This report by the National Council on Disability (NCD) seeks to explain, evaluate, and contextualize a system that impacts a large number of people with disabilities, particularly intellectual, cognitive, and age-related disabilities.
Although NCD has consistently supported and encouraged the adoption of policies that promote the self-determination of people with disabilities, as well as the adoption of the Convention on the Rights of Persons with Disabilities and its Article 12 imperative ”that all people with disabilities retain their legal capacity, even those who may need significant and intensive support to effectuate it,” The Council has not, until now, explored how guardianship impacts people with disabilities or made recommendations regarding how to transform the way in which we assist people with disabilities who may need help managing money or property or making decisions that impact their health and welfare.
Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . 11
Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. .. 15
Summary of Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
List of Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . 25
Chapter 1: Guardianship Basics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . 27
Guardianship Fundamentals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Questioning the Assumptions of Guardianship . . . . . . . . . . . . . . . . . 27
Rights at Risk in Guardianships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
A Word on Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Process of Obtaining Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Steps to Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Court Determination of Incapacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
Capacity and Scope of the Guardian’s Authority . . . . . . . . . . . . . . . . 35
Ending a Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Chapter 2: Guardianship Against the Backdrop of Disability Rights Law . .. . 39
Guardianship as a Disability Policy Issue . . . . . . . . . . . . . . . . . . . . . . . . . . 41
History of Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
The Eugenics Movement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Institutionalization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Civil Rights Expansion and Joining the Community . . . . . . . . . . . . . . . . . 44
Deinstitutionalization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
Independent Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
Rehabilitation Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
Developmental Disabilities Assistance and Bill of Rights Act . . . . . . 47
A Right to Public Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Community Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
The ADA Generation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
CRPD—The ADA Goes Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 7
Chapter 3: Evolution of Guardianship Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
Ancient and British Roots . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54
Pre-Reform: Guardianship in America . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54
Late 1980s, Early 1990s: First Wave of Guardianship Reform . . . . . . . . . . 55
Early 2000s: Second Wave of Guardianship Reform . . . . . . . . . . . . . . . . . 57
Present Day: Third Wave of Guardianship Reform . . . . . . . . . . . . . . . . . . . 58
The Dawn of Supported Decision Making . . . . . . . . . . . . . . . . . . . . . . 60
Revising the UGPPA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
Chapter 4: The Current Guardianship System in America . . . . . . . . . . 65
The Current System Lacks Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
Data on the Number of People Subject to Guardianship . . . . . . . . . . 65
Data on the Number of Filings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66
What Is Known from Limited Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
2014 SSA Representative Payee Report . . . . . . . . . . . . . . . . . . . . . . . . 67
2010 Study of the National Center for State Courts’ Center for
Elders and the Courts..................... 68
State Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
What the Lack of Data Means . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
Does Guardianship Prevent Abuse or Lead to It? . . . . . . . . . . . . . . . . 70
Chapter 5: Capacity and the Role of “Experts” in Guardianship Proceedings . . . . . . 73
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Moving Away from the “Reasonable Man” Standard of Capacity . . . . . . . 74
Philosophical Origins . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
Behavioral Economics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
Capacity Determinations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
Who Decides Capacity? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
“Expert” Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
Who Are the Experts? ........................................... 79
Varies by State . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
Shortcoming of Physicians as “Experts” . . . . . . . . . . . . . . . . . . . . . . . 79
Tools the Experts Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
Tests and Questionnaires . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
ABA/APA Framework for Evaluations . . . . . . . . . . . . . . . . . . . . . . . . . . 81
8 National Council on Disability
Court Discretion and Due Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82
Limited Guardianship and the Functional Model of Capacity . . . . . . 82
Chapter 6: Concerns About When and How Guardians Are Appointed . . . . . . . . . . . 85
Due Process Concerns . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
Difficulty Accessing Zealous Representation . . . . . . . . . . . . . . . . . . . . 88
Overuse of Plenary Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88
Unequal Treatment Under the Law for People with ID/DD . . . . . . . . . 89
School-to-Guardianship Pipeline for Youth with ID/DD . . . . . . . . . . . . . . . 92
The Pipeline Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92
Alternatives to the Pipeline . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94
Financial Costs of Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
Cost of Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
Public Funding of Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
Professional Guardianship in the Absence of Sufficient
Public Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
Chapter 7: Concerns Once Guardianships Are in Place . . . . . . . . . . . . . . . . . . . . . . . . 101
Overview of Concerns . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
Guardianship: A Double-Edged Sword? . . . . . . . . . . . . . . . . . . . . . . . 101
The Impact on Life Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
Financial Abuse by Guardians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
Overbroad Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
Implications for Voting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
Sexuality and Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
Jurisdictional Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Restoration of Rights........................................... 110
ABA Commission on Law and Aging/Virginia Tech Center for
Gerontology Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
Restrictions on Restoration Efforts . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
Chapter 8: Less-Restrictive Alternatives to Guardianship . . . . . . . . . . . . . . . . . . . . . . 119
Olmstead Necessitates Finding Alternatives to Guardianship . . . . . . . . . 119
Introduction to Alternatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
A Practical Tool for Considering Alternatives . . . . . . . . . . . . . . . . . . . . . . 121
Alternatives by Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 9
Financial Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
Health Care Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
Educational Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 128
International Best Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
The Trend Toward the Alternative of Supported Decision Making . . . . . . 130
Definition of Supported Decision Making . . . . . . . . . . . . . . . . . . . . . 130
Benefits of Supported Decision Making . . . . . . . . . . . . . . . . . . . . . . . 131
Areas for Greater Study with SDM Models . . . . . . . . . . . . . . . . . . . . 132
How Supported Decision Making Works . . . . . . . . . . . . . . . . . . . . . . 133
International and U.S. Support and Advancement of SDM . . . . . . . 134
Next Steps for Supported Decision Making as an Alternative
to Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
Chapter 9: Stakeholder Experiences with the Guardianship System . .. 139
Overview of NCD’s Qualitative Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
Analysis and Salient Themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141
Treatment Within the Legal System . . . . . . . . . . . . . . . . . . . . . . . . . . . 141
Supported Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
Access to Information About the Guardianship Process and
Possible Alternatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
Impact of Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
National Disability Policy Goals and Initiatives . . . . . . . . . . . . . . . . 156
Chapter 10: Findings and Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161
Appendix A: Table of Authorities—State Guardianship Statutes . . . . . . . . . . . . . . . . 169
Appendix B: Developmental Disability Specific Guardianship Statutes . . . . . . . . . . 171
Appendix C: Contact Information for WINGS Groups* . . . . . . . . . . . . . . . . . . . . . . . 173
Appendix D: Attorney Representation in Initial Guardianship Cases . . . . . . . . . . . . 175
Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
Acticsits officials engagedin the rights of the disabled, federal and private sectgor hiring officials, counsellors and advisers to the disabled community, federal, state and local law makers engaged in social welfare policy and legal rights, attorneys supporting the rightws of the disabled in hiring and access issues.
