple personal and environmental factors that shaped functioning, but that a clear definitional framework was not used to guide work to integrate, assess, understand, and intervene to address contextual factors. To address this limitation to knowledge in the field, Shogren, Luckasson, and Schalock (2014) introduced a definition of context as a “concept that integrates the totality of circumstances that comprise the milieu of human life and human functioning” (p. 110). These authors elaborated that context may be used to understand personal and

141

Theory Underpinning Supported Decision-Making environmental characteristics that are not usually manipulated (i.e., independent variables) such as age, language, culture, race, ethnicity, gender, and family as well as organizational, system, and societal policies and practices that may be manipulated (i.e., intervening variables) to enhance functioning. By working to systematically understand personal and environmental characteristics that impact functioning, an integrated approach to understanding context may be used for: “(a) describing and analyzing aspects of human functioning such as personal and environmental factors, supports planning, and policy development; and (b) delineating the factors that affect, both positively and negatively,

human

functioning”

(Shogren,

Luckasson,

&

Schalock, 2014, p. 110). In related work, Shogren, Luckasson, and Schalock (2015) argue for the increased use of context as an integrated framework to align disability policy goals (inputs), contextual factors and supports (throughputs), and outcomes in the intellectual disability field. While the authors focus broadly on the application of context across disability policy goals, one of the personal outcome domains identified as part of their framework is enhancing self-determination. Access to supported decision-making is a contextual factor that may influence self-determination, aligning with the broad disability policy goal of promoting human dignity and autonomy. This framework suggests that understanding the context within which supported decision-making is implemented is critical at the personal and environmental level.

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Environmental Demands for Decision-Making As such, understanding personal and environmental factors that influence decision-making is a necessary step to effectively align supports for decision-making at the individual and organizational level. This approach emphasizes the central role of the environment in shaping the demands for decision-making for each person, as well as the available opportunities. For example, the availability of supported decision-making arrangements is a contextual factor that shapes the availability of alternatives to guardianship that enable engagement and participation in decision-making. As described in Chapter 6, formal supported decision-making arrangements as alternatives to traditional full guardianship arrangements are available in only a few states within the United States and, in certain provinces and countries, internationally. As such, access to supported decision-making arrangements, and the systems of supports needed to meaningfully participate in decision-making, is not consistently available. As noted in other chapters, full or plenary guardianship arrangements remain the common approach to addressing the environmental demands for decision-making encountered by many people with disabilities. However, as an intervening variable, the availability of supported decisionmaking arrangements may be enhanced, improving opportunities and demands for self-directed decision-making. Thus the demands created by supported decision-making arrangements must be understood, as this creates a significantly different context within which people with

143

Theory Underpinning Supported Decision-Making disabilities make decisions. For example, under plenary guardianship, others (i.e., legally appointed guardians) are empowered to make complex or all decisions, particularly decisions that are viewed as being associated with risk. Supported decision-making arrangements provide an alternative that promotes the agency of the person with a disability, with appropriate supports and accommodations (Blanck, 2016b). At a basic level, one’s context provides multiple opportunities for decision-making. We all make decisions repeatedly throughout our days – decisions about what to eat, decisions about what activities to engage in, decisions about whether or not to exercise. The combined impact of these smaller decisions leads to larger life impacts (e.g., the sequela of poor nutritional decisions over the life span), suggesting the importance of using effective decision-making skills across environments and decisions. Too often (and certainly more often than necessary), these basic decisions are more restricted for people with disabilities than people without disabilities, as others often control decision-making processes for people with disabilities, making engaging in a range of decisions for a person with a disability more of a challenge because of the lack of opportunities to learn and apply decision-making skills. However, typically more complex (and often allegedly complex as presented) decisions are perceived as having greater potential for risk or harm and are commonly used as the justification for guardianship arrangements. These decisions frequently relate to financial matters, providing

144

Environmental Demands for Decision-Making consent for health and medical care, service-related issues (e.g., where to live, with whom to live, etc.), and relational decisions (e.g., who to spend time with, with whom to engage in romantic relationships, etc.). It is often a combination of a deficit perspective and a desire to protect and minimize risk that leads to complex decisions being perceived as too risky for people with disabilities, and guardianship options are thus pursued. However, these and all decisions change over the life course, and each person faces different environmental demands for making decisions in these domains that negate the value of a “one-size-fits-all” approach such as plenary guardianship. For example, a person with medical support needs in addition to having a disability (e.g., diabetes or heart disease) faces differing environmental demands for decision-making in the medical context, but not all people with disabilities will face similar environmental demands. As such environmental demands for decision-making must be understood at the individual level, based on assessment of the domains within which decision-making is required, with a focus on domains where complex decisions associated with risk are required. Environmental demands for decision-making must be defined at the level of the individual, with assessment of demands in the environments within which a person functions.

Domains of Environmental Demands While a comprehensive assessment of the opportunities, barriers, and current demands for decision-making across

145

Theory Underpinning Supported Decision-Making the multiple domains within which a person lives, learns, works, and plays must be a part of assessing environmental demands for decision-making, it is also helpful to focus explicitly on life domains within which complex decisions or decisions that may be considered high-risk are likely to occur. We have, through a systematic review of the research (Shogren, Wehmeyer, Uyanik, & Heidrich, 2017), identified key domains that are frequently associated with complex and high-risk decisions in the lives of people with disabilities that may lead to issues related to guardianship being raised. These domains include Health, Legal, Financial, Social Relationships, and Community Living. In assessing environmental demands within these areas, determinations should be made about current demands that a person is facing (e.g., health-related decisions that need to be made, decisions about where and with whom to live that need to be made, decisions about romantic relationships that need to be made) as well as demands that are likely to be faced in the future (e.g., decisions about treatment for a chronic health condition that need to be made in the next year, decisions about benefits in relation to changes in employment status that may emerge in the coming year). Considering these factors provides important insight to determine the current and future demands that are emerging for the person and helps guide supports. It is also important, when considering these domains, to maintain a strengths-based perspective and a focus on promoting selfdetermination and causal agency. Too often deficit-oriented

146

Environmental Demands for Decision-Making models of disability have led to a focus on protecting and taking away decisions in these domains. Examples of environmental challenges encountered in involving people with disabilities in medical decisions continue to emerge, such as medical professionals refusing (i.e., as opposed to sharing decision-making) to allow people with disabilities to consent to procedures (or to submit to procedures) and using disability labels to determine treatment rather than specific health needs. This situation often is related to a lack of understanding and supports for engaging the person with a disability in the process using strengths-based approaches. The predominant deficitbased framework of turning over decision-making to a surrogate fails to recognize the inherent right of people with disabilities to act as legal and causal agents over their lives, and the potential of supports (e.g., universally designed decision aids and peer supports (Blanck, 2014)) to enable the effective participation of people with disabilities in decisions about their lives through supported decision-making arrangements.

Research on Environmental Demands for Decision-Making Existing research reviewed in earlier chapters suggests a number of factors have led to significant limitations in the environmental opportunities for decision-making available to people with disabilities. For example, legal guardianship arrangements typically and inherently remove the rights of people with disabilities to be involved in complex

147

Theory Underpinning Supported Decision-Making decisions about their lives. Stereotypes and biases about disability limit opportunities available to people with disabilities to participate in decisions ranging from simple to complex, limiting the growth and development of decisionmaking capacities. As discussed in previous chapters, guardianship arrangements often are justified solely on a disability label and a purported need for others to control complex decisions because of that label. One of the critical life periods during which guardianship often is considered, particularly for adolescents with intellectual disability and developmental disabilities, is during the transition from school to adulthood and when the age of majority is attained. For example, decision-making rights transfer from parents to the young person in the United States when the young person with (or without) a disability turns eighteen years of age. Often, this is a confusing and difficult time for families (Millar, 2003), as they desire to remain involved in educational decision-making, particularly related to the Individualized Education Program (IEP) and transition planning. Schools make parents aware during this period that rights will transfer at the age of eighteen, and often only provide information about guardianship options for youth with intellectual disability and developmental disabilities (Lindsey et al., 2001; Millar, 2003). Millar (2003) reviewed court files for youths with disabilities aged between seventeen and twenty-eight years of age, focusing on the reasons guardianship was explored during

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Environmental Demands for Decision-Making this transitional time. In the court files, the most commonly written response to questions about why guardianship was being sought was “to make all decisions regarding medical, legal, contractual, program and placement, and travel decisions” (Millar, 2003, p. 385), reflecting a focus of the petitioner to maintain control over decisions that had typically been under the purview of the family prior to the age of majority. Millar also explored the evidence used to establish a need for guardianship, finding that in a majority of cases a “disability label was often used to show just cause of a guardianship appointment” (2003, p. 390), with little or no concrete proof that there was a need for supports in relation to decision-making. Further, Millar explored the reports required to be made yearly to the court and found that there was limited evidence that guardianship appointments were actually addressing the issues and concerns stated in the original petitions. This finding raised questions about the degree to which guardianship was addressing its stated purpose and highlighted the need for alternative models, such as supported decision-making arrangements. One of the reasons for Millar’s (2003) findings is the lack of specificity of guardianship arrangements and the lack of recognition of the need for specific supports to enable decision-making reflected in these cases. Turning over decisionmaking authority to a surrogate does not guarantee that effective decisions will be made that address the demands for decision-making in specific contexts. Instead, there are a range of factors that influence decision-making demands

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Theory Underpinning Supported Decision-Making across environments, including time, a person’s skills, interests, motivations and emotions, preferences, and current life circumstances. Understanding these factors is central to the supported

decision-making

paradigm

and

provides

a framework for individualizing supports. In a recent review of the literature, Shogren, Wehmeyer, Lassman, and Forber-Pratt (2017) systematically explored the published literature related to decision-making abilities, environmental demands, and support needs for decision-making with respect to people with intellectual disability and developmental disabilities, with mental health conditions, and who were aging. Overall, the literature was relatively limited. Interestingly, the most literature on contextual factors that influence decision-making emerged in the aging literature, likely because of work considering how to address cognitive changes experienced in association with the aging process. The mental health field followed, with the least literature being in the intellectual disability field. The findings suggest a differential emphasis in the intellectual disability field on understanding factors that shape decision-making, perhaps given the prevalence of one-sizefits-all approaches, such as plenary guardianship. While additional research is needed to inform supported decisionmaking for people with a range of cognitive, developmental, mental health, and aging related needs, this body of work highlights that there are differential emphases and considerations that are driven by disability labels and not by

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Environmental Demands for Decision-Making individualized judgments of support needs and environmental demands for decision-making. The Shogren, Wehmeyer, Lassman, and Forber-Pratt (2017) review of the literature confirmed that previous experience with decision-making is a critical factor that impacts others’ judgments about the capacity of a person with a disability to engage in decision-making and identification of needed supports. For example, researchers find, for people with intellectual disability to meaningfully engage in career decision-making, prior exposure to job options and activities is critical to developing personal preferences and engaging in the decision-making process (Timmons et al., 2011). For people with mental health needs, the degree to which similar decisions have been made in the past influences participation in the decision-making process going forward (Woltmann & Whitley, 2010). While this is logical and suggests a need for specific environmental modifications to enable more opportunities for decision-making and experiences that enable participation in decision-making, these issues are not commonly considered in making determinations about guardianship arrangements. Instead, decisions typically are made based on disability labels (Millar, 2003, 2007) rather than an understanding of experiences and environmental demands. Additional environmental factors significantly shape the degree to which a person has the experience to engage in the decision-making process and the supports needed to be

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Theory Underpinning Supported Decision-Making successful in engaging in the decision-making process. For example, how information is presented (e.g., its accessibility) significantly influences engagement in the decision-making process (Blanck, 2014). If insufficient time is provided for a person to process information and ask questions, they may not be able to meaningfully engage in the decision-making process (McDaid & Delaney, 2011). Also, the manner in which the information is presented makes a difference. Salkovskis and colleagues (2010) found that people who are presented information about the positive aspects of genetic testing for schizophrenia are more likely to undergo the testing than if the information is presented about negative aspects. For people who are aging and have dementia, researchers find that, when only the most salient information is presented, the ability to participate in decision-making is enhanced (Moye et al., 2004). However, this is not typically the manner in which information is presented, particularly when medical and legal consent is required. Typically, few attempts are made to develop and use decision-making aids, despite evidence that they impact engagement in complex decisions for diverse populations (Carney, 2013; Fisher, Bailey, & Willner, 2012). Further, decision-making may involve informational as well as relational and affective elements, and if these components are not addressed and considered in the decision-making process, the situation is not empowering for people with disabilities (Woltmann & Whitley, 2010).

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Environmental Demands for Decision-Making The complexity and risk of decisions must also be explicitly considered. Many medical and financial decisions are complex, requiring consideration of multiple options and engaging in systematic steps to weigh options (Bravo et al., 2013; Laplante-Lévesque, Hickson, & Worrall, 2010). Part of the complexity relates to the timing of decisions. Some decisions may be considered over a period of time, with a focus on long-term planning (i.e., advanced directives about what a person wants to occur at the end of life (Waldrop, 2014)). Others require quick action, particularly if a crisis is occurring. For example, if a person with a mental health condition is in crisis, this requires different considerations than if decisions are being made about long-term treatment options

(Davis-Sowers,

2012;

Hunt,

Watkins,

&

Eisenberg, 2012). However, with supported decisionmaking arrangements (e.g., Powers of Attorney and Advanced Directives), such situations may be planned for by having a group of supporters available to provide support

targeted

to

specific

environmental

demands.

The difference in supported decision-making arrangements is that the person remains at the center of the process, with information having been discussed and planned for, including making choices about what supports and supporters are available to assist in decision-making during such environmental demands. Central to supported decision-making is that accommodations and resources that provide support may be

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Theory Underpinning Supported Decision-Making modified over time by the person with a disability as circumstances, preferences, and needs change, unlike what typically occurs under full guardianship arrangements. This is particularly important, as different types of decisions and decisions within various life domains (e.g., financial, medical, and relational) require different forms of supports, including supporters who provide meaningful

input

and

support

to

a

person

with

a disability as they navigate complex decisions. Finally, another environmental influence comprises the attitudes and perceptions of supporters, including family members and others who are part of a circle of support. Frequently, decision-making skills are learned from observing others make decisions. However, the degree to which this occurs for young people with disabilities varies, particularly if families, educators, and other supporters do not have experience or familiarity with modeling decision-making for young people with disabilities (Thorkildsen, 2007; Timmons et al., 2011). As mentioned, supporters often struggle with balancing protection and risk, or have negative attitudes about decision-making capacities that have been reinforced by interactions with professionals who adopt deficit-based rather than strengths-based models, and who work within systems that adopt such perspectives in organizing services and supports (Timmons et al., 2011). Such issues impact opportunities and environmental demands for decisionmaking (Colvin & Larke, 2013; Timmons et al., 2011; Wennberg & Kjellberg, 2010).

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Environmental Demands for Decision-Making

Assessing Environmental Demands Understanding and assessing environmental demands for decision-making must be part of a comprehensive, personcentered

approach

to

planning

for

supports

under

a supported decision-making arrangement (Blanck & Martinis, 2015) and as part of developing a comprehensive supports plan (Schalock & Verdugo, 2012; Thompson et al., 2014; Thompson, Wehmeyer et al., 2017). To focus on environmental demands, the issues addressed in the previous sections must be systematically considered. An assessment of short- and long-term demands for decisions across life domains, but with a specific focus on health, legal, financial, social relationships, and community living domains, is needed. The degree to which there are high-risk and complex decisions that are required across these domains should also be considered. Further, information about the degree to which accessible information is available about such decisions as well as past and current opportunities to be involved in such decisions should be analyzed. This information assists in developing and identifying needed supports and supporters for these decisions. Building on these ideas, Shogren and Wehmeyer (2016b) developed a tool, the Supported Decision-Making Inventory System (SDMIS), which will be described further in Chapter 10 of this book. This tool includes multiple sections, including sections on assessing personal factors, environmental demands, and decision-making autonomy.

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Theory Underpinning Supported Decision-Making The environmental demands section focuses on obtaining a snapshot of current high-risk and complex decisions that are present in the life of a person with a disability, as well as the opportunities that the person has to engage in these decisions and the degree to which accessible information and supports are available. Table 7.1 provides an excerpt of some of these questions, which are repeated across the five life domains described previously.

Table 7.1 Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Environmental Demands section 1. To what degree are there high-risk decisions that need to be made in your life related to KEY LIFE AREA? 2. To what degree are opportunities available for you to make high-risk decisions? 3. To what degree are there supports available to enable you to make high-risk decisions? 4. To what degree is accessible information available to you to make high-risk decisions? 5. Are there complicated decisions that need to be made in your life related to KEY LIFE AREA? 6. To what degree are opportunities available for you to make complicated decisions? 7. To what degree are there supports available to enable you to make complicated decisions? 8. To what degree is accessible information available for you to make complicated decisions? Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2016). Supported Decision-Making Inventory System (SDMIS) [pilot version]. Lawrence, KS: Kansas University Center on Developmental Disabilities.

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Environmental Demands for Decision-Making In using tools such as the SDMIS, a comprehensive understanding of environmental demands for decision-making may be obtained. Understanding these environmental demands – from the perspective of the person with a disability and the people who support the person – is a necessary step to identify needed supports. To effectively implement supported decision-making arrangements, such as those described in Chapter 6, supports must be aligned with the environmental demands experienced at the individual level, as an understanding of the decision-making abilities and experiences of the person (further described in Chapter 8). Using these sources of information to identify needed supports and build a comprehensive system of supports that includes supporters (i.e., people who meaningfully assist in the decision-making process) as well as technological and design-based supports (e.g., universally designed decision aids) leads to greater participation and engagement in decision-making processes, and ultimately greater self-determination and agency.

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8 Decision-Making Skills and Support Needs for Decision-Making

I

n Chapters 2 and 3, we introduced social-ecological models of disability and discussed the ways in which these frameworks move us toward strengths-based

approaches to disability as well as the application of positive psychological constructs to the disability context. In Chapter 5,

we then discussed how a social-ecological framework may be applied to the supported decision-making paradigm. Taken together, the prior chapters set out ways in which the supports paradigm provides new approaches to practice in relation to supported decision-making by people with disabilities. A supports paradigm shifts the emphasis from diagnosis, classification, and disability-type grouping to the consideration of the unique supports a person needs to be successful across contexts and environments, including in decision-making contexts. Social-ecological models of disability emphasize that “disability” exists only in the gap

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Decision-Making Skills and Support Needs for Decision-Making between the person’s capacities and the demands of the environment

in

which

that

person

must

function.

A supports paradigm provides the means to operationalize that understanding of disability and to design supports, including supports for decision-making, which enable people to be successful to their maximum potential. As defined in Chapter 1, supported decision-making is an alternative paradigm to address overbroad and unduly necessary guardianship. Supported decision-making may be a legally formal (for example, court-ordered or contractual Powers of Attorney) or informal (for example, natural peer supports) means to “protect fundamental rights, increase self-determination, and improve life outcome” (Martinez, 2015, p. 109). However, the focus of this chapter is on the “what now?” question; that is, supported decision-making is widely identified as an optimal way for a person to avoid overbroad and undue guardianship, protect their fundamental rights, enhance their self-determination, and improve their life outcomes and quality of life – nonetheless, now what? What happens once a legal decision endorsing supported decision-making is rendered? In Chapter 10, we discuss the process of assessment and intervention in furtherance of supported decisionmaking. In this chapter, however, we continue the exploration of the decision-making process that began in Chapter 5. Thus we further align supported decisionmaking with a social-ecological understanding of disability. Specifically, in this chapter, we examine theoretical

159

Theory Underpinning Supported Decision-Making frameworks for understanding the decision-making process and defining decision-making. We also identify steps involved in making a decision. We further review factors that influence individual decision-making, such as cognitive, motivational, and emotional factors. Lastly, we examine ways to identify and understand support needs for decision-making, in particular as emerging from the interaction of decision-making abilities and environmental demands, and we discuss ways to use this knowledge to build effective systems of supports.

Decision-Making Defined Jabes (1978) defined a decision as “goal-directed behavior made by the individual in response to a certain need, with the intention of satisfying the motive that the need occasions” (p. 86). As discussed in Chapter 4, our model of the development of self-determination (see Figure 4.1) proposes that a person’s desire to satisfy basic psychological needs of autonomy, competence, and relatedness energizes a causal action sequence in which volitional and agentic actions are mediated by action-control beliefs, resulting in causal action and experiences of causal agency, which over time results in enhanced self-determination. We contextualize the decision-making process, therefore, as part of the causal action sequence. Specifically, the agentic action process enables the person to satisfy the need for autonomy, competence, and relatedness stimulated by

160

Decision-Making Skills and Support Needs for Decision-Making environmental challenges through goal-directed volitional and agentic action. Thus we modify Jabes’s definition to specify that the agentic process involves goal-directed behavior initiated by a person in response to perceived and actual environmental challenges (for example, opportunities, barriers, and threats) to basic psychological needs with the intent to maintain autonomous motivation and engage in causal action. This nuanced definition of decision-making is useful to understand the relationships between and among constructs such as decision-making, autonomous functioning, causal agency, and self-determination. Nonetheless, there is a need to provide a detailed operationalized definition to assist in creating effective supports for decision-making. We need, in essence, definitions of the decision-making process and an understanding of decision-making skills. Thus the decision-making process is, essentially, a taxonomy of how decisions are typically made. Table 3.1 illustrates a synthesis of decision steps discussed in the research literature. Decision-making skills refer to a broad set of attributes that incorporate problem-solving and choice-making activities in a process to select one of several identified solutions.

Pathways of Decision Processing Model There are a number of models and theories of decisionmaking to use in creating supports for decision-making, but we have opted to apply the Pathways of Decision

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Theory Underpinning Supported Decision-Making Processing Model (Hickson & Khemka, 2013; Khemka & Hickson, 2017) because it is the only such model that has been developed in the context of supporting people with intellectual disability to be engaged meaningfully in the decision-making process. Supported decision-making, by definition, is a process intended to support people who by virtue of cognitive limitations are not able to make many decisions without supports (though, of course, most people do not make decisions completely independently and would not make as effective decisions if they did so). The Pathways of Decision Processing Model (Hickson & Khemka, 2013; Khemka & Hickson, 2017) was conceptualized as part of an ongoing effort to provide supports for people with intellectual disability who are at risk of personal abuse, neglect, and domestic violence. Khemka and Hickson (2008) developed an intervention (ESCAPE-DD) that teaches problem-solving and decision-making processes to youths and adults with intellectual disability and developmental disabilities to enable them to avoid interpersonal interactions that may result in negative outcomes (for information on ESCAPE-DD, see Khemka, 2000; Khemka & Hickson, 2008; Khemka, Hickson, & Reynolds, 2005; Hickson & Khemka, 2013, 2014). The Pathways Model takes into account the situational and environmental contexts in which decisions are made, which we discuss subsequently. The model describes four alternative decision pathways that typify the types of decisions made and the contexts in which they are made.

162

Decision-Making Skills and Support Needs for Decision-Making The first pathway is the intuitive automatic decision processing pathway. Many everyday decisions use this pathway, in which intuitive automatic processes are deployed, with little or no effort on the part of the decision-maker. The second pathway is the reasoned reflective processing pathway, in which decision-makers must slowly and analytically process multiple components and steps, and consider multiple alternative courses of action. This is the model consistent with the steps described in Table 3.1. The third pathway is not a new pathway, but instead involves switching from the intuitive automatic pathway to the reasoned reflective pathway when a situation that initially is perceived to be innocuous subsequently is perceived to require more thoughtful deliberation. The fourth pathway involves the automation of the repeated reasoned process to an intuitive process that is based on repeated decisionmaking experiences. The Pathways Model is useful for identifying factors that influence decision-making, from environmental and situational factors to intra- and interpersonal factors. The decision-making process is complex in large measure because the timing, contexts, situations, and environments in and about which decisions are made contribute significantly to the importance of the decision in people’s lives. Contexts and situations often involve other people and, at times, the potential for negative consequences depending on the outcome of the situation and the decisions considered and made.

163

Theory Underpinning Supported Decision-Making One reason for the overuse of full guardianship for people with intellectual disability is the stereotypical belief that decision-making of all types is a complex process requiring sophisticated cognitive skills and, as such, is not possible for people with an intellectual impairment. As Khemka and Hickson (2017) find, however, for all people, cognitive, motivational, and emotional factors weigh heavily on the decision-making process. Thus to consider only cognitive factors is to miss the point that most people seek help to make more complex decisions, and that emotional and motivational aspects play a larger role than cognitive factors in the type and quality of many decisions made. Indeed, research by Khemka and Hickson (2017) finds that the relationship between language functioning scores and effective decision-making for adolescents with intellectual disability and developmental disabilities is stronger than the relationship between IQ scores and effective decision-making. For youths with autism spectrum disorders (ASDs), the relationship between self-actualized goal orientation and effective decision-making similarly was higher than the latter’s relationship with IQ. Khemka and Hickson (2017) note that “[t]he strong association between self-actualized goal orientation and decision-making among adolescents with ASD suggests that higher awareness of adaptive goal priorities can help provide the evaluative framework and requisite motivation to approach decisionmaking in a more focused, effective way (p. 149).”

164

Decision-Making Skills and Support Needs for Decision-Making Thus goals associated with decision-making serve as a means to motivate decision-making and improve outcomes. Khemka and Hickson (2017) report a study that tested this explicitly. Adolescents with intellectual disability and developmental disabilities were divided into two groups based on high or low self-actualization–based goal systems. Participants’ ability to recommend effective decisions in response to (hypothetical) interpersonal situations incorporating negative peer pressure was measured. The group with more internalized goal orientation was more effective at generating effective decisions in the peer-pressure situation. Khemka and Hickson (2017) also report on pilot evaluations of the role of emotions in the decision-making process of adolescents aged eighteen to twenty-one with intellectual disability and developmental disabilities who were participating in a post-secondary education program at a college. The context for these studies involved hypothetical situations of cyberbullying (via the Internet or telephone). Participants were assessed with regard to their ability to generate an effective decision in response to the cyberbullying. Overall, effective decisions were generated only about half of the time, suggesting a need for more explicit instruction in this area. Most respondents associated the decision-making process in response to cyberbullying with emotions of distress and embarrassment. Only a small percentage of

respondents

associated this

decision-

making process with feelings of anger. Clearly, these

165

Theory Underpinning Supported Decision-Making emotional states impact the types of decisions that are made. There was a strong positive relationship between generating effective decisions and more internal locus of control scores, suggesting an important role for agency beliefs in the decision-making process, and respondents indicated high levels of emotionality in relation to the cyberbullying situations. We have highlighted the role of cognitive, motivational, and emotional factors in this section, and we return to factors that influence decision-making in subsequent sections, because these dynamics are supported by research using the Pathways Model. We turn next to examination of the steps in the decision-making process that are most reflective of the reasoned reflective processing pathway from the Khemka and Hickson Pathways Model.

Decision-Making Process Steps As a preliminary clarification, decision-making processes vary across cultures as well as across contexts and time. We present decision-making steps in Table 3.1 not to imply a primary or superior process, but instead to identify many possible steps in decision-making areas in which people with intellectual disability may benefit from supports. Before considering these steps in detail, it is useful to discuss the role of culture and context in decision-making and its relation to supported decision-making. Cultures and contexts vary widely, as a function of the characteristics of the people not only within that culture, but

166

Decision-Making Skills and Support Needs for Decision-Making also within specific cultural elements as well, and those elements include how decisions are made (Blanck & Flynn, 2017). Frankland and colleagues (2004) examined issues pertaining to the application of component elements of selfdetermined action, which include decision-making processes, to people within the Diné (in English, Navajo) nation, and noted that: the ways in which these are expressed differs from an Anglo perspective. While the Diné people value self-regulation and autonomy, they are operationalized more in an emphasis on the importance of interdependence and group cohesion above independence and autonomy. (p. 202)

Thus, within the Diné nation, decision-making was not an individualistic activity, but a collective one. Another illustration of the implication for collectivist social contexts on these factors was provided by Ewalt and Mokuau (1995) in discussing self-determination from the Pacific Islander perspective. They note that “self-determination for the cultures of the pacific region is defined by values of collective affiliation rather than by individualism” (Ewalt & Mokuau, 1995, p. 170). To illustrate the point, they provided the following vignette: Debra, a Hawaiian woman, was interested in practicing medicine in the community in which she had recently completed her medical education. Here she was offered a physician’s position with a reputable family clinic and a good salary. Combined with her comfortable living quarters and her network of friends, remaining in this

167

Theory Underpinning Supported Decision-Making community was an attractive option for Debra. However, her family, and in particular her parents, wished for Debra to establish her practice in the community in which she was raised. To do so would require her to move from the city back to her native community. Although there were a few moments of hesitation, Debra quickly adjusted and aligned her values with those of her family. She reasoned that by returning to her native community she would be reunited with her family and be available to provide medical care to members of her family and a community with severe health problems. (Ewalt & Mokuau, 1995, p. 170)

To people from more individually oriented cultures, Debra’s decision to return to her native community may appear to limit her self-determination and decision-making opportunities. She was moving back to a context in which she had less personal freedom and where she would have less personal control over decisions that affect her life. But this analysis, as articulated by Wehmeyer and colleagues (2011), misses the point about what it means to be self-determined. As discussed in Chapter 4, self-determination is volitional action – making or causing things to happen in one’s life. Acting in a self-determined manner is not about making decisions in specific ways. Rather, it is about being involved in the decision-making process that one selects and identifies with in whatever way is consistent with one’s beliefs, values, and preferences. Supports to enable participation in supported decisionmaking will need, as such, to be sensitive and responsive to

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Decision-Making Skills and Support Needs for Decision-Making cultural values, beliefs, and situations (Arstein-Kerslake et al., 2017). We discuss these cultural issues further in the subsequent section, which elaborates on factors that influence decision-making. We turn now to an overview of the types of activities, as depicted in Table 3.1, that are found in the literature concerning decision-making processes. Examining the steps presented in Table 3.1, one first consideration in the decision-making process involves the person’s recognition of the environmental and contextual challenges that create the opportunity or threat that led to the need to make a decision. Causal action, where we situate the decision-making process, typically is in service of a goal, so the person must identify the goal that the decision is intended to meet. Next, the identification of relevant action alternatives occurs. Some alternatives are known to the person making the decision, other options will not be known, and the person will need to engage in actions (for example, learning from others, searching, and so forth) that enable them to identify additional action alternatives. As the person identifies alternatives, they must evaluate their relevance in terms of feasibility and implementation, the capacity of alternatives to reach the goal, and their relevance to the circumstances creating the opportunity. This action step is a problemsolving process, that is, individuals make a decision to choose or select one alternative from another alternative; if they do not know the alternatives, it is a problem-solving process to identify them.

169

Theory Underpinning Supported Decision-Making Then decision-makers determine the consequences if each alternative is implemented. Again, some consequences will be known and some will not, and decision-makers will need to generate other as-of-yet-unknown consequences. As consequences are identified, the person must identify, or generate if not known, information about the risks and benefits associated with each consequence. Once consequences are reasonably known, and risks and benefits considered, the person must determine the probability that a given consequence will occur if the action is selected. After this, decision-makers consider the relative importance (so-called value and utility) of each alternative and related consequence as a function of their preferences, values, and beliefs as they align with the goal for which the decisionmaking process was initiated. The decision-maker then integrates the information to choose the most attractive course of action to them at that time. We discuss supports that may enable people to engage in the decision-making steps subsequently. Next, however, we return to examination of additional factors, other than those identified by the Pathways Model, that impact and influence decision-making.

Factors that Influence Decision-Making There are multiple factors, individually and in combination, that influence decision-making. We have discussed issues pertaining to motivation, emotion, and cognition. Shogren, Wehmeyer, Lassman, and Forber-Pratt (2017) conducted an

170

Decision-Making Skills and Support Needs for Decision-Making extensive literature review pertaining to the decisionmaking literature and identified a number of personal and environmental factors identified as impacting and influencing the decision-making process.

Personal Factors Sociodemographic Factors. Numerous sociodemographic factors influence decision-making. Increased age often relates to more conservative decision-making processes, reflecting the idea that younger decision-makers have not learned to take into account all risks associated with a decision. Race and ethnicity play roles in such processes, as we have discussed. Gender is a sociodemographic factor that predicts the number and type of decisions made. Frankland and colleagues (2004) identify cultural structural factors that influence how self-determination–related patterns occurred among the Diné people. These include: •

Resident patterns: Diné people live in small reservation towns and remote areas of the reservation in small camps. Because losing land is equated with loss of life and security, Diné people in rural areas make concerted efforts to retain their land, despite the poverty and unemployment that may be present in such remote areas. Decisions about where to live, then, are driven by cultural factors.

•

Socioeconomic status: Diné perspectives regarding financial stability are different from those held by Anglo-

171

Theory Underpinning Supported Decision-Making Europeans, defining financial well-being in terms of reliable housing, reliable transportation, sufficient livestock for food, and having family present and united. Decisions about financial issues emphasize family unity over financial issues. •

Family structure: Given the above, family structure is a significant factor in decisions among the Diné people, whose culture is organized by immediate family (blood relations) and extended family or clans. This family and clan structure establishes a foundation that guides social interactions, status, and responsibilities within one’s tribe and in the community, and sets parameters for how decisions are made and who makes them.

Ewalt and Mokuau (1995) identify similar factors when discussing self-determination from a Pacific Island perspective, including the value of collective affiliation, an emphasis on cooperation and on the unity of the group, and the emphasis of the family as the focal point, not the individual. Another factor related to cultural contexts is the issue of parenting style. Parental practices that impact decisionmaking vary considerably across cultures. Chinese parents are often characterized as authoritarian (Chen et al., 2002), and tend to emphasize children’s respect for and listening to parents and other older relatives (Chen et al., 2002). It is inappropriate, though, to talk about these styles as in some way inferior; these are factors that impact how decisions are made later in life.

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Decision-Making Skills and Support Needs for Decision-Making

Decision-Making Experience. It is self-evident that prior experience of making decisions is a factor that influences decision-making processes. Many people with disabilities are denied opportunities to engage in the decision-making process in their lives as a result of the aforementioned assumptions about their cognitive capacity (or lack thereof), and miss out on opportunities to learn how to make decisions by making decisions. Research shows, however, that if provided with opportunities to engage in decision-making processes, people with intellectual

disability

and

developmental

disabilities

become better at the process. Tymchuk, Andron, and Rahbar (1988) show that teaching mothers who had intellectual disability how to solve problems in relation to decisions about their children’s health resulted in better decisions related to parenting situations. Relatedly, prior experiences with elements in the decision-making process, such as experience learning about preferences, learning to solve problems, and so forth, are factors in decision-making. Trevena and Barratt (2003) show that prior experience of a range of job opportunities that improved knowledge about personal preferences led to better decisions about career activities for people with intellectual disability.

Emotional Factors. We have discussed the role of emotions in decision-making, but it is worth noting that the literature review identified other aspects of emotion as impacting decision-making, ranging from one’s perceived quality of life, to level of stress, to concerns about burdening others.

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Theory Underpinning Supported Decision-Making

Environmental Factors and Demands There is a wide array of environmental factors that influence decision-making processes, as elaborated on in Chapter 7. As discussed, these factors must be considered in conjunction with an understanding of decision-making skills to identify needed supports described in this chapter. Shogren, Wehmeyer, Lassman, and Forber-Pratt (2017) related many of the factors that have been identified in the literature to disability, aging, and mental health. Availability and accessibility of information on which to base a decision are important factors. How information is provided, who provides such information, and how long someone has to process and weigh information all influence the decisionmaking process. Of course, the complexity of the decision itself, which is usually related to the context or environment, impacts the process. Decisions made in the midst of a crisis place other demands on the decision-maker than decisions for which the person may have more time to reflect. Most decisions involve other people, whether there are others supporting the decision, or the decision is about others, or the decision impacts others. Social relationships matter in these kinds of decisions. In a medical decision, if one has a trusted relationship with a medical provider, there is a better chance that one will act with greater confidence in the information provided. On the other hand, thinking about a situation in which a person with intellectual disability lives in a congregate setting, that person may be influenced by group home staff in

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Decision-Making Skills and Support Needs for Decision-Making decisions that impact the staff. This raises the issue of the role of living, working, and similar environments on decisionmaking for people with intellectual disability and developmental disabilities. Research establishes that people who live in congregate settings experience fewer opportunities to make choices (Stancliffe & Wehmeyer, 1995), and that people who live or work in more restrictive (congregate) settings are less self-determined as a function of the environment (Wehmeyer & Bolding, 1999, 2001). Although not measured in these studies, one can extrapolate that similar barriers to involvement in decision-making exist for many of the same reasons in such contexts. One final factor identified by Shogren, Wehmeyer, Lassman, and Forber-Pratt (2017) is the attitude of family members and others who are close to the person requiring support – how decisions are made in families, the expectations about the decision-making capacity of the family member with disability, and related factors influence involvement in and the efficacy of the decision-making process.

Supports to Promote Decision-Making Social-ecological models view disability as a function of the interaction between one’s capacities and the demands of the context, whether in work, school, home, or in the community. Supports are anything that reduces the gap between personal capacity and environmental demands. As a first step in designing supports, one should consider how to better enable the person to meaningfully participate in the decision-

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Theory Underpinning Supported Decision-Making making process and to engage in self-directed decisionmaking to the greatest extent possible. Often, people with disabilities have limited experiences of making decisions and, as a result, have limited skills in this area. It is beyond the scope of this chapter to go into detail with regard to the types of skills that lead to enhanced decision-making capacity (in Chapter 10, we discuss assessment and intervention to promote decisionmaking), but if one looks at the steps illustrated in Table 3.1, there are many skills that the person may learn associated with each step. Beyond the focus on acquiring skills (and, for that matter, beliefs about oneself and one’s capacities to influence the environment), there are supports that should be considered associated with the environment and context itself, and with generalized personal supports. With regard to the former (environmental supports), there is a rich history in the field of making modifications to environments, contexts, and tasks that enables people with disabilities to function successfully, from curb cuts to job accommodations (Blanck, 2014). With regard to task modifications, several principles promote the education of learners with more extensive support needs. The principle of maximal participation is the first such principle, and states that all people have the right to fully participate in activities that contribute to the quality of their lives (Baumgart et al., 1982). As discussed, the means to achieve maximal participation

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Decision-Making Skills and Support Needs for Decision-Making is by adhering to the principle of partial participation, which affirms that all people may meaningfully participate “at least in part, in a wide variety of least restrictive school and nonschool environments and activities” (Baumgart et al., 1982, p. 19). The point is that even the most complex of tasks, including decision-making, may be broken down into discrete steps and elements, and people may be supported to engage in those steps that they can carry out independently, do with some level of support, or skip entirely if not necessary for the desired outcome. The intent of providing supports for decision-making is not (necessarily) to make someone an independent decisionmaker, but instead to provide supports that maximize the person’s participation in the decision-making process through the principle of partial participation. There are supports for the decision-making process itself and supports that may be identified by a decision-making process that are implemented as part of the process. With regard to the former (supports for the decision-making process), one example involves providing supports to enable someone to communicate their preferences and interests. If a person has difficulty with verbal communication, supports such as augmented and alternative communication may be put in place to enable the person to more effectively and efficiently participate in the process. Technology provides supports for decision-making beyond its utility in enabling alternate means of communication (Blanck, 2014). Davies, Stock, and Wehmeyer (2003)

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Theory Underpinning Supported Decision-Making evaluated the impact of a visual/audio prompting system running on a palmtop PC (an early equivalent of a smartphone) designed to facilitate more independent decision-making by people with intellectual disability and developmental

disabilities.

The

visual

prompting

system

consisted of photos on the device of steps in a multistep vocational task accompanied by audio instructions or cues associated with each step (photo). The task moved along sequentially for a while (with picture and audio prompts to complete one step, which led to picture and audio prompts for the next step), until a decision point was reached, that is, a step in the process that required the person to decide, using some sort of cue, one of several options. At this point the prompting system displayed photos of the potential options on the screen at once (rather than one photo of a single step in the process). The audio instructions provided information about which picture to select based on the information presented (e.g., materials for the task or information about steps in the task), at which time the person would select the photo that matched that information, which initiated a set of steps associated with that alternative and not others. Of course, technology also may be used to make the process of gathering information to inform a decision simpler or, even, feasible. One resource most people use to get more information about options in a decision-making process (particularly, perhaps, in medically related decisions) is the Internet. Unfortunately, however, such information often remains inaccessible because the software, hardware, and

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Decision-Making Skills and Support Needs for Decision-Making websites are not cognitively accessible (Blanck, 2014). Research provides multiple ways to ensure that computers, tablets, smartphones, and other devices are usable and that websites are accessible through features such as error minimization, incorporation of repetition and consistency, removal of clutter on screens, text to speech options, graphic and visual presentation of content, and so forth (Stock et al., 2006). Davies and colleagues (2008) show that people with intellectual disability may be supported to access print content through a cognitively accessible portable reading system. Davies and colleagues (2017) provide evidence that people with intellectual disability may be supported to complete online surveys through cognitively accessible means, providing a means to personalize information submitted in searches. Introducing technology may support different aspects of the decision-making process and can provide opportunities for people to learn and practice decision-making skills. Other supports involve the establishment of trusting relationships. Most people have the support of others when considering and making more complex decisions, from trusted professionals such as physicians and therapists to friends and families who are willing to support the person’s will and preferences (Blanck & Martinis, 2015). The benefits of having trusting relationships range from having someone to talk with who you know will hold your information as confidential, to having someone to meet with who has greater knowledge on a topic about which one may be making a decision, to

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Theory Underpinning Supported Decision-Making having someone with whom to share one’s feelings and emotions. Trusted relationships are a form of support that is at the heart of supported decision-making.

Conclusion It is not feasible to list every possible form of support that may be useful in a given decision-making situation. In Chapter 10, we discuss an intervention (Self-Determined DecisionMaking Model, or SDDMM) intended to provide a process to support a decision-maker with a disability to engage in selfregulated problem-solving, leading to setting goals appropriate to given decisions, creating an action plan to reach that goal, and monitoring and evaluating progress toward the goal, as well as adjusting the action plan or goal as necessary. The SDDMM process enables decision-makers with a disability to learn and practice skills such as problemsolving and goal-setting, which are integral to the decisionmaking process. Usually, the best way to learn to make decisions is to engage in decision-making, and the SDDMM provides a means to support people to acquire skills while engaged in decision-making. Add-in options provided by technology, modifications to environments and contexts, and the role of trusted relationships and supports are strong enablers for people with intellectual and developmental disabilities to play a meaningful role in their decision-making process.

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PART IV Applications of a Social-Ecological Framework for Supported Decision-Making

9 Supported Decision-Making and Self-Determination Research

C

urrent theory and practice in supported decisionmaking reflect the culmination of decades of basic and applied research into the benefits of self-

determination. As described in Chapter 4, self-determination is defined as a “dispositional characteristic manifested as acting as the causal agent in one’s life. Self-determined people (i.e., causal agents) act in service to freely chosen goals” (Shogren et al., 2015a, p. 258). People exercise selfdetermination in multiple ways in their lives by being involved in decisions that affect their lives, such as where they work and live, and with whom they interact, which promotes the development of self-determination (Blanck & Martinis, 2015). Thus, with opportunities to engage in self-determined actions, people become causal agents over their lives (Shogren et al., 2015a).

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Social-Ecological Framework for Supported Decision-Making This chapter examines existing research on selfdetermination that informs supported decision-making theory and practice. It also provides direction for ongoing basic and applied research on supported decision-making that will be further explored in Chapter 10.

Self-Determination Research Research shows that people exercise self-determination when they: (1)

Act volitionally;

(2)

Act agentically; and

(3)

Have positive action-control beliefs (Shogren et al., 2015a).

However, studies show that people with disabilities tend to be less self-determined than people without disabilities (e.g., Blanck, 1992a, 1992b; Shogren et al., 2007; Wehmeyer, Kelchner, & Richards, 1996). This largely is the result of people with disabilities having fewer opportunities to exercise self-determination (Stancliffe, 2001), often because they have been ordered or placed into guardianship, institutional settings and workplaces, and other substitute decision-making arrangements (Blanck, 1992b; Blanck & Martinis, 2015). Unfortunately, the use of substituted decision-making persists – and even has increased (Blanck & Martinis, 2015) – despite federal laws and policies requiring and encouraging inclusion (Hatch, Crane, & Martinis, 2015),

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Supported Decision-Making and Self-Determination Research and research showing that people with disabilities may be more self-determined when given the opportunity (Shogren et al., 2012). For example, students provided with educational and other opportunities to further their decisionmaking, goal-setting, problem-solving, and self-advocacy show increases in self-determination (Algozzine et al., 2001). A synthesis of several related studies shows that such agentic interventions are effective ways to increase the self-determination of people with disabilities (Cobb at al., 2009). Other studies find that the opportunity to make decisions (e.g., in employment or housing) is a strong predictor of self-determination (Ticha & Abery, 2012). Researchers also find that people with intellectual disability who live or work in more restrictive settings, such as institutions and sheltered workshops, have lower levels of self-determination and satisfaction with daily life (Blanck, 1992a; Wehmeyer & Bolding, 1999, 2001; Wehmeyer, Kelchner, & Richards, 1995). The relation between self-determination and agentic decision-making is not necessarily dependent on an individual’s IQ score and functional abilities (Wehmeyer & Bolding 1999, 2001). Instead, an important factor is that restrictive settings are more likely to limit the opportunities people with disabilities have to make choices and practice problem-solving (Stancliffe, 1997, 2001). Conversely, people with disabilities in more inclusive settings (Shogren et al., 2007), are given opportunities to be involved in and make

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Social-Ecological Framework for Supported Decision-Making choices about their education, and are more likely to exercise self-determination (Williams-Diehm et al., 2008). As discussed in previous chapters, research shows that people who exercise greater self-determination have associated better life outcomes. For example, students with enhanced self-determination are more likely to be employed, live independently, and be active in their communities as adults (Shogren et al., 2015b; Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997). Similarly, adults who are more self-determined, particularly people with increased opportunities to make choices, are more likely to have a higher quality of life (Lachapelle et al., 2005).

Supported Decision-Making Research Self-determination is at the heart of supported decisionmaking theory and practice: “supported decision-making has the potential to increase the self-determination of older adults and people with disabilities, encouraging and empowering them to reap the benefits from increased life control, independence, employment, and community integration” (Blanck & Martinis, 2015, p. 31). Indeed, supported decision-making was first proposed to “overcome the barriers that prevented people with intellectual disabilities from being self-determining citizens” (Browning, Bigby, & Douglas, 2014, p. 35). In 1992, the Canadian Association for Community Living task force (see

186

Supported Decision-Making and Self-Determination Research Chapter 6) set out the first principles of supported decisionmaking, challenging “the belief that personal autonomy could only be expressed independently.” These principles included that: •

People have the right to make decisions impacting their lives and to receive the support of people they choose;

•

Supported decision-making is built on the relationship of trust between the person and his or her supporter(s) that helps the person understand, make, and communicate his or her decisions; and

•

Society must not discriminate against people with intellectual disability and developmental disabilities based on stereotypes or preconceived notions about their competency to make decisions (Browning et al., 2014).

In subsequent years, research has supported the positive association between providing people with intellectual disability and developmental disabilities the opportunity to make meaningful life choices and the support they need to do so. The pioneering Canadian principles led to the development and implementation of supported decision-making in theory and widespread practice.

Decision-Making Research Research on decision-making consistently shows that people with disabilities develop enhanced decision-making skills, which contribute to valued life outcomes and community integration, when they receive appropriate supports and

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Social-Ecological Framework for Supported Decision-Making opportunities. In one study, older adults with intellectual disability and developmental disabilities were provided with the opportunity to make and communicate choices in one of two ways. Not surprisingly, some of the adults were better able to make decisions using one method, while others made decisions more effectively using the other. Thus people with disabilities’ preferences for decision-making should be considered, assessed, and applied to enhance decisionmaking skills (Parsons et al., 1997). In another study, people with intellectual disability and other cognitive disabilities were provided with information to help them choose whether to have a blood test. The support of providing a choice opportunity alone was enough for some participants to improve their decisionmaking capacity to the point where they were able to effectively participate in the decision to have the blood test (Wong et al., 1999). Other studies show the positive impact of providing opportunities and support for decision-making. For example, best practice in supporting people with intellectual disability

and

developmental

disabilities

is

providing

meaningful choice opportunities. However, researchers find that, prior to training staff, limited choice opportunities are typically provided. Cooper and Browder (2001) examined a multicomponent staff training package and found that, before intervention, staff members provided two or fewer opportunities for such choices and prompts to participants to make choices. Predictably, people with disabilities

188

Supported Decision-Making and Self-Determination Research supported by those staff members made relatively fewer choices, and did not fully participate in possible community activities. After the intervention, when staff provided more choices, opportunities, and information, participants more than doubled their expressed choices, and subsequently increased their participation in community activities (Cooper & Browder, 2001).

Supported Decision-Making Studies and Pilot Projects Because supported decision-making is a relatively new paradigm, there has been more scholarly commentary than research into its potential and impact. As detailed in other chapters, in recent years commentators across the globe and a US federal agency focused on integrated community living for persons with disabilities have called for the increased use of supported decision-making as an alternative to guardianship (Martinis, 2015a; Martinis & Gustin, 2017a; Salzman, 2011). Nonetheless, as one leading commentator stated: [s]upported decision-making . . . has the potential to be an empowering alternative to the much-maligned process of guardianship, as well as an empowering element of the guardian-ward relationship. . . . [However], research is needed to determine the extent to which supported decision-making approaches achieve their goals, and the conditions under which they are likely to do so. If supported decision-making policies are not guided and informed by such research, there is a risk that supported decision-

189

Social-Ecological Framework for Supported Decision-Making making will not, in fact, be supportive of persons with cognitive and intellectual disabilities. (Kohn, Blumenthal, & Campbell, 2013, p. 1157)

In the United States and abroad, we are not aware presently of published studies of the type called for by Kohn, Blumenthal, and Campbell (2013). However, as discussed later in this chapter, systematic studies are underway. Other pilot projects document the effective use of supported decision-making by people with intellectual disability and developmental disabilities and provide insight into the conditions needed for effective supports (Douglas et al., 2015). One recent review of pilot projects in Australia found people with intellectual disability and developmental disabilities have the most “successful” supported decisionmaking experiences when: •

Support is provided by individuals with whom they have a trusting relationship;

•

People with disabilities have basic knowledge of their goals and previous decisions, and the nature of their impairments and levels of functioning;

•

Supporters are flexible and use variable strategies to tailor supports to the individual’s unique needs and characteristics; and

•

Supporters collaborate with the individual to reach desired outcomes (Douglas et al., 2015). But people with disabilities and their supporters in these

pilot projects faced common challenges, including:

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Supported Decision-Making and Self-Determination Research •

Supporters struggling with practical ways to implement supported decision-making;

•

People with intellectual disability and developmental disabilities and their supporters having difficulty balancing a person’s “dignity of risk” and safety;

•

Disagreements about what is in the person’s “best interests;” and

•

Supporters intentionally and unintentionally influencing the person’s decisions (Douglas et al., 2015).

In the United States, a supported decision-making pilot project conducted by the Center for Public Representation and Nonotuck Resource Associates completed its second year in 2017. The independent evaluation found the project supported nine adults to make seventy-two decisions. The evaluators found that adults with intellectual disability and developmental disabilities who adopted supported decision-making (“adopters”) expressed satisfaction with supported decision-making, with the selection of decision supporters, and with the ways in which decision supporters provided assistance. Adopters also reported that their preferences and decisions were respected. The pilot participants (staff, care managers, individuals who adopted supported decision-making and their supporters) reported they were satisfied with the mechanics of supported decision-making. Thus, although supported decision-making only was in use for a little over one year, this pilot demonstrated that when people with disabilities are given opportunities to use their decision-

191

Social-Ecological Framework for Supported Decision-Making making skills with committed and trusted decision supporters, the result may be a satisfying experience with positive impact for adopters and decision supporters (Pell, 2017).

Ongoing Supported Decision-Making Research National Resource Center for Supported Decision-Making. The National Resource Center for Supported Decision-Making (NRCSDM) is a collaborative effort, led by the Quality Trust for Individuals with Disabilities, the Burton Blatt Institute at Syracuse University, and the Beach Center on Disability and the Kansas University Center on Developmental Disabilities at the University of Kansas. Begun in 2014 with funding from the US Department of Health and Human Services, Administration on Community Living, the NRC-SDM is conducting, among other groundbreaking activities, research to determine the ways in which people use supported decision-making, and the real-world impact supported

decision-making

has

on

people’s

self-

determination and quality of life (Blanck & Martinis, 2015). The NRC-SDM is conducting research in two phases: first, in a quantitative study measuring the use and impact of

supported

decision-making

on

self-determination;

and, second, in conducting qualitative interviews to determine the rich impact of supported decision-making on people’s quality of life. In these activities, the NRC-SDM developed a conceptual model for measuring supported decision-making for people with disabilities and older adults.

192

Supported Decision-Making and Self-Determination Research The model allows for examination of the extent to which people use supported decision-making, and the impact it may have on self-determination and quality of life. The model, conceptualized as the Supported DecisionMaking Inventory System (SDMIS), and described in Chapter 10, is being administered in the Community Living Project, described in the section below. The NRC-SDM is conducting qualitative research by interviewing fifteen people (five older adults, five adults with intellectual disability and developmental disabilities, and five youths in transition with intellectual disability and developmental disabilities) and their supporters to examine the reported impact of supported decision-making on their lives. This study explores among other areas the ways in which: •

Supported decision-making methods differ among people, circumstances, and decisions;

•

Successful supported decision-making relationships share common characteristics;

•

Common challenges hinder the use of supported decision-making; and

•

Supported decision-making methods may change over time and circumstance, and the reasons for change (Blanck & Martinis, 2015). The NRC-SDM is disseminating its findings and conclu-

sions in articles, books, and practice guides for people with intellectual disability and developmental disabilities, their

193

Social-Ecological Framework for Supported Decision-Making families, supporters, and professionals. Dissemination is occurring at national and international conferences, webinars, and via customized training and education modules for people with intellectual disability and developmental disabilities, families, and professionals. The NRC-SDM is also preparing toolkits and resources to help people with disabilities identify potential supporters and implement supported decision-making effectively (Blanck & Martinis, 2015).

Supported Decision-Making Community Living Project. The NRC-SDM partners are engaged in related research that examines the relationships among supported decision-making, selfdetermination, quality of life, and community participation and integration for people with intellectual disability and developmental disabilities. The team is exploring ways in which different supported decision-making interventions are associated with increased self-determination, independence, and quality of life. A model to support decisionmaking, the Self-Determined Decision-Making Model, is being developed and is described in detail in Chapter 10. Key questions explored through the Community Living Project, include: •

In what ways, and to what degree, do individual and environmental factors separately and combined (e.g., legal decision-making status) associate with a person’s use of supported decision-making?

•

What is the degree of association between supported decision-making and self-determination?

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Supported Decision-Making and Self-Determination Research •

In what ways, and to what extent, is a person’s use of supported decision-making associated with individuals’ self-determination and quality of life (Blanck, Wehmeyer, & Shogren, 2015). To address these issues, the NRC-SDM’s Community

Living Project study will collaborate with more than 300 individuals with intellectual disability and developmental disabilities who are residents of the District of Columbia, United States. The study employs the newly created Supported Decision-Making Inventory System (SDMIS), developed and validated by the NRC-SDM partners, to assess the participants’ use of supported decision-making. Additional data will be collected through environmental assessments, observations, and interviews. These measures together allow for multiple views of the supported decisionmaking process in operation. The SDMIS will provide new data about the opportunities and challenges in implementation of supported decision-making as well as the prospects for improving personal decision-making skills and abilities to modify environments and decision supports (Blanck, Wehmeyer, & Shogren, 2015).

Self-Determined Decision-Making Project. Building on the supported decision-making Community Living Project, discussed in Chapter 10, the Self-Determined Decision-Making Project is focused on evaluating a model that may be implemented by supporters of people with intellectual disability and developmental disabilities to increase self-determination, set decision

195

Social-Ecological Framework for Supported Decision-Making goals, and solve problems using supported decision-making. To be completed in 2020, this study aims to answer research questions such as whether, and to what extent, interventions enable supporters to promote self-determination and whether supported decision-making may increase self-determination and individual quality of life. To address these questions, the NRC-SDM team is collaborating with 120 additional individuals with intellectual disability and developmental disabilities in the District of Columbia. In the first-of-its-kind examination, the project team is conducting a randomized control trial study of the Self-Determined Decision-Making Model, with participants assigned randomly over time to a “treatment” (intervention) and control (no intervention) condition. This longitudinal study allows for the examination of the impact of supported decision-making interventions over time. During the intervention period, participants and their supporters work with facilitators to develop, implement, and monitor decision goals and action plans across life areas such as housing, finances, health, and social activities. During the study period, participants will be administered the Supported Decision-Making Inventory System and other assessments to examine whether, and to what extent and in what ways, the Self-Determined Decision-Making Model is positively associated with individual selfdetermination and quality of life (Blanck, Wehmeyer, & Shogren, 2015). As before, the study findings will be shared in multiple ways to a wide variety of stakeholders.

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Supported Decision-Making and Self-Determination Research

Giving Mental Health a Voice Project. Beginning in 2016, the Saks Institute for Mental Health Law, Policy and Ethics at the University of Southern California and the Burton Blatt Institute at Syracuse University partnered to undertake a series of pilot projects to promote, implement, and study supported decision-making by people with serious mental illnesses (e.g., schizophrenia, obsessive-compulsive behavior, and bipolar disorder). This multiyear project is to empower people with serious mental illness to understand and use supported decision-making, examine the extent to which people with serious mental illness who use supported decision-making have improved life satisfaction and community integration, and ultimately to educate stakeholders about supported decision-making as an alternative to guardianship for people with serious mental illness (Saks, 2016). During the project’s first year, the partners identified “best practices” in supported decision-making by consulting with stakeholders and experts, and conducting a literature review designed to identify supported decision-making models that are adaptable for use by people with serious mental illness. The partners consulted with experts and conducted a literature review to identify measures of life satisfaction and community integration that may be used and adapted by the project participants (Saks, 2017). With these background materials, the partners developed tools to help participants develop and implement supported decision-making systems. Additionally, they adapted quantitative and qualitative

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Social-Ecological Framework for Supported Decision-Making tools to measure participants’ community integration and life satisfaction (Saks, 2017). During the project’s second year, the partners identified four sites in California and New York where participants with serious mental illness will be recruited. Once identified, the participants will be assessed to determine their baseline levels of community integration and quality of life. Thereafter, the participants at each site will be assigned randomly to intervention groups, in which they will be asked to choose several life areas in which they would like support in making decisions (there is also a “control” group, in which participants will be asked to choose from preselected support areas for which they will receive training). All participants will be assisted to create and implement supported decision-making systems. Over time, the project partners will assess the participants’ quality of life and community integration (Saks, 2016). In the third year of the project, participants will be asked to continue to implement their supported decision-making systems. Project partners will continue to assess participants’ life satisfaction and community integration at regular intervals over time. During the final six months of the project, the partners will review the information collected to consider if there were measurable positive associations with supported decision-making on participants’ lives. Once these pilot studies are completed and assessed, it is anticipated that larger, more diverse studies will be conducted, and other countries such as Spain will participate

198

Supported Decision-Making and Self-Determination Research in this research project, with the findings to be disseminated widely (Saks, 2016).

Conclusion There is a need for systematic study of supported decisionmaking to demonstrate its potential short- and long-term impact on the lives of people with intellectual disability and developmental disabilities, serious mental illness, and other background characteristics. Presently, there is limited knowledge, other than case studies and pilot projects, about the ways in which supported decision-making may be associated

with

increases

in

self-determination

and

improved life outcomes. The growing body of studies suggests there are measurable ways to assess supported decision-making, and its implementation in practice. The goal is to generate and disseminate information about best practice strategies to individuals with disabilities, their families and supporters, health and other service providers, and policy makers.

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10 Assessment and Intervention in Supported Decision-Making

T

his chapter summarizes emerging research and practice directions in assessment and intervention, applying a social-ecological model to sup-

ported decision-making. Chapter 9 introduced emerging work in this area, demonstrating the hypothesized connections between supported decision-making, self-determination, and other quality of life outcomes. The emphasis in this chapter is on the specific steps being taken to actualize supported decision-making in ways that enhance the agency of people with disabilities over decisions about their lives to enhance outcomes. Assessment approaches, including the development of assessment tools such as the Supported Decision-Making Inventory System, are described. Strategies for using assessment data to develop interventions and supports to address decision-making abilities, environmental demands, and

200

Assessment and Intervention in Supported Decision-Making supports needs for decision-making consistent with a socialecological approach to supported decision-making (Shogren & Wehmeyer, 2015a) are also described. Decision-making aids and supports are overviewed, as well as information on interventions to support decision-making. This includes information concerning a new intervention, the SelfDetermined Decision-Making Model, which may be used by decision support providers to engage people with disabilities in the process of self-regulating their problem-solving as they work to make decisions and go after goals.

Assessment in Supported Decision-Making As introduced in Part III, to implement supports for decisionmaking it is necessary to understand decision-making abilities, environmental demands, and support needs. As such, it is critical to gather information that informs these areas when creating personalized supports for decision-making. Enabling people with disabilities to become actively engaged in the process of making decisions about their lives using supported decision-making arrangements necessitates an in-depth understanding of needed supports for decision-making in reference to environmental demands and personal abilities, preferences, interests, and values. When there is an understanding of supports needed for decision-making, such information may be used in practice to promote the agency and self-determination of people with disabilities through formal and informal support networks.

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Social-Ecological Framework for Supported Decision-Making One area of ongoing research is the development of strategies that enable decision supporters to understand each person’s individualized needs for decision-making supports and keep the person, and their rights to human and legal agency, at the center of the process of developing supports. Shifting from a presumption of the need for guardianship to the use of supported decision-making arrangements necessitates thinking differently about how information is gathered, through formal and informal assessment practices, to identify and evaluate the supports to enable people with disabilities to retain agency in the decision-making process. The development of the Supported Decision-Making Inventory System (SDMIS) (Shogren & Wehmeyer, 2016b), described later in this chapter and briefly in Chapter 9, represents an innovative approach to developing practicebased tools used by people with disabilities and their supporters to guide the development of supports for decision-making. Gooding (2015) reviewed the literature on implementing supported decision-making in line with the United Nations Convention on the Rights of Persons with Disabilities, and identified that there was a need for work in several areas related to assessment and supported decision-making, including the need to explore: •

How to interpret a person’s rights, will, and preferences;

•

Boundaries among different types of support arrangements;

•

Development of nondiscriminatory measures; and

202

Assessment and Intervention in Supported Decision-Making •

Empirical research on the impact of support arrangements.

To address the areas of need identified by Gooding and other researchers (Kohn, Blumenthal, & Campbell, 2013; Shogren & Wehmeyer, 2015a), efforts have begun to explore informal and formal processes used to understand the needs for support that people have in relation to decision-making. Formal and informal processes are needed to arrange supports for decision-making and differentiate among types of supports and enhanced self-determination and quality of life outcomes.

Supported Decision-Making Inventory System As mentioned in Chapter 9, we are engaged in efforts through the National Resource Center on Supported Decision-Making (NRC-SDM) to devise new strategies to enable supports that actualize the key components of supported decision-making arrangements. Shogren, Wehmeyer, Uyanik, and Heidrich (2017) described the development of the SDMIS (Shogren & Wehmeyer, 2016b), which, as noted in Chapter 9, is being refined and tested for feasibility and usability in ongoing research activities. Using the framework described in Part III, Shogren and Wehmeyer (2016b) conceptualized the SDMIS as three “inventories” that, together, form a system that may be used to plan for supports needed in decision-making, enabling people with disabilities to act meaningfully in supported decision-making arrangements. The three inventories include the:

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Social-Ecological Framework for Supported Decision-Making •

Supported Decision-Making Personal Factors Inventory;

•

Supported Decision-Making Environmental Demands Inventory; and

•

Decision-Making Autonomy Inventory.

Each inventory includes questions that address issues that impact the supports needed for decision-making by a person with a disability and may be used, in practice, to devise and evaluate systems of supports for decision-making. The goal of the SDMIS and its three inventories is to provide a meaningful assessment tool that may be utilized by planning teams in any context to attempt to understand and support agency and self-determination in decision-making. Building on social-ecological models of disability and their application to supported decision-making, the SDMIS was conceptualized as a way to actualize a socialecological approach to understanding supports needed for decision-making. Based on responses on the SDMIS, the goal is that people with disabilities and supporters better understand needs, environmental demands, and ways to enhance autonomy and agency over decision-making, selecting supports aligned with the person’s preferences, interests, values, and needs. Several core values, aligned with a strengths-based, social-ecological model of disability, guide development of the SDMIS. One is the importance of maximizing the participation of the person with a disability in the assessment and supports planning process. People with disabilities need different supports to communicate information about their

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Assessment and Intervention in Supported Decision-Making interests, preferences, and decision-making support needs, but the need for communication supports should not limit participation in the assessment process and the development of supported decision-making arrangements. Second, as highlighted in other chapters, promoting agency and self-determination is a central goal of supported decision-making arrangements and infusing opportunities for self-determination, as discussed in Chapter 4, must guide efforts to build supports for decisionmaking. In developing the SDMIS, systematic reviews of the literature were undertaken (Shogren, Wehmeyer, Lassman, & Forber-Pratt, 2017; Uyanik, Shogren, & Blanck, 2017) and used to guide the development of the three inventories. The inventories may be used alone or in combination to better understand the person’s current decision-making abilities, environmental demands for decision-making, and supports needed to enhance participation and autonomy over decisions. The intent is that information about needed supports is evaluated on a routine basis, particularly as changes in environmental demands (e.g., emergence of a new employment opportunity that impacts one’s finances or emergence of a new health condition that impacts medical decisions) and personal abilities emerge. In reviewing the literature, existing definitional frameworks for decision-making abilities, such as those described in Chapter 8, were synthesized, as were factors identified in the literature as influencing decision-making. Further, issues related to environmental demands, particularly the

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Social-Ecological Framework for Supported Decision-Making risk and complexity associated with decisions in specific domains including health, legal, financial, social relationships, and community living as described in Chapter 7, were summarized. The scope of the reviews was broad, focusing across populations to ensure consideration of factors that have relevance for people with intellectual disability, mental health issues, or aging-related needs. As such, literature and existing assessment practices from the fields of special education, psychology, social welfare, and gerontology informed development of the assessment. In

reviewing

the

literature,

it

was

determined

that, while there were specific personal factors, including disability-related factors, that influence supports needed for decision-making, there was significant commonality in the key issues that should guide planning teams in considering supported decision-making arrangements. The decision was made to create one tool to be used across populations, with information collected on specific needs that the person has because of unique personal circumstances. To generate items for each of the three domains of the SDMIS, items were identified from the reviews of the literature and used to craft initial versions of items. The intent of the assessment (i.e., a tool to be used across populations of people who are at risk of guardianship and may benefit from supports to participate in decision-making activities) was reviewed and ideas generated about the most effective ways to promote the full participation of people with disabilities in the process. The decision was made that the SDMIS

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Assessment and Intervention in Supported Decision-Making would be designed to be used by an interviewer with the person with a disability and their trusted supporters. The interviewer asks questions and solicits the necessary information from the respondents to answer each question, enabling the participation of people with varying levels of support needs and communication needs. Items and response stems for each of the three inventories were generated.

Refinement of the Supported Decision-Making Inventory System. Once a draft of the SDMIS items was generated, focus groups with selfadvocates with intellectual disability and developmental disabilities were conducted to refine recommended administration protocols and wording, as described by Shogren, Wehmeyer, Uyanik, & Heidrich (2017). Overall, one of the major recommendations was to ensure that items were worded in a way that clearly reflected the need to focus on the perspective of the person with a disability. Several items were reworded from an objective to a subjective view. For example, rather than saying “the person,” items were reframed to say “you” or “I.” Recommendations for the interviewer were added to clarify that the intent of this wording was to keep the person with the disability at the center of the process and solicit information from others in the life of the person, after the person’s own perspective was identified and shared. Additionally, several wording changes were identified to promote clarity in intent and focus on the assessment. Finally, because of the length of the assessment when all

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Social-Ecological Framework for Supported Decision-Making three inventories were utilized (which may be shortened after the completion of ongoing research, as described in Chapter 9, evaluating the best set of items to use to understand supports needed for decision-making), the first inventory (Supported Decision-Making Personal Factors Inventory) was broken into three subsections (Feelings, Agency, and Experiences) to provide natural opportunities for a break and grouping of items for discussion. Each of these areas of need related to assessment use and administration was incorporated into an accompanying procedural guideline document to assist interviewees and their support persons to better understand the intent of items, rating scales, and aspects of the process. In the following sections, we discuss the three inventories included in the SDMIS, and provide examples of the types of questions that are currently part of the SDMIS. It is important to note that, given the initial stage of research with the SDMIS, there may be changes as more is learned about the best ways to gather meaningful and relevant assessment data to inform supports for decision-making. The existing tool provides a starting point for researchers, practitioners, and policy makers thinking about how to engage in systematic and relevant planning for implementing supported decision-making arrangements.

Supported Decision-Making Personal Factors Inventory. The goal of the Supported Decision-Making Personal Factors Inventory is to better understand the person’s feelings about making

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Assessment and Intervention in Supported Decision-Making decisions, how agentic they feel in the process of making decisions, and their previous experiences and opportunities to engage in decision-making. We used the competencies and abilities associated with decision-making that are described in Chapter 8, which emerged from the systematic review of the decision-making competencies literature (Shogren, Wehmeyer, Lassman, & Forber-Pratt, 2017). The first section, Feelings, is intended to provide information about how a person feels (believes, perceives) about issues that influence decision-making. Table 10.1 provides examples of items that are included in this section. In the current version of the SDMIS, nine items are included that assess feelings about decision-making. The interviewer interacts with people with disabilities and their supporters to rate the degree to which each item is true for them (from 1, not at all true, to 5, very true). The second section, Agency, explores the degree to which people engage in agentic actions (i.e., goal-directed behavior; see Chapter 4) related to decision-making, and the level of support they need to do so. The interviewer supports the person with a disability and their supporters to respond to each item (excerpts in Table 10.1; eight items in total) with two responses. The first rating is the level of autonomy the person experiences in making the decision (e.g., the degree to which the person does what is in the item) on a response scale ranging from low to high. Second is a rating of the level of support the person needs to engage in the action identified in the item, also on a scale from low to high.

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Social-Ecological Framework for Supported Decision-Making Table 10.1 Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Personal Factors Inventory Part A: Feelings I feel like I am free to decide for myself how to live my life. People in my life care about me. In my life I do not get many opportunities to show how capable I am. I have been able to learn interesting new skills recently. There are not many opportunities for me to decide how to do things in my life. Part B: Agency I identify my preferences, interests, values, beliefs. I take action to achieve my goals. I identify my personal strengths and support needs. I feel empowered to take action toward my goals. Part C: Experiences 1. To what degree have you had opportunities to be involved in decisions? 2. To what degree do you feel anxious or worried about making decisions? 3. To what degree do you know the potential impacts of your decisions on others? Reprinted with permission from Shogren & Wehmeyer (2016b).

The final section on the Personal Factors Inventory, Experiences, provides information about the degree to which (on a scale from low to high) the person has experiences related to decision-making. This section includes five items, and excerpts are provided in Table 10.1. The outcome of this section will be information that may be used to devise

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Assessment and Intervention in Supported Decision-Making supports for enhancing or leveraging strengths related to current feelings, actions, and experiences with decisionmaking. For example, if a person feels empowered in making decisions but has limited experiences, environmental redesign may be undertaken to enhance opportunities and experiences. If the person, however, feels that they need more support with knowing how to make decisions, instructional practices such as those described in Chapter 8, and in later sections in this chapter, may be adopted.

Supported Decision-Making Environmental Demands Inventory. The next section of the SDMIS, the Supported Decision-Making Environmental Demands Inventory, assesses the degree to which the person is facing decisions in five key life areas identified as critical environmental domains for adults with disabilities that have the potential to impact decisions about guardianship and supported decision-making arrangements (health, legal, financial, social relationships, and community living). There are eight identical questions posed for each of these key life areas that focus on the risk and complexity of the decisions required. Chapter 7 provided an overview of these questions and examples (see Table 7.1). Interviewers solicit responses from the person with a disability and their supporters about the degree to which there are high-risk decisions needed to be made across domains and whether the person has the opportunities, supports, and accessible information available to make high-risk decisions. The next set of questions follows the same approach, assessing the degree to

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Social-Ecological Framework for Supported Decision-Making which complicated decisions need to be made in the key life area and whether opportunities, supports, and accessible information are available for them to make such decisions. The outcome of these questions is a picture of the environments within which the person is currently facing decisionmaking demands. Supports may then be targeted to these environments, ensuring that relevant environments and decisions are targeted with appropriate supports.

Decision-Making Autonomy Inventory. The third and final inventory in the SDMIS is the Decision-Making Autonomy Inventory. This section focuses on autonomy, a critical element associated with self-determination. Specifically, ratings are made according to the degree to which the person feels they have autonomy over the decision-making process and the supports needed to enhance that autonomy. This information is critical to creating supported decision-making arrangements by identifying the areas in which the person desires to have more autonomy, and the level of perceived supports needed to make that happen. It is then the responsibility of the support team to work in partnership with the person with a disability to identify the supports that enhance autonomy, considering the feelings and environments identified in the previous inventories. Table 10.2 provides excerpts of the items on this scale. There are twenty-two in total on this inventory, which were derived from the decision-making steps more fully described in Chapter 8.

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Assessment and Intervention in Supported Decision-Making Table 10.2 Excerpted items from the Supported Decision-Making Inventory System (SDMIS): Decision-Making Autonomy Inventory I understand why a decision needs to be made. I know when a decision needs to be made. I determine if there are enough options from which to choose to make the decision. I identify known consequences of each option. I identify known benefits of each option. I rank options by my preferences. I determine which option and consequence will best lead to reaching my goal. I choose one option to perform. Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2016). Supported Decision-Making Inventory System (SDMIS) [pilot version]. Lawrence, KS: Kansas University Center on Developmental Disabilities.

Applications of the Supported Decision-Making Inventory System. The development and use of the SDMIS is ongoing as described in this chapter and in Chapter 9. There is a need for ongoing research and practice examinations of the effective ways to actualize the intent of formal (e.g., legal) and informal supported decision-making arrangements. The ultimate goal of supported decision-making – to enhance the legal and human agency of people with disabilities, by shifting from deficit-based approaches such as guardianship that remove rights to strengths-based approaches that focus on supporting people with disabilities to actualize their goals, dreams, and visions for the future – must be at the center of this process.

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Social-Ecological Framework for Supported Decision-Making The SDMIS, and supported decision-making, does not assume that the goal is for people with (or without) disabilities to become independent decision-makers. This is important to remember as, for all of us, most meaningful decisions in our lives are made in consultation and partnership with others. Instead, the focus must continue to be on providing a tool that may be used to enable access to opportunities to be a full and participating member of partnerships and support networks that lead to agency in decision-making, including the opportunity to draw on other resources to make decisions. Assessment, as noted by Gooding (2015) and others, is a central part of this process, but assessment is not an end in and of itself. It is part of a broader strategy to promote dignity, autonomy, and self-determination that includes an array of supports tailored to what is learned through assessing and understanding needs for support in decisionmaking. Ongoing work is needed to explore the utility of the SDMIS in this process, and to further innovate in collecting

meaningful

information

to

inform

supported

decision-making arrangements. Additionally, ongoing work is needed, such as that described in the following sections, to devise effective interventions and support strategies that take what is learned from assessment information to build systems of supports that promote supported decision-making, agency, and self-determination outcomes.

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Assessment and Intervention in Supported Decision-Making

Using Assessment Information to Develop Interventions and Supports The SDMIS process results in information about areas in which a person may need support to maximize their involvement in the decision-making process. The next step is to identify the types, intensity, duration, and frequency of supports that may be put in place to address those areas of needed supports. This is the topic of the next section.

Intervention and Support Strategies There is a tendency on the part of people supporting people with disabilities to take an “all-or-nothing” approach when it comes to involving the person in the decision-making process. That is, if someone cannot independently perform each step in the decision-making process, someone else makes the decision for the person. And yet, there is a long and rich history in educating learners with disabilities that shows that, even if a person cannot do each step in a process, whether it is dressing or operating a computer, that person likely can be taught to perform some of the steps and, for the remaining steps, be provided supports (in the form of assistive or other forms of technology, support from another person, etc.) that enable that person to maximize their participation in the process. We will overview some major forms of supports and interventions next.

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Social-Ecological Framework for Supported Decision-Making

Decision-Making Aids Decision-making aid is a general term to describe any support to assist a person in making a decision. We save technology-related supports for the next section because of the ubiquity and potential importance of technology in decision supports. Shogren, Wehmeyer, Lassmann, and Forber-Pratt (2017) identified common decision-making aids found in the psychology, social work, and education literature. It goes without saying that the best support a person may have is another person. Supported decision-making is predicated on the identification of a trusted friend or ally to support the person, and that, in and of itself, is a notable decision-making aid. Of course, family and friends are important decisionmaking aids to everyone. The literature reviewed by Shogren and colleagues suggests, however, that peer support is an important form of decision-making support that involves another person. Peers, referring typically to same-age friends or colleagues, may have a better sense of what is appropriate and available for a person of the same age. Decision-making aids (or decision aids) often refer to the provision of detailed information to support people to make complex decisions (often in the context of shared decisionmaking). Such aids typically are associated with medical decision-making, and involve information about the health condition; the options that are available for treatment; and information about effectiveness tailored to the person’s gender, race, or ethnicity; as well as other factors. While helpful, such decision-making aids often involve uncertainty

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Assessment and Intervention in Supported Decision-Making and complex information. Using alternative formats, such as visual images and video, may assist people with disabilities. Color-coding is a way to highlight important information. Bailey, Willner, and Dymond (2011) found that people with intellectual disability are better able to provide justifications for financial decisions they made when provided with visual aids that include graphic images and colorcoded information. Interventions to promote self-advocacy, communication, and problem-solving skills also serve as decision-making aids. The Self-Determined Decision-Making Model, discussed later in the chapter, provides a systematic framework for promoting problem-solving and supporting people with intellectual disability to set and attain goals that include enhanced self-advocacy skills. Yet efforts to link people with others who may have similar decisions to make, information about how to advocate for oneself in systems such as legal or medical systems, and opportunities to engage in efforts to solve problems on an ongoing basis also are important decision-making aids.

Technology Supports Undoubtedly, technology supports play a major role in the involvement of people with disabilities in the decision-making process, as they do in virtually all aspects of the lives of people with or without disabilities. Because the role of technology is ubiquitous in everyday life, it is not feasible to cover all of the ways in which technology supports decision-

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Social-Ecological Framework for Supported Decision-Making making. To illustrate what we mean by the ubiquity of technology supports in the lives of people with disabilities and their potential for decision-making supports, consider some of the first actions many people take when they need to make a decision: they search for information and decision options online using a web browser and a search engine. Yet what if you don’t read well? The list of URLs and the brief descriptions provided as an output of that search may not be helpful – that’s assuming you are able to type in the search terms that will be best in the first place. There are many elements of that simple process of searching for information that are not cognitively accessible to people with intellectual disability. Technology provides solutions to these barriers. Davies, Stock, and Wehmeyer (2001) showed that a web browser called WebTrek, which was designed with features to make it more usable by people with intellectual disability, significantly improved their self-directed use of the Internet. Some of those features included speech-to-text for input and textto-speech for output; audio-prompting that allowed users to receive audio information about the purpose of a browser button (rather than text information) when the cursor was held over the button; reduced screen clutter, in which only basic features of the browser are visible (though others may be made visible in a customizable manner); the use of graphics in which the browser captures images and photos as well as the text URL in the search outcome; and error minimization features. All of these enable people with

218

Assessment and Intervention in Supported Decision-Making intellectual impairments to engage in the collection of information to inform their decisions. Another form of technology, computer/video games and simulations, has promise in providing decision-making supports. Standen, Rees, and Brown (2009) found that, when adults with intellectual disability engaged with computer software or a simple video game that used scenarios pertaining to making a decision, their capacity to generate options for a real-life decision improved. Stock, Davies, and Wehmeyer (2009) evaluated a computer-based animation/simulation program in which avatars (animated figures that are life-like) go through typical community situations that result in problems and create decisionmaking opportunities. Stock and colleagues found that participants were able to improve problem-solving skills and more readily make decisions after having used the simulation program. Of course, assistive technologies are important as decision-making supports. People who have difficulty speaking may have difficulty communicating interests, preferences, fears, and hopes without the use of an augmentative communication device. Finally, video and audio prompting systems that provide step-by-step instructions pertaining to tasks provide supports for decisions that may be routine. Davies, Stock, and Wehmeyer (2003) showed that such a device on a handheld computer (or smartphone today) could be used to support workers who had to make decisions about the next step in a sequence when there are multiple

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Social-Ecological Framework for Supported Decision-Making options. Using pictures, audio, and color-coding, participants were able to make even novel decisions.

ESCAPE-DD In Chapter 8, we discussed the Pathways Model forwarded by Khemka and Hickson (2008). The model was derived in the process of developing an intervention (ESCAPE-DD) that teaches problem-solving and decision-making processes to youths and adults with intellectual disability and developmental disabilities to enable them to avoid interpersonal interactions that may result in negative outcomes. The ESCAPE-DD curriculum involves twelve small-group instructional lessons and six support-group sessions (Khemka & Hickson, 2017). The curriculum addresses cognitive, motivational, and emotional processes in decisionmaking. Units and lessons focus on two general themes: •

Distinguishing abusive from healthy relationships and the importance of three safety goals: (1) Be independent, (2) Be safe now, and (3) Be safe later.

•

Modeling and providing guided practice with a four-step decision-making strategy for handling abuse situations: (1) PROBLEM: Is there a problem?; (2) CHOICES? What are the possible choices?; (3) WHAT IF: What could happen if? (check each choice with the three goals); and (4) DECISION: What should _____ do in this situation?

The ESCAPE-DD process shows strong evidence of its positive impact on decision-making skills of people with

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Assessment and Intervention in Supported Decision-Making intellectual disability in high-risk social situations (Khemka & Hickson, 2017).

Self-Determined Decision-Making Model A family of interventions that promote self-determined learning and self-regulated problem-solving to set and attain goals has been expanded to include a model to facilitate self-regulated problem-solving to set and attain goals related to decision-making. This model is called the Self-Determined Decision-Making Model (SDDMM). The SDDMM was constructed based on a series of related models that have been validated as effective in promoting active self-engagement in the goal-setting and goal-attainment process; each is described briefly before we describe the SDDMM. The initial model was the Self-Determined Learning Model of Instruction (SDLMI). The SDLMI is a multicomponent intervention designed to enable school teachers to teach students to self-regulate problem-solving to set a goal, create an action plan to achieve that goal, and self-monitor and selfevaluate progress toward the goal, revising the action plan or goal as needed so as to attain the goal. Implementation of this model consists of a three-phase instructional process. Each instructional phase presents a problem to be solved by the student. The student solves each problem by answering a series of four questions per phase that students learn, modify to make their own, and apply to reach self-set goals. Each question is linked to a set of teacher objectives, and each

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Social-Ecological Framework for Supported Decision-Making instructional phase includes a list of educational supports teachers may use to teach or support students to self-direct learning. The student questions are constructed to direct the student through a problem-solving sequence in each instructional phase. The four questions differ in each phase but represent identical steps in the problem-solving sequence: (1) identify the problem; (2) identify potential solutions to the problem; (3) identify barriers to solving the problem; and (4) identify consequences of each solution. These are the fundamental steps in any problem-solving process, and they form the means–end problem-solving sequence represented by the student questions in each phase and enable the student to solve the problem posed in each instructional phase (What is my goal? What is my plan? What have I learned?). There is strong evidence pertaining to the positive impact of the SDLMI on student self-determination and school/transition-related outcomes. Wehmeyer, Shogren, and colleagues (2012) conducted a randomized trial control group study of the effect of interventions to promote selfdetermination of high school students with disabilities. Youths in the treatment group received instruction using a variety of instructional methods to promote self-determination and student involvement in educational planning meetings over three years, while youths in the control group did not. Every student in the treatment group received instruction using the SDLMI.

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Assessment and Intervention in Supported Decision-Making Wehmeyer and colleagues found that youths with disabilities who participated in interventions to promote selfdetermination showed significantly more positive patterns of growth in their self-determination scores than did youths not exposed to the interventions, providing causal evidence that efforts to promote self-determination result in enhanced self-determination. Lee and colleagues (2008) used a pre/post-test randomized trial control group design to explore the relationship between the SDLMI and goal attainment of students with disabilities in general education settings. They randomly assigned forty-two students with learning disabilities, attention deficit hyperactivity disorder (ADHD), or emotional and behavioral disorders to a treatment group or a control (no intervention) group and found that students in the treatment group who received instruction with the SDLMI were more likely to achieve goals linked to the general education curriculum. In another study examining the impact of the SDLMI, Shogren, Palmer, Wehmeyer, Williams-Diehm, and Little (2012) report findings from a cluster or group randomized trial control group study examining the impact of the SDLMI on student academic and transition goal attainment and access to the general education curriculum for students with intellectual disability or learning disabilities. Students in the treatment group showed significantly higher levels of goal attainment and access than did their peers in the control group. In a follow-up study of participants in the Wehmeyer et al. (2012) study, in which students in the treatment group

223

Social-Ecological Framework for Supported Decision-Making received instruction to promote self-determination and student involvement, Shogren, Wehmeyer, Palmer, Rifenbark, and Little (2015b) examined adult outcomes one and two years after leaving school for young adults who had or had not received instruction to promote self-determination. The study measured employment, community access, financial independence, independent living, and life satisfaction outcomes. Results indicate that self-determination status at the end of high school predicts significantly more positive employment and community living outcomes. Finally, Shogren, Plotner, and colleagues (2014) found that teachers who implement this strategy raise their expectations of students with intellectual disability as a function of the outcomes. A second member of the self-determined goal-setting intervention family is the Self-Determined Career Design Model (SDCDM) (Wehmeyer, Lattimore et al., 2003). The SDCDM is designed to enable vocational counselors and employment support professionals to support youths, young adults, and adults with disabilities to self-regulate problem-solving to set and attain career, life design, and employment goals. The process for the SDCDM is identical to that described for the SDLMI, with the exception that the questions focus on career, life design, and employmentrelated outcomes. Table 10.3 provides a side-by-side comparison between the questions for the SDLMI and those of the SDCDM. Research using the SDCDM reveals that participants who receive supports from rehabilitation professionals using the SDCDM show significantly enhanced

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Table 10.3 Self-regulated problem-solving questions from the Self-Determined Learning Model of Instruction (SDLMI) and the Self-Determined Career Design Model (SDCDM) SDLMI

SDCDM

Phase 1 Questions

Phase 1 Questions

Question 1: What do I want to learn?

Question 1: What career and job do I want?

Question 2: What do I know about it now?

Question 2: What do I know about it now?

Question 3: What must change for me to learn what I

Question 3: What must change for me to get the job and

don’t know?

career I want?

Question 4: What can I do to make this happen?

Question 4: What can I do to make this happen?

Phase 2 Questions

Phase 2 Questions

Question 1: What can I do to learn what I don’t already

Question 1: What actions can I take to reach my career or

know?

employment goal?

Question 2: What could keep me from taking action?

Question 2: What could keep me from taking action?

Question 3: What can I do to remove these barriers?

Question 3: What can I do to remove these barriers?

Question 4: When will I take action?

Question 4: When will I take action?

Phase 3 Questions

Phase 3 Questions

Question 1: What actions have I taken?

Question 1: What actions have I taken?

Question 2: What barriers have been removed?

Question 2: What barriers have been removed?

Question 3: What has changed about what I don’t know? Question 3: What has changed to enable me to get the job Question 4: Do I know what I want to know?

and career I want? Question 4: Have I achieved what I want to achieve?

Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2017). Self-determination interventions. Lawrence, KS: Kansas University Center on Developmental Disabilities.

Social-Ecological Framework for Supported Decision-Making autonomous functioning as a result of this involvement (Shogren et al., 2016). Drawing from experience with the SDLMI and SDCDM, researchers at the University of Kansas have developed and are evaluating the efficacy of the Self-Determined Decision-Making Model (SDDMM). As is the case with the previous versions of these self-regulated goal-setting interventions, the SDDMM is intended to enable support persons, family members, and trusted friends to enable people with disabilities to self-regulate problem-solving to set and attain goals related to involvement in the decision-making process. Almost every decision has a problem to solve. As we mentioned previously in this text, in fact, the first step in the decision-making process is a problem-solving process that identifies the options from which a person may choose. Further, determining the risks, consequences, and probabilities associated with each such option involves solving multiple problems. The SDDMM provides a process whereby trusted friends, allies, family members, support professionals, and others identified by a person with a disability enable that person to set goals to solve problems associated with the decision-making process. People with disabilities become, in essence, their own supports in the supported decision-making process. The SDDMM process is identical to that of the SDLMI and the SDCDM. There are three phases, each with a problem for the person to solve. The person is guided to solve the

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Assessment and Intervention in Supported Decision-Making Table 10.4 Questions, objectives, and decision supports for phase 1 of the Self-Determined Decision-Making Model (SDDMM) Question 1: What decision do I need to make? Objectives: • •

•

•

Awareness training

•

Self-assess preferences,

Enable person to identify decisions

interests, and abilities

that need to be made.

pertaining to the deci-

Enable person to identify prefer-

sion area

ences/interests/beliefs/values related •

Problem-solving

to decisions that need to be made.

instruction

Enable person to identify strengths •

Choice-making

and needs related to decisions that

instruction

need to be made. •

Decision supports

Enable and support person to prior-

•

Goal-setting instruction

itize decisions that need to be made and select most important decision to make. Question 2: What do I know about it now? Objectives: •

Enable person to identify his or her current status in relation to prioritized decision to make.

•

Enable person to identify knowledge/ skills/needs of decision to make.

•

Assist person to gather information about opportunities and barriers in their environments pertaining to prioritized decision to make.

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Social-Ecological Framework for Supported Decision-Making Table 10.4 (cont.) Question 3: What must change for me to make a decision? Objectives: •

Support person to prioritize needs related to decision to make.

•

Enable person to choose primary need and decide if action needs to be focused toward capacity building, modifying the environment, or both.

Question 4: What can I do to make this happen? Objectives: •

Teach/support person to state goals/ objectives related to prioritized decision to make.

Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2017). Self-determination interventions. Lawrence, KS: Kansas University Center on Developmental Disabilities.

problem in each phase by answering a series of four questions (per phase). There are objectives for support persons to use to assist the person in answering each question, and a set of decision support strategies that may assist in supporting the person to answer questions. Tables 10.4, 10.5, and 10.6 provide the questions, support objectives, and strategies for each of the three phases in the SDDMM. The first time a decision support person goes through the SDDMM with a person with intellectual or developmental disabilities, they work together to reword the questions in

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Assessment and Intervention in Supported Decision-Making Table 10.5 Questions, objectives, and decision supports for phase 2 of the Self-Determined Decision-Making Model (SDDMM) Question 1: What actions can I take to reach my decision-related goal?

Decision supports •

Objectives: •

Enable person to identify alterna-

nity resource/support •

Assist person to gather information

•

Enable person to select best action

•

taking action? Objectives: •

Support person to identify barriers to implementing action alternatives.

•

Self-instruction training

alternatives. Question 2: What could keep me from

Self-scheduling training

on consequences of alternatives. •

Problem-solving instruction

tives to achieve decision-related goal. •

Exploration of commu-

•

Picture-cue training

•

Self-advocacy instruction

•

Assertiveness training

•

Self-monitoring instruction

Support person to identify actions to remove barriers.

Question 3: What can I do to remove these barriers? Objectives: •

Assist person in identifying appropriate decision supports to implement selected action alternative.

•

Teach person knowledge/skills needed to implement selected supports.

Question 4: When will I take action? Objectives: •

Enable person to determine schedule for action plan to remove barriers and implement supports.

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Social-Ecological Framework for Supported Decision-Making Table 10.5 (cont.) •

Support and enable person to implement the action plan.

•

Enable person to self-monitor their progress.

Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2017). Self-determination interventions. Lawrence, KS: Kansas University Center on Developmental Disabilities.

Table 10.6 Questions, objectives, and decision supports for phase 3 of the Self-Determined Decision-Making Model (SDDMM) Question 1: What actions have I taken?

Decision supports

Objectives:

•

•

Enable person to self-evaluate and articulate progress toward goal.

Question 2: What barriers have been removed? Objectives: •

Assist person to compare progress with their desired outcomes.

Question 3: What has changed to enable me to make the decision that needs to be made? Objectives: •

Support person to reevaluate goal if progress is insufficient.

•

Assist person to decide if goal remains the same or changes.

•

Collaborate with person to identify if the action plan is adequate or inadequate given the revised or retained goal.

230

Self-evaluation instruction

Assessment and Intervention in Supported Decision-Making Table 10.6 (cont.) •

Assist person to change action plan if necessary.

Question 4: Have I achieved what I want to achieve? Objectives: •

Enable person to decide if progress is adequate, inadequate, or if goal has been achieved.

•

If this goal has been achieved, enable person to decide if a different goal is needed to make the decision that needs to be made.

Reprinted with permission from: Shogren, K. A. & Wehmeyer, M. L. (2017). Self-determination interventions. Lawrence, KS: Kansas University Center on Developmental Disabilities.

ways that do not change the meaning but become more understandable to the person and, in essence, become their own customized set of questions.

Conclusion The process of supported decision-making provides an opportunity for people with disabilities to experience greater autonomy, self-governance, and agency in their lives. But the first word in supported decision-making is supported. People need supports that are individually determined, personalized, and enable them to learn skills that lead to greater involvement in the decision-making process and to

231

Social-Ecological Framework for Supported Decision-Making identify supports to maximize that participation. That process typically needs to begin with assessment of the person’s decision-making abilities, their beliefs and feelings about decision-making, and their decision-making autonomy and opportunities. That is the goal of the SDMIS: to provide people with disabilities and their trusted friends, supporters, and allies with information to create such supports. Once areas of support needs are identified, people with disabilities and their supporters need to have some means to identify supports linked to those areas of need. Processes such as the ESCAPE-DD and the SDDMM provide empowering frameworks within which to support people to learn about decision-making and problem-solving skills, and to set and attain personally meaningful goals related to decisionmaking. Supports such as trusted friends, technology, and self-advocacy further ensure that people who need supports to be involved in the decision-making process are provided with those supports in ways that maximize their participation and autonomy.

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11 Building Systems of Supports for Supported Decision-Making

A

s discussed in previous chapters, supported decision-making is an alternative paradigm to traditional full guardianship (Blanck & Martinis,

2015). However, as also described throughout this book, in practice, supported decision-making may be applied in multiple ways and settings, throughout the life course, to enhance self-determination and provide access to improved life outcomes across life domains (Shogren et al., 2015b; Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997). This chapter considers ways in which supported decisionmaking, and various ways of applying supported decisionmaking, are implemented in the educational, vocational, rehabilitation, health care, and legal spheres to improve individual self-determination and life outcomes (Blanck & Martinis, in press; Uyanik, Shogren, & Blanck, 2017). It also

233

Social-Ecological Framework for Supported Decision-Making sets forth a conceptual model that uses supported decisionmaking to increase collaboration among people with disabilities and the professionals and organizations who support them, to further increase supported decision-making across environments.

Supported Decision-Making and Self-Determination The previous chapters explain that people who exercise more self-determination tend to enjoy better life outcomes in employment, daily independence, and quality of life (Lachapelle et al., 2005; Shogren et al., 2015b; Wehmeyer &

Palmer,

2003;

Wehmeyer

&

Schwartz,

1997).

Unfortunately, historically, many people with intellectual disability and developmental disabilities have not had access to the benefits of programs aimed at enhancing their self-determination (Blanck, 1992a, 1992b; Wehmeyer, Kelchner, & Richards, 1996). This trend is the result of many factors, prominent among them is that people with intellectual disability and developmental disabilities lived and worked under restrictive arrangements such as in institutional settings and under guardianship, and worked in sheltered workshops (Blanck, 1992b; Blanck & Martinis, 2015). These settings provide fewer opportunities for individuals to make choices and exercise self-determination (Stancliffe, 2001). Supported decision-making was proposed and developed to “overcome the barriers that prevented people

234

Building Systems of Supports for Supported Decision-Making with intellectual disabilities from being self-determining citizens” (Browning, Bigby, & Douglas, 2014, p. 35). In supported decision-making arrangements, people work with trusted friends, family members, and professionals who help them understand the situations and choices they face. Using that support, they make their own decisions and direct their own lives to the maximum of their capabilities (Blanck & Martinis, 2015). Significantly, in supported decision-making arrangements, the person is the final decision-maker, as opposed to a third party in guardianship and in other substitute decision-making arrangements (Kohn, Blumenthal, & Campbell, 2013). The main thesis of this book is that supported decisionmaking, when implemented well, increases the selfdetermination of people with disabilities across the life course (Blanck & Martinis, 2015). Earlier chapters contrast supported decision-making with prior substitute decisionmaking arrangements as reflected in recent court decisions and state legislative actions (Ross and Ross v. Hatch, 2013; Tex. Est. Code Ann. §1002.031, §1101.101 (2015)). Increasingly, however, supported decision-making is also used in other critical life spheres and support programs across the life course. This chapter examines the ways in which supported decision-making systems are used in educational, vocational, rehabilitation, health care, and legal areas to maximize the independence and self-determination of people with intellectual disability and developmental disabilities. It presents a new Culture of Coordinated Support Model,

235

Social-Ecological Framework for Supported Decision-Making which employs supported decision-making principles to enhance collaboration among people with intellectual disability and developmental disabilities and the organizations and programs that offer them support.

Supported Decision-Making and Special Education Students with disabilities who

exercise greater self-

determination are more likely to successfully transition to adulthood, with associated advances in education, employment, and independent living outcomes (Shogren et al., 2015b; Wehmeyer & Schwartz, 1997). Promoting selfdetermination is therefore considered an educational best practice (Wehmeyer & Gragoudas, 2004), particularly in the context of planning for the transition to adulthood (Test, Fowler et al., 2009; Test, Mazzotti et al., 2009). Students with disabilities are eligible for special education supports and services under the Individuals with Disabilities Education Act (IDEA, 20 U.S.C. § 1400, et seq., 2004). Under IDEA, schools must provide eligible students with special education services and supports to meet their individual learning needs and prepare them for further education, employment, and independent living (IDEA, § 1400(D)(1) (A)). Once students turn sixteen, schools have an additional obligation to provide “transition services,” which include instruction and services to help them gain employment and independent and daily living skills, as well as take part in community life and access adult services (IDEA, § 1401(34)).

236

Building Systems of Supports for Supported Decision-Making Given IDEA’s emphasis on transition to valued adult outcomes such as community living and participation, schools must focus on helping students identify and exercise the skills they need to learn, live, and work self-reliantly, such as daily life goal-setting, problem-solving and decision-making, and self-advocacy (Wehmeyer & Gragoudas, 2004). Nevertheless, schools and school personnel perhaps are the most frequent source of recommendations for parents to seek guardianship over students with disabilities (Jameson et al., 2015). Of course, school personnel should use supported decision-making to meet their responsibilities to provide independent living supports, and help students avoid overbroad and undue guardianship. Teaching and implementing supported decision-making enable schools to meet their obligation to provide students with the supports and services they need to be independent adults to the maximum extent possible, which is required by the IDEA, and learn problemsolving, decision-making, and self-advocacy (Wehmeyer & Gragoudas, 2004).

Educational Models for Supported Decision-Making One example of such an approach to supported decisionmaking in the educational context is in the District of Columbia Public Schools (DCPS) in Washington, DC. DCPS has implemented the first educational system-wide policy that focuses on empowering students and their families to use supported decision-making arrangements to avoid unnecessary guardianships. Prior to age eighteen,

237

Social-Ecological Framework for Supported Decision-Making DCPS provides students supports and services designed to better prepare them to make decisions about their future. These supports include: •

Engaging students in problem-solving activities to encourage them to think critically about their decisions;

•

Counselling students on ways to make the best decisions and to evaluate the options before them; and

•

Encouraging participation in activities aimed at developing decision-making skills and preparation for an active role in their future (DCPS, n.d., p. 1). DCPS requires that students be involved in the sup-

ported decision-making process by ninth grade, at the beginning of high school. But, before then, school personnel are to ensure that students are actively involved in their decisionmaking processes. The aim is to ensure that students are aware of their support networks and their abilities to make their own decisions and, when appropriate, to request support from someone they trust to make decisions. As a part of this learning process, students are encouraged to discuss decisions with their parents. The goal is that students are learning that they have the right to make decisions that best meet their needs in the educational setting, with appropriate support and guidance from parents and others in the supported decision-making process (DCPS, n.d.). DCPS programs teach and empower students to appoint individuals they trust as members of their supported decision-making network. The student is to identify these

238

Building Systems of Supports for Supported Decision-Making individuals and seek their guidance on educational matters, as may be needed (DCPS, n.d.). When they turn age eighteen, DCPS students are given the option of entering into a supported decision-making agreement, which names those they trust to support them in making the best educational decisions possible (DCPS, n.d.). The supported decisionmaking agreement enables students to proactively authorize network members to access their educational records and information and attend Individualized Education Program (IEP) meetings with them. The student retains the power to appoint or dismiss supported decision-making network members, make final decisions him or herself, and terminate the agreement (DCPS, n.d.).

Supported Decision-Making and Individualized Education Programs Supported decision-making can be used as a form of support in the context of special education to enable students to exercise self-determination throughout their education. Special education supports and services are described in the student’s IEP. The program must contain, among other elements: •

Measurable goals and objectives, including “academic and functional goals” designed to help the student make progress and meet the child’s other educational needs that result from the disability; and

•

Educational and other services to help the student “advance appropriately toward attaining those goals” (IDEA, § 1414).

239

Social-Ecological Framework for Supported Decision-Making When students’ decision-making skills limit their educational progress, their IEPs should focus on helping them develop skills and access opportunities in those areas, including implementing supported decision-making as appropriate. These specific IEP goals help students to increase self-determination and improve educational performance (Wehmeyer et al., 2013). As the DCPS model shows, schools may use the IEP process to help students develop and practice supported decision-making to build independent and daily living skills for decision-making and problemsolving (Wehmeyer & Gragoudas, 2004), which are also necessary to avoid overbroad and undue guardianship (e.g., Martinis, 2014). Students and their schools also may incorporate supported decision-making into the IEP process by using a student-led IEP model. In this process, students lead their IEP teams in a manner appropriate to their age. Younger students may begin meetings by introducing themselves and talking about their favorite subjects. As they age and progress, and gain experience and confidence, students may chair the meetings and collaboratively help develop their IEP (see, I’m Determined, n.d.). Student-led IEPs provide students the chance to practice decision-making and supported decision-making in an educational environment (Martinis, 2015c). Research supports the benefits of such processes. One study shows that students who lead their IEPs gain increased self-confidence and self-advocacy skills, interact more positively with adults,

240

Building Systems of Supports for Supported Decision-Making assume more responsibility for themselves, and show greater awareness of their support needs and the resources available to them to improve their decision-making (Mason et al., 2004).

Supported Decision-Making and Vocational Rehabilitation People with disabilities may also use supported decisionmaking in their vocational rehabilitation (VR) programs. The VR program authorizes and funds statewide programs designed to develop and provide VR services for people with disabilities so that they may prepare for and engage in employment (Rehabilitation Act, 2014, § 720(a)(2)). To be eligible for VR, people must have a disability that affects their ability to work, must want to work, and must require VR services to engage in employment (Rehabilitation Act, 2014, § 722 (a)(1)). Once eligible, people partner with their state VR agencies to create and implement an Individualized Plan for Employment (IPE). The IPE establishes the person’s employment goals, the job he or she seeks, and the services and supports needed to achieve the goals (Rehabilitation Act, 2014, § 722 (b)(4)). There are myriad VR support programs, such as vocational assessments, job counseling, search and retention services, medical and mental health care supports, and the provision of assistive technology (Rehabilitation Act, 2014, § 723 (a)(1)–(20)). One central VR support provided is for development of self-determination in vocational and other

241

Social-Ecological Framework for Supported Decision-Making training services, such as provision of personal and vocational adjustment services (Rehabilitation Act, 2014, § 723 (a)(5)) (emphasis added). When a person’s ability to work is affected by a lack of instruction and opportunities to engage in self-regulated problem-solving and decision-making, VR must provide the personal adjustment training needed to acquire these skills. This may include training to help the person use supported decision-making to learn to engage in decisionmaking processes (Martinis, 2015a). From this training, the person should gain the skills needed to prepare for and achieve employment, along with related daily living skills (Kapp, 1999). These services serve to empower the individual to avoid overbroad and undue guardianship (Martinis, 2015a). Thus, like in the educational context, supported decision-making is at the heart of the IPE process. The person’s IPE is to be implemented to afford “individuals the opportunity to exercise informed choice” (Rehabilitation Act, §722 (b)(3)(B)). In this context, informed choice means: Informing each applicant and recipient of services . . . through appropriate modes of communication, about the availability of and opportunities to exercise informed choice, including the availability of support services for individuals with cognitive or other disabilities who require assistance in exercising informed choice throughout the vocational rehabilitation process . . . [and] Assisting applicants and recipients of services in exercising informed

242

Building Systems of Supports for Supported Decision-Making choice in decisions related to the provision of assessment services. (34 CFR § 361.52)

Once again, the “informed choice” process tracks supported decision-making’s core principles: people collaborate with professionals and others who use appropriate means of communication to help them understand their choices so that they may experience agency over life decisions (e.g., Blanck & Martinis, 2015). Because supported decision-making and informed choice processes ensure the person is the final decision-maker, he or she is able to exercise selfdetermination in the VR process. This process encourages and empowers the person to enjoy the benefits from increased agency that are expressed throughout this book: interdependence and self-determination, employment, and community integration (Blanck & Martinis, 2015).

Supported Decision-Making and Health Care People with disabilities may use supported decision-making principles in the health care provision process. Yet one recent study finds doctors and health care professionals often may prompt people to seek guardianship for their loved ones (Jameson et al., 2015). As a result, people subjected to overbroad and undue guardianship may suffer significant negative impacts on their health and wellness (Wright, 2010). In contrast, using supported decisionmaking for health care decision-making, and in effect as an alternative to full guardianship in many circumstances, may

243

Social-Ecological Framework for Supported Decision-Making act to improve overall health and wellness. This potential is important because, as the US Surgeon General finds, people with disabilities often evidence more medical conditions and diagnoses than people without disabilities, and are more likely to be misdiagnosed, and over- or undertreated (U.S. Surgeon General, 2005). For these reasons, supported decision-making also should play a key role in the Medicaid Home and Community Based Services (HCBS) Person Centered Planning (PCP) process. HCBS programs help people identify and receive the supports and services they need to live in their communities, as opposed to living in institutions. In 2013, almost half (41 percent) of the three million people receiving HCBS waiver services

had

intellectual

disability

and

developmental

disabilities. In addition, almost three-quarters (71 percent) of HCBS spending in 2013 was for people with intellectual disability and developmental disabilities (Ng et al., 2016). Under federal law, people receiving HCBS must take part in and, to the maximum extent possible, lead a PCP process to determine the supports and services they will receive. PCPs include individual goals and preferences, including community participation, employment, income and savings, health care and wellness, and education (Centers for Medicare and Medicaid Services, 2014). The PCP process: •

Is informed by discussions with family members and others who are important to them about key aspects of daily routines and rituals;

244

Building Systems of Supports for Supported Decision-Making •

Focuses on individual strengths and interests;

•

Outlines individual reactions to communication styles;

•

Identifies individual favorite experiences during the day and experiences that contribute to a bad day;

•

Proposes experiences the person may enjoy as community engagement; and

•

Describes factors and characteristics individuals find isolating and stigmatizing (Centers for Medicare and Medicaid Services, 2016, p. 2).

Thus the person receiving HCBS creates his or her own plan with assistance from a care manager or facilitator and from people important to him or her. As a result, while the person’s preferences and interests are to be the primary source for his or her plan, that plan should be informed by family members, caregivers, and others that the individual identifies as playing an important role in his or her life (Centers for Medicare and Medicaid Services, 2016). PCP, like the “informed choice” process in VR and the student-led IEP in special education, follows the core tenets of supported decision-making. In each system, people partner with those they trust to understand their needs and identify the supports and services they need and want to achieve their goals and objectives. In so doing, the PCP supported decision-making process empowers individual self-determination and the achievement of personally defined outcomes and delivery of services that reflect personal preferences and choices, which contribute to health,

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Social-Ecological Framework for Supported Decision-Making wellness, and welfare (Centers for Medicare and Medicaid Services, 2014).

Supported Decision-Making and Legal Representation Supported decision-making enables people with disabilities to take meaningful part in and direct their legal preferences and representation. Attorneys must provide competent representation to their clients. When attorneys represent people with “diminished capacity,” which may include people with disabilities, the Model Rules of Professional Conduct by the American Bar Association (ABA) require them to use a supported decision-making process to ensure that their clients direct their cases to the maximum extent possible: When a client’s capacity to make adequately considered decisions in connection with a representation is diminished, whether because of minority, mental impairment or for some other reason, the lawyer shall, as far as reasonably possible, maintain a normal client–lawyer relationship with the client. (ABA, 2017, Rule 1.14(a))

The

ABA

describes

ways

to

“maintain

a

normal

client–lawyer relationship” in the comments to Rule 1.14(a): [1] The normal client–lawyer relationship is based on the assumption that the client, when properly advised and assisted, is capable of making decisions about important matters. . . . [A] client with diminished capacity often has

246

Building Systems of Supports for Supported Decision-Making the ability to understand, deliberate upon, and reach conclusions about matters affecting the client’s own well-being. . . . [3] The client may wish to have family members or other persons participate in discussions with the lawyer. When necessary to assist in the representation, the presence of such persons generally does not affect the applicability of the attorney-client evidentiary privilege. Nevertheless, the lawyer must keep the client’s interests foremost and [except when the client has a substitute decision-maker] must look to the client, and not family members, to make decisions on the client’s behalf. (ABA, 2017, Comments to Rule 1.14)

Thus the typical client–lawyer relationship is predicated on the principles of supported decision-making. As with supported decision-making arrangements generally, it is assumed that the person, whether or not the individual has “diminished capacity,” is capable of making his or her own decisions. Attorneys, like educational, vocational rehabilitation, and health care personnel, are charged to advise the person so that he or she can make decisions. The person also may seek support from family members and other trusted persons to help make decisions, with the person him- or herself as final decision-maker.

Supported Decision-Making and State Support Systems: Culture of Coordinated Support Model The Culture of Coordinated Support Model uses supported decision-making as the overriding principle among people,

247

Social-Ecological Framework for Supported Decision-Making state agencies, and their service providers to increase selfdetermination and the efficacy of service delivery (Martinis & Gustin, 2017a). The model posits that agencies and providers often operate in silos, that is, they focus only on individual services and in some cases do not know what other services providers may add (Gustin & Martinis, 2016). This typically fragmented system of state services, as well as those within schools and adult service programs, often results in people receiving less than optimal, duplicative, and contradictory support, wasting agency time, effort, and money (Katsiyannis, deFur, & Conderman, 1998). Moreover, owing to a lack of communication and coordination, agencies may unknowingly operate at cross-purposes – for example, providing conflicting advice (Gustin & Martinis, 2016).

Consequently, people may receive poor

and/or inefficient services and supports (Martinis & Gustin, 2017d). This predicament contributes to the view that people with disabilities need guardians to make decisions for them (Blanck & Martinis, 2015). In the Culture of Coordinated Support Model, people, professionals, and agencies collaborate to create and implement unified, cross-program goals, objectives, and supports (e.g., Gustin & Martinis, 2016; Martinis & Gustin, 2017b, 2017c, 2017d). For example, special education programs, vocational rehabilitation agencies, and Medicaid providers are required to provide unified supports addressing education, employment, and independent living (IDEA, § 1401(34) (Requirements for Special Education Transition Planning);

248

Building Systems of Supports for Supported Decision-Making Rehabilitation Act, 2014, § 723 (a)(1)–(20) (required VR supports); Centers for Medicare and Medicaid Services, 2014 (required PCP element)). In a nonintegrated system, even when agencies are supporting the same person, each will develop its own plan, without consulting the others, with separate educational, employment, and independent living goals and supports. As a result, scarce resources are used on duplicative and possibly contradictory efforts (Martinis & Gustin, 2017d). Using the Culture of Coordinated Support Model, state agencies work with the person and each other to develop a joint vision of success, with shared goals based on the person’s abilities, needs, and preferences (Gustin & Martinis, 2016). The person and agencies agree on a division of responsibilities based on each agency’s strengths and specialties. Consequently, supports are provided by the best situated agency, resulting in the person receiving enhanced person-centered supports (Martinis & Gustin, 2017b, 2017c, 2017d). Cross-agency (and program) use of supported decisionmaking is central to the Culture of Coordinated Support Model (Gustin & Martinis, 2016). This is because supported decision-making processes already permeate the service system for people with intellectual disability and developmental disabilities. Accordingly, when people, professionals, and agencies commit to the collaborative use of supported decision-making as the primary means of implementing their support systems and plans, they create a common means to

249

Social-Ecological Framework for Supported Decision-Making develop consistent planning and implementation of programs across settings (Martinis & Gustin, 2017b). Thus in the Culture of Coordinated Support Model, partner agencies use supported decision-making to identify: •

The person’s goals in life spheres (education, employment, financial, medical, independent living, others);

•

The services and supports the person needs to achieve those goals;

•

The agencies and providers with expertise and authority to provide supports the person needs;

•

The specific supports to be provided by each agency; and

•

The realistic time frame for doing so (Gustin & Martinis, 2016).

Furthermore, because people, providers, and agencies in the Culture of Coordinated Support Model collaborate and coordinate efforts, plans and supports are more consistent and complementary, rather than fragmented. Professionals and agencies therefore are more likely to work with the person and one another to identify and implement effective supports for the person, instead of the default recommendation for full guardianship to purportedly solve “problem cases” (Martinis & Gustin, 2017a, p. 10). Additionally, people with disabilities will have more opportunities to use supported decisionmaking to understand and make their own decisions regarding their supports and services, further increasing selfdetermination and providing access to the recognized benefits of enhanced self-determination (Blanck & Martinis, 2015).

250

Building Systems of Supports for Supported Decision-Making

Supported Decision-Making and the Culture of Coordinated Support Model: Case Study of Vermont In 2016, Vermont became the first state to make a systemwide commitment to supported decision-making and the Culture of Coordinated Support Model (Gustin & Martinis, 2016) (see also Chapter 6). Vermont convened a Supported Decision-Making Task Force comprised of people with disabilities, their families, professionals, and providers, including representatives of the medical, legal, educational, employment, and advocacy systems (Martinis & Gustin, 2017b). The task force’s goal is to decrease overbroad and undue guardianship by using supported decision-making to create a statewide and systems-wide culture of collaboration (Gustin & Martinis, 2016, p. 1). To date, Vermont has launched several Culture of Coordinated Support Model pilot projects, including: •

Collaboration between a developmental disabilities provider agency, the Public Guardian, and attorneys to identify people currently under guardianship who could direct their own lives with appropriate support, help them plan for and implement needed supports, and then request that the court remove their guardianships;

•

Schools, VR agencies, self-advocacy organization, and provider agencies working together to identify young adults at risk of guardianship and helping them plan for and implement services and supports they want and need to direct their own lives;

251

Social-Ecological Framework for Supported Decision-Making •

State evaluators coordinating with the Public Guardian and state aging and disability agencies to develop guidelines that focus on people’s functional ability to make decisions, with or without support; and

•

State provider agencies developing policies and practices that allow individuals to partner with supporters to apply for and review services they desire (Martinis & Gustin, 2017b, p. 43).

Conclusion The previous chapters discussed the positive potential impact that supported decision-making can have on the lives of people with disabilities. This chapter explains that the core elements of supported decision-making often are required and already used across an array of state and local service delivery systems for people with disabilities. The case examples in Vermont and the District of Columbia show that supported decision-making can be implemented across systems over the life course in ways that increase self-determination and improve life outcomes.

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12 Implications for Future Theory, Research, and Practice

A

s noted at the start of this book, supported decision-making is receiving attention throughout the world as a means of enabling people with disabil-

ities to remain at the center of decision-making processes about their lives. The ultimate goal of supported decisionmaking is to enable people with disabilities to act agentically, developing self-determination through meaningful participation in decisions that lead to valued quality of life outcomes. Unfortunately, as described in Part I, throughout much of modern history, people with disabilities were not viewed as capable of acting agentically, particularly with regard to participation in decisions about their lives. This led to the misconception that disability was a problem within the person and the misguided use of practices focused on segregation and control rather than community participation and causal

253

Social-Ecological Framework for Supported Decision-Making agency. Guardianship, which has a long history in the disability field and beyond, emerged in the context of deficit-based models of disability and promulgated the view that people with disabilities were inherently unable to participate in decisions about their lives, and the most appropriate “intervention” was to fully transfer authority to others to protect and control the person as complex decisions needed to be made about living, working, and participating in the community. It was not until movements emerged, largely led by people with disabilities and those that supported them, to challenge the notion that disability was a problem within a person that changes emerged. As described in Part II, social-ecological understandings of disability have provided an alternative lens through which to understand disability and to design and deliver supports and services to enhance the participation of people with disabilities in decisions about their lives. Instead of viewing disability as a problem that resides within a person, social-ecological models recognize that disability is a state of functioning, shaped by personal capacities and environmental demands that can and do change over time. Several assumptions undergird social-ecological understandings and movements that emerge from social-ecological models, such as supported decision-making arrangements. First, people with disabilities have a right to be a part of their communities. As such, the reference environment and activities must be typical community environments and activities. Being involved in decisions in all areas of one’s life, no

254

Implications for Future Theory, Research, and Practice matter how risky or complex, is a part of living a life in the community. However, as for all people, drawing on supports to effectively participate in decisions, including those that are risky or complex, is necessary. To effectively support people with disabilities in making decisions, supporters must focus on understanding the demands of environments and, based on that understanding, explore the supports that a person needs to be successful in those environments and activities. Essentially, by understanding the need for support created by the interaction between each person’s capacities and the demands of the environment, personalized supports can be developed to enhance participation in decision-making processes. Such supports should be person-centered and driven by the interests, preferences, and values of the person with a disability. They should promote agency and selfdetermination, considering personal capacities, environmental demands, and support needs. As also highlighted in Part II, an important complement to social-ecological understandings of disability and supported decision-making has been the emergence of strengths-based approaches in the disability and psychology fields. Strengths-based approaches have advanced the recognition that people with disabilities can act agentically, have specific profiles of strengths that can be leveraged to promote meaningful engagement and participation in decisionmaking, and can develop agency over their lives with appropriate supports.

255

Social-Ecological Framework for Supported Decision-Making Each of these theories alone and in combination advance the idea that disability is not a problem to be fixed or controlled, but a form of human diversity for which supports must be provided that eliminate environmental barriers, including the overly broad use of guardianship. People with disabilities may need different or more intense supports in some life domains, such as making complex decisions, but have a fundamental right to be a part of these decisions. The assumption of strengths and capabilities, alongside social-ecological understandings of disability, has driven the growing focus on supported decision-making as a means, legally and in practice, to enable people with disabilities to receive the supports needed to act agentically over decisions about their lives. Early work on supported decision-making focused on legal implications and developing an alternative to restrictive, plenary guardianships that were often the default option for people with disabilities. However, as described in Part IV, there is an emerging body of work that focuses on how practice-based applications can advance legal options for supported decision-making. Part IV highlighted the diverse research, policies, and practices that are emerging to enable supported decision-making across the various systems that support people with disabilities. The goal of this text was to initiate the integration of theory, research, and practice-based strategies to advance the creation of evidence-based systems of supports to promote supported decision-making and enable people with disabilities to achieve self-determination and quality of life

256

Implications for Future Theory, Research, and Practice outcomes. The chapters that comprise this text highlight the fundamental change that supported decision-making models introduce and require of the systems that support people with disabilities. The preceding chapters in Part IV highlighted the innovations that are just beginning to emerge and drive cohesive theory, research, and practice-based strategies that actualize the potential of supported decisionmaking and document its impact on valued outcomes. As the field continues to advance, several directions must guide efforts to actualize the potential of supported decisionmaking arrangements. First, people with disabilities must be at the center of these processes. As noted by Jenny Hatch, in Chapter 1, when describing her experiences under supported decisionmaking arrangements, “My life is a lot like yours. I get to make decisions for my life. I am very happy” (Hatch, Crane, & Martinis, 2015, p. 66). People with disabilities can and do have the capacity and right to communicate their wants and needs, when they are empowered and supported in doing so. The responsibility of supporters is to listen to people with disabilities and to create effective systems of supports. Promoting the adoption of the values of the Culture of Coordinated Support Model described in Chapter 11 can enable coordination across the multiple systems that support people with disabilities to use supported decisionmaking arrangements and practices. Second, and relatedly, it is only when the values of socialecological models and supported decision-making are

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Social-Ecological Framework for Supported Decision-Making infused across all systems that meaningful change and valued outcomes for people with disabilities can result. Legal and practice options must work together seamlessly to actualize change at the individual, organization, and societal level. As such, change is needed in legal options as well as in policies and in practices implemented within communities and provider organizations. Third, researchers must collaborate to build datasets that allow for the evaluation of the outcomes of supported decision-making and comparison of different types of supported decision-making practices as well as how they are implemented by supporters and provider organizations. International collaborations must be further developed to test cross-cultural implications of supported decisionmaking. Finally, all of these activities and values must be communicated with society at large. Only in enabling and empowering all members of a community to understand the inherent right of people with disabilities to be involved in decisions about their lives can the shared obligation of society at large to foster supports for decision-making and self-determination for all people be realized.

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284

Index

accommodations, 33–4, 69, 107, 144, 153, 176 Achieving a Better Life Experience (ABLE) Act of 2013, 9 adaptive behavior, 35, 38, 41, 55 Administration for Community Living (ACL) in the US Department for Health and

American Association on Intellectual and Developmental Disabilities (AAIDD), 38, 55 Terminology and Classification Manual American Bar Association (ABA), 19

Human Services, 18

American Bar Association’s

Advanced Directives, 14, 153

(ABA’s) Model Rules of

age of majority, 31, 103–4, 148–49 agency, 19, 108, 116, 144, 157, 166, 189, 200–02, 204–05, 213–14, 231, 243, 248–50, 255 aging, 49, 53, 136, 150, 152, 174, 206, 252 alternatives to guardianship, 18–19, 132, 143

Professional Conduct, 246 American Psychological Association, 47 Americans with Disabilities Act of 1990, 10, 122 ADA Amendments Act (ADAAA) of 2008, 10, 73 Title II of ADA, 10

285

Index

assessment, 22–5, 42, 75, 108,

complex decisions, 110, 145–46,

113–14, 116–17, 141, 145, 155,

148, 152, 154–56, 164, 179,

159, 176, 200, 202, 204,

216, 254, 256

206–08, 214, 232, 243

context, 3, 29–30, 35, 37, 39, 41, 43,

Australia, 14, 121, 190

44, 52–5, 58, 61, 67, 71, 74, 83,

autism spectrum disorders, 40, 164

90, 99, 101, 107–08, 110–11,

autonomous functioning, 161

114, 141–45, 150, 158, 162,

autonomous motivation, 71–2, 81,

165–69, 174–76, 204, 216, 236,

90, 161

237, 239, 242, 254 Court of Wards and Liveries, 30

British Columbian Representation Agreement Act, 127 Canada, 14, 121, 126 Canadian Association for Community Living (CACL), 126 Causal Agency Theory, 22, 67–71, 81–5, 89–90

Culture of Coordinated Support Model, 79, 235, 247–51 decision aids, 112, 114, 147, 157, 216 decision-making, 3, 5, 10, 13–25, 29–30, 32–34, 38, 40–1, 43–4, 46, 53–5, 61–3, 66–8, 71, 74, 78, 80, 82, 84–5, 87, 90–4, 99–118,

action-control beliefs, 85

125–33, 135–40, 142–5,

agentic action, 84, 89, 91, 160–61

147–55, 157–80, 183–206,

causal agency, 12, 75, 81, 84–5,

208–17, 219–21, 226, 231–33,

114, 139, 146, 160–61, 254

235, 237–38, 240–47, 249–57

volitional action, 85, 168 volitionally, 184 civil rights, 31–2, 34, 122–23

decision-making abilities, 23–4, 139, 150, 157, 160, 200–01, 205, 232

cognitively accessible, 34, 179, 218

decision-making aids, 112, 201, 216

community integration, 12, 14, 79,

Decision-Making Autonomy

125, 186–87, 197–98, 243 community living, 146, 155, 211

Inventory, 204, 212–13 decision-making skills, 55, 86–87,

community services, 60

100, 102–04, 106–09, 111,

community settings, 11, 124

114–15, 117, 141, 144, 154,

community-based services, 31 competing courses of action, 41, 109

286

161, 174, 179, 187, 192, 195, 220, 238, 240

Index

demands of the environment, 33, 57, 61 developmental disabilities, 43, 52, 78, 132, 135–37, 148, 150, 162, 164–65, 173, 175, 178, 180, 187–88, 190–91, 193–96, 199,

finances, 18, 133, 196, 205 financial, 146, 155, 211 financial advisors, 113 financial decision-making, 95 functional model of selfdetermination, 75

207, 220, 228, 234–35, 244, 249, 251 Developmental Disabilities and Bill of Rights Act (2006), 123, 131 disability rights movement, 73

Giving Mental Health a Voice Project, 197 goal-setting and attainment, 79 guardianship, 3–8, 10, 12–21, 23, 25, 31, 34, 43–4, 62, 80, 94–5,

ecological system, 113

101–05, 107, 111–13, 116,

macrosystem, 113

118–26, 130–32, 135–38,

meso/macrosystems, 117

143–51, 154, 159, 164, 184,

microsystem, 116

189, 197, 202, 206, 211, 213,

education, 4, 9, 22, 37, 59, 72, 74–7, 103, 127, 165, 167, 176, 186, 194, 206, 216, 223, 236, 239, 244–45, 248, 250 emotions, 49, 56, 88, 140, 150, 165, 173, 180

233–35, 237, 240, 242–43, 250–51, 256 guardian, 4–8, 15, 18, 122–24, 133, 189 plenary guardianship, 5–8, 62, 100, 122–24, 144–45

employment, 4, 9, 14, 22, 24, 43, 53, 72, 78–9, 105, 127, 136, 146, 185–86, 205, 224–25, 234, 236, 241–44, 248, 250–51 employers, 4, 113 employment outcomes, 78 empowerment, 124, 126, 144, 210–11, 257 end of life, 153 equal participation, 39, 123 ESCAPE-DD, 162, 220, 232 evidence-based, 23–4, 256

Handbook of Positive Psychology in Intellectual and Developmental Disabilities, 52 health, 16, 18, 24, 30, 35–8, 41, 43, 50–1, 55–6, 94, 104–05, 127, 133–34, 145–47, 150, 155, 168, 173, 192, 196, 199, 211, 216, 245 health care, 4, 22, 233, 235, 243–44, 247 health care professionals, 243 health condition, 36, 146, 205

287

Index

human dignity, 142

132–33, 136, 139, 147, 149,

human diversity, 256

152, 159, 194, 206, 213, 217,

human functioning, 35–9, 41, 43,

233, 235, 246, 251, 256, 258

46–7, 49, 52, 55–7, 60, 141 functioning, 32, 36–7, 40, 49, 55, 111, 131, 141, 164, 190, 226

legal agency, 31, 41–4, 101, 105, 107–08, 113, 117, 202 legal capacity, 14, 19, 32, 107–8, 112–13, 127–29

Individualized Education Program (IEP), 239 Individualized Plan for

life satisfaction, 53, 94, 197–98, 224 life span, 101, 106, 108, 144

Employment (IPE), 241 Individuals with Disabilities Education Act, 72, 236 intellectual disability, 9, 11, 24–25, 35, 38, 50, 52, 58, 62,

Medicaid Home and Community Based Services (HCBS), 244 Medicaid Waiver, 15 medical, 8, 11, 13, 16, 34–5, 58,

66, 112, 132, 142, 148,

62–3, 73, 100, 104–05, 110,

150–51, 162, 164–66, 173–74,

116, 122, 125, 133–34, 136,

178–79, 185, 187–88, 190–91,

145, 147, 149, 152–54, 167,

193–96, 199, 206–07, 217–21,

174, 205, 216–17, 241, 244,

223, 234–35, 244, 249

250–51

International Classification of Functioning, Disability, and Health (ICF), 36, 55 International Classification of Impairments, Disabilities, and Handicaps (ICIDH), 35 International Statistical Classification of Diseases

medical-institutional paradigm, 58, 62 mental health, 8, 80, 94, 108, 112, 136, 150–51, 153, 174, 206, 241 modifications to the environment, 33, 59 motivation, 24, 71–2, 81–2, 85, 89,

and Related Health Problems

91, 95, 102, 160, 164, 166,

(ICD-10), 36

170, 220

least restrictive alternatives, 122 legal, 4, 10, 13, 16, 18, 30–1, 44, 99–100, 102–04, 107–08, 111, 114–18, 120, 123–24, 126,

288

National Guardianship Association (NGA), 19 National Longitudinal Transition Study, 72

Index

National Resource Center for Supported Decision-Making (NRC-SDM), 20, 192 Nirje, 71–72 normalization-community services paradigm, 58, 62

physicians, 113, 179 Diagnostic and Statistical Manual of Mental Disorders (DSM), 39 disability identity, 39 discrimination, 11, 123–25 policy, 21, 25, 33, 39, 72, 79, 99, 111,

Office of Special Education Programs, 74 Olmstead United States Supreme Court case Olmstead v. L.C. (1999), 12, 15, 123–25 one-size-fits-all, 101, 112, 145, 150

116–17, 124, 138, 142, 208, 237 positive behavior interventions and supports, 53 positive psychology, 22, 46–56, 67, 81 Powers of Attorney, 14–15, 153, 159 preferences, 34, 42, 45, 56, 80, 85,

optimal human functioning, 56

87, 91, 111, 125, 128–29, 140,

Oxford Handbook of Positive

150, 154, 168, 170, 173, 177,

Psychology, 48, 50, 52 Oxford Handbook of Positive Psychology and Disability, 50, 52

179, 188, 191, 201–02, 204–05, 210, 213, 219, 227, 244–46, 249, 255 principle of maximal participation, 63, 176

parenting style, 172 participation, 11, 22, 35–6, 38, 42–3, 55, 59, 63, 66–7, 80, 94, 103, 107, 111–12, 114–15, 123,

provider organizations, 25, 79, 136–37, 258 psychological needs, 71, 81–2, 89, 160–61

125, 140, 143, 147, 151, 157, 168, 176–77, 189, 194, 204–6,

quality of life, 9, 24, 29, 31, 42, 44–5,

215, 232, 236–37, 244, 253–55

49, 53, 68, 72, 80, 84, 90, 93–94,

Pathways of Decision Processing Model, 161–62 peer supports, 112, 147

121, 159, 173, 186, 192, 194–96, 198, 200, 203, 234, 253, 256

personal preferences, 151, 173, 245 person-centered plan, 34, 249 person-environment fit, 32, 37, 58–59, 61–2

rehabilitation, 104, 224, 233, 235, 242, 247–48 vocational rehabilitation, 241

289

Index

Rehabilitation Act, 15, 241–42, 249 Representation Agreement Act (1996), 126 risk, 44, 88, 93, 106, 137, 144–46, 153–56, 162, 189, 191, 206, 211, 221, 251

self-determination theory, 71–2, 81–2, 90 autonomy, 12, 54, 71–2, 74–5, 82, 123, 126, 142, 155, 160, 167, 187, 204–05, 209, 212, 214, 231–32 competence, 41, 71, 82, 160 relatedness, 71, 82, 160

schizophrenia, 152, 197 SDM Community Living Project, 194–95 self-advocacy, 32, 54, 73–4, 88, 108, 128, 137, 185, 217, 232, 237, 240, 251 self-determination, 8–10, 12, 14, 16, 19, 21–2, 24–5, 29, 31–2, 42, 44, 48, 53–4, 67–9, 71–85, 87, 90–1, 93–4, 101, 116–17, 125, 130–32, 142, 146, 157,

self-regulation, 75, 88, 167 shared decision-making, 23, 216 sheltered workshops, 62, 185, 234 social ecological models environmental demands, 23 Social Security benefits, 16, 105 social-ecological, 99 personal competencies, 22, 40–41, 99–100, 102, 105–07, 112–15, 117, 140 support needs, 22–3, 34, 40, 42–3,

159–61, 167–68, 171–72,

45, 52–3, 60–1, 77, 99–100,

183–86, 192, 194–96,

109, 111–14, 117, 130, 139,

199–201, 203–05, 212, 214,

141, 145, 150–51, 160, 176,

222–24, 233–36, 239–41, 243,

201, 205, 207, 210, 232,

245, 248, 250, 252–53, 255–56, 258

241, 255 social-ecological models, 22, 29, 32,

Self-Determined Career

34, 38, 40, 42, 46, 55, 57, 67, 73,

Development Model

99–100, 139, 158, 204, 254, 257

(SDCDM), 78 Self-Determined Decision-

environmental demands, 22–4, 37–42, 44, 99–100, 102, 104–07,

Making Model (SDDMM), 180,

110, 113–15, 117, 139–41, 143,

194, 196, 201, 217, 221, 226–7,

145–46, 150–51, 153–57, 160,

229–30, 232 Self-Determined Learning Model of Instruction (SDLMI), 76, 221, 225

290

175, 200–01, 204–05, 254–55 socioeconomic status, 171 state law, 18 Texas, 18, 118, 131–35

Index

Vermont, 118, 132, 135–37, 251–52 Virginia, 18 stereotypes, 148 strengths, 22, 33, 37, 41, 46, 49, 51–2, 56, 81, 90, 108, 146–47, 154, 158, 204, 210–11, 213, 227, 245, 249, 255–56 strengths-based approach, 22, 46, 52 student-led IEP, 240, 245 subjective well-being, 8 supported decision-making, 3,

Supported Decision-Making Environmental Demands Inventory, 204 Supported Decision-Making Personal Factors Inventory, xvi, 204, 208, 210 supporters, 104, 111–12, 126, 134–35, 153–55, 157, 190–91, 193–96, 199, 202, 204, 207, 209, 211, 232, 252, 255, 257–58 supports, 3, 13, 19, 22–5, 33–4, 38–44, 46, 57–60, 62, 69, 71–2,

13–24, 29, 43–4, 54–5, 68–9,

75, 78–80, 82–4, 88, 90, 92–4,

92, 99–101, 103–04, 106–08,

100–17, 124, 129–30, 133,

111, 116, 118, 125–26, 128,

135–37, 140, 142–44, 146–47,

130–32, 135, 138–40, 142–44,

149, 151, 153–62, 166, 168,

147, 149–50, 153, 155, 157,

170, 174–77, 179–80, 187,

159, 162, 166, 180, 184, 186,

190, 195, 200–06, 208–09,

189–206, 208, 212–14, 216,

211–12, 214–17, 219, 222, 224,

226, 233–35, 237, 239–40,

226–27, 229–33, 236–41,

242–43, 245–47, 249, 251–53,

244–45, 248–51,

256–58

254–58

supported decision-making agreements, 14, 133–34, 239 contractual, 14, 149, 159 formal, 14, 17–18, 119, 125, 128, 132, 143, 159, 201–03, 213 informal, 14, 17–18, 125, 128, 132, 159, 201–03, 213 Supported Decision-Making Inventory System (SDMIS), 155, 193

individualized supports, 112 Supports Intensity Scale – Adult Version, 61 Supports Intensity Scale – Children’s Version, 61 supports paradigm, 55, 58–60, 62, 67, 158 systems of supports, 24, 42, 45, 101, 111, 116, 204

291

Index

technology, 59, 66, 111, 127, 178–80, 215–17, 219, 232, 241 assistive technologies, 219 augmented and alternative communication, 177 transition, 74–6, 103–05, 148, 193,

United Nations Convention on the Rights of Persons with Disabilities (CRPD), 13, 101 Article 12 of the CRPD, 13, 127 universally designed, 147, 157

222–23, 236–37 transition planning, 148 trusted relationship, 174, 190 US Department of Education, 19, 74

292

well-being, 39, 47–9, 53, 56, 59, 80, 94, 172, 247 Yokohama Declaration on Adult Guardianship, 130