Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination
Title:
Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination
Format:
Paperback
USA Price: 
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In stock
GPO Stock Number:
052-003-01511-1
ISBN:
9780160945236
Description

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.

Table of Contents

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

Audience

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.

Product Details

Availability Details:
In Stock
USA Price:
$49.00
International Price:
$68.60
Publisher:
National Council on Disability
Weight:
1.375
Quantity Price:
Discount
Cover:
Paper
Unit of Issue (US):
1
Unit of Issue (Non-US):
1
Record Creation Date:
03/27/2018
Last Status Update:
12/03/2018
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