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

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. Cover 1 Half-title page 3 Series page 5 Title page 9 Copyright page 10 Cambridge University Press, Disability Law and Policy Series 11 Contents 13 List of Figure 20 List of Tables 21 Foreword 23 Acknowledgments 31 Part I Overview 33 1 Introduction to Supported Decision-Making and Its Emergence in the Disability Field 35 “Justice for Jenny,” Section 1 36 Guardianship 37 “Justice for Jenny,” Section 2 38 Overbroad and Undue Guardianship 39 Supported Decision-Making 45 “Justice for Jenny,” Section 3 47 Recent Developments in Supported Decision-Making 49 Implications for Supported Decision-Making and Book Overview 53 Part II Strengths-Based Frameworks for Understanding Disability and Support Needs 59 2 Social-Ecological Models of Disability 61 Historical Conceptualizations of Disability 62 Defining the Social-Ecological Model of Disability 64 International Classification of Functioning 67 American Association on Intellectual and Developmental Disabilities 70 Diagnostic and Statistical Manual of Mental Disorders 71 Components of a Social-Ecological Model of Disability 72 Personal Competencies 73 Environmental Demands 74 Support Needs 75 Implications for Theory, Research, and Practice 76 3 Strengths-Based Approaches: Positive Psychology and Disability 78 Positive Psychology 78 Applications of Positive Psychology to Disability 81 Self-Determination 86 Supports Paradigm 87 Conclusion 99 4 Causal Agency Theory: Self-Determination and Disability 100 Self-Determination in the Disability Field 101 Emergence of Self-Determination in the Disability Field 103 Causal Agency Theory 113 Basic Psychological Needs 114 Causal Action 114 Key Terms and Assumptions 115 Essential Characteristics of Self-Determined Actions 117 Volitional Action 117 Agentic Action 119 Action-Control Beliefs 121 Self-Determination Research 122 Self-Determination and Supported Decision-Making 123 Conclusion 125 Part III Theory Underpinning Supported Decision-Making 129 5 Social-Ecological Framework for Supported Decision-Making 131 Application of Social-Ecological Models to Supported Decision-Making 132 Environmental Demands and Supported Decision-Making 134 Personal Competencies and Supported Decision-Making 138 Support Needs and Supported Decision-Making 143 Integrating Personal Competencies, Environmental Demands, and Support Needs 145 6 Decision-Making Capacity in Law and Practice 150 Guardianship History and Law 151 Reforming US Guardianship Law 153 Supported Decision-Making: International Advances 158 Supported Decision-Making: Advances in the United States 163 Texas: The Law of Supported Decision-Making 164 Vermont: State Policies and Practices for Supported Decision-Making 167 Conclusion 170 7 Environmental Demands for Decision-Making 171 Describing Environmental Demands 172 Domains of Environmental Demands 177 Research on Environmental Demands for Decision-Making 179 Assessing Environmental Demands 187 8 Decision-Making Skills and Support Needs for Decision-Making 190 Decision-Making Defined 192 Pathways of Decision Processing Model 193 Decision-Making Process Steps 198 Factors that Influence Decision-Making 202 Personal Factors 203 Sociodemographic Factors 203 Decision-Making Experience 205 Emotional Factors 205 Environmental Factors and Demands 206 Supports to Promote Decision-Making 207 Conclusion 212 Part IV Applications of a Social-Ecological Framework for Supported Decision-Making 213 9 Supported Decision-Making and Self-Determination Research 215 Self-Determination Research 216 Supported Decision-Making Research 218 Decision-Making Research 219 Supported Decision-Making Studies and Pilot Projects 221 Ongoing Supported Decision-Making Research 224 National Resource Center for Supported Decision-Making 224 Supported Decision-Making Community Living Project 226 Self-Determined Decision-Making Project 227 Giving Mental Health a Voice Project 229 Conclusion 231 10 Assessment and Intervention in Supported Decision-Making 232 Assessment in Supported Decision-Making 233 Supported Decision-Making Inventory System 235 Refinement of the Supported Decision-Making Inventory System 239 Supported Decision-Making Personal Factors Inventory 240 Supported Decision-Making Environmental Demands Inventory 243 Decision-Making Autonomy Inventory 244 Applications of the Supported Decision-Making Inventory System. 245 Using Assessment Information to Develop Interventions and Supports 247 Intervention and Support Strategies 247 Decision-Making Aids 248 Technology Supports 249 ESCAPE-DD 252 Self-Determined Decision-Making Model 253 Conclusion 263 11 Building Systems of Supports for Supported Decision-Making 265 Supported Decision-Making and Self-Determination 266 Supported Decision-Making and Special Education 268 Educational Models for Supported Decision-Making 269 Supported Decision-Making and Individualized Education Programs 271 Supported Decision-Making and Vocational Rehabilitation 273 Supported Decision-Making and Health Care 275 Supported Decision-Making and Legal Representation 278 Supported Decision-Making and State Support Systems: Culture of Coordinated Support Model 279 Supported Decision-Making and the Culture of Coordinated Support Model: Case Study of Vermont 283 Conclusion 284 12 Implications for Future Theory, Research, and Practice 285 References 291 Index 317 This volume integrates cutting-edge research, theory, and practice in supported decision-making. Emerging work from legal, psychology, education, and health fields are described, and applications for supports provision in the disability field are highlighted with a specific focus on promoting valued outcomes, including self-determination and quality of life.