National Council on Disability

March 22, 2018

Beyond Guardianship:

Toward Alternatives That 

Promote Greater 

Self-Determination
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 

National Council on Disability, March 22, 2018

Celebrating 30 years as an independent federal agency

This report is also available in alternative formats. Please visit the National Council on Disability 

(NCD) website (www.ncd.gov) or contact NCD to request an alternative format using the following 

information:

ncd@ncd.gov Email

202-272-2004 Voice

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
Letter of Transmittal

March 22, 2018

President Donald J. Trump

The White House

1600 Pennsylvania Avenue NW

Washington, DC 20500

Dear Mr. President:

The National Council on Disability (NCD) is pleased to submit its report, Beyond 

Guardianship: Toward Alternatives That Promote Greater Self-Determination for People 

with Disabilities, which provides a comprehensive review of guardianship against the 

backdrop of the civil rights advancements of individuals with disabilities in the past several 

decades. While people with a variety of disabilities may face guardianship, the burgeoning 

aging population in America has forced issues surrounding guardianship to the fore in 

national media coverage and policy debates in recent years, making NCD’s report a timely 

contribution to policy discussions. 

Guardianship generally involves a state-court determination that an individual lacks the 

capacity to make decisions with respect to their health, safety, welfare, and/or property. 

Although guardianship is governed by state law, it entails the removal of rights protected 

by the U.S. Constitution. Additionally, individuals who are subject to guardianship are also 

protected by the Americans with Disabilities Act and Section 504 of the Rehabilitation 

Act, which are laws intended to increase the ability of individuals to live and work in the 

community, encourage participation in civic life, and to promote self-determination for 

individuals with disabilities. 

The Beyond Guardianship report explains how guardianship law has evolved, explores 

due process and other concerns with guardianships, offers an overview of alternatives 

to guardianship, and identifies areas for further study. The report includes a review of 

existing scholarship on the topic as well as the results of a qualitative study of individuals 

with experience in guardianship and its alternatives, and offers major findings and 

recommendations to Congress, the Administration, and to state and local government. 

National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 1
We stand ready to work with you and your Administration to work for improvements to 

the way in which individuals with disabilities who may require decision assistance are 

treated in the legal system and provided with assistance.

Respectfully,

Neil Romano

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of 

the U.S. House of Representatives.)

2 National Council on Disability
National Council on Disability Members and Staff

Members

Clyde E. Terry, Chairperson

Benro T. Ogunyipe, Vice Chairperson

Billy W. Altom

Rabia Belt

James T. Brett

Bob Brown

Daniel M. Gade

Wendy S. Harbour

Neil Romano

Staff

Vacant, Executive Director

Joan M. Durocher, General Counsel & Director of Policy

Amy Nicholas, Attorney Advisor

Amged Soliman, Attorney Advisor

Ana Torres-Davis, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach 

Phoebe Ball, Legislative Affairs Specialist 

Lisa Grubb, Director of Operations and Administration 

Stacey S. Brown, Staff Assistant 

Keith Woods, Financial Management Analyst

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 3
4 National Council on Disability
Acknowledgments

The National Council on Disability (NCD) wishes to express its appreciation to Quality Trust for 

Individuals with Disabilities who worked collaboratively with NCD to conduct the research and writing 

of this report. Additionally, we would like to thank the Institute on Disabilities at Temple University for 

its involvement in the qualitative study that is included in this report.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 5
6 National Council on Disability
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

10 National Council on Disability
Glossary

Adjudication: The process of a judicial determination; an adult under guardianship has generally been 

“adjudicated” to lack capacity.

Adult: An individual who is at least 18 years of age, regardless of disability.

Advance Directive: A witnessed document or documents that a person can use to provide instructions 

regarding their desires and preferences about medical treatment in the event that they become 

incapacitated. Such medical treatment may include, for example, life prolonging treatment or psychiatric 

treatment during a crisis. Often, an Advance Directive will include a power of attorney and a health care 

surrogate designation.

Agent: A person with the legal authority to act on behalf of another.

Alleged Incapacitated Person (AIP): A person who is the subject of a petition to determine capacity 

or guardianship, but who has not yet been adjudicated incapacitated.

Annual Accounting: A report states may require a guardian of the property to file itemizing 

expenditures and receipts made on behalf of the person subject to guardianship in the previous year. 

Some states allow the court to waive this requirement, particularly if the only income the person has 

is Social Security and the guardian is also the representative payee of such funds.

Annual Guardianship Plan: A report, filed by the guardian of the person, that some states require to 

be submitted to the court each year specifying the medical, mental, and physical care of the person 

subject to guardianship for the upcoming year.

Attorney ad Litem: An attorney who is appointed by the court to act as a legal advocate in the best 

interest of a child or incapacitated adult. Unlike attorneys in a normal attorney-client relationship, they 

do not necessarily advocate for the desired outcome of the individual they represent, but may advocate 

for an outcome the attorney deems in the person’s best interest.

Best Interest: A type of decision making standard that may be used when making a decision on behalf 

of another person, particularly in court cases involving child custody or welfare. Compared to substituted 

judgment, it is seen as a more objective standard; emphasis is on the person’s safety and wellbeing.

Capacity: An individual’s ability to perform a specific task, such as to sign a contract; also refers to 

the legal ability to perform an act and to subsequently be bound by the act. May also be referred to as 

competency.

Clerk of the Court: Court officer responsible for filing papers, administration of cases, and keeping 

records of court proceedings. In some courts, the Clerk of the Court may play a role in reviewing 

accountings and reports filed by guardians.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 11
Conflict of Interest: Situations in which an individual may receive financial or material gain or 

advantage from a decision made on behalf of another person, with whom they have a relationship.

Court Visitor or Monitor: Individual appointed to advise the court regarding whether an individual 

needs a guardian (and, if so, who it should be) or to report to the court whether an existing 

guardianship continues to be appropriate or necessary, what the condition of the individual 

subject to guardianship is, or whether the decisions being made on behalf of that individual are 

appropriate.

Durable Power of Attorney: A durable power of attorney is effective even after the principal becomes 

incapacitated. The attorney-in-fact can continue to act within the scope of authority granted under this 

power of attorney.

Family Guardian: A nonprofessional guardian who serves as guardian for an individual who is subject 

to guardianship. Although family guardians usually are related to the individual subject to guardianship, 

they may instead be friends or even volunteers. Although they can be reimbursed out of the estate, 

they are not serving as guardians in order to make a living. The definition of family guardian may vary 

from state to state.

Guardian: A person, institution, or agency appointed by a court to manage the affairs of another 

individual. The guardian may have the authority to manage personal and/or financial matters. Each 

state has specific laws that govern guardianship proceedings and the guardian’s activities. States have 

separate laws and procedures for guardianship for minors and for adults with disabilities. States may 

use different terms to refer to guardians, such as conservators.

Guardian ad Litem: A person appointed to advise the court regarding the needs and best interests of 

a child or individual who either lacks capacity or, in some states, has been alleged to lack capacity.

Guardianship of the Person: A guardianship where the guardian is granted the authority by the court 

to make personal decisions for an individual. This means that the right to make personal decisions has 

been removed from the individual and transferred to a guardian. These rights may include, for example, 

the right to decide where to live, with whom to associate, and what medical treatment to receive or 

not receive.

Guardianship of the Property: A guardianship where the guardian is granted the authority by the court 

to manage and make decisions about another person’s financial matters, benefits, real estate, and other 

property. This means that the right to make property decisions has been removed from the individual 

and transferred to the guardian. This is sometimes referred to as a conservatorship or guardianship of 

the estate.

Health Care Surrogate: An agent who has been given the authority to make health care decisions for a 

person either by the person through a durable power of attorney for health care or by operation of law.

Indigent: An individual with little to no resources and who may be entitled to an attorney paid for by the 

state, the appointment of a public guardian, and/or the waiver of court costs and fees.

12 National Council on Disability
Informed Consent: Consent, usually to a medical procedure or legal representation, given by a person 

after information disclosing the risks, benefits, and costs of undertaking a given action are divulged, so 

the person may make a free and uncoerced decision.

Limited Guardianship: A guardianship where the guardian only has the authority specifically given by 

court order. The person subject to a limited guardianship retains all other decision making rights not 

specifically outlined by the court order.

Magistrate Judge: A state official who makes decisions in legal cases just like a judge, but does not 

have as much power as a judge. Magistrates generally handle minor cases and, in some jurisdictions, 

may handle guardianships cases, especially those that are uncontested.

Plenary Guardianship: A guardianship where the court gives the guardian the power to exercise all 

legal rights and duties on behalf of the person subject to guardianship. The guardianship is of both the 

person and the property, and the individual subject to guardianship has been adjudicated completely 

incapacitated. This is the most restrictive form of guardianship.

Power of Attorney: A legal instrument, executed under state law, by which one person (called the 

principal) voluntarily appoints someone else (called the attorney-in-fact or agent) to legally act on their 

behalf with respect to certain decisions and under certain circumstances. A durable power of attorney

is operative even after the individual has lost capacity. A power of attorney for health care is generally 

operative when the person becomes incapacitated.

Professional Guardian: A professional guardian is generally a private individual or organization who 

serves as guardian for numerous individuals subject to guardianship and is not a member of those 

individuals’ families. Professional guardianship charge fees for carrying out their duties. They are 

generally paid out of the resources of the person subject to guardianship, when that person has such 

resources.

Public Guardian: A guardian who generally is either employed or funded by the state to provide 

guardianship services to individuals who have been determined incapacitated. Often, public guardians 

serve people who are indigent and/or are the responsibility of a state agency or entity.

Representative Payee: An individual, agency, or organization appointed by the Social Security 

Administration (SSA) to receive, manage, and spend Social Security benefits on behalf of and for the 

benefit of an individual who is entitled to the benefits but who has been determined by SSA to be 

unable to manage the resource.

Respondent: A person who is responding to a lawsuit or legal action. In guardianship, the alleged 

incapacitated person who is the subject of a petition for guardianship is the respondent.

Special Needs Trust: A type of trust that is established for the benefit of a person with disabilities. 

The assets in this type of trust are intended to supplement and protect public benefits, specifically 

Medicaid. The advantage of this type of trust is that its assets do not negatively impact the beneficiary’s 

eligibility for Medicaid or other government programs as long as the trust is administered properly.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 13
Standard of Proof: Refers to the duty or burden carried by the party responsible for proving the case. 

There are generally three standards of proof that can apply in legal cases: “beyond a reasonable doubt” 

(highest standard, applies in criminal cases and in guardianship cases in New Hampshire.), “clear 

and convincing” (second highest standard, which applies in most states’ guardianship cases), and 

“preponderance of the evidence” (lowest standard, which applies in some states’ guardianship cases 

and also may be the burden of proof in restoration cases).

Substituted Judgment: A standard of decision-making that should generally be used when making 

decisions on behalf of an adult with a disability, according to the National Guardianship Association. It 

refers to making a decision on behalf of an individual that is aligned with the decision they would have 

made for themselves if they had the capacity to do so. This includes understanding and considering 

the values and preferences of the individual for whom decisions are being made either as currently 

expressed or as expressed prior to the determination that the individual was incapacitated.

Trust: A fiduciary arrangement where the trustee manages money or property for the benefit of a 

beneficiary or beneficiaries. A trust is a separate legal entity that owns assets that are managed by the 

trustee for the benefit of the beneficiary or beneficiaries in accordance with the rules established by 

the trust. There are many different kinds of trusts, each of which provides different benefits.

14 National Council on Disability
T

his 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 it has been an important 

part of Western law since the ancient Greeks, 

guardianship has not garnered the attention of 

policymakers and disability rights advocates the 

way other issues have. In fact, although NCD 

has consistently supported and encouraged 

the adoption of policies that promote the selfdetermination 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,”1 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. Guardianship is 

a creature of state law, with a federal footprint 

that has historically been fairly small. However, 

guardianship has a profound impact on the 

people subject to it, as well as on their families 

and communities. The existence of a process 

through which an adult can essentially be 

found legally incapable of making decisions 

for themselves and another adult appointed 

to make decisions on behalf of that individual 

raises fundamental civil rights issues that are 

deserving of thorough examination. Additionally, 

the increase in the number of older Americans as 

the baby-boom generation enters retirement and 

growing concern over elder abuse has increased 

the level of interest in this topic among federal 

policymakers. 

A foundational principal in our democracy is 

the legal presumption that once an individual 

reaches the “age of majority” and becomes an 

adult, he or she is capable of making decisions 

and taking certain legal actions is a foundational 

principle in our democracy.2 Once a person turns 

18, he or she can vote; sign contracts; make 

a will; and choose where to live, go to school, 

and work. Eighteen is not a magic number; 

people who are younger than 18 may make 

very rational decisions and individuals who 

are over that age often make poor decisions. 

However, mistakes are part of how we learn 

to make future decisions. As one of the 

guardianship professionals interviewed for the 

report explained, “We have to acknowledge 

that everyone . . . makes bad decisions, so we 

frequently have to acknowledge and respect the 

right for the person to make a ‘wrong’ decision.”

Executive Summary

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 15
The presumption of one’s right to liberty, 

self-determination, and personal autonomy is 

fundamental to American culture, democracy and 

economy. In the first chapter of his 1869 book, 

On Liberty, English philosopher John Stuart Mill 

writes:

The only part of the conduct of any one, 

for which he is amenable to society, is that 

which concerns others. In the part which 

merely concerns himself, his independence 

is, of right, absolute. Over himself, over 

his own body and mind, the individual is 

sovereign.3

In theory, people with disabilities are 

entitled to the presumption of capacity 

along with their peers without disabilities. 

However, throughout history, as law professor 

and recognized guardianship expert Robert 

Dinerstein notes:

Society assumes that adults of typical 

intelligence, psychosocial functioning, 

and sensory ability are able to engage 

in all aspects of life—deciding where to 

live, whom (or whether) to marry, how to 

spend one’s money (or to whom to leave 

it), for whom to vote—on an autonomous 

basis. . . . But for adults with disabilities, 

the picture has been and continues to be 

quite different. States have assumed that 

the mere status of having an intellectual or 

psychosocial disability (or some sensory 

disabilities) provides a sufficient basis 

to presume that the individual is unable 

to participate fully and autonomously in 

society, in other words, that the individual 

lacks the legal capacity to exercise his or 

her rights.4

Indeed, Mill offers this caveat: “those who 

are still in a state to require being taken care of 

by others must be protected against their own 

actions as well as against external injury.” It is 

worth noting that he also denies that personal 

autonomy applies to “. . . those backward 

states of society in which the race itself may 

be considered as in its nonage.” So, while Mill 

firmly establishes personal autonomy as the 

foundation of liberty, his words also serve as a 

reminder that the history of America is one of 

gradually expanding these fundamental principles 

to include people who were not, at its inception, 

assumed to possess the full complement of 

inalienable rights. 

As we will explore throughout this report, 

Mills’ and others’ understanding of the 

implications of being dependent on others for 

personal care is antithetical to the Americans 

with Disabilities Act (ADA). However, Lawrence 

A. Frolik—another thoughtful scholar on 

guardianship whose thoughts will appear 

throughout this report—has argued that “[i]t 

is possible that the reform goals of personal 

autonomy and dignity are so at odds with reality 

so as to be unattainable.”5 That is a fair point to 

be considered if we are going to understand 

guardianship and propose reforms that are not 

only philosophically consistent with disability 

rights, but also serve as practical solutions for 

people with disabilities and their families. As one 

person interviewed for this report put it, “. . . if the 

Council were to connect the idea of autonomy 

with dignity, I think that would be such a powerful 

statement.” 

Indeed, throughout this report, NCD will 

explore the connections among autonomy, 

dignity, independence, and protection, and 

provide the reader with a better understanding 

16 National Council on Disability
of guardianship, which directly impacts the 

lives of an estimated 1.3 million Americans 

with disabilities. It has often been noted that 

an individual subject to guardianship moves 

through the world indistinguishable from the 

rest of the population, except that he or she 

has undergone “a kind of civil death” and is “no 

longer permitted to participate in society without 

mediation through the actions of another if at 

all.”6 As one person with disabilities interviewed 

for this report explained, “I would feel kind of like 

a prisoner, knowing that all my decisions were up 

to someone else.” On the other hand, there are 

those who view guardianship not as a restriction 

of rights, but as a form of protection and 

assistance. One guardian who was interviewed 

emphasized that guardianship “is in the best 

interest of the individual, and it’s not a means 

or stripping rights or controlling.” An attorney at 

a public guardian agency added that, without a 

finding of incapacity to contract, “what happens 

if that person signs a contract [but] . . . read[s at 

a] second grade level? [Now] they bought a car 

or . . . sold their house.” 

Throughout this report, NCD seeks to 

balance and recognize both of these viewpoints 

while remaining unwavering in the belief that 

“people who are [seniors] and people with 

disabilities both desire and deserve choices 

when seeking assistance with daily living 

that maintains their self-determination and 

maximum dignity and independence.”7 This is 

as true of individuals who need help making 

decisions as it is when they need housing, 

medical care, assistance with personal care, or 

any other kind of support. Guardianship must 

be measured not only by how well it protects 

individuals, but also by how well it advances 

their dignity, autonomy, and self-determination, 

and NCD seeks to explore both measurements 

throughout this report.

Summary of Methodology

This report provides an overview of the current 

state of guardianship law and practice and an 

overview of policy reforms and analysis of how 

effective or ineffective these efforts have been. 

In preparation for this report in October 2016, an 

extensive literature review was conducted of the 

relevant scholarship available in English with a 

preference for studies concluded within the past 

decade. The resources identified in that review 

form the backbone of the report. Additionally, in 

order to better understand the experiences with 

guardianship and decision making alternatives 

of people with disabilities, their families, and 

other stakeholders, qualitative interviews were 

conducted with 46 individuals with a range of 

experiences with guardianship. Although this 

is an insufficient number from which to glean 

statistically significant information, their responses 

helped guide the direction of this report. We report 

on the qualitative interviews in Chapter 9, and 

references to the interviews appear throughout 

the report. Additionally, the qualitative data is 

collected in a “white paper” that will appear on 

NCD’s website as a companion to this report along 

with the literature review previously referenced. 

This report is organized into 10 chapters. 

Chapter 1 will explain what “guardianship” is, 

where it comes from in terms of history and 

jurisprudence, and how it is used in modern 

times. Chapter 2 will trace the history of disability 

discrimination in the United States and describe 

the growth of the disability rights movement 

and how we think about what it means to be a 

person with a disability. Chapter 3 will provide 

background on past and current guardianship 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 17
reforms, including the motivation behind them. 

Chapter 4 will provide a snapshot of the current 

state of guardianship in the United States. 

Chapter 5 will examine the key concept of 

capacity and how experts and courts evaluate 

whether or not an individual is capable of 

making decisions for themselves. Chapter 6 

continues the discussion of due process rights 

for individuals facing guardianship and the 

ongoing rights of individuals who are subject 

to guardianship, as well as an examination of 

some of the financial costs associated with 

guardianship. Chapter 7 examines specific issues 

that often arise in guardianship such as financial 

abuse and exploitation, health care decision 

making, and other areas that can be problematic 

and deserve close examination. Chapter 8 

examines alternatives to guardianship and 

suggests ways that they can be made stronger 

and more viable sources of support for people 

with disabilities who need or want decision 

making assistance. Chapter 9 reports the findings 

from the study conducted for this report and 

brings forward the voices of people who have 

knowledge and experience that can enhance our 

understanding of guardianship and alternatives. 

Finally, Chapter 10 offers the findings and 

recommendations of the Council in the area of 

guardianship in light of the information presented 

in this report. 

Findings and Recommendations

Finding 1: There is a lack of data on existing guardianships and newly 

filed guardianships.

Most states do not track on a statewide basis how many individuals are subject to 

guardianship, much less describe those guardianships in terms of basic demographic 

information, whether the guardian is a professional or family guardian, the extent of 

the guardian’s authority, the assets involved, and other basic questions that would help 

policymakers and stakeholders make determinations about what reforms may be needed in 

guardianships or where resources should be directed to improve guardianship outcomes for 

people with disabilities.

Recommendations:

NCD recommends that Congress and the Administration develop initiatives to produce 

effective and comprehensive data on guardianship. There are two ways production of this 

data should be approached:

■ Federal agencies such as the Social Security Administration (SSA), the Centers for Medicare 

and Medicaid Services (CMS), the U.S. Department of Veterans Affairs (VA), the Substance 

Abuse and Mental Health Services Administration (SAMHSA), and other relevant agencies 

should collect data on whether or not individuals they serve are subject to guardianship. 

18 National Council on Disability
■ States should be offered incentives and technical assistance with developing electronic 

filing and reporting systems that collect basic information about guardianships from the 

moment a petition is filed. A searchable, computerized system for aggregating information 

on adult guardianship cases would not only yield better usable data on guardianships, but 

would also improve that ability of courts to monitor and audit individual guardianships. 

Systems such as the “My Minnesota Conservator” reporting and data project are already 

in use in a few states and could be adopted across the country. Data collected must 

be detailed enough to allow for drawing conclusions and should include demographics, 

type of guardianship (limited vs. plenary, guardian over property vs. person, etc.), type of 

guardian (public guardians, private professional guardian, family guardian), age at which 

the person was subject to guardianship, court audits, timeliness of reports, amount of 

funds/property in the estate, and the involvement of the person in federal programs (Social 

Security benefits, Supplemental Security Income [SSI], Medicaid, Medicare, VA benefits, 

etc.). The data should also include whether the initial petition was contested, whether 

there is any time limitation to the guardianship, and whether there is any periodic review of 

the continued need for guardianship. 

Finding 2: People with disabilities are widely (and erroneously) seen as 

less capable of making autonomous decisions than other adults regardless of 

the actual impact of their disability on their cognitive or decision making abilities. This can 

lead to guardianship petitions being filed when it is not appropriate and to guardianship being 

imposed when it is not warranted by the facts and circumstances. 

Recommendations:

■ The Department of Justice (DOJ), in collaboration with the Department of Health and 

Human Services (HHS), should issue guidance to states (specifically Adult Protective 

Services [APS] agencies and probate courts) on their legal obligations pursuant to the 

Americans with Disabilities Act (ADA). Such guidance should address NCD’s position 

that: 1) the ADA is applicable to guardianship proceedings; 2) the need for assistance 

with activities of daily living or even with making decisions does not give rise to a 

presumption of incapacity; and 3) guardianship should be a last resort that is imposed 

only after less restrictive alternatives have been determined to be inappropriate 

or ineffective. 

Findings and Recommendations, continued

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 19
■ In January 2017, the U.S. Department of Education Office of Special Education and 

Rehabilitative Services (OSERS) issued school-to-adult transition-related guidance that 

recognized alternatives to guardianship, including the use of supported decision making 

(SDM) and powers of attorney for adult students with disabilities. While this policy 

development is promising, OSERS needs to do more to ensure consistent implementation 

of this guidance across state and local educational agencies—for example, the creation of 

model supported decision making and powers-of-attorney forms geared toward transitionage youth. School transition teams must inform parents/caregivers and students of lessrestrictive decision making support options for adults, rather than promoting the overuse of 

guardianship or involuntary educational representatives. 

■ The Department of Education Office of Special Education Programs (OSEP) should instruct 

Parent Training and Information Centers to prioritize and provide meaningful training on 

school-to-adult transition and alternatives to guardianship. 

■ HHS should issue guidance regarding the responsibility of medical professionals and 

hospitals to accommodate the needs of individuals who may need assistance making 

medical decisions and to adequately explain procedures and draft documents provided to 

patients in plain language. 

■ Although the Federal Government generally leaves the content of medical school training 

to the accrediting bodies, federal advisory group recommendations, and federal grants 

from CMS, HHS, and other federal agencies can influence the content of medical 

training and curriculum. Educating medical professionals about the ADA and the need to 

accommodate people with disabilities, including those with intellectual disabilities and 

cognitive impairments, should be prioritized as a part of medical training.

■ The National Home and Community-Based Services Quality Enterprise (NQE) should 

include decision making assistance and use of alternatives to guardianship such as 

supported decision making in their priorities and include best practices as part of its 

resources, training, and technical assistance. 

■ The Administration for Community Living (ACL) has funded numerous projects that are 

geared toward expanding alternatives to guardianship, such as supported decision making. 

The agency also provides state grants to enhance adult protective services. Such funding 

should be allocated specifically to assist state adult protective services systems to 

develop greater awareness of ways to enhance the self-determination of adults considered 

vulnerable or in need of services, as well as the availability and use of alternatives to 

guardianship. 

Findings and Recommendations, continued

20 National Council on Disability
■ The Developmental Disabilities Councils, University Centers for Excellence in 

Developmental Disabilities (UCEDDs), and the Protection and Advocacy (P&A) 

organizations should link work that has been done on advancing the self-determination of 

people with intellectual and developmental disabilities (ID/DD) with avoiding guardianship. 

There needs to be recognition that the appointment of guardians is not necessarily the 

preferred outcome for people with disabilities. Such appointments instead can be the 

result of systems failing to fully recognize people’s right to direct their own life and to 

support them in developing self-determination and communication skills, use and build 

natural support networks, and have access to less-restrictive alternatives. UCEDDs in 

particular have a role in educating physicians, medical professionals, and parents of people 

with ID/DD on self-determination, supported decision making (SDM), and other alternatives 

to guardianship. 

Finding 3: People with disabilities are often denied due process in 

guardianship proceedings.

Guardianship is viewed as a benevolent measure that is sought in the best interest of people 

with disabilities and/or older adults who are seen as needing protection. Guardianship 

cases are often dispensed with as quickly as possible with little concern for due process or 

protecting the civil rights of individuals facing guardianship. 

Recommendations:

■ The Elder Abuse Prevention and Prosecution Act (P.L. 115-70) calls upon the Attorney 

General to publish best practices for improving guardianship proceedings and model 

legislation relating to guardianship proceedings for the purpose of preventing elder abuse. 

The Attorney General’s model legislation should incorporate the Uniform Guardianship, 

Conservatorship & Other Protective Arrangements Act (UGCOPAA), including its provisions 

for preventing unnecessary guardianships. 

■ To ensure that due process requirements are met, it is especially important that 

alleged incapacitated individuals facing guardianship have qualified, independent legal 

representation that will advocate for the individual’s desired outcome, especially if that 

person expresses a desire to avoid guardianship or objects to the proposed guardian. 

However, many courts lack sufficient resources to fund this type of representation and 

families often find that such representation is cost-prohibitive. Federal grant money should 

be made available to help promote the availability of counsel. 

Findings and Recommendations, continued

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 21
■ A state guardianship court improvement program should be funded to assist courts with 

developing and implementing best practices in guardianship, including training of judges 

and court personnel on due process rights and less-restrictive alternatives. 

■ The degree of due process provided in a guardianship matter should not be contingent 

on the type of disability that is the alleged cause of an individual’s incapacity or inability 

to make and carry out decisions. The DOJ should take the position that such practices are 

discriminatory on the basis of the ADA. 

Finding 4: Capacity determinations often lack a sufficient scientific or 

evidentiary basis. 

Courts rely too heavily on physicians who lack the training, knowledge, and information 

needed to make an accurate determination. 

Recommendations:

■ National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), 

National Institutes of Health, and other agencies that fund scientific research should 

provide grants to researchers who are trying to develop a better understanding of how 

people make decisions and how a variety of conditions—such as dementia, intellectual 

disabilities, brain injuries, and other disabilities—impact the ability of individuals to make 

and implement informed decisions. 

■ Capacity is a social and legal construct that is not necessarily provable or disprovable 

through scientific methods. Resources also should be geared toward developing functional 

approaches to capacity assessments that take into account the possibility that someone 

may need decision making assistance but not necessarily a surrogate or substitute 

decision maker. 

Finding 5: Guardianship is considered protective, but courts often fail to 

protect individuals.

In some cases, guardians use their position to financially exploit people or subject them to 

physical neglect and abuse. Courts lack adequate resources, technical infrastructure, and 

training to monitor guardianships effectively and to hold guardians accountable for the timely 

and accurate submission of required plans, accountings, and other reports, as well as for 

conforming to standards of practice for guardians. 

Findings and Recommendations, continued

22 National Council on Disability
Recommendations:

■ The court improvement program proposed earlier could also enhance the ability of courts 

to monitor guardianships and should include the adoption of programs such as My 

MNConservator, which requires guardians to file reports electronically, allows for the flagging 

potential problems in filed accountings, and facilitates the periodic audit of guardianship files. 

■ Although professional and family guardians can both be the perpetrators of abuse 

in guardianship, there have been several high-profile cases of abuse by professional 

guardians. In most states, these professionals operate with minimal oversight except by 

the court. States should be provided with incentives to establish statewide boards that can 

provide for the accreditation and oversight of professional guardians. 

■ States should require family guardians to undergo training to ensure they understand their 

ongoing responsibilities to the person subject to the guardianship and to the court. 

Finding 6: Most state statutes require consideration of less-restrictive 

alternatives, but courts and others in the guardianship system often do 

little to enforce this requirement. 

Courts often find that no suitable alternative exists when, in fact, supported decision making 

or another alternative might be appropriate. 

Recommendations:

■ ACL currently funds the National Resource Center for Supported Decision-Making and 

several demonstration projects at the state and local levels. These grants should be 

expanded to be able to fund more geographically- and demographically-diverse projects 

and pilots that specifically test SDM models and use SDM and the court systems to 

restore people’s rights as a matter of law, particularly for people who are older adults with 

cognitive decline, people with psychosocial disabilities, and people with severe intellectual 

disabilities.

■ The DOJ should make funding available to train judges in the availability of alternatives to 

guardianship including, but not limited to, supported decision making. This training should 

also include information about the home and community-based–services system and the 

workforce development system so that judges understand the context in which decisions 

are being made by and for people with disabilities. See Finding 3.

Findings and Recommendations, continued

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 23
■ It’s important that states adopt provisions of the UGCOPAA that recognize alternatives 

to guardianship can be used in place of guardianship even when it is determined that the 

individual meets the definition of incapacity. DOJ should develop guidance to this effect. 

Finding 7: Every state has a process for restoration, but this process is 

rarely used and can be complex, confusing, and cost-prohibitive.

Data on restorations is seriously lacking, making it impossible to tell how many individuals 

are in unnecessary guardianship or whether individuals who would like to try to have 

their rights restored have access to information about their right to restoration, receive 

an appropriate response to their request for restoration, or have access to resources and 

representation to assist them in that effort. 

Recommendations:

■ As a part of the effort to improve data collection and monitoring, electronic filing and 

auditing systems ought to include data about restoration, including whether the individual 

was given information about restoration and whether the continued need for guardianship 

was reviewed by the court. 

■ The state court improvement program referenced throughout these recommendations 

should include improvements to the restoration process. DOJ should publish guidance 

regarding the right to restoration and best practices. 

■ A grant should be given to the Protection and Advocacy system to provide legal assistance 

to individuals who are trying to have their rights restored or avoid guardianship.

Findings and Recommendations, continued

24 National Council on Disability
List of Acronyms

ACL Administration for Community Living

ADA Americans with Disabilities Act

ADAA ADA Amendments Acti of 2008

AIP alleged incapacitated person

AP Associated Press

APS Adult Protective Services

CMS Centers for Medicare and Medicaid Services

CRPD United Nations Convention on the Rights of Persons with Disabilities

DOJ U.S. Department of Justice

EAHCA Education for All Handicapped Children Act

FHAA Fair Housing Amendments Act of 1988

HCBS Medicaid Home and Community-Based Services

HHS Department of Health and Human Services

ID/DD intellectual and developmental disabilities

IDEA Individuals with Disabilities Education Act

IEP individualized education program

NCD National Council on Disability

NIDILRR National Institute on Disability, Independent Living, and Rehabilitation Research

NQE National Home and Community-Based Services Quality Enterprise

OSEP Department of Education Office of Special Education Programs

OSERS U.S. Department of Education Office of Special Education and Rehabilitative Services

P&A Protection and Advocacy

SAMHSA Substance Abuse and Mental Health Services Administration

SDM supported decision making

SSA Social Security Administration

SSI Supplemental Security Income

UCEDDs University Centers for Excellence in Developmental Disabilities

UGCOPAA Uniform Guardianship, Conservatorship & Other Protective Arrangements Act

UGPPA Uniform Guardianship and Protective Proceedings Act

VA U.S. Department of Veterans Affairs

WINGS Working Interdisciplinary Networks of Guardianship Stakeholders

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 25
“ The typical [person subject to 

guardianship] 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.”

—Congressman Claude 

Pepper (1987)

26 National Council on Disability
Chapter 1: Guardianship Basics

Guardianship Fundamentals

Questioning the Assumptions 

of Guardianship

According to the National Guardianship 

Association, Inc.: “Guardianship, also 

referred to as conservatorship, is a legal 

process, utilized when a person can no longer 

make or communicate safe or sound decisions 

about his/her person 

and/or property or has 

become susceptible to 

fraud or undue influence. 

Because establishing a 

guardianship may remove 

considerable rights from 

an individual, it should 

only be considered 

after alternatives to guardianship have proven 

ineffective or are unavailable.”8

Before we can begin evaluating guardianship 

or making recommendations for how to improve 

it, it is important to define and ensure a basic 

understanding of what guardianship is. Although 

the previous quote may seem like a reasonable 

definition from which to start, it contains value 

judgments—which are worthy of consideration—

such as what constitutes “safe or sound 

decisions”; who gets to make that determination 

for an individual; and how an individual’s safety 

should balance against his or her right to 

experience the dignity of risk.

Despite the oft-cited proposition that all 

people have certain inalienable rights, once 

someone is declared incapacitated and is 

appointed a guardian, many of their rights are 

taken away and their ability to make decisions in 

a wide variety of areas given to another person. 

Therefore, although guardianship is largely a 

creature of state law, 

it nonetheless raises 

fundamental questions 

concerning federal civil 

rights and constitutional 

due process. An adult 

usually becomes subject 

to guardianship when the 

court finds that:

■ the individual is incapable of making all or 

some of their own financial or personal 

decisions, and

■ it is necessary to appoint a guardian to make 

those choices on their behalf. 

Rights at Risk in Guardianships

Guardianships are typically separated into two 

categories, guardianships of the person and 

guardianships of the property (also sometimes 

referred to as conservatorship). When the 

[O]nce someone is declared 

incapacitated and is appointed a 

guardian, many of their rights are 

taken away and their ability to make 

decisions in a wide variety of areas 

given to another person.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 27
REMOVABLE RIGHTS UNDER GUARDIANSHIP

Contract Contract Sue and Defend

Lawsuits

Apply for 

Governemnt

Benefits

Manage

Money or 

Property

Apply for

G

Manage

M

Decide Where

to Live

ecide Where

Li

Consent to

Medical 

Treatment

Decide with

Whom to

Associate 

or be Friends

Decide with

Wh

...that can be exercised by another person

Committing 

Someone to

 an Institution

Consenting to

Experiments

nsenting to Filing for 

Divorce

Consenting to

Termination of

 Parental Rights

Consenting to

Sterilization or

Abortion

nsenting to nsenting to

 ...that can be exercised by another person only with a court order

Marry Vote Seek or Retain

Employment

Drive

...that cannot be exercised by another person

28 National Council on Disability
guardian controls decisions regarding both 

person and property, the guardianship is called 

plenary. However, there are really three types of 

rights that are at issue in guardianships: 

■ Rights that can be taken from an individual 

but not given to another individual 

■ Rights that can be taken from a person and 

exercised by someone else on their behalf 

■ Rights that a guardian needs a court order to 

exercise on the individual’s behalf 

A person who is determined incapacitated 

generally can have the following rights removed, 

but these rights cannot be exercised by someone 

else. These include the right to:

■ marry, 

■ vote, 

■ drive, or 

■ seek or retain employment. 

Still, other rights can be removed and 

transferred to a guardian who can exercise these 

rights on behalf of the individual, such as the 

right to:

■ contract,

■ sue and defend lawsuits, 

■ apply for government benefits, 

■ manage money or property, 

■ decide where to live, 

■ consent to medical treatment, and 

■ decide with whom to associate or be 

friends. 

In many states, there are also some rights 

that a guardian can exercise on behalf of the 

individual subject to guardianship, but only after 

the court has issued a specific order allowing the 

action, such as:

■ committing the person to a facility or 

institution, 

■ consenting to biomedical or behavioral 

experiments, 

■ filing for divorce,

■ consenting to the termination of parental 

rights, and

■ consenting to sterilization or abortion.

When Does an Adult Become 

Subject to Guardianship?

An adult usually becomes subject to 

guardianship when the court finds that: 

■ the individual is incapable of making all or 

some of their own financial or personal 

decisions, and

■ it is necessary to appoint a guardian to 

make those choices on their behalf.

Types of Rights at Issue in 

Guardianships

■ Rights that can be taken from an individual 

but not given to another individual 

■ Rights that can be taken from a person and 

exercised by someone else on their behalf 

■ Rights that a guardian needs a court order 

to exercise on the individual’s behalf

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 29
This list is a general description of the way 

various rights are treated under guardianship laws 

across the country; for state-specific information 

consult the table in Appendix A for a reference to 

guardianship laws in each state. 

A Word on Language

When a petition is filed with the court that 

alleges that the individual is incapacitated, the 

individual is often referred to as the alleged 

incapacitated person, or AIP for short. If the 

court finds that the person does lack capacity 

and appoints a guardian to manage some or all of 

their affairs, the individual is often referred to as 

the ward. In this report, we will use the term AIP, 

but because the term ward is viewed by many 

as stigmatizing and inappropriate, whenever 

possible, consistent with NCD’s longstanding 

commitment of avoiding stigmatizing language, 

we will refer to individuals for whom a guardian 

has been appointed as an individual subject to 

guardianship. This is also consistent with the 

Uniform Guardianship, Conservatorship & Other 

Protective Arrangements Act (UGCOPAA), which 

is the latest iteration of the uniform guardianship 

statute that has been approved by the Uniform 

Law Commission.9 However, it should be noted 

that the term ward will appear when it appears in 

a direct quote. 

Process of Obtaining Guardianship

Overview

Guardianship petitions may be filed in a wide 

variety of situations: by parents when a child 

with an intellectual disability turns 18; by a son 

or daughter when a parent begins to show 

30 National Council on Disability
signs of dementia severe enough that there 

is concern for their safety; for a person with a 

severe disability due to sudden trauma; or when 

there is concern that a bad actor is exercising 

undue influence over a person with a disability 

in order to exploit the individual in some way. 

There are also times when guardianship is filed 

for less altruistic reasons, such as to gain access 

to the person’s assets or public benefits or to 

exploit the individual. Whether the guardianship 

is over person, property, or both, or whether it 

is limited or plenary may be determined, at least 

in part, by the circumstances that give rise to 

the perceived need for guardianship. Due to our 

federalist system of government, guardianship is 

a creature of state, rather than federal law, and 

all 50 states and the District of Columbia have 

revised their statutes regarding guardianship 

numerous times. However, it is not clear that in 

statute or in practice guardianship law has been 

able to keep pace with the nation’s changing 

understanding of 

disability, autonomy, and 

due process. 

Although the 

process is different in 

every state, making it 

difficult to provide a 

singular description of 

the guardianship process, there are certain 

generalities that are helpful to discuss before 

examination of whether or not guardianship 

is working for people with disabilities, their 

families, and communities. The following 

steps are generalities that may or may not 

align with the laws in a given state, so it is 

important for interested individuals to consult 

their state’s laws for more accurate, detailed 

information. 

Steps to Guardianship

Step 1—Filing the petitions

In virtually all states, the guardianship process 

begins with filing a petition in the court with 

jurisdiction that alleges 

that a named individual 

is incapacitated and 

needs a guardian. In 

some jurisdictions, 

these are two separate 

petitions that actually 

result in two cases going 

forward. In Florida, for example, the petition 

for a determination of capacity commences a 

confidential proceeding and the court file of the 

case remains confidential as it invariably contains 

personal and medical information. However, 

the guardianship petition commences a public 

proceeding and the ultimate establishment of 

the guardianship is necessarily public information 

since the role of the guardian is to engage with 

others on behalf of the individual subject to 

[I]t is not clear that in statute or in 

practice guardianship law has been 

able to keep pace with the nation’s 

changing understanding of disability, 

autonomy, and due process.

General Steps to Guardianship

1. Filing the petitions

2. Notice that a guardianship petition has 

been filed

3. Appointment of an attorney to represent 

the alleged incapacitated person

4. Capacity evaluation

5. Hearing

6. Letters of guardianship

7. Guardianship plan and initial reports

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 31
guardianship. From that point in the process until 

the person is determined to lack, or not lack, 

capacity, the named individual is known as the 

AIP. Once a guardian is appointed, the individual 

is generally referred to as the ward, although, as 

noted previously, we will use individual subject 

to guardianship throughout this report. Usually 

the petitioner knows the AIP well, and is often a 

parent, an adult child, or a social worker for the 

AIP. Generally speaking, most jurisdictions require 

that the following basic information be provided 

to the court in the petition: 

■ A description of the nature and type of 

disability of the AIP and how it impacts the 

individual’s decision making 

■ Any relevant medical documentation to 

which the petitioner has access 

■ A statement asserting the need for 

guardianship and justifications supporting 

this opinion 

■ The suggested guardian’s name, who must 

be a person who is willing and statutorily 

qualified (e.g., over 18, not a felon), with 

a description of his or her relationship to 

the AIP

Step 2—Notice that a guardianship 

petition has been filed

Most states require that certain interested 

parties such as next of kin, existing “attorneyin-fact,” or health care proxy receive notice that 

a guardianship or determination of capacity 

petition has been filed. This notice usually 

includes:

■ the name of the AIP; 

■ the names of the AIP’s closest relative(s); 

■ the name of the person or facility that is 

providing care for or has custody of the 

AIP; and

■ the name of the proposed guardian or his 

or her attorney (some states require the 

guardian to be represented).

Additionally, many states recognize that 

someone who is facing guardianship may have 

difficulty understanding the notice they are given. 

In these states, there are statutory requirements 

that attempt to ensure that the person has the 

best chance of understanding the information. 

For example, in Virginia, the AIP must receive 

a brief statement in at least 14-point type of 

the purpose of the proceedings, his or her right 

to counsel and to a hearing, and a statement 

warning him or her in bold capital letters that 

the hearing may result in the individual losing 

many of his or her rights and a guardian being 

appointed to make decisions for him or her.10

Another example is in Florida, where an attorney 

is appointed by the court as soon as the petition 

is filed, and that attorney is required to visit the 

individual within 24 hours of the filing of the 

petition to read the petition to him or her and 

explain exactly what it means.11

Step 3—Appointment of an attorney 

to represent the AIP 

The right to counsel is a basic procedural right 

of respondents in guardianship proceedings. The 

Uniform Guardianship and Protective Proceedings 

Act (UGPPA) and the National Probate Court 

Standards both require appointment of counsel 

to represent the AIP, and most states have put 

these provisions into practice. However, the role 

of the attorney varies significantly from state to 

state, “with some states requiring counsel as 

32 National Council on Disability
vigorous advocate and others specifying that 

counsel should act as guardian ad litem.”12

Legal representation should be seen as 

necessary in all guardianship proceedings—

even under the most benevolent and caring 

circumstances—because guardianship represents 

a deprivation of liberty, which implicates due 

process.13 The role of legal counsel in guardianship 

proceedings raises a number of interesting 

questions and will be discussed in greater detail 

later, with a close examination in Chapter 6. 

Step 4—Capacity evaluation

The procedures for determining capacity vary a 

great deal from state to state and sometimes 

depend on the type of incapacity that is 

alleged.14 Generally, the determination that an 

individual lacks capacity will be informed by 

an evaluation by an expert; this is discussed in 

greater detail in Chapter 5. As will be discussed 

in Chapter 5, some states also have separate 

procedures for people with developmental 

disabilities.15 Additionally, a few states provide 

examiners who are called upon to make capacity 

determinations after receiving specialized 

instruction or training in how to make such a 

determination under the state law.16

Step 5—Hearing

Generally, the guardianship hearing occurs 

within a relatively short period of time following 

the petition and the capacity evaluation.17

Because some courts now recognize that 

capacity may change over time, the information 

and evidence the court will use to make a 

decision regarding the need for guardianship 

should be contemporary in order to serve 

as relevant evidence.18 Usually, there is a 

requirement that all interested parties, including 

the AIP, next of kin, and possibly others have 

received notice and know when and where the 

hearing will be. Finally, most jurisdictions require 

the AIP to be physically present at the hearing 

unless the judge determines there is good cause 

for them not to be there. 

Guardianship hearings can be very brief 

and uncomplicated if the court determines the 

capacity evaluation presents clear and convincing 

evidence that the individual lacks capacity, if the 

AIP does not dispute or agrees to a guardian, and 

if the court and AIP agree on who the guardian 

should be. However, the hearings can also 

become fairly adversarial with witnesses being 

called and contradicting evidence presented 

if there is disagreement about whether the 

individual is incapacitated or who should be 

appointed guardian. 

Step 6—Letters of guardianship

If the court determines that the individual is 

incapacitated, the judge generally will enter a 

judgment describing the incapacity and issue 

letters of guardianship, which outline the extent 

of the guardian’s authority and outline his or her 

duties and responsibilities. At this point, the AIP 

becomes an individual subject to guardianship. 

In some states, guardians are required to have 

completed certain training and certification 

requirements prior to appointment. There are 

three broad types of guardians:

■ Public guardians, who are publicly funded to 

provide guardianship services to individuals 

with no family willing to serve as guardian. 

In some states a public guardian is only 

appointed if the individual is indigent. 

■ Professional guardians, who are paid out 

of the estate of the individual subject to 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 33
guardianship or a court fund to provide 

guardianship services

■ Family guardians, who are usually family 

members, but may also be unrelated friends 

who are not acting as guardians for multiple 

individuals 

Generally, guardians—even family guardians—

can be reimbursed out of the estate of the 

individual subject to guardianship for activities 

on behalf of the individual such as paying 

bills, consulting with medical professionals, 

or making living arrangements. As the name 

suggests, professional guardians provide these 

services to large caseloads of individuals subject 

to guardianship and are paid, usually after 

authorization from the court, out of the individual’s 

assets. Payment is generally only authorized by 

the court at a rate the court deems “reasonable,” 

which may differ from jurisdiction to jurisdiction 

within the state depending on prevailing rates 

for professional services. Additionally, what is 

reasonable may depend on the task performed 

and the level of expertise required. This is will be 

discussed in greater detail in Chapter 6.

Step 7—Guardianship plan and initial 

reports

There are best practices outlined by organizations 

such as the National Guardianship Association 

and a few initial steps that most guardians 

take—as determined by state law. The specific 

requirements may depend on whether the 

guardianship is over person, property, or both. 

One of the first steps of a guardian of the 

property is to determine what assets and liabilities 

the individual subject to guardianship has and 

to make an initial report to the court providing a 

summary of their finances. In many jurisdictions, 

annual reports, including a detailed accounting 

of how the money of the individual subject to 

guardianship is being spent, are required as long 

as a guardianship of the property is in place. 

For guardians of the person, many jurisdictions 

require the guardian to submit a plan soon 

after appointment that describes his or her 

proposed plan of care for the individual subject 

to guardianship as well as history of past care. 

These plans may be reviewed by the judge 

overseeing the case, by the clerk of the court, 

or by a court monitor appointed to assist the 

court with oversight. This provides a baseline 

that enables the court to measure the guardian’s 

future performance. Some jurisdictions require 

that a guardian be represented by an attorney 

who ensures that the annual accountings 

and reports are filed accurately and timely. 

A guardian’s attorney may work at the direction 

of the guardian, but he or she has a fiduciary 

responsibility to the individual subject to 

guardianship and can be held accountable for 

mismanagement of funds, misrepresentations 

to the court, or any action that is contrary to 

the best interest of the individual subject to 

guardianship.19

Court Determination of Incapacity

Generally speaking, a person who is incapacitated 

has been determined by a court to be “unable 

to receive and evaluate information or make or 

communicate decisions to such an extent that 

the individual lacks the ability to meet essential 

requirements for physical health, safety, or 

self-care.”20 It should be noted that the word 

incapacitated is essentially interchangeable with 

the word incompetent, which used to be the 

preferred term. This change in parlance occurred 

largely due to reforms that began in the 1980s and 

34 National Council on Disability
continue to this day.21 Although there is quite a bit 

of debate in scholarly circles about the semantic 

differences in the two terms, it is enough to 

understand that being declared incompetent is 

associated with a time when the law declared 

an individual to be an “idiot,” “lunatic,” “person 

of unsound mind,” or “spendthrift,” and therefore 

generally “incompetent” and unable to exercise 

any rights.22 Incapacitated, on the other hand, is 

the current term used by most courts that employ 

a combination of medical and functional criteria 

to reach a determination that a person cannot 

exercise specific rights. The court generally 

applies a two-pronged legal test to determine 

whether an individual is incapacitated.23 The court 

must make two findings: 

1. The existence of a disabling condition, such 

as “mental illness,” “mental disability,” 

“intellectual 

disability,” “mental 

condition,” “mental 

infirmity,” or “mental 

deficiency.” 

2. That such condition 

causes an inability to 

adequately manage 

one’s personal or 

financial affairs.24

Capacity and Scope of the Guardian’s 

Authority 

Although it used to be the case that guardians 

were appointed to exercise virtually all the rights 

of the individual subject to guardianship, it is 

now possible for judges to decide that a person 

can exercise some rights but not others on 

their own.25 For example, a person may be able 

to understand medical information and make 

informed decisions based on that information 

but not be able to remember to pay their bills 

on time. Such a person may retain the right to 

make medical decisions 

but lose the right to 

manage property or 

sign contracts. This 

arrangement is called 

a limited guardianship.

As one woman who 

has guardianship over 

her adult daughter with 

disabilities put it, “[s]he doesn’t really understand 

the concept of money but as far as decisions 

[about] where to live, what to eat, where to go, 

what entertainment to do, she makes all those 

decisions.” Conversely, when an individual is 

determined to lack capacity to exercise any of the 

rights described at the beginning of this chapter, 

the guardianship is considered plenary or general.

In many states, there is an explicit statutory 

preference for limited guardianship that only 

gives the guardian the right to make decisions 

Two-Step Legal Test to Determine 

Incapacity

The court must make two findings: 

1. The existence of a disabling condition, 

such as “mental illness,” “mental 

disability,” “intellectual disability,” “mental 

condition,” “mental infirmity,” or “mental 

deficiency.” 

2. That such condition causes an inability 

to adequately manage one’s personal or 

financial affairs.

[I]t is enough to understand that 

being declared incompetent is 

associated with a time when the 

law declared individuals “idiot,” 

“lunatic,” “person of unsound 

mind,” or “spendthrift” ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 35
the individual is truly incapable of making. 

Unfortunately, as we will explore in Chapter 4, 

empirical studies indicate that courts do not often 

take advantage of the limited guardianship option 

and rarely limit a guardian’s authority.26

Lawyers and judges who work in the area 

of guardianship will also sometimes refer 

to a guardian of the person or a guardian of 

the property. In some states, guardianship 

of the property is sometimes referred to as 

conservatorship, but we will continue to use the 

more generic and descriptive term guardianship 

of the property to refer to these arrangements 

throughout the report. 

All these terms simply 

indicate whether or 

not the guardian has 

been given authority to 

manage any personal 

affairs or make medical 

decisions for the 

individual subject to guardianship, the authority 

to manage the individual’s property, or both.27

A plenary guardian is generally considered the 

guardian of both person and property.28

Although a determination of incapacity is 

a legal decision made by a judge, “[t]he court 

customarily evaluates the medical condition of 

the proposed individual subject to guardianship 

by considering the individual’s medical history, 

any diagnosis of mental illness [or other 

impairment], and a psychological evaluation.”29

In many cases, the determination of incapacity 

and the need for a guardian (as opposed to using 

a less restrictive alternative) must be proved by 

clear and convincing evidence.30 One final factor 

that can impact the scope of the guardian’s 

authority is whether the guardian makes 

decisions on behalf of the individual based on a 

“substituted judgment or best interest” standard; 

in some jurisdictions the statute or case law will 

specify which standard should be used and under 

what circumstances. The substituted judgment 

standard takes into account the individual’s 

preferences, beliefs, and patterns of behavior as 

well as the individual’s wishes, which may have 

been expressed when the individual had capacity. 

While the “best interest” standard should also 

include a consideration of these factors, it is 

generally more geared toward making decisions 

the guardian believes are in the individual’s 

best interest with the 

person’s well-being, 

health, and safety being 

the central concerns. 

These standards not only 

impact how the guardian 

makes decisions, but 

also how a court might 

review those decisions. 

Ending a Guardianship

Once a guardianship is put in place, in most 

circumstances, it lasts either until the individual 

subject to guardianship dies, until all of his or her 

rights are restored, or until it is determined by the 

court that, although the person continues to lack 

capacity with regard to one or more of the rights 

that had been removed, there is a less restrictive 

alternative that will protect the individual’s 

property and/or health and welfare without the 

need for a guardian. If the guardian dies and a 

court has not restored the individual’s rights or 

found a less restrictive alternative appropriate, a 

successor guardian is appointed to replace him 

or her. 

[E]mpirical studies indicate that 

courts do not often take advantage 

of the limited guardianship option 

and rarely limit a guardian’s 

authority.

36 National Council on Disability
Unfortunately, restoration of rights is 

an alarmingly rare occurrence. This will be 

discussed at greater length in Chapter 7, but for 

now, it is enough to understand that all states 

have a process for restoration of the rights of 

the individual subject to guardianship. Usually, 

either the individual or another interested party 

can ask the court to 

restore some or all of 

the rights that were 

removed when the 

guardianship was established. The procedures 

vary from state to state, but in many cases, 

the court will convene a hearing regarding 

restoration and receive evidence, sometimes 

including an independent capacity evaluation, 

and make a ruling regarding whether some 

or all of the individual’s rights should be 

restored. A court order will specify which of 

the individual’s rights were restored. If property 

rights are restored, generally the guardian of 

the property is required to file a final accounting 

and “wrap-up” the guardianship by providing 

any documents the individual will need to regain 

control of his or her property and assets. 

In the event that the guardianship ends 

because the individual subject to guardianship 

dies, the guardian will 

have to file the death 

certificate with the 

court within a specified 

period of time and relinquish control of the 

“guardianship estate” to the executor of the 

individual’s will or the individual’s next of kin. 

Finally, the guardian may be required to file a 

final accounting that identifies how assets in the 

guardianship estate have been managed since 

the last accounting as well as where assets are 

to be found with the court that had overseen the 

guardianship. 

Unfortunately, restoration of rights 

is an alarmingly rare occurrence.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 37
38 National Council on Disability
The table that follows originally appeared 

in NCD’s Rising Expectations: The 

Developmental Disabilities Act Revisited report 

and has been updated.31

Chapter 2: Guardianship Against the Backdrop 

of Disability Rights Law

Table 1. Timeline of Major Legislative and Policy Initiatives Affecting People 

with Developmental Disabilities, 1960–2010

1960–1965 ■ President Kennedy delivers a Message to Congress, calling for a “bold new 

approach” in the United States for responding to people with mental illnesses 

and intellectual disabilities and releases the National Plan to Combat Mental 

Retardation.

■ The Mental Retardation Facilities and Community Mental Health Centers 

Construction Act of 1963 creates a national network of research centers and 

university-affiliated facilities.

■ The Social Security Act of 1965 establishes the Medicare and Medicaid 

programs.

1966–1970 ■ The number of residents in large state institutions for people with intellectual 

disabilities reaches its peak at 194,650 in 1967.

1971–1975 ■ In 1971, amendments to Title XIX of the Social Security Act authorize Medicaid 

reimbursements for intermediate care facility services.

■ The Civil Rights Division of the U.S. Department of Justice begins intervening 

in disability rights cases, starting with a judge’s invitation in Wyatt v. Stickney.

In Wyatt, 325 F.Supp. 781 (M.D. Ala. 1971), a federal court held for the first 

time that people with mental illnesses or intellectual disabilities who are 

involuntarily committed to state institutions have a constitutional right to 

treatment that will afford them a realistic opportunity to return to society.

■ The Social Security Amendments of 1972 establishes the Supplemental 

Security Income (SSI) program for seniors and people with disabilities.

■ The Rehabilitation Act of 1973 revises earlier vocational rehabilitation 

legislation to emphasize serving people with severe disabilities and includes a 

nondiscrimination clause (see 1976–1980).

■ The Education for All Handicapped Children Act of 1975 mandates that 

children with disabilities ages 3–21 receive a free and appropriate education 

in the least restrictive environment based on an individualized education 

program and with due process guarantees.

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 39
1971–1975 ■ On May 5, 1975, the New York Governor signed the Consent Decree that ended 

the legal battle to improve conditions at the Willowbrook State School in 

Staten Island, New York. The Decree established that residents of Willowbrook 

had a constitutional right to be protected from harm and required New York 

state to take immediate steps to improve the lives of those who lived there 

and to ”ready each resident ... for life in the community at large” in the “least 

restrictive and normal living conditions possible.”

1976–1980 ■ Regulations implementing Section 504 of the Rehabilitation Act of 1973 are 

signed in 1977, implementing the nondiscrimination clause that prohibits the 

exclusion of people with disabilities from any program or activity receiving 

federal financial assistance.

■ A U.S. District Court found that residents of the Pennhurst institution had 

three distinct sets of constitutional rights, including the right to habilitation, 

the right to be free from harm, and the right to nondiscriminatory and 

nonsegregated habilitation.

1980–1985 ■ The Medicaid Home and Community-Based Services (HCBS) waiver program 

is established.

■ The Civil Rights of Institutionalized Persons Act of 1980 provides the DOJ with 

the statutory authority to bring cases to protect people living in institutions.

1986–1990 ■ 1986 Amendments to Education for All Handicapped Children Act provide 

funding to states to offer early intervention programs for infants and toddlers.

■ The Technology Related Assistance for Individuals with Disabilities Act of 1988 

establishes grant programs to encourage the development and distribution of 

assistive technology for people with disabilities.

■ The Fair Housing Amendments Act (FHAA) of 1988 amended Title VIII of the 

Civil Rights Act of 1968, which prohibits discrimination on the basis of race, 

color, religion, sex, or national origin in housing sales, rentals, or financing.

The FHAA extends this protection to people with disabilities and families with 

children.

■ The 1990 Americans with Disabilities Act prohibits discrimination based on 

disability.

1991–1995 ■ The 1992 Education for All Handicapped Children Act is changed to Individuals 

with Disabilities Education Act (IDEA), and language is added to support the 

transition from school to adulthood.

1996–2000 ■ The Ticket to Work and Work Incentives Improvement Act of 1999 establishes 

new programs and work incentives for SSI and Social Security Disability 

Income beneficiaries.

■ In 1999, the U.S. Supreme Court holds in the case of Olmstead v. L.C. that 

the unnecessary segregation of people with disabilities in institutions may 

constitute discrimination based on disability. This case had and continues to 

have significant public policy implications for people with disabilities.

2001–2005 ■ In 2001, the New Freedom Initiative includes a set of proposals designed to 

ensure that Americans with disabilities have the opportunity to learn and 

develop skills, engage in productive work, make choices about their daily 

lives, and participate fully in their communities.

■ The No Child Left Behind Act of 2001 is designed to ensure that all children 

have a fair, equal, and significant opportunity to obtain a high-quality 

education and requires that states develop accountability systems.

40 National Council on Disability
2006–2010 ■ Congress enacts the ADA Amendments Act of 2008 (ADAA), making it easier 

for a person to establish that he or she has a disability within the meaning of 

the statute. Congress overturned several Supreme Court decisions that had 

interpreted the definition of disability too narrowly, resulting in a denial of 

protection for many people with impairments such as cancer, diabetes, and 

epilepsy. The ADAA states that the definition of disability should be interpreted 

in favor of broad coverage of individuals.

■ The Convention on the Rights of Persons with Disabilities (CRPD) is 

an international disability treaty modeled on the ADA. The CRPD is a 

vital framework for creating legislation and policies around the world 

that embraces the rights and dignity of all people with disabilities.

The United States signed the CRPD in 2009, but Congress has not yet 

ratified it.

Guardianship as a Disability Policy 

Issue

Guardianship is often overlooked, and, 

when it becomes part of the national policy 

conversation, it is often viewed as an issue 

impacting older Americans and not thought 

of as an important 

disability issue. 

However, guardianship 

must be understood 

as a disability policy 

issue worthy of 

examination, reflection, 

and reform. After all, 

an adult becomes 

subject to guardianship 

only if a court has determined that he or she 

cannot manage property or meet essential 

requirements for health and safety. Additionally, 

at least 11 states have laws that provide 

for alternate, and generally less rigorous, 

procedures when the individual who allegedly 

needs a guardian is an adult with intellectual 

and/or developmental disabilities. The Table of 

Authorities in Appendix A at the end of this 

report references the statutes that make this 

distinction. Regardless of whether one is a 

young adult with a congenital developmental 

disability subject to guardianship because the 

court determined he or she lacked the ability to 

make decisions him or herself, or whether one 

is in his or her 80s and the court believes that 

Alzheimer’s disease has 

advanced to the point 

where he or she can no 

longer make decisions 

for his or herself, the 

reason to impose 

guardianship is disability 

in both instances. 

In order to fully 

understand guardianship 

as a disability issue, we need to come from a 

common understanding of it within the context 

of the evolution of disability policy, particularly 

as it relates to issues of liberty, autonomy, and 

self-determination. This chapter provides an 

overview of the evolution of disability policy from 

the eugenics movement to the CRPD in order to 

provide context for our discussion of guardianship 

and to help ground our recommendations in 

NCD’s long tradition of advancing policies that 

[A]t least 11 states have laws that 

provide for alternate, and generally 

less rigorous, procedures when the 

individual who allegedly needs a 

guardian is an adult with intellectual 

and/or developmental disabilities.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 41
promote the dignity, self-determination, and 

maximum independence of all people with 

disabilities regardless of their age. 

History of Discrimination

The Eugenics Movement

Disability is a natural part of the human 

experience that has always been a part of 

the fabric of American society.32 However, 

a movement that was an important part of 

American politics from the 1890s until the 

1920s aimed specifically 

to remove people with 

disabilities and other 

minority groups from 

society.33 The eugenics 

movement relied upon 

fear and pseudoscience 

to enact public policies 

to segregate people with 

disabilities from their 

families and communities 

and to impede their 

ability to procreate, so 

that their alleged “bad 

genes” would not burden 

society for another generation, as the narrative 

went.34 Even those considered among the best 

legal minds of the age embraced the noxious 

policy of eugenics, including U.S. Supreme Court 

Justice Oliver Wendell Holmes Jr., who penned 

the infamous Buck v. Bell decision in 1927 and 

found state statutes permitting compulsory 

sterilization of people with disabilities were not 

unconstitutional.35 Fortunately, the eugenics 

movement fell into public disrepute after 

discovery of the Nazis’ horrific acts committed 

in reliance on eugenic ideas.36 In fact, mass 

exterminations in Nazi Germany in the 1940s 

began with the killing of institutionalized Germans 

with disabilities in the T4 program—actions based 

on eugenic theories imported from the United 

States more than a decade earlier.37

While the end of World War II marked a 

de-escalation of the eugenics movement, 

many forcible sterilization laws, of which the 

eugenics movement had facilitated enactment, 

persisted well into the 1970s.38 The policies 

that began during the eugenics movement’s 

heyday reverberate through laws that are still 

on the books today 

and have a profound 

impact on American 

society’s understanding 

of disability. As NCD 

pointed out in its 

2012 report, Rocking 

the Cradle: Ensuring 

the Rights of Parents 

with Disabilities and 

Their Children, over 

two decades after the 

passage of the ADA, 

several states still have 

laws on their books that 

authorize involuntary sterilization and affirm in 

statute that the “best interests of society would 

be served by preventing them [people with 

disabilities] from procreating.”39

Underlying these historic laws and other 

practices to be described later in this chapter is a 

base assumption that people with disabilities are 

incapable of making decisions for themselves, 

and that society must be protected from the 

consequences of the decisions that people with 

disabilities might make. Eugenics attempted to 

control whether people with disabilities made 

Eugenics attempted to control 

whether people with disabilities 

made fundamental decisions for 

themselves about having intimate 

relationships and children; during 

the same time period many 

individuals were denied the right to 

determine where and how to live 

because they were committed to 

large state institutions.

42 National Council on Disability
fundamental decisions for themselves about 

having intimate relationships and children; during 

the same time period many individuals were 

denied the right to determine where and how to 

live because they were committed to large state 

institutions. 

Institutionalization

As a result of state statutes authorizing 

involuntary sterilization in 30 states, by 1970 

more than 65,000 Americans had been 

involuntarily sterilized, and to this day several 

states have not removed 

these statutes from their 

books.40 In addition to 

the practice of eugenic 

sterilization, from the 

mid-1800s through 

the early 1970s, states 

regularly practiced 

segregation of people 

with disabilities via 

institutionalization, 

which also represented 

a fundamental violation 

of their human rights.41 With respect to people 

with intellectual disabilities, these sprawling 

institutions started in many cases as benevolent 

organizations with a mission to impart a “practical 

education” to the students who were expected 

to one day return to their communities as 

productive members. However, as early as the 

late 1850s, the goal of the institutions had already 

become strictly custodial in nature. People with 

disabilities placed in them were effectively 

warehoused away from the rest of society, and 

few individuals who found themselves living in 

them could ever expect to leave them in their 

lifetimes.42 As the goals of these institutions 

shifted, fewer resources were directed at 

providing for a quality of life for the people who 

resided there. Any federal money available to 

states was only available for purposes of building 

the facilities, and between 1950 and 1970, 

there was a building boom of these institutions 

in which states built, refurbished, or expanded 

institutions more than during any other time 

in American history. Despite the high level of 

building investment, by the 1960s, the largest 

institutions had become chronically understaffed, 

overcrowded, and underfunded.43 In particular, 

the horrific conditions 

at Willowbrook—the 

largest facility for people 

with intellectual and 

psychiatric disabilities 

in the country that 

housed more than 6,000 

people—prompted 

U.S. Senator Robert 

Kennedy to call the 

New York institution a 

“snake pit” in 1965.44

While Kennedy’s 

commentary brought about some minor changes 

at Willowbrook and other facilities of its kind, it 

was not until the media picked up the story in the 

late 1960s and early 1970s that Americans were 

confronted with the extent of the country’s moral 

failure to uphold the humanity of people with 

psychiatric and intellectual disabilities. 

Geraldo Rivera famously exposed New Yorkers 

to the horrifying conditions inside Willowbrook, 

and Bill Baldini similarly brought the conditions 

at Pennhurst State Hospital into living rooms in 

Pennsylvania.45 These reporters and others forced 

a nation to grapple with images that rivaled those 

that some remembered from black and white 

[T]hese sprawling institutions 

started in many cases as benevolent 

organizations with a mission to 

impart a “practical education” to the 

students who were expected to one 

day return to their communities....

However, as early as the late 1850s, 

the goal ... had already become 

strictly custodial in nature.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 43
newsreels following World War II. Americans 

now saw emaciated children who were unable 

to walk because they had never been lifted from 

their cribs, covered in flies, and lying in filth.46

They saw adults with hollow eyes wandering 

aimlessly, often sedated to keep them compliant 

and under control.47 These exposés led parents 

who had been told that they were doing the right 

thing by placing their children in the state’s care 

to file lawsuits to improve the conditions at these 

facilities, and led legislatures to increase or restore 

funding to improve conditions.48 Advocates and 

the legal community mobilized around these 

issues as well, working not only to improve the 

conditions in these large facilities, but also to 

ensure that people with psychiatric disabilities 

were afforded due process before being 

committed to a facility and to expand opportunities 

for integration in education and community 

services for people with intellectual disabilities. 

Civil Rights Expansion and Joining 

the Community

Deinstitutionalization

The deinstitutionalization movement led to 

major shifts in disability policy and the cultural 

understanding of disability. Since people under 

adult guardianship—even those who are in the 

aging population—are people with disabilities by 

definition, these changes impacted guardianship 

laws, drove many of the guardianship reforms 

outlined in Chapter 3, and continue to drive 

guardianship reform conversations today. 

More directly, guardianship played an integral 

part in deinstitutionalization. Many individuals 

44 National Council on Disability
who were slated to leave closing institutions 

were separated from their families as children. 

In order to move individuals who were 

determined to lack the ability to consent to new 

placements outside of the institutions, it was 

deemed necessary to find guardians who were 

willing to sign off on integrating them into the 

community.49 However, for a variety of reasons 

including estrangement from family or not 

having family members who were appropriate 

guardians, one study found that 1,643 individuals 

in institutional placement in Florida between 

1983 and 1985 were “incompetent” but did 

not have guardians who could help them with a 

move to a less restrictive setting.50 On the other 

hand, guardians 

have sometimes 

objected to moving 

individuals under 

their care into 

the community. 

Recently, advocates 

trying to implement 

“Money Follows the 

Person” federal grants designed to help move 

individuals into community settings have found 

that it can be difficult to obtain guardian consent 

to move the individual into the community.51 A 

report from the Connecticut experience with 

Money Follows the Person describes guardians 

who worry that their loved ones need 24/7 

care, that they will not be able to access in the 

community, or that the guardian will be expected 

to manage services on a day-to-day basis.52

Independent Living

Around the same time that society was 

awakening to the neglectful and cruel treatment 

of people with psychiatric, intellectual, and 

developmental disabilities in large institutions, 

people with disabilities themselves were 

beginning to demand better treatment in other 

segments of society. In 1962, the University of 

California at Berkeley admitted Ed Roberts as 

a student but forced him to live in the campus 

medical facility due to his quadriplegia and 

reliance on a ventilator after contracting polio 

as a teenager.53 Roberts organized his fellow 

students with disabilities on campus into a 

student group that began pushing the university 

to become more accessible and provide support 

services so that students with disabilities could 

live more independently.54 Roberts and others 

went on to found the Berkeley Center for 

Independent Living. 

The core values 

they established, 

“dignity, peer 

support, consumer 

control, civil 

rights, integration, 

equal access, and 

advocacy,” remain at 

the heart of the independent living and disability 

rights movements to this day.55 People with 

disabilities, their families, and advocates who had 

worked with them and witnessed some of the 

injustices first hand began to assert the right of 

people with disabilities to live in the world, “. . . on 

the streets, the highways and byways, in public 

buildings, and other public places, in the schools 

and colleges, in the public service and private 

callings, in the factories, shops and offices, in 

short, in all the places where men are, go, live, 

work, and play . . .” and to demand that the laws 

work toward the goal of integration for people 

with disabilities.56 People were awakening to the 

idea that people with disabilities could be fiercely 

[A]dvocates trying to implement “Money 

Follows the Person” federal grants 

designed to help move individuals into 

community settings have found that it can 

be difficult to obtain guardian consent to 

move the individual into the community.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 45
independent and, to the extent that they were 

viewed as dependent, that it might be a function 

of society’s failure to accommodate their different 

needs rather than a condition that was inherent in 

one’s physical or mental disability itself. 

Once people with both physical and mental 

disabilities began to insist on their independence, 

guardianship as a legal construct came under 

scrutiny. Guardianship is a protective measure 

that is predicated on the idea that people with 

disabilities are incapable of caring for themselves 

and that they need others to make decisions for 

them about their 

care, relationships, 

and other aspects 

of everyday life. 

One interviewee 

described it in the 

following way: 

“One other thing 

that is to me most 

frustrating is that 

the general public does not think of guardianship 

in increments . . . [W]hen you say guardianship, 

they think that the person can’t do anything . . . 

[They] will start speaking directly . . . to the 

guardian as opposed to the individual.” 

Rehabilitation Act

The Rehabilitation Act of 1973 was one of the 

earliest federal laws to recognize the civil rights 

of people with disabilities, providing that, “No 

otherwise qualified [person] with a disability 

in the United States . . . shall, solely by reason 

of her or his disability, be excluded from the 

participation in, be denied the benefits of, or be 

subjected to discrimination under any program or 

activity receiving federal financial assistance.”57

This kind of legislative language and much of 

the original law’s stated purposes to “prepare 

[those with the most severe disabilities] for and 

engage in gainful employment” and to “improve 

[people with disabilities’] ability to live with 

greater independence and self-sufficiency” was 

a marked departure in tone from the laws passed 

during the eugenics movement that presumed 

disability equated with burden and incapacity.58

Although the Rehabilitation Act had the 

potential to reduce discrimination against people 

with disabilities in education, employment, 

housing, transportation, medical care, and 

access to public 

spaces, this potential 

went unrealized for 

many years as the 

community waited 

for the Department 

of Health, Education 

and Welfare (HEW) 

to publish regulations 

that would implement 

the law.59 As noted in NCD’s 2003 report, 

Rehabilitating Section 504:

It took a nationwide sit-in at U.S. 

Department of Health, Education and 

Welfare (HEW) buildings by people with 

disabilities in 1977, including a monthlong occupation in San Francisco, to 

persuade the Federal Government to issue 

regulations implementing Section 504 of 

the Rehabilitation Act.60

As demonstrated in advocacy leading up to the 

passage of the Rehabilitation Act and the sit-ins 

that preceded its implementation, during this 

time, people with disabilities were beginning to 

find their voice politically, insist that they speak for 

themselves, and demand equal access in society.

People were awakening to the idea that 

people with disabilities could be fiercely 

independent and, to the extent that 

they were viewed as dependent, that it 

might be a function of society’s failure to 

accommodate their different needs....

46 National Council on Disability
Developmental Disabilities Assistance 

and Bill of Rights Act

In the late 1960s and early 1970s, advocates 

for people with intellectual and developmental 

disabilities were busy working toward passing 

federal legislation that they hoped would shift 

federal funding away from institutions, build 

up resources in the community, and guarantee 

certain fundamental rights for people with 

intellectual and developmental disabilities 

(ID/DD). This activism led to the creation of 

Developmental Disabilities Councils, the 

Protection and 

Advocacy for 

Developmental 

Disabilities 

program that 

provided legal and 

advocacy services 

to protect people 

with ID/DD from 

abuse and neglect; and to the passage of the 

Developmental Disabilities Assistance and Bill 

of Rights Act in 1975, which was an amendment 

to the 1963 Mental Retardation Facilities Act.61 

The introduction of the DD Bill of Rights was 

one of the first times that the individual human 

rights of people with disabilities were expressly 

recognized in a U.S. law. It required that people 

with disabilities be included in forming habilitation 

plans and expressly granted this population with 

privacy rights and rights to free association in the 

context of receiving services—ideas that were 

unheard of when things like eugenic sterilization 

and segregation were the norm.62

During this time period, policymakers 

increasingly recognized that people with 

disabilities, particularly those with intellectual 

disabilities, had not always been provided 

the opportunity to make and learn from their 

mistakes; they were denied the experience 

of the dignity of risk. As one family member 

interviewed for this report expressed, “[O]ne of 

the things that happens frequently for people 

with disabilities is they just literally are not 

accustomed to making choices because nobody 

gives them the opportunity.” Self-advocates 

and others argued that the focus on protecting 

people with disabilities, while important, is 

better accomplished when it is balanced with 

independence, personal autonomy, and the 

development of 

decision making 

skills. As another 

interviewee noted, 

“It’s not about 

protecting someone. 

It’s about teaching 

them how to best 

protect themselves.”

A Right to Public Education

Another important development that occurred 

during this time period was the Education for All 

Handicapped Children Act (EAHCA), which was 

later renamed the Individuals with Disabilities 

Education Act (IDEA). Passed in 1975, this law 

extended the right to a free and appropriate 

public education to children with disabilities who 

had often been denied entry into public schools.63

Additionally, it gave children with disabilities 

the right to an individualized education program 

(IEP) designed by the school with input from 

their parents, and it gave parents of children 

with disabilities procedural due process rights 

that gave them an opportunity to ensure that 

their child’s school was meeting its obligations.64

IDEA and its predecessor EAHCA demonstrated 

[The DD Bill of Rights] ... expressly 

granted ... privacy rights and rights to 

free association in the context of receiving 

services—ideas that were unheard of 

when things like eugenic sterilization and 

segregation were the norm.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 47
a dramatic shift in assumptions about what 

people with disabilities could expect from their 

lives. The expectation became a public education 

in integrated school settings that would prepare 

them for lives as independent adults, even if they 

continued to need services and supports into 

adulthood.

Community Integration

Section 504, the DD Bill of Rights Act, and 

EAHCA reflected a culture of changing 

expectations for people with disabilities; it 

was no longer unthinkable that children with 

intellectual disabilities would grow up to 

become integrated into the fabric of society 

and experience a sense of purpose. These 

changes were 

also taking place 

in a society that 

was experiencing 

massive cultural 

shifts in the 1960s 

and 1970s; many 

people whose 

human and civil rights had long been denied 

in the United States were being recognized as 

autonomous, self-determined actors worthy 

of full and equal recognition before the law.65

These cultural changes made viewing people 

with disabilities as anything other than fellow 

human beings much more difficult, and it led 

to skepticism of cultural norms and traditional 

sources of authority who had been complicit 

in the oppression of women, people of color, 

the LGBTQ community, and others, including 

“a growing intellectual skepticism of psychiatry 

which posited mental illness as a social construct 

and therapeutic intervention as a means to 

impose social conformity.”66 This “outsider 

critique” of psychiatry led mental health 

advocates to push to raise the bar regarding 

due process, making it more difficult for the 

state to use its police power to restrict the 

liberty of people with psychiatric disabilities 

by committing them to psychiatric hospitals 

and state institutions.67 Additionally, it fueled 

judicial decisions that raised the bar on civil 

commitments to the “danger to self and others” 

standard adopted by the Supreme Court in 

O’Conner v. Donaldson.

68

Mental health advocates’ approach was 

somewhat different than the approach of 

advocates for people with intellectual and 

developmental disabilities. While the due process 

arguments advanced by mental health advocates 

asserted a right to be 

free from unwanted 

treatment and 

from confinement, 

advocacy efforts 

for people with ID/

DD were often 

led by families 

whose essential demand was for services 

as well as integration. While advocates in the 

psychiatric disabilities community often raised 

legal challenges to confinement and fought for 

stronger due process protections to prevent 

unnecessary confinement, advocates in the 

developmental disabilities community often 

argued:

■ that if the need for treatment was the 

justification for confinement, that treatment 

needed to meet constitutionally mandated 

minimums in terms of quality; and 

■ that Section 504 of the Rehabilitation 

Act and the DD Bill of Rights Act of 1975 

The expectation became a public education 

in integrated school settings that would 

prepare them for lives as independent 

adults, even if they continued to need 

services and supports into adulthood.

48 National Council on Disability
contained an integration mandate that 

required services be provided in the least 

restrictive environment that would meet the 

needs of the individual.69

In other words, for people with psychiatric 

disabilities, advocacy focused on a right to be left 

alone, whereas for people with ID/DD, advocacy 

focused on a right to services in the community.70

One problem for people with ID/DD who 

want to receive services in the community 

rather than in institutional settings has been 

called the “institutional bias” in the Medicaid 

statute passed in 1965.71 Simply put, under the 

Medicaid statute, treatment in an institutional 

care facility for the developmentally disabled 

and nursing care received in a nursing home 

are mandatory services that states must agree 

to pay for as a condition of accepting matching 

federal funds. However, there is no requirement 

in the statute that states provide home- and 

community-based services.72 In 1981, the 

Omnibus Budget Reconciliation Act established 

the 1915(c) Home and Community Based 

Service Waivers (HCBS) program, allowing 

states to provide home- and community-based 

services to targeted groups of individuals as 

an alternative to institutional care.73 While this 

statute did not create an entitlement to HCBS, it 

did create a funding mechanism that states have 

used to rebalance their Medicaid programs and 

provide more services in the community.74 The 

waivers created a greater range of options for 

people with disabilities to receive supports that 

fit their needs and preferences and integrate in 

the community, and directed Medicaid providers 

to engage in person-centered planning with 

the people they served.75 This range of options 

created a more consumer-driven system, which, 

in some ways, enhanced the decision-making 

authority of people with disabilities. However, 

paradoxically, this array of community options 

has potentially driven an increase in the number 

of guardianships because of the perceived need 

to have a decision maker to determine which 

services the person with ID/DD needs or wants, 

although this is difficult to quantify given the lack 

of data on guardianships discussed in Chapter 4. 

As society continues to move toward 

greater community integration of people with 

disabilities, people with disabilities may need 

or want assistance making important decisions, 

such as where to live or work. Some may 

prefer that help to come from a guardian. One 

interviewee subject to guardianship reported, 

“I like having a guardian . . . they make sure 

that everything I do, I do the right way and they 

make sure that I’ll be happy.” Parents might also 

be concerned about the possibility not only that 

their children with disabilities will be unable to 

make choices about things like where to live 

and what services and supports they might 

need, but also that they might be vulnerable to 

exploitation or undue influence from individuals 

who are not acting in the best interest of their 

son or daughter. Parents who have advocated 

for their children with disabilities—often 

having to fight to get the school to provide 

the education their child was entitled to or to 

get the state Medicaid program to provide 

supports in the home and community—might 

understandably have a hard time imagining not 

making decisions for their children, whom they 

fear will not be able to advocate for themselves. 

These concerns might be driving what some 

have identified as an increase in the number of 

guardianships in the ID/DD population, but it’s 

difficult to prove because of a lack of available 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 49
data on guardianships generally, as we will 

explore in Chapter 4. 

The ADA Generation

In 1990, more than a decade after the DD Act 

and EAHCA, President George H. W. Bush signed 

the ADA into law. The ADA was first proposed in 

a 1986 groundbreaking report by NCD, Toward 

Independence.

76 The Council recommended 

that Congress “enact a comprehensive law 

requiring equal opportunity for [people] with 

disabilities, with broad coverage and setting clear, 

consistent, and enforceable standards prohibiting 

discrimination on the basis of handicap.”77 Unlike 

Section 504 of the Rehabilitation Act, which 

only outlawed 

discrimination on 

the part of programs 

receiving federal 

money, such a 

law would prohibit 

discrimination 

against people with 

disabilities in the same way that existing federal 

laws prohibited race and gender discrimination in 

virtually all areas of American life.78 Furthermore, 

the integration mandate of Title II of the ADA 

requires that states provide services, activities, 

and programs in the most integrated and least 

restrictive setting appropriate to the needs of 

qualified people with disabilities.79

In 1999, nearly a decade after the signing 

of the ADA, the U.S. Supreme Court handed 

down the Olmstead v. L.C. decision interpreting 

the ADA.80 The Supreme Court’s decision in 

Olmstead has been described as similar in 

importance to the disability community as the 

Brown v. Board of Education decision was to the 

black civil rights movement.81 Olmstead v. L.C. 

concerned two women with intellectual and 

psychiatric disabilities who had been deemed 

suitable for placement in the community 

by their doctors but had been denied the 

opportunity to move out of the Georgia state 

institution where they had lived for years.82 The 

Court held that the unnecessary segregation 

of people with disabilities in institutions may 

constitute discrimination based on disability.83

The Court further ruled that the ADA requires 

states to provide community-based services 

rather than institutional placements for people 

with disabilities if (a) community placement 

is appropriate, as determined by the state’s 

professionals; (b) the transfer is not opposed 

by the affected 

individual; and 

(c) the placement 

can be reasonably 

accommodated, 

taking into account 

the resources 

available to the 

state and the needs of others who are receiving 

state-supported services.84 The Supreme 

Court found that “[u]njustified isolation . . . [of 

people with disabilities] is properly regarded 

as discrimination based on disability,” and thus 

violates the ADA.85

Since the Supreme Court affirmed in 

Olmstead that unnecessary segregation and 

isolation of people with any type of disability 

is discrimination and violates the law, there 

have been countless legal complaints and 

initiatives to implement the broad policy goals 

spelled out in the decision: to affirm the right 

of people with disabilities to live in the world 

and to provide services in the least restrictive 

environment.86

The Supreme Court found that 

“[u]njustified isolation ... [of people 

with disabilities] is properly regarded as 

discrimination based on disability,” and 

thus violates the ADA.

50 National Council on Disability
Many of the guardianship reforms discussed 

in this report will rely on the fundamental 

principles of integration and least restrictive 

environments, as required both in the text of the 

ADA and in the Supreme Court’s interpretation 

of the ADA. As will be explored in Chapter 3 and 

also in Chapter 8, some scholars have argued that 

the integration mandate applies to guardianship 

and that guardianship itself may constitute a 

violation of the ADA in many cases.87

CRPD—The ADA Goes Global

In 2006, the CRPD was finalized and opened 

for signature and ratification.88 The CRPD is an 

international treaty that was inspired by U.S. 

leadership in recognition of the rights of people 

with disabilities.89 The CRPD is widely seen as 

an expansion of the ADA to the world stage, 

although in some of the particulars it is more 

informed by international human rights law than 

the American civil rights framework that formed 

the basis of the ADA. To date:

■ 175 countries have ratified or accessioned it.

■ 160 countries have signed it.90

■ 92 countries have ratified and signed the 

Optional Protocol, which establishes a 

complaint mechanism for violations of the 

Convention.91

The United States signed the treaty in 2009 but 

has not yet ratified it. NCD has repeatedly called 

for the ratification of the CRPD and reaffirms 

that recommendation in this report.92 The CRPD 

is a vital framework for creating legislation and 

policies around the world that embrace the rights 

and dignity of all people with disabilities. As we 

will see in the next chapter, it has had a profound 

impact in the countries where it has been ratified, 

including in the area of guardianship practices. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 51
52 National Council on Disability
Chapter 3: Evolution of Guardianship Law

Table 2. Timeline of Major Legislative and Policy Initiatives for Guardianship Law, 

1975–2017

1975–1985 ■ 1975: O’Conner v. Donaldson decision that led to standards of civil 

confinement

■ 1978: The Model Guardianship Statute was developed.

■ 1982: Uniform Guardianship and Protective Proceedings Act (UGPPA) 

1986–1999 ■ 1987: The Associated Press (AP) published Guardians of the Elderly: An Ailing 

System, a series of reports on the failures of guardianship law and lack of 

oversight.

■ 1987: The U.S. House Select Committee on Aging met to respond to the 

allegations laid out in the AP story.

■ 1987: The National Guardianship Association formed.

■ 1988: Held First National Guardianship Symposium “Wingspread”

■ 1989: UGPPA was amended.

■ 1997: UGPPA was revised.

2000–2010 ■ 2001: “Wingspan” conference took place at Stetson College of Law, Florida.

■ 2006: United Nations Convention on the Rights of Persons with Disabilities 

(CRPD)

■ 2007: The Uniform Guardianship and Protective Proceedings Jurisdiction Act

■ October 4, 2010: Yokohama Declaration Adopted by the First World Conference 

on Adult Guardianship Law, Yokohama, Japan

2011–2017 ■ 2012: The Third National Guardianship Summit created the Working 

Interdisciplinary Networks of Guardianship Stakeholders (WINGS).

■ 2012: New York County Surrogate Court decision, In re Guardianship of Dameris L,

that terminated a guardianship in favor of supported decision making.

■ 2013: New York, Oregon, Texas, and Utah piloted the WINGS groups.

■ 2013: Virginia court decision, Ross v. Hatch, recognizes use of supported 

decision-making as an alternative to permanent plenary guardianship.

■ 2016: The Elder Justice Innovation Grant expanded WINGS groups.

■ 2017: UGPPA revised to UGCOPAA

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 53
Erica Wood, a noted expert in guardianship 

who is referenced throughout this report, 

has described guardianship as having 

a “front end” and a “back end.”93 The front 

end refers to the procedures for determining 

the individual’s capacity and establishing the 

guardianship. The back end refers to the ongoing 

responsibility the guardian and the court have 

to the individual subject to guardianship, as well 

as the procedures for guardian oversight once 

the guardianship has been established. There 

is a long history of reform of both, particularly 

since the late 1980s. This chapter will trace the 

history of guardianship and guardianship reform 

and examine what reforms have already been 

tried and whether they have been successful. In 

some cases, these reforms are an integral part 

of ongoing issues in guardianship and will be 

discussed in greater detail later. Like the previous 

chapter, this chapter is not designed as a master 

class in guardianship reform; rather it is intended 

to survey the trends in guardianship law and 

highlight some of the issues in guardianship that 

led to these attempts to improve the system.

Ancient and British Roots

Guardianship may not be well understood 

in part because it is such a constant in our 

legal traditions. The son of the famous Greek 

playwright Sophocles attempted to obtain 

guardianship over his father as his health declined 

in his later years. Sophocles defended against 

the imposition of guardianship by reading from 

his latest play and the case was dismissed. 

Roman law allowed for the appointment of 

a “tutor” to manage the property of single 

women, orphans, and others who were not 

considered competent to manage property. 

However, the basis for American guardianship 

law is really British common law. Sometime 

in the late 1300s, the “royal prerogative” was 

enacted.94 It described the king as the “father 

and guardian of his kingdom” and established 

that it was his responsibility “to take care of 

those who, by reason of their imbecility and 

want of understanding, are incapable of taking 

care of themselves.”95 Guardianship did not arise 

out of the spirit of altruism so much as from the 

need for the sovereign to make sure that land 

could remain in the hands of people who could 

dispose of it and otherwise exercise the rights of 

property ownership. Over the centuries, this royal 

prerogative evolved and the crown discharged 

its duty through agencies or private citizens who 

were appointed as curators or guardians. 

Pre-Reform: Guardianship in America

American guardianship law is rooted in the royal 

prerogative as well, through its direct descendent 

the doctrine of parens patriae.

96 Parens patriae 

is Latin for “parent of the country,” and refers to 

the role of the state in taking care of those who 

cannot care for themselves.97 Federal power 

is derived from the Constitution, but under the 

10th Amendment, powers not expressly granted 

to the Federal Government are reserved to the 

states, including the common law doctrine of 

parens patriae.98 Therefore, guardianship remains 

a matter of state law. However, the state’s 

authority to act under the doctrine of parens 

patriae is limited by constitutional requirements 

as well as other federal laws due to the 

“Supremacy Clause,” which resolves conflicts 

between state and federal law in favor of the 

federal law.99

Initially, parens patriae was viewed as 

benevolent and there is little concern in early 

statutes with regard to due process. One scholar 

54 National Council on Disability
noted, “the states have traditionally exercised 

their parens patriae powers in an atmosphere of 

informality. Relaxed procedures were said to be 

justified because the proceedings were nonadversarial; the sole preoccupation of the court 

was to serve the individual’s best interest.”100

However, in the 1960s, advocates for people 

with intellectual and psychiatric disabilities began 

to push to make it more difficult to justify the 

use of the police power, which confers upon 

states the authority to act to promote the health, 

safety, and welfare of the 

community and confine 

individuals to institutions. 

Additionally, advocates 

began to assert that the 

state had an affirmative 

duty to treat the disability 

that had been used 

to justify the individual’s confinement rather 

than simply warehousing them in perpetuity.101

Eventually this advocacy led to the development 

of the standard for civil commitment outlined 

in O’Conner v. Donaldson that states cannot 

constitutionally confine, “without more,” a person 

who is not a danger to himself or others. The 

former category includes the suicidal and the 

“gravely disabled,” who are unable to “avoid the 

hazards of freedom” either alone or with the aid 

of willing family or friends.102 Subsequently, “all 

fifty states retooled their commitment laws to 

include adequate due process safeguards.”103

In addition to making it more difficult to 

commit a person to a mental facility or institution, 

the Supreme Court recognized a constitutional 

right to minimally adequate training related 

to the person’s liberty interest in avoiding 

unnecessary bodily restraint.104 Although these 

cases concerned the police power and do not 

directly apply in guardianship cases, they did lead 

to a changed understanding of the constitutional 

implications of infringing on individual liberty due 

to disability or supposed incompetence. 

Guardianship laws remained unchanged for 

more than 100 years and contained virtually no 

procedural due process protections. But in 1978, 

the American Bar Association developed a model 

guardianship statute, and in 1982, the Uniform 

Law Commission came out with the first UGPPA, 

now renamed the UGCOPAA.105 The 1982 UGPPA 

was a groundbreaking 

document that 

emphasized autonomy 

and limited guardianship 

or conservatorship. 

However, it would be 

several more years 

before states began 

to look to these models to improve their 

guardianship statutes. 

Late 1980s, Early 1990s: First Wave 

of Guardianship Reform

As had happened a little over a decade earlier 

when Geraldo Rivera shined a much-needed 

light on the conditions at Willowbrook, the first 

significant wave of guardianship reform can be 

traced back to media attention on abuses within 

the system. In 1987, the Associated Press (AP) 

published a series of reports titled Guardians of 

the Elderly: An Ailing System, which splashed 

across front pages all across the country 

stories from “a dangerously overburdened and 

troubled system” that stripped seniors of their 

rights with the “stroke of a judge’s pen,” and 

subsequently failed to monitor the actions of the 

guardian or hold them accountable for the wellbeing of the individual subject to guardianship.106

Guardianship laws remained 

unchanged for more than one 

hundred years and contained 

virtually no procedural due process 

protections ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 55
The U.S. House Select Committee on Aging 

responded by convening a hearing where 

Chairman Claude Pepper famously observed the 

following:

The typical [person subject to guardianship] 

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.107

Although Congress did not adopt reforms 

that year, in response to the public outcry 

that followed the AP 

story, most states 

began the process 

of reconsidering and 

revising their statutes. 

Additionally, the National 

Guardianship Association 

formed in 1987 and, 

shortly thereafter, developed first-of-its-kind 

standards of practice and a code of ethics 

for guardians.108 The Congressional hearing 

also laid the groundwork for the First National 

Guardianship Symposium held in 1988. Known as 

“Wingspread,” the conference brought together 

an interdisciplinary group of “judges, attorneys, 

guardianship-service providers, physicians, agingnetwork staff, mental-health experts, ethicists, 

academicians, and others . . .” who issued 31 

recommendations for reform of the 50 different 

guardianship systems across the country.109

These recommendations were relevant to 

every aspect of guardianship process, including 

procedural due process 

and legal representation, 

determining incapacity, 

and accountability of 

guardians.110

The Wingspread 

recommendations led 

to a comprehensive 

study of guardianship 

monitoring undertaken 

by the ABA Commission 

on the Mentally Disabled, 

the ABA Commission 

on Legal Problems of the Elderly, and the State 

Justice Institute (SJI).111 In addition to the study, 

SJI funded projects on guardianship monitoring, 

pioneering the use of volunteers to be the 

“eyes and ears” of the 

court in guardianship 

cases, and the use 

of a national model 

of judicial review of 

guardian performance.112

The National Probate 

Court Standards, which 

were published in 1993, incorporated some of 

the recommendations and the lessons learned 

from subsequent studies.113 As a result, state 

reform efforts that were ignited by the 1987 AP 

story were informed not only by the available 

models from the ABA’s model statute and/or 

In 1987, the Associated Press 

(AP) published a series of 

reports ... [about] “a dangerously 

overburdened and troubled system” 

that stripped seniors of their rights 

with the “stroke of a judge’s pen,” 

and subsequently failed to monitor 

the actions of the guardian or hold 

them accountable.

[T]he National Guardianship 

Association formed in 1987 and, 

shortly thereafter, developed firstof-its-kind standards of practice and 

a code of ethics for guardians.

56 National Council on Disability
the 1982 UGPPA, but also by the Wingspread 

recommendations and subsequent reform 

initiatives. Consequently, throughout the late 

1980s and early 1990s, state statutes were 

revised to include 

improved due process 

procedures, processes 

for determinations 

of capacity based on 

functional assessments 

rather than merely on 

diagnoses, and greater 

accountability, including 

reporting requirements and court monitoring 

practices. Finally, in 1997, the UGPPA was 

revised to emphasize limited guardianship, 

reporting requirements, and monitoring.114 Many 

states also established a preference for limited 

guardianship in their statutes and required 

courts to find that there was no appropriate less 

restrictive alternative to guardianship before a 

guardian could be appointed.115

These reform 

activities have been 

described as “a headlong 

rush of statutes, 

handbooks, training 

videos, legal and judicial 

curricula, and studies of 

public guardianship and 

court oversight.”116

Early 2000s: Second Wave of 

Guardianship Reform

These early reform efforts clearly led to vast 

improvements in the statutory framework of 

“I think we got the laws in pretty 

good shape, [but] it is less clear 

that these reform efforts were able 

to supplant deeply entrenched 

practices of guardianship law.”

—Interviewee

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 57
guardianship, but it remained apparent in the 

decades that followed that guardianship is a 

much better idea in theory than in practice. As 

one person interviewed for this report noted, 

“I think we got the laws in pretty good shape” 

but, she added, “it is less clear that these reform 

efforts were able to supplant deeply entrenched 

practices of guardianship law.” Unfortunately, 

as we’ll examine in later chapters, there 

continues to be a gap between the lofty goals 

of the reforms codified in statute and the way 

that guardianship plays out in individual states, 

jurisdictions, and courtrooms across the country. 

Realizing that there was more work to be 

done, in 2001, more than 80 national experts 

in guardianship law 

and practice gathered 

at Stetson College of 

Law in Florida for a 

conference that was 

dubbed “Wingspan,” 

in homage to the 

original “Wingspread” 

conference held more 

than a decade before. The conferees at Wingspan 

assessed the strengths and weaknesses of 

implementation of the past reforms and, at the 

close of the conference, made 68 additional 

recommendations for reform.117 In addition to 

the recommendations, the conference gave rise 

to a special edition of the Stetson Law Review 

that included articles prepared for the conference 

that largely examined whether the Wingspread 

reforms had been adopted and whether they had 

been transformative; and suggested avenues for 

better implementation.118

Overall, the Wingspan conference was less 

influential than its predecessor, offering mostly 

refinements to the original recommendations. 

However, it did aim to bring the still widely 

disparate state laws into greater alignment 

and addressed a concern that had largely been 

ignored by the Wingspread conferees: interstate 

jurisdictional issues. The first recommendation 

to come out of Wingspan encouraged “the 

development of procedures to resolve interstate 

jurisdiction controversies over which state’s 

court has jurisdiction to appoint a guardian.”119

Additionally, the recommendation encouraged 

states to develop procedures to facilitate 

the transfer of existing guardianship cases 

among jurisdictions. Largely based on this 

recommendation, the Uniform Law commission 

drafted the Uniform Adult Guardianship and 

Protective Proceedings 

Jurisdiction Act, which 

has since been enacted 

in all but five states.120

However, if “the 

challenge of Wingspan 

is the implementation of 

its recommendations,”121

as A. Frank Johns and 

Charles Sabatino wrote in the introduction to 

the special edition of the Stetson Law Review

devoted to papers emerging from Wingspan, 

then the success of Wingspan has been mixed. 

Present Day: Third Wave of 

Guardianship Reform

In many ways, we are in a “third wave” of 

guardianship reform right now, ushered in by the 

demographic tsunami of the aging baby-boom 

generation whose members are entering the 

age when they might be at risk of guardianship 

due to declining health, dementia, and acquired 

disabilities. Indeed, those over age 85 are already 

the fastest growing demographic—and that 

In many ways, we are in a “third 

wave” of guardianship reform 

right now, ushered in by the 

demographic tsunami of the aging 

baby-boom generation ...

58 National Council on Disability
does not even include the baby-boom generation 

members who are just now entering their 70s.122

The sheer number of people who are living 

longer will put a strain on all the systems that 

we have traditionally used to support people 

as they advance in age, including guardianship. 

Additionally, the famously independent baby-boom 

generation will not be likely to accept traditionally 

paternalistic models of support that undermine 

their independence and self-determination.

The Third National Guardianship Summit 

in 2012 built on the work of the two previous 

conferences, Wingspan and Wingspread. This 

summit focused on post-appointment guardian 

performance, including developing personcentered plans for the 

individual subject to 

guardianship; meeting 

responsibilities to 

the court, including 

reporting and facilitating 

the court’s monitoring 

of guardianships; and 

finally, involving the 

person in decision 

making and working toward restoring capacity 

whenever possible. The summit did not abandon 

the previous “wings” theme altogether; rather, 

the Working Interdisciplinary Networks of 

Guardianship Stakeholders, or “WINGS” groups, 

grew out of the summit. In 2013, the National 

Guardianship Network selected New York, 

Oregon, Texas, and Utah to pilot these WINGS 

groups, and each brought together stakeholders 

in each state to examine the state’s guardianship 

system and make recommendations. Six 

additional states were subsequently provided 

with small amounts of funding to bring together 

stakeholders, and an additional six states 

created similar groups that were unfunded for 

eighteen total groups. Finally, in 2016, the ABA 

Commission on Law and Aging, with the National 

Center for State Courts, received an Elder Justice 

Innovation Grant from the U.S. Administration on 

Community Living (ACL) to establish, expand, and 

enhance state WINGS groups. This grant provides 

funding for WINGS projects in eight states.123

The focus of WINGS groups in individual states 

varies, but in general the goal of the project 

is to “. . . improve the ability of state and local 

guardianship systems to develop protections less 

restrictive than guardianship, advance guardianship 

reforms, and address abuse.”124 The work of 

individual WINGS groups will be discussed later in 

the report. Several of the 

groups have undertaken 

studies of their state 

guardianship systems that 

have added to what we 

know about guardianship, 

which will be the focus of 

Chapter 4, and some have 

begun developing tangible 

solutions to some of the 

most difficult issues in guardianship, including 

advancements in the data collection, monitoring, 

and development of viable less-restrictive 

alternatives to guardianship. The WINGS groups 

are an important model for reform because they 

bring together local stakeholders from a variety of 

perspectives and create a nationwide network that 

allows for the effective sharing of information and 

ideas, allowing states to drive reforms supported 

in part by federal funding. 

In addition to the Third National Guardianship 

Summit and the WINGS groups, as indicated in 

Chapter 2, the adoption of the United Nations 

Convention on the Rights of Persons with 

[I]n general the goal of [WINGS 

groups] is to “... improve the ability 

of state and local guardianship 

systems to develop protections 

less restrictive than guardianship, 

advance guardianship reforms, and 

address abuse.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 59
Disabilities in 2006 has also been an important 

driver of guardianship reform worldwide in 

countries outside the United States. Article 12 of 

the CRPD provides that people with disabilities 

are entitled to “equal protection before the law” 

and requires states to recognize “that [people] 

with disabilities enjoy legal capacity on an equal 

basis with others in all aspects of life” and to 

“take appropriate measures to provide access 

by [people] with disabilities to the support they 

may require in exercising their legal capacity.”125

The implications of Article 12 mandates for 

guardianship law and the practice of substituting 

the decisions of a guardian for that of a person 

with a disability are staggering—particularly given 

the CRPD committee has 

taken the consistent and 

unanimous view that all 

forms of guardianship 

violate this article. As one 

scholar noted, “Article 

12 is arguably the most 

controversial provision 

in the Convention. It is 

also arguably the most 

important and ‘revolutionary.’”126

The Dawn of Supported Decision 

Making

The CRPD has led to a sea of change in 

guardianship laws of signatory countries, and, 

philosophically, it has impacted the way that 

guardianship is understood in the United States 

even though it has not been ratified by the United 

States as Dr. Robert Dinerstein summarized: 

“[A] contextual reading of the Article and its 

provenance certainly calls into question the 

continued viability of surrogate decision-making 

arrangements such as guardianship.” Important 

as some of the past reforms to guardianship may 

have been:

. . . they still accept the predominance of a 

legal regime that locates decision making 

in the surrogate or guardian and not in 

the individual being assisted. In contrast, 

supported decision making, which Article 

12 embraces, retains the individual as the 

primary decision maker, while recognizing 

that the [person] with a disability may need 

some assistance—and perhaps a great 

deal of it—in making and communicating 

a decision.127

This rejection of 

surrogate decision 

making in favor of 

supported decision 

making is a more 

fundamental paradigm 

shift than the reforms 

that began in the 1980s 

in that it does not simply 

improve the process for 

establishing guardianship in the hope of ensuring 

more accurate determinations of incapacity, 

nor does it simply insist that guardians ask for 

input from the individual subject to guardianship 

on important matters, or refrain from abusing, 

exploiting or neglecting them. Rather, supported 

decision making “aims to retain the individual as 

the primary decision maker but recognizes that 

an individual’s autonomy can be expressed in 

multiple ways, and that autonomy itself need not 

be inconsistent with having individuals in one’s 

life to provide support, guidance and assistance 

to a greater or lesser degree, so long as it is at 

the individual’s choosing.”128 One interviewee 

One interviewee described 

supported decision making as “what 

really good family and friends do.

It’s having conversations with each 

other about needs and wants and 

coming to a decision with their help 

when needed.”

60 National Council on Disability
described supported decision making as “what 

really good family and friends do. It’s having 

conversations with each other about needs and 

wants and coming to a decision with their help 

when needed.” 

This paradigm shift toward supported 

decision making was 

demonstrated in 2014 at 

the 3rd World Congress 

on adult guardianship, 

which was held in 

Washington, D.C. More 

than 360 participants 

from 22 countries on six 

continents presented on 

a variety of topics, but 

one consistent theme 

was how countries were attempting to align 

their guardianship statutes and practices with 

the Article 12 mandate. Many of the delegations 

that presented at the 

conference demonstrated 

how their countries have 

begun to conceptualize 

and, in some cases, 

implement supported 

decision making as 

a legal alternative to 

guardianship. Among 

others, the governments 

of Canada, Great Britain, 

Ireland, parts of Australia, 

parts of New Zealand, 

parts of Germany, 

Bulgaria, Israel, the Czech Republic, Norway, 

Sweden, and India have either adopted or are 

exploring adopting supported decision making.129

Supported decision making has become a 

very important part of the conversation around 

guardianship reform in the United States as well. 

Supported decision making is not only a concept 

driven by the CRPD, but it is also seen as a 

way to answer a fundamental challenge raised 

by Professor Leslie Salzman, who argued in a 

2010 law review article that substituted decision 

making (i.e., guardianship) 

is antithetical to the 

integration mandate 

outlined in the Supreme 

Court’s Olmstead

decision and subsequent 

case law. She argues 

“. . . that by limiting an 

individual’s right to make 

his or her own decisions, 

guardianship marginalizes 

the individual and often imposes a form of 

segregation that is not only bad policy, but also 

violates the [ADA’s] mandate to provide services 

in the most integrated 

and least restrictive 

manner.”130 An extensive 

examination of supported 

decision making follows 

in Chapter 8. 

Revising the UGPPA

The UGPPA was 

approved by the Uniform 

Law Commission in 

1982, amended in 

1989, and revised in 

1997. Nearly 20 states 

have adopted some version of the UGPPA.131

However, even where it has not been enacted, 

the UGPPA has had a profound influence on the 

development of U.S. guardianship law.132 In 2014, 

the Uniform Law Commission began the process 

[T]he governments of Canada, Great 

Britain, Ireland, parts of Australia, 

parts of New Zealand, parts of 

Germany, Bulgaria, Israel, the 

Czech Republic, Norway, Sweden, 

and India have either adopted or 

are exploring adopting supported 

decision making.

“ ... [B]y limiting an individual’s 

right to make his or her own 

decisions, guardianship 

marginalizes the individual and 

often imposes a form of segregation 

that is not only bad policy, but 

also violates the [ADA’s] mandate 

to provide services in the most 

integrated and least restrictive 

manner.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 61
of revising the UGPPA in order to implement the 

standards and recommendations of the Third 

National Guardianship Summit. The Uniform 

Law Commission approved the revised version 

of the model law, now called the UGCOPAA, on 

July 19, 2017. New Mexico is the first state to 

move to adopt the model legislation, which has 

passed in the state Senate.

While the UGCOPAA includes a number of 

important changes, perhaps the most crucial 

reform is that it 

recognizes the role of, and encourages the 

use of, less restrictive alternatives, including 

supported decision-making and single-issue 

court orders instead of guardianship and 

conservatorship. To 

this end, the revised 

Act provides that 

neither guardianship 

nor conservatorship 

are appropriate 

where the person’s 

needs could be met 

with technological 

assistance or decision-making support.133

The UGCOPAA makes several other changes 

to the model guardianship statute, including:

■ replaces the terms incapacitated person

and ward with individual subject to either 

guardianship or conservatorship;

■ strengthens notice requirement and 

prohibits waivers of notice;

■ raises the standard for excusing the absence 

of the individual who is allegedly incapacitated 

from “good cause” to “clear and convincing” 

evidence of limited circumstances that excuse 

the individual from attending;

■ requires capacity determinations to be 

based more on a functional rather than 

medical model;

■ increases use of “visitors” and 

professional evaluators to make capacity 

determinations; 

■ requires a court to state why a full 

guardianship is imposed rather than a 

limited guardianship;

■ requires the court order to state whether 

rights to marry and vote are retained;

■ requires individuals subject to guardianship 

and other interested parties to receive a 

statement of rights when the guardianship 

is established; 

The UGCOPAA focuses on the need 

to limit the use of guardianship and 

create alternatives that maximize the 

self-determination of those who may 

need decision making assistance ...

■ imposes additional 

requirements before 

a guardian may alter 

living situations

■ requires the guardian 

to frequently visit the 

person;

■ specifies when the court is required to hold 

a hearing to determine if a modification of 

the guardianship is needed, particularly upon 

receipt of communication by the individual 

or another interested party, such as a family 

member; 

■ requires courts to terminate guardianships if 

the petitioner establishes a prima facie case 

for termination, unless the legal basis for 

guardianship is met; and 

■ creates a process for a time-limited 

protective arrangement (e.g., to authorize a 

medical procedure or the sale of property) 

instead of guardianship. 

62 National Council on Disability
The UGCOPAA focuses on the need to limit 

the use of guardianship and create alternatives 

that maximize the self-determination of those 

who may need decision making assistance, 

but to also create mechanisms that enable 

those individuals to receive the right amount 

of assistance when they need it. Additionally, 

the model statute attempts to provide clarity 

and accountability in some areas that the 

previous statute had left within the realm of 

judicial discretion. Like the UGGPA before it, 

the result of this work is a groundbreaking 

document with a great deal of potential to 

transform guardianship—but, also like the 

previous iteration, its influence will depend 

on the willingness of states to adopt it and 

judges and lawyers to follow it both in letter 

and spirit. 

Jenny Hatch: The Face of the Third Wave of Reform

Model statutes can change laws, but it often 

takes a personal story to change hearts 

and minds. Few guardianship cases have 

received as much national attention as the 

Jenny Hatch case, even before the four-page 

glossy feature on her case in the February 

17, 2014, edition of People Magazine, as 

well as coverage on CBS News and in the 

Washington Post.

134

Jenny Hatch is an adult woman with Down 

syndrome living in Virginia who, before an 

unfortunate bike accident in 2012, lived a 

happy, productive, and independent life; was 

active in her community; and got by with 

minimal supports. After having surgery on 

her spine following the accident, Ms. Hatch 

moved in with her employers from the thrift 

store where she worked. Her parents filed 

a guardianship action, and she was placed 

under temporary guardianship and forced to move into a group home pending the outcome. 

Ms. Hatch hated the group home, saying that she felt like a prisoner.135 Ms. Hatch’s lawyers 

presented evidence that permanent guardianship was not necessary, as she was capable of 

managing her own life with supported decision making support from people she chose.136

The judge agreed in part, ruling that Ms. Hatch’s guardianship would be limited in scope 

(“medical and safety decisions”) and in time (one year), and that it would be with the 

Jenny Hatch

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 63
guardians of her choice. The judge also recognized the role of supported decision making, 

both within the one-year guardianship and after it terminated. The judge’s order also freed 

Ms. Hatch from the group home, allowing her to live in the community with her friends.

Since the ruling, Ms. Hatch has returned to live with her friends who own the thrift store 

where she worked and has traveled across the country, speaking at conferences and events 

about her experiences and the value of supported decision making.137 She has become an 

eloquent spokesperson on both the danger of overly restrictive guardianship and the need 

for alternatives such as supported decision making. From a legal standpoint, her case is 

significant because it, along with In Re Guardianship of Dameris L, is one of the earliest 

cases to recognize supported decision making as a viable alternative to guardianship, and 

her advocacy has provided attorneys for similarly situated clients with a powerful example 

of the value of this alternative. As Professor Jasmine Harris of the UC Davis School of Law 

wrote, “[t]he Hatch victory also resonates more broadly as a common rally point and mirror 

of the lived experiences of many other people with disabilities who are subject to the same 

presumptions of incompetence and incapacity.”138

Jenny Hatch: The Face of the Third Wave of Reform, continued

In conclusion, this “third wave” of 

guardianship reform has been fundamentally 

different than the earlier reform efforts, not only 

because it represents a fundamental shift from 

the surrogate decision making framework of 

guardianship—which previous efforts sought to 

limit but not fundamentally question—but also 

because supported decision making has more 

of the earmarks of a popular movement than 

some of the previous reform efforts. Not only 

are activists, scholars, lawyers, advocates, and 

others advocating to bring about systemic change 

to the guardianship system, but individuals like 

Ms. Hatch are also advocating for their right to 

self-determined lives and demanding that the 

legal system develop and recognize alternatives 

to guardianship, such as supported decision 

making. It is the experiences of Ms. Hatch, 

litigants who come after her, and participants in 

programs such as supported decision making 

pilot projects in Massachusetts,139 Texas,140 and 

New York141 that will shape guardianship reform 

in the future. Texas recently became the first 

state to recognize supported decision making 

in statute and to require courts to consider it 

before guardianship.142 Hopefully, this grassroots 

involvement will help circumvent some of the 

pitfalls of earlier reforms, which were often 

exciting in theory but disappointing in practice.

64 National Council on Disability
Although there is some disagreement 

about why, there is a general consensus 

that the guardianship system is not in 

much better shape than it was in 1987, despite 

decades of reform efforts. Chapter 4 will describe 

the current state of guardianship in broad 

strokes and will identify issues for more detailed 

examination in later chapters. 

The Current System Lacks Data

The lack of data on who is under guardianship 

or what happens to adults under guardianship 

is a constant source 

of frustration for 

anyone attempting 

to understand 

guardianship, much 

less those urging 

policymakers that there 

is an immediate need 

for resources to address problems arising from 

it. Erica Wood and Sally Balch Hurme, both of 

whom have studied guardianship for decades 

and worked tirelessly to improve it, note in their 

introduction to the special symposium issue of 

the Utah Law Review reporting out the results 

from the 3rd National Guardianship Summit that: 

[w]e as a nation are essentially working in 

the dark when describing adult guardianship 

practice. Data and research are scant to 

nonexistent. Many courts and states do 

not know the number of adults under 

guardianship in their jurisdiction, let alone 

the demographics.143

Data on the Number of People Subject 

to Guardianship

Brenda Uekert, Principal Court Research 

Consultant for the National Center for State 

Courts (NCSC), has probably spent more 

time “crunching the numbers” to develop a 

statistical picture of 

guardianship than any 

other researcher. After 

decades of studying 

guardianship, she 

estimates that there 

are 1.3 million active 

adult guardianship 

or conservatorship cases and that courts 

oversee at least $50 billion of assets under adult 

conservatorships nationally.144 This estimate is 

based on the handful of states that do track and 

report reasonably reliable data on guardianships; 

however, Dr. Uekert notes that there is wide 

variation among the states and it is difficult to 

extrapolate what we know from a few states to 

the country as a whole. Additionally, most states 

do not adequately sort data in a way that allows 

Chapter 4: The Current Guardianship System 

in America 

“Data and research are scant to 

nonexistent. Many courts and states do 

not know the number of adults under 

guardianship in their jurisdiction, let 

alone the demographics.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 65
researchers to draw accurate conclusions from 

the available data. Dr. Uekert observes: 

. . . few states are able to report complete 

statewide adult-guardianship caseload 

data, because these cases are counted in 

a generic probate case type or otherwise 

blended into civil caseload statistics. 

A number of states cannot distinguish adult 

guardianships from adult conservatorships 

as distinct case types. Other states include 

both juvenile and adult guardianships in a 

single “guardianship” case type.145

It goes without 

saying that if we do 

not know how many 

guardianships there 

are, we also cannot 

say for sure whether 

guardianship is a 

growing trend or if its 

popularity is waning, 

making it difficult to urge policymakers to address 

the problems in guardianship, since it is difficult 

to prove that the problems are, in fact, growing. 

Data on the Number of Filings

Despite the lack of reliable data, there is some 

evidence that suggests that the number of 

adults subject to guardianship has been rising. 

In 2009, the National Center for State Courts 

asked 187 respondents to respond to a survey 

distributed through association listservs such 

as the National College of Probate Judges, the 

National Association for Court Management, 

and the American Judges Association. The goal 

of the study was to ascertain how guardianship 

filings had changed over the previous three 

years. Most respondents said that filings had 

stayed the same; however, 37 percent noted an 

increase in petitioners seeking guardianship over 

a person who allegedly lacked capacity and only 

4.28 percent noted a decrease. This means that 

the number of new petitions for guardianship 

is either staying the same or rising, but almost 

certainly not decreasing. Similarly, a significant 

minority of 43 percent noted an increase in the 

number of open, ongoing guardianships over 

the past three years, another indication that the 

number of guardianships may be on the rise.146

However great or small the increase may 

have been in recent years, looking to the future, 

it is very likely that 

the need for decision 

making assistance will 

grow in the years to 

come: 

The need for 

guardianship and 

other surrogates 

will grow as the population ages, and as 

the prevalence of Alzheimer’s disease, 

the number of “old old,” and the number 

of [people] with intellectual disabilities, 

mental illness, and traumatic brain injury all 

increase.147

After all, the anticipated rise in the senior 

population is well-documented and fueling 

concerns about demands on the already 

overstretched direct-care workforce.148 It is 

also possible that, even though their numbers 

are likely to be more stable over time, more 

young adults with disabilities are being made 

subject to guardianship as states rebalance 

their systems in favor of community options. It’s 

possible that guardianship among this population 

is more prevalent now because parents of 

... [F]ew states are able to report 

complete statewide adult-guardianship 

caseload data, because these cases 

are counted in a generic probate case 

type or otherwise blended into civil 

caseload statistics.

66 National Council on Disability
adults with disabilities see guardianship as a 

way to continue to manage care and services 

in the community, whereas a generation ago 

those services would have been provided in 

the closed system of an institution. However, 

without better data that could track the number 

of guardianships over time and describe at least 

the basic characteristics of individuals subject to 

guardianship, there is no way to say definitively 

what the trends in guardianship are. This is 

problematic because “[t]he starting point of any 

major reform is an accurate picture of the policy 

in need of reform; in this case, that means at a 

minimum that states 

are able to count the 

number of incoming 

and outgoing adult 

guardianships in 

the state courts.”149

Unfortunately, in the 

case of guardianship, 

that is something we 

cannot currently do. 

Despite the recent interest in the topic that has 

given rise to a number of the studies reported 

here, a comprehensive picture of guardianship 

trends is unlikely to become clear unless states 

begin regularly gathering and reporting accurate 

and comparable data. 

What Is Known from Limited Data

Without reliable data, it’s difficult to describe 

the extent of the problems in guardianship 

or to quantify the number of good or bad 

outcomes. However, continual and pervasive 

anecdotal data and what limited quantifiable 

data does exist strongly suggest there are very 

serious problems. Several notable studies have 

been done that attempt to ascertain whether 

guardianships are working as intended and to 

identify problem areas. Additionally, state task 

forces, including those funded as “WINGS” 

projects, have examined state guardianship 

programs, and national and local press reports 

continue to highlight some of the ongoing 

problems in guardianship. Generally speaking, 

these sources all point to problems that involve a 

lack of information about alternatives, insufficient 

due process when a guardianship arises, a 

failure of courts to monitor guardianships and 

abuse, neglect or exploitation by guardians 

and conservators, and a lack of an appropriate 

response to the 

concerns of families or 

individuals subject to 

guardianship. Although 

each of these issues 

will be addressed in 

greater depth later 

in the report, a brief 

review of available 

information will help 

characterize and summarize the current state of 

guardianships today. 

2014 SSA Representative Payee Report

In 2014, the Social Security Administration (SSA) 

conducted research in response to repeated calls 

to do a better job coordinating its “representative 

payee” program with state guardianship 

systems. In order to do that, SSA asked the 

Administrative Conference of the United States 

(ACUS), which then worked with NCSC, to study 

current guardianship laws and practices. ACUS 

researched state guardianship laws and court 

practices, conducted a survey regarding court 

practices in guardianship, and interviewed nine 

state organizations or entities related to adult 

“The starting point of any major reform 

is an accurate picture of the policy in 

need of reform; in this case, that means 

at a minimum that states are able to 

count the number of incoming and 

outgoing adult guardianships in the 

state courts.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 67
protective services or foster care to evaluate 

their practices with respect to guardianship. 

The findings of the study were interesting and 

informative, although the authors caution that it 

is not based on a representative sample, making 

it difficult to say with certainty whether these 

findings reflect guardianship nationally. The major 

findings of the study include the following:

■ Approximately 75 percent of guardians were 

friends, family, or acquaintances as opposed 

to professional or public guardians.

■ 60 percent of court respondents in the 

survey do not review the credit histories 

of potential 

guardians, 

and about 4 

in 10 do not 

conduct criminal 

background 

checks. 

■ 47 percent of 

the courts in the 

survey inquired 

about a potential 

guardian’s 

representative 

payee status with respect to the individual 

for whom they are guardian.

■ 75 percent of the courts in the survey 

required inventory filings at or near the 

time of the appointment of guardians of the 

property in all cases, and about two-thirds of 

respondents indicated annual accounts are 

required as well. 

■ 75 percent of all respondents indicated that 

at least some of the financial accounting 

forms are subject to audits or a similar type 

of evaluation, usually conducted by court 

staff or judges themselves. It’s unclear how 

thorough these audits are. 

■ Approximately 66 percent of respondents 

indicated that they currently use some kind 

of electronic case management database for 

guardianship cases, and a small additional 

number of respondents said they expected 

to be using one by 2017. 

■ Approximately 66 percent of court 

respondents indicated that the court had 

sanctioned a guardian for failure to fulfill 

their obligations, misconduct, or serious 

malfeasance within 

the past three years. 

In these cases, the 

court removed the 

guardian or issued 

an order requiring 

the guardian to show 

cause why they had 

failed in their duty or 

cited the guardian for 

contempt for failing 

to comply with the 

statute or with a court 

order. However, in 

most cases, the action taken was only noted 

within the guardianship file.150

2010 Study of the National Center 

for State Courts’ Center for Elders 

and the Courts 

A 2010 study conducted by the National Center 

for State Courts’ Center for Elders and the 

Courts (CEC) on behalf of the Conference 

of Chief Justices/Conference of State Court 

Administrators (CCJ/COSC) Joint Task Force on 

[T]he fact that courts are not able to 

definitively report the number of open 

guardianship cases ... is indicative 

of what is widely acknowledged to be 

incredibly lax monitoring ..., despite 

statutory reforms requiring guardians 

to provide courts with annual reports 

regarding the welfare of the individual 

and accountings detailing how their 

resources are being spent.

68 National Council on Disability
Elders and the Courts, examined the availability 

and correctness of adult guardianship data; 

the adequacy and training of guardians; and 

promising practices for guardian recruitment, 

retention, and training.151 The study’s authors 

again warned that results are not nationally 

representative. In addition to noting the 

lack of reliable data and that the number of 

guardianships seemed to be on the rise as noted 

previously, their major findings included the 

following: 

■ Securing and retaining family and friends to 

act in the capacity of guardian is problematic 

for half of the reporting jurisdictions.

■ There is considerable need for additional 

public and private professional guardians. 

The greatest need for training is for family 

and friends serving as guardians.

■ Guardianship monitoring efforts by the 

courts are generally inadequate.152

State Data

Nationwide studies are one way to try to capture 

the current state of guardianships. Another way 

is to look at available data from selected states. 

Since each guardianship system is unique, it can 

be difficult to compare state systems. However, 

the WINGS effort has led to a number of states 

taking a close look at their guardianship systems 

to identify areas for improvement. 

Some brief examples of findings from several 

of these studies follow: 

New York

A recent study by the Brookdale Center for 

Healthy Aging at Hunter College reviewed 2,414 

Article 81 cases files across New York State. 

Because New York has a separate guardianship 

statute for people with ID/DD, cases involving 

people with ID/DD were not included in this 

data. Of the cases opened, they found that the 

court appointed a guardian 68 percent of the 

time, or 1,636 cases. Further, they found that 68 

percent of the individuals subject to guardianship 

were female; 59 percent were over age 65; and 

dementia was the reason for incapacity in 41 

percent of cases, with psychiatric disability as the 

reason in 20 percent of cases.153 In 43 percent of 

cases, a family member or friend petitioned to be 

guardian, and in those cases, a family member or 

friend was appointed in 86 percent of cases. 

Texas

The Texas State Office of Court Administration 

reviewed a total of 165 guardianship cases filed 

in 2013 in 14 selected counties that were a 

mix of semiurban and rural jurisdictions. Of the 

individuals subject to guardianship, they found 

a fairly even division between male and female, 

with 55 percent being male. Seventy-four percent 

lived at home either in their own home or, in 

some cases, the family home, in the community 

when the petition for guardianship was filed, with 

21 percent living in a long-term facility such as 

a nursing home. Fifty-one percent of the cases 

filed involved an individual who was turning 18. 

In terms of the characteristics of the guardian, 85 

percent were family members, 10 percent were 

public guardians or Department of Aging and 

Disability Services (DADS) cases, and 6 percent 

involved the appointment of a private professional 

guardian.154

Indiana

The Indiana Adult Guardianship State Task Force 

is a multidisciplinary workgroup convened 

to examine the adult guardianship system in 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 69
Indiana. In a comprehensive 2012 report, they 

found that there are approximately 7,000 people 

who are subject to guardianship in Indiana. Of 

the new guardianship cases filed in a selected 

sample of 14 counties, 25.8 percent involved 

an allegation that the AIP had dementia; 

22 percent involved a person who had cognitive 

or intellectual disabilities; 10.5 percent involved 

a person with severe mental illness; 5.4 percent 

were stroke related; 5 percent were related to an 

acquired head injury; 1.4 percent involved chronic 

intoxication; and 1.4 percent involved other 

conditions associated with old age. An additional 

15.1 percent of the cases were classified as 

“other” and in the remaining 13.4 percent of the 

cases no reason for the incapacity was specified 

in the file.155

What the Lack of Data Means

Not only is the lack of robust data in 

guardianships troubling because it leaves us 

without an accurate picture we can use to craft 

effective policy, it is actually indicative of a larger 

problem. Courts are supposed to be monitoring 

guardianships in order to protect individuals 

subject to guardianship from abuse, neglect, 

and exploitation at the hands of their guardians 

and to make sure that guardians continue only 

as are necessary. However, the fact that courts 

are not able to definitively report the number of 

open guardianship cases at a given point in time 

is indicative of what is widely acknowledged to 

be incredibly lax monitoring on their part, despite 

statutory reforms requiring guardians to provide 

courts with annual reports regarding the welfare 

of the individual and accountings detailing how 

their resources are being spent. 

The National Center for State Courts’ (NCSC) 

Conservatorship Accountability Project is working 

with several grantee states on developing 

accounting and tracking processes and 

safeguards that will not only protect vulnerable 

adults from financial exploitation, but also provide 

a template for streamlined and compatible case 

management platforms that would make it 

relatively easy to collect and compare data on a 

statewide and even nationwide basis.156 We will 

examine the deficiencies in monitoring practices 

that leave individuals subject to guardianship 

vulnerable to abuse, neglect, and exploitation 

in more depth in Chapter 7, as well as highlight 

some promising practices. 

Does Guardianship Prevent Abuse 

or Lead to It? 

U.S. Government Accountability Office 

(GAO) Reports on Guardianship

Particularly in the past decade, there is renewed 

concern regarding elder abuse and whether 

guardianship is an effective tool against potential 

abusers or a tool that gives potential abusers 

carte blanche to commit acts of abuse. GAO has 

twice been asked to review whether abusive 

practices by guardians are widespread, releasing 

reports in 2010 and another in 2016. The 2016 

report noted, “[t]he extent of elder abuse by 

guardians nationally is unknown due to limited 

data on the numbers of guardians serving older 

adults, older adults in guardianships, and cases 

of elder abuse by a guardian.”157 However, 

the 2010 GAO report “. . . identified hundreds 

of allegations of physical abuse, neglect and 

financial exploitation by guardians in 45 states 

and the District of Columbia between 1990 and 

2010.”158 These included cases ranging from 

financial neglect where bills simply went unpaid, 

leading to foreclosure; cars being repossessed; 

electricity being shut off; and credit being 

70 National Council on Disability
destroyed; to cases where guardians were able 

to siphon millions from individuals subject to 

guardianship (both senior and young adults); 

to at least one case where the guardian falsely 

claimed the individual subject to guardianship 

had terminal cancer and 

moved her into hospice 

care where she later 

died from the effects of 

morphine.159

Notably, both GAO 

reports are careful 

to assert that these 

are nongeneralizable 

examples. Nonetheless, 

while the examples of abuse GAO uncovered are 

only illustrative, it is apparent from the totality 

of available evidence regarding guardianship 

practices, that courts are not currently able to 

safeguard individuals against abuse, neglect, and 

exploitation committed 

by guardians. While it 

cannot be said that the 

findings of the GAO 

report demonstrate that 

abuse is occurring in the 

majority of guardianship 

cases, it would also be 

a mistake to assume 

that GAO only found and 

reported on the outliers. 

The GAO reports raised significant red flags 

for Congress, which passed the Elder Abuse 

Prevention and Prosecution Act of 2017.160 The 

Act addresses elder abuse beyond guardianships, 

but specifically authorizes grants issued under 

the Elder Justice Act to assess guardianship and 

conservatorship proceedings and to implement 

changes deemed necessary based on these 

assessments, including mandating background 

checks for guardians, implementing systems 

to enable more consistent filing of annual 

accountings, and reports as well as regular 

auditing of this information. 

Those who find 

the status quo of 

guardianship acceptable 

often view the existing 

system as one which 

provides needed 

protection to people who 

are vulnerable to abuse 

or exploitation. One 

professional guardian 

interviewed for this report explained, “[F]or 

somebody who is financially exploited, oftentimes 

the guardianship is the only way to protect them.” 

While this concern is valid, so is the concern 

that guardianship itself may lead to negative or 

abusive outcomes. The 

Elder Abuse Prevention 

and Prosecution Act 

is an important step 

toward getting a handle 

on this problem, once 

deemed local, that has 

the potential to become 

a national crisis as the 

population ages. 

Investigative Reporting

Investigative reporters have also taken up 

this question, and the results have been 

disconcerting. In July 2016, the Texas Observer

reported on the Texas guardianship system in a 

report entitled, Who Guards the Guardians, very 

much painting a picture of a system in crisis. The 

report details the case of a professional guardian 

[T]he 2010 GAO report “... identified 

hundreds of allegations of physical 

abuse, neglect and financial 

exploitation by guardians in 

45 states and the District of 

Columbia between 1990 and 2010.”

[W]hile the examples of 

abuse ... are illustrative and not 

generalizable, it is apparent ...

that courts are not currently able to 

safeguard individuals against abuse, 

neglect, and exploitation committed 

by guardians.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 71
who was accused of charging individuals for 

whom he served as guardian large percentages 

of their income, failing to visit them in their 

nursing homes and selling off their homes and 

possessions, often without their knowledge, and 

pocketing a share of the proceeds for himself. 

According to the report, this went on for years 

before he lost his license to be a professional 

guardian. The judge who oversaw all 1,425 

guardianship cases in the county finally appointed 

the wife of the discredited professional guardian 

to many of his former cases. She was later 

fined $25,000 total 

for 51 additional legal 

violations.161

Another recent case 

in Nevada has garnered 

considerable media 

attention. In March 2017, a professional guardian 

was indicted as the alleged ring-leader of a 

criminal syndicate. She and three associates 

were charged with more than 200 felony counts 

in a scheme to bilk clients with disabilities and 

senior clients out of their life savings.162

Finally, a compelling article appeared in the 

New Yorker in October 2017 that reviewed several 

cases where a professional guardian had seemed 

to take over the lives of senior individuals, 

removed them from their homes, separated them 

from loved ones, and charged them what seemed 

to be exorbitant amounts for guardianship 

services they had never asked for or wanted.163

Although the previously mentioned accounts 

may lead one to conclude that it is only 

professional guardians who are problematic and 

that family guardians are less likely to abuse 

individuals subject to guardianship, there exists at 

least some data to the contrary. 

A recent Minnesota study found that of 

31 cases of financial 

exploitation, 24 involved 

a family member. In 

fact, “. . . closer analysis 

of family relationships 

showed that the greatest 

number of victims were exploited by their own 

children, followed by siblings and then other close 

relatives.”164 Professional guardians are frequently 

called in to manage a person’s affairs when family 

members are either feuding with each other over 

the individual who is allegedly incapacitated or 

when the person has been abused, neglected, 

or exploited by a family member. We will explore 

these issues further in Chapter 7.

A recent Minnesota study found that 

of 31 cases of financial exploitation, 

24 involved a family member.

72 National Council on Disability
Introduction

As explored in Chapter 1, there was a 

time when personal characteristics such 

as race, gender, and having a label of 

disability were enough to deny an individual the 

basic rights of citizenship. Historically, determining 

that a person needed a guardian or involuntary 

commitment to an asylum due to “insanity” 

was predicated on very amorphous standards. 

For example, in 1742, the Rhode Island general 

assembly codified “[a]n act 

empowering several town 

councils of this colony to 

have the care and oversight 

of all persons who are 

delirious, distracted, or noncompos mentis, and their 

estates.”165 In 1822, the 

legislature updated the law 

and replaced “delirious and 

distracted” with what at the 

time was considered more scientific designations 

of “idiot” and “lunatic.”166 Despite the sheen of 

science being added to state guardianship statutes 

across the country in the early 19th century, well 

into the 20th century, not even physicians’ reports 

were deemed essential to determining capacity 

(“competency”), and socially inappropriate 

behavior, forgetfulness, or bewilderment could 

form the basis of a judicial label of insanity. Judges 

made similarly unscientific determinations of 

incompetence for reasons of age, intellectual 

disability, and even alcoholism.167

Today, at least in theory, every individual who 

is 18 or older: 

is presumed to possess the requisite 

level of capacity. All adult individuals are 

presumptively able to 

avail themselves of 

legal protections, to 

make legally binding 

decisions, and to 

be held responsible 

for their actions and 

decisions . . . Today, 

lack of capacity must 

be proven affirmatively, 

often by clear and 

convincing evidence.168

Present day determinations of incapacity are 

usually based on a combination of medical and 

functional criteria, and courts rely heavily on 

the input of physicians and other professionals 

who purportedly have expertise in determining 

capacity.169

Chapter 5: Capacity and the Role of “Experts” 

in Guardianship Proceedings

Present day determinations of 

incapacity are usually based on 

a combination of medical and 

functional criteria, and courts rely 

heavily on the input of physicians 

and other professionals who 

purportedly have expertise in 

determining capacity.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 73
The guardianship reforms of the past 

30 years have largely focused on limiting who 

is subject to guardianship, limiting guardianship 

to specific areas in which the individual lacks 

capacity, and statutorily mandating strict due 

process procedures that should lead to fair and 

thoroughly tested outcomes that meet a high 

standard of proof. Accordingly, many statutes now 

specifically require medical documentation and 

often an independent evaluation by a physician 

who advises the court whether, in his or her 

professional opinion, the individual has capacity. 

However, some of the same reformers who 

had hoped to improve the quality, accuracy, and 

fairness of capacity evaluations to make sure 

that only individuals who truly lack capacity are 

subject to guardianship are beginning to consider 

the possibility that capacity is problematic and 

rooted more in the ideological construct of liberal 

autonomy and lacks a verifiable or scientific 

basis.170 In this chapter, we will explore the 

legal and philosophical bases of “incapacity” as 

justification for legal interference with individual 

autonomy.171 We will also examine how incapacity 

determinations are made and discuss whether fair 

and consistent determinations are possible, either 

under the current systems or after further reform.

Moving Away from the “Reasonable 

Man” Standard of Capacity

Philosophical Origins

As discussed briefly earlier in this report, 

individual autonomy is a cornerstone of western 

philosophy and is particularly important in the 

American constitutional system. Influential 

German philosopher Immanuel Kant developed 

this philosophy, which was later expanded upon 

by English philosopher John Stuart Mill. While a 

deep investigation of the ideas of these influential 

philosophers is well beyond the scope of this 

report, it is worth noting that the basis for our 

cultural and legal assumptions about autonomy 

and liberty, which ultimately give rise to the legal 

concept of “capacity,” are as much philosophical 

as they are medical. In Kant’s view, the ability 

to decide how to live one’s life is the most basic 

autonomy right.172 These ideas heavily influenced 

the founding fathers, as indicated by the 

Declaration of Independence assertion that “all 

men are created equal, that they are endowed by 

their Creator with certain unalienable Rights, that 

among these are Life, Liberty and the Pursuit of 

Happiness.”173

In the justice system, when something bad 

happens as a result of an individual’s actions, 

their legal responsibility often depends whether 

and to what extent they engaged in a rational 

thought process leading to the consequences. 

Specifically, they may be described as having 

acted intentionally, recklessly, or negligently. 

In particular, in determining whether a 

particular action was negligent, courts try 

to determine what the “reasonable man” 

would have done under the circumstances. 

The reasonable man has been described as 

someone whose every behavior commands 

admiration: 

. . . He is one who invariably looks where 

he is going, and is careful to examine the 

immediate foreground before he executes 

a leap or a bound; . . . who believes no 

gossip, nor repeats it, without firm basis 

for believing it to be true; . . . who in the 

way of business looks only for that narrow 

margin of profit which twelve men such as 

himself would reckon to be ‘fair’ . . . ; who 

74 National Council on Disability
uses nothing except in moderation, and . . . 

is meditating only on the golden mean. 

Devoid, in short, of any human weakness, 

with not one single saving vice, sans 

prejudice, procrastination, ill-nature, avarice, 

and absence of mind, . . . this excellent but 

odious character stands like a monument in 

our Courts of Justice, vainly appealing to his 

fellow citizens to order their lives after his 

own example.174

The reasonable man, when he is being an 

economic actor, is often fancifully referred to 

as homo economicus, in that he is consistently 

rational and narrowly self-interested. Mill 

described the “economic man” as “an arbitrary 

definition of man, as a being who inevitably 

does that by which he may obtain the greatest 

amount of necessaries, conveniences, and 

luxuries, with the smallest quantity of labour 

and physical self-denial with which they can be 

obtained.”175 These concepts of who we are as 

human beings, how we make decisions, and 

why we are possessed of the right to make 

decisions at all are critical concepts that give rise 

to the very idea that a person can be accurately 

described as having or lacking capacity; even as 

our understanding of “capacity” as a concept 

has evolved over time and become more 

complex and has expanded to include people 

that were not always given credit as capable of 

rational thought. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 75
Behavioral Economics

The work of Nobel Prize winner psychologist 

Daniel Kahneman, the late psychologist Amos 

Twersky, and 2017 Nobel Prize–winning 

economist Richard Thaler—known as the 

founders of “behavioral economics”—have 

revolutionized our understanding of human 

decision making, revealing a process that is very 

different from the “rational utility maximization 

presumed by neoclassical economics.”176 The 

field of behavioral economics has largely proved 

that the majority of our decisions are not the 

result of careful consideration. In fact, when 

Dr. Thaler was asked 

how he intended to 

spend his Nobel prize 

money, he quipped, 

“I will try to spend 

it as irrationally as 

possible.”177 Behavioral 

economics shows that 

an individual’s behavior 

in making choices 

departs from exclusive 

rational choice behavior 

because of instances of failures to act in one’s 

own interests, which can be said to be irrational 

behavior. 

Behavioral economics not only calls into 

question whether humans act rationally with 

respect to economics, but it undermines the 

fundamental belief that our decisions are based 

in reason. Yet, the guardianship paradigm 

assumes that people are entitled to rights in 

proportion to their ability to exercise the reason 

necessary to make autonomous decisions. 

It seems basically unjust to take away the right 

of a person with disabilities to make their own 

decisions when there is growing evidence that 

no one—including a court-appointed guardian—

makes decisions on a rational basis. 

Capacity Determinations

Who Decides Capacity?

Because there is a legal presumption that 

individuals who have reached the “age of 

majority” have capacity, it is generally not until a 

judge determines that one lacks capacity that a 

person can be said to be incapacitated. Although 

a person may have a particular diagnosis and 

seem to those around him to lack the ability 

to make or communicate a decision, he is still 

entitled to exercise his 

fundamental rights in a 

variety of ways. However, 

doctors, landlords, 

bankers, and others may 

nonetheless refuse to 

treat, rent to, or conduct 

business with a person 

they perceive to lack 

capacity, for fear that 

the person is not able 

to understand what is 

happening, which could ultimately expose them 

to liability. This is especially true of doctors and 

some other professions that require gaining one’s 

“informed consent” before acting (e.g., medical 

treatment). However, having a doctor refuse to 

treat a person based on his or her assessment 

that an individual is not capable of giving 

informed consent to a procedure has limited legal 

consequences for that individual; the person is 

free to keep looking for a doctor who will allow 

them to consent to the procedure. 

In many states, although not all, it is only 

when a judge finds that there is “clear and 

convincing evidence” that the person lacks 

Behavioral economics ... undermines 

the fundamental belief that our 

decisions are based in reason. Yet, 

the guardianship paradigm assumes 

that people are entitled to rights in 

proportion to their ability to exercise 

the reason necessary to make 

autonomous decisions.

76 National Council on Disability
capacity that that determination is binding and 

the person will either need a guardian, or an 

agent using a valid “power of attorney” or health 

care proxy to consent to the procedure.178

“Expert” Evidence

While, generally 

speaking, only a judge 

can take away the right 

of an adult to act on 

his or her own behalf 

and appoint a guardian 

to make and carry 

out decisions for him 

or her, this decision 

is determined by the 

evidence presented 

to the judge. The overwhelming majority 

of state guardianship statutes require the 

submission of evidence by a medical expert.179

This evidence is often 

submitted in the form of 

a written report that is 

rarely subjected to rules 

of evidence, although in 

contested hearings even 

a report that is required 

by statute may be 

considered hearsay—

and therefore excluded 

from consideration by 

the judge—if the expert 

is not present in court 

to explain his or her 

findings.180

Some state statutes contain specific 

requirements regarding the level of expertise 

and professional training of physicians and others 

appointed as “experts” who advise the court 

regarding an individual’s capacity. However, in 

many states, it is enough that the professional 

have the required degree, such as a medical 

degree, regardless of whether he or she has any 

specialized knowledge that would aid in making 

a capacity determination.181 Some view this as 

indicative of a lack of due 

process given that courts 

are usually required to 

make a finding that the 

testimony offered by 

an “expert” is relevant 

and reliable before it 

will be considered in 

civil cases that are not 

in the probate court.182

Additionally, even in 

instances in which the court has made such a 

finding, in many cases so-called expert testimony

is not subject to the level of scrutiny and crossexamination necessary 

to assist the fact-finder in 

weighing the evidence.183

If behavioral economics 

undermines the 

philosophical and legal 

basis for guardianship, 

it also raises questions 

about the decision 

making processes that 

physicians, psychiatrists, 

judges, and others 

use who contribute 

to determining an 

individual’s capacity. In practice, the way capacity 

determinations are made is deeply problematic. 

Many states rely heavily on physicians and 

psychiatrists, who provide opinions that are 

based largely on generalities of a person’s 

[I]n many states, it is enough that 

the professional have the required 

degree, such as a medical degree, 

regardless of whether he or she 

has any specialized knowledge that 

would aid in making a capacity 

determination.

Anecdotally, physicians with 

expertise in cancer or gerontology 

may be appointed to evaluate the 

capacity of a young person with 

cerebral palsy, and individuals have 

been determined incapacitated after 

failing a math quiz administered 

first thing in the morning or being 

unable to count backward from 100 

by multiples of seven.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 77
diagnosis rather than on any observable trait of 

the particular individual. Although statutes that 

require a physician or psychiatrist to report to 

the court regarding the capacity of the individual 

are based on the assumption that these 

scientists will submit to the court an unbiased 

and scientifically based opinion, physicians and 

psychiatrists are often not trained in administering 

the kinds of tests that may provide the most 

insight into an individual’s ability to make 

decisions and might not have the requisite skills 

and experience with the particular disability to 

render a valid judgment. Anecdotally, physicians 

with expertise in cancer or gerontology may be 

appointed to evaluate the capacity of a young 

person with cerebral palsy, and individuals have 

been determined incapacitated after failing a 

math quiz administered first thing in the morning 

or being unable to count backward from 100 by 

multiples of seven. Clearly, such “tests” that 

many people without disabilities would also fail 

hardly seem sufficient bases for determinations 

of incapacity leading to the deprivation of one’s 

rights. Often, tests simply confirm what the 

physician or psychiatrist had already assumed, 

which is that an individual lacked capacity based 

on their diagnosis. 

Finally, even if they have a clinical basis for 

determining what a person can or cannot do, 

the experts that make these determinations may 

not have sufficient legal context to determine 

whether the individual is incapacitated as the 

law defines it. In one study, only 30 percent of 

doctors were able to correctly apply the definition 

of legal competence (capacity) in a fact-pattern 

drawn from an actual legal case. Additionally, 

although psychiatrists were better able to answer 

theoretical questions about the standards for 

legal capacity, they were often wrong when 

applying those standards to facts. In addition, 

only a small minority of doctors were able to 

understand that a person could be diagnosed 

with dementia or depression and still be legally 

“competent.”184 Determining legal capacity is a 

process requiring a medical diagnosis, analysis 

of functional abilities, and the application of legal 

principles. Medical doctors simply are not trained 

in the legal, functional, and medical assessments 

that could lead to a reliable determination 

regarding an individual’s “capacity.”

The job of determining legal capacity becomes 

even more complex in light of the modern trend 

toward limited guardianship, which is encouraged 

in many state statutes, even though studies have 

shown that plenary guardianships are still vastly 

more common than limited guardianships.185

Nonetheless, in order to determine if a limited 

rather than plenary guardianship might be 

appropriate, physicians not only have to make a 

medical diagnosis, assess the person’s functional 

abilities, and determine capacity in light of a 

legal standard they might not fully understand, 

they have to repeat this process with respect to 

Limited vs. Plenary Guardianships

Limited Guardianship—Instances in which 

a judge decides that a person can exercise 

some rights but not others on their own.

Plenary/General Guardianship—Instances 

in which a judge determines that an 

individual lacks capacity to exercise any of 

the rights earlier mentioned; the plenary 

guardian is a guardian of both person and 

property.

78 National Council on Disability
each individual right that may be removed from 

the person. 

Despite the tremendous complexity of the 

task and the probability that an examining 

physician or psychiatrist is not well-equipped 

to make a meaningful recommendation 

regarding capacity, their opinion regarding 

capacity is usually given tremendous weight 

by the court and rarely subject to the crucible 

of rigorous cross examination or fundamental 

due process. 

Who Are the Experts? 

Varies by State

States use a variety of strategies to make 

capacity determinations. 

The ABA “Guardianship 

Law Practice” website 

contains numerous 

resources and charts 

regarding guardianship 

and alternatives, 

including a chart detailing 

the “Representation 

and Investigation in 

Guardianship Proceedings.” This chart, which 

is regularly updated to reflect changes to state 

statutes, shows how capacity is determined 

in all 50 states and the District of Columbia. 

The website is well worth looking at for statespecific information as well as a wide variety of 

resources: https://www.americanbar.org/groups/

law_aging/resources/guardianship_law_practice.

html#statelawsandpolicy. According to the 

ABA, a few states, including Kentucky and 

Florida, require the appointment of a panel of 

three experts to independently evaluate the 

person’s capacity.186 In Maryland, two physicians 

or a physician and a psychologist must be 

appointed.187 In many states, the court is required 

to appoint a physician, and in still others, they can 

appoint a physician or “other qualified person,” 

such as a psychologist, gerontologist, licensed 

social worker, or licensed 

counselor to conduct 

an evaluation and report 

their findings to the 

court.188 In some states, 

such as Colorado, a 

“visitor” is appointed to 

interview the person who 

is allegedly incapacitated, 

and in some cases, 

a physician or other relevant professional is 

appointed to make a recommendation to the 

court regarding that person’s incapacity.189 Finally, 

in some states, a guardian ad litem (GAL) may 

be appointed to ensure that the person’s best 

interests are adequately represented.

Shortcoming of Physicians as “Experts”

Although it may seem that requiring a 

physician to examine the individual provides 

some assurance that an accurate capacity 

determination will be made, this may not be the 

case at all. Even where a physician is required to 

perform an independent evaluation, physicians 

In one case, an attorney who 

contributed to this report noted 

having to object when a judge 

appointed an orthopedic surgeon to 

evaluate the capacity of a woman 

with intellectual disabilities.

Guardianship Resource

For state-specific information and a variety 

of resources on guardianship, visit the 

American Bar Association’s website at 

https://www.americanbar.org/groups/law_

aging/resources/guardianship_law_practice.

html#statelawsandpolicy. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 79
with appropriate expertise and experience may 

be unavailable or unwilling to perform this type 

of evaluation. This can lead to physicians being 

appointed and treated as experts when in fact 

they have little or no experience with the person’s 

disability. In one case, an 

attorney who contributed 

to this report noted 

having to object when 

a judge appointed an 

orthopedic surgeon to 

evaluate the capacity of a 

woman with intellectual 

disabilities. Furthermore, 

experts in guardianship proceedings may or may 

not appear in court and even when they do, they 

are usually permitted to testify as experts merely 

on the basis of having a medical license and 

are not required to justify their conclusions by 

describing methods they used to reach them.190

Even in the best-case scenario in which a 

physician with relevant expertise is appointed, 

the medical profession’s 

relationship to disability 

has historically been 

a paternalistic one. 

In medical terms, a 

patient benefits from 

anything that reverses 

or ameliorates any 

disease or disability 

“. . . that threatens to shorten the life or limit 

the functional capacity of the patient. Harm 

is characterized as anything that impedes or 

compromises the efficacy of those diagnostic 

or therapeutic measures.”191 This weighs heavily 

in favor of restricting autonomy in an attempt to 

ensure safety and may inevitably lead to overly 

restrictive guardianships. Another anecdotal 

example we heard from an attorney who 

practiced guardianship law was a determination 

by a court-appointed physician that the 

individual who had sought restoration of her 

rights continued to need a guardian because, 

as a person with an 

intellectual disability 

and diabetes, she might 

not be able to follow a 

diet that would ensure 

her continued health. 

This was in spite of her 

on-the-record testimony 

that she understood the 

risks associated with behavior such as eating 

sweets. 

Tools the Experts Use

Tests and Questionnaires

In order to make the extremely difficult job of 

determining capacity easier, court-appointed 

physicians and other “experts” appointed to 

advise the court have 

numerous tools at 

their disposal, such as 

the Mini-Mental State 

Examination (MMSE), 

the Short Portable Status 

Questionnaire, the 

MacArthur Competency 

Assessment Test for Clinical Treatment 

(MacCAT-T), and the Semi-Structured Clinical 

Interview for Financial Capacity (SCIFC) to name 

just a few.192 Of these, the most well-known 

and most often used is the MMSE, which is 

a 30-point questionnaire that tests cognitive 

abilities including orientation to time, place, and 

verbal recall ability.193 The MMSE has been used 

so frequently since its introduction in 1975 that 

The questions on the MMSE include 

things like spelling world backward, 

stating the year, naming the 

President, and counting backward 

by sevens.

Even in the best-case scenario in 

which a physician with relevant 

expertise is appointed, the medical 

profession’s relationship to 

disability has historically been a 

paternalistic one.

80 National Council on Disability
it has “. . . become the source for cartoons and 

dark humor.”194 The questions on the MMSE 

include things like spelling world backward, 

stating the year, naming the President, and 

counting backward by sevens.195 Although the 

test is widely used and has been found to be 

reliable for assessing the likelihood that a patient 

has dementia, “[it] has been found in several 

studies to be less than a sensitive indicator of 

cognitive abilities relating to decision making.”196

Additionally, the MMSE relies in part on the 

person’s ability to write, making it less reliable 

when used to assess individuals who are not 

well educated, who are illiterate, or whose 

disabilities make it difficult to complete these 

tasks without proper accommodation.197 Finally, 

the test is often administered by individuals 

who are neither trained in its use nor qualified 

to interpret the results. For example, some 

jurisdictions appoint a court “visitor” who is 

charged with meeting with the AIP and—despite 

having no medical training or background in 

clinical assessments—will administer some 

portion of the MMSE and determine based on 

the results that the AIP should lose some or all 

of his or her rights. 

Another very common test that is often 

used with the aging population to screen for 

dementia is the clock drawing test, which 

simply requires the individual to draw a clock 

with the hands pointing to a particular time. An 

abnormal, inaccurate clock drawing can indicate 

impairments in cognitive function even when the 

MMSE score is normal.198

Although these tests may be helpful in 

assessing cognitive decline in the aging, their 

ability to aid in the determination of whether 

an individual can exercise a particular right 

is doubtful. Certainly, no test has put an end 

to “[the] quest for an objective, uniformly 

dependable, consistently accurate, and easily 

administered tool for measuring the mental 

decision-making capacity of individuals . . .,” 

which has been likened to the quest for the 

“holy grail.”199

ABA/APA Framework for Evaluations

Recognizing that accurate capacity 

determinations are a fundamental requisite to 

a fair guardianship process and that a single 

test that can accurately determine capacity 

is likely to remain elusive, the ABA and the 

American Psychological Association (APA) 

collaborated on a series of manuals designed to 

help lawyers, judges, and psychologists make 

capacity determinations for older individuals.200

Although they were somewhat limited in terms 

of scope, these manuals suggest ways to use 

direct observation, functional assessments, and 

ABA/APA Framework for Evaluators

Six core elements for clinicians to address 

in providing capacity evaluations to courts in 

guardianship proceedings:

1. The specific medical condition causing 

diminished capacity; 

2. Its effect on cognition; 

3. Its effect on the person’s everyday 

functioning; 

4. The person’s values and preferences; 

5. Past or imminent risks; and

6. Means to enhance capacity, such as 

assistive technology or medication.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 81
structured interviews to determine capacity. The 

ABA/APA manual for psychologists sets out core 

elements for clinicians to address in providing 

capacity evaluations to courts in guardianship 

proceedings. These six elements are: 

1. The specific medical condition causing 

diminished capacity; 

2. Its effect on cognition; 

3. Its effect on the person’s everyday 

functioning; 

4. The person’s values and preferences; 

5. Past or imminent risks; and 

6. Means to enhance capacity, such as 

assistive technology or medication.201

For implementation 

of such an approach, 

training and collaboration 

between legal and 

health communities 

is warranted, as are consultations between 

physicians and behaviorists or psychologists. Fair 

assessments must also include consideration 

of available alternatives to guardianships in a 

way that “balances personal autonomy with 

protection.”202

While the ABA/APA framework describes 

the elements of a well-done capacity evaluation, 

it also emphasizes the importance of finding 

a professional who has experience in the 

assessment of capacity of clients with the same 

type of disability as the individual who is alleged 

to be incapacitated.203 As previously discussed, 

we know that there is extreme variability 

across the nation as to the nature and quality 

of assessments and the clinicians appointed to 

conduct them.204

Court Discretion and Due Process

The courts enjoy wide discretion in absence 

of both consistent criteria and methods 

for “experts” to use to make capacity 

determinations and widespread agreement 

regarding how to balance autonomy and 

protection.205 Additionally, guardianship cases 

are often viewed as objectively benevolent 

processes that ultimately result in the protection 

of a vulnerable individual, and this “therapeutic” 

model of justice “. . . replaces the rigors of 

adversarialism with the judge’s freestyle 

improvisations.”206 The disconnect between 

the level of due process that is required in 

statute and that which is actually practiced in 

guardianship cases throughout the country is 

examined in Chapters 

4 and 6; however, it 

suffices to state here 

that appeals from 

capacity determinations 

are rare, and judges are 

not often overturned unless they are found to 

have abused their discretion.207

Limited Guardianship and the 

Functional Model of Capacity

The move toward a functional, cognitive 

understanding of capacity that favors an 

outcome of a limited guardianship as a means 

of protection may be an improvement over the 

days when guardianships were always plenary 

and could be imposed merely because the 

individual was deemed an idiot, an imbecile, or 

insane. However, this evolution may have only 

succeeded in revealing how impossible it is to 

determine with any accuracy an individual’s ability 

to make decisions in a particular area. Given that, 

it is worth considering that the whole notion 

[J]udges are not often overturned 

unless they are found to have 

abused their discretion.

82 National Council on Disability
of “capacity” is “a [legal] fiction determined 

by prevailing values, knowledge, and even the 

economic and political spirit of the time.”208 This 

is the very paradigm shift that led the drafters 

of the CRPD to recognize the legal capacity of 

people with disabilities “. . . on an equal basis with 

others in all aspects of life.”209 This worldwide 

paradigm shift based in international human 

rights:

. . . sees incapacity as socially constructed, 

insists on the full legal capacity of every 

person with intellectual disabilities, and 

does away with substituted decision-making 

in favor of society’s obligation to provide 

appropriate supports to permit everyone to 

make his or her own decisions. Like every 

emerging paradigm, this challenges our 

perceptions and our understanding of when, 

how, and even if the state may intervene 

in a person’s life, and it has the potential to 

be deeply unsettling. And, unsurprisingly, it 

takes time.210

Indeed, a close look at how capacity 

determinations are made reveals that we may 

well be tilting at windmills in our noble quest 

to make refined capacity determinations that 

only remove those rights that the person is 

truly incapable of exercising. As Chapter 6 will 

examine, it also seems unlikely that the due 

process being provided in guardianship cases 

is sufficiently robust to yield such refined and 

accurate outcomes. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 83
84 National Council on Disability
While some of these issues have 

already been discussed in preceding 

chapters, Chapter 6 will attempt to 

drill down into these issues and examine them 

more closely. 

Due Process Concerns

Back in 1994, the Center for Social Gerontology 

conducted a national study that examined the 

guardianship process in 10 states. The study 

found that only about one-third of respondents 

were represented by an attorney during the 

guardianship hearing(s). While medical evidence 

was in the court file in most cases, medical 

testimony was rarely presented at the hearing. 

The majority of hearings lasted no more than 

15 minutes and 25 percent of hearings lasted 

less than 5 minutes, thus raising questions as to 

Chapter 6: Concerns About When and How Guardians 

Are Appointed

Guardianship—Greatest Areas of Concern

As we discussed in Chapter 4, existing data on guardianship is limited; however, there is 

significant evidence that guardianship is a system in continual crisis. Some of the greatest 

areas of concern include:

■ due process protections afforded to individuals subject to guardianship and, in some cases, 

their families, including making sure alternatives are considered and guardianships are not 

overbroad; 

■ inadequacy of capacity assessments, as discussed in Chapter 5;

■ the steps the court takes to ensure that an appropriate, qualified, and well-meaning 

guardian is appointed and that the individual subject to guardianship is not exploited, 

abused, or neglected by the guardian; 

■ the ability of courts to adequately track and monitor existing guardianships to ensure that 

abuse, neglect, and exploitation are not occurring; and 

■ the ability of the individual to have his or her rights restored at the earliest possible 

opportunity, including through the use of less restrictive alternatives to guardianship.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 85
whether there was opportunity for meaningful 

due process. Ninety-four percent of guardianship 

petitions were granted, and only 13 percent 

of the orders placed limits on the guardian’s 

authority.211

Fifteen years later, a Utah ad hoc court 

committee made similar findings, concluding that:

[t]he appointment 

of a guardian or a 

conservator removes 

from a person a 

large part of what 

it means to be an 

adult: the ability 

to make decisions 

for oneself . . . 

We terminate this 

fundamental and basic right with all the 

procedural rigor of processing a traffic 

ticket.212

Near the time of this report, a local news 

agency had reported on its impressions after 

witnessing Utah’s court 

guardianship proceedings 

in action: “[I]t was 

startling how quickly 

someone could be 

stripped of all decisionmaking rights. Once the 

paperwork is in order, 

‘hearings’ average seconds, not minutes.”213 It is 

worth noting that in many jurisdictions magistrate 

judges hear guardianship cases, which tends to 

support the notion that these cases are seen as 

ministerial when in fact they impact fundamental 

rights. 

In its report, the court committee went on to 

list findings that directly impacted the procedural 

and substantive due process rights of people at 

risk of or facing guardianship in the state:

■ The person subject to the guardianship 

proceeding was sometimes either not 

represented or represented by a lawyer 

recruited by the petitioner’s lawyer.

■ The lawyer for the 

person subject to 

the guardianship 

proceeding sometimes 

acted as a guardian 

ad litem, acting in the 

perceived best interest 

of the AIP rather than 

as an advocate for the 

person’s wishes.

■ There was no-to-minimal procedure for the 

person subject to the guardianship petition 

to elicit and challenge evidence, and the 

evidence of incapacity itself was cursory. 

■ Once appointed, 

guardians were often 

given the authority 

of a conservator 

regardless of whether 

that authority 

was warranted by 

the respondent’s 

circumstances. 

■ While statutes claimed to prefer limited 

authority for guardians and conservators, 

they failed to describe less restrictive 

alternatives. 

■ Plenary appointments were common with 

little evidence to support the need. 

■ There was no planning to help the person 

live life as independently as possible. 

[I]n 1994, the Center for Social 

Gerontology conducted a 

national study that examined 

the guardianship process in 10 

states ... [and] found that only 

about one-third of respondents 

were represented by an attorney 

during the guardianship hearing(s).

“[I]t was startling how quickly 

someone could be stripped of all 

decision-making rights. Once the 

paperwork is in order, ‘hearings’ 

average seconds, not minutes.”

86 National Council on Disability
■ There was no regulation of professional 

guardians. 

■ There was little education or assistance 

for family guardians. 

■ There was little training for judges and 

clerks.214

Based on reports in other jurisdictions215 and 

recent scholarship, Utah’s court committee is 

not alone in making 

these kinds of findings. 

Guardianship hearings 

are often brief, relying 

on incomplete or 

illegible information, 

and resulting in plenary 

appointments.216 When courts do limit the 

guardian’s authority, individuals are still often 

treated by those around them as incompetent 

or incapacitated in every 

aspect of their lives. 

Moreover, the person 

subject to guardianship 

might not be seen as 

having an “enforceable 

right” to participate in 

decision making in his or 

her own life even though 

the statute indicates 

that that the guardian 

should consult with 

the individual; the court 

proceeding itself can be stigmatizing; and courts 

frequently do not actively consider alternatives to 

guardianship prior to appointment.217

One can imagine that such violations of due 

process would have gained the attention of the 

federal courts. However, for reasons beyond 

the scope of this report, federal courts generally 

will not hear challenges to ongoing guardianship 

cases because of a variety of legal doctrines that 

are designed to protect the sovereignty of state 

courts and the ability of judges to make decisions 

without fear of liability for violating the rights of 

litigants. Despite this guardianship statutes can 

be challenged as unconstitutional as written.

Interestingly, the latest example of such a 

challenge is a challenge to Utah’s guardianship 

statute. In July 2017, the 

American Civil Liberties 

Union (ACLU) challenged 

a Utah law that 

eliminated a requirement 

that an attorney be 

appointed to represents 

adults with disabilities whose biological or 

adoptive parents petition courts to become their 

legal guardians.218 While advocates for the law 

say that it helps alleviate 

the financial burden of 

seeking guardianship for 

parents with adult sons 

or daughters with ID/

DD, advocates for people 

with disabilities are 

concerned that it means 

that these individuals 

will not have a voice in 

the process or anyone to 

advocate for them not to 

lose their civil rights. 

Based on the findings of this report, people at 

risk of or subject to guardianship face many barriers 

to fair treatment by the legal system. These barriers 

include problems accessing zealous representation, 

the overuse of plenary guardianship, disabilityspecific guardianship processes that raise due 

process concerns, the inadequacy of capacity 

Guardianship hearings are often 

brief, relying on incomplete or 

illegible information, and resulting 

in plenary appointments.

In July 2017, the American Civil 

Liberties Union (ACLU) challenged 

a Utah law that eliminated a 

requirement that an attorney be 

appointed to represents adults 

with disabilities whose biological 

or adoptive parents petition 

courts to become their legal 

guardians.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 87
assessments used to 

remove rights, the lack 

of court oversight of 

guardians, caseloads 

spiraling upward, and 

poor data collection and 

management.219

Difficulty Accessing Zealous 

Representation

As in the Utah analysis, some commentators 

have raised concerns that people facing 

guardianship or those already subject to it 

cannot access independent counsel. This is 

confirmed by a review of information available 

from the American Bar Association Commission 

on Law and Aging.220 The table in Appendix D 

of this report describes each state’s approach 

to the appointment of counsel. States generally 

recognize some form of a right to counsel for 

alleged incapacitated people in preappointment 

guardianship proceedings. However, depending 

on the state, that right to counsel may be 

qualified—for example, by requiring appointment 

only when the person requests or wants to 

contest the guardianship; by allowing the court 

discretion to appoint an attorney; by requiring the 

person to bear the burden of the legal and expert 

fees; by limiting a person’s choice of attorney; 

and/or by prescribing the role the attorney plays 

in the proceeding (i.e., attorney ad litem to 

advocate for what the lawyer believes is in the 

person’s best interest rather than the expressed 

wishes of the person). This means, in practice, 

that the appointment of an attorney to advocate 

for the person’s wishes in preappointment 

proceedings might not always occur. In some 

cases, lawyers might view themselves in more 

of a “guardian ad litem” 

role, meaning they 

advise the court as to 

the best outcome for 

the person. In other 

words, lawyers might 

actually provide evidence 

to the court supporting the appointment of a 

guardian, even when that is against their client’s 

expressed wishes. 

The question of the role of the lawyer in 

representing the person in preappointment 

proceedings has been much debated, with most 

commentators arguing that without a competent 

and zealous advocate, the person could face 

unnecessary restrictions on liberty and autonomy 

without due process. 

Overuse of Plenary Guardianship

Empirical studies indicate that courts do not 

take advantage of the limited guardianship 

Barriers to Fair Treatment in the 

Legal System for People at Risk 

of or Subject to Guardianship

■ Problems accessing zealous 

representation;

■ Overuse of plenary guardianship;

■ Disability-specific guardianship processes 

(due process concerns);

■ Inadequacy of capacity assessments used 

to remove rights;

■ Lack of court oversight of guardians;

■ Burgeoning caseloads; and

■ Poor data collection and management

[T]he appointment of an attorney to 

advocate for the person’s wishes in 

preappointment proceedings might 

not always occur.

88 National Council on Disability
option and rarely limit a guardian’s authority.221

Most guardianship orders are not time-limited 

and so last until the subject’s death or a court 

modification or termination of the order, even 

though an individual’s capacity can change over 

time. For example, psychosocial conditions are 

often temporary or episodic, and people may 

experience improvement or fully recover their 

decision making capabilities within a relatively 

short time period. These kinds of condition 

fluctuations are often not appropriately 

accounted for in either the initial decision to 

appoint a guardian or in the duration of the 

guardianship order.222

As one scholar postulated, “[a]s long as the 

law permits plenary guardianship, courts will 

prefer to use it,” even though such guardianships 

are only appropriate in a sub-set of cases.223

Courts may make more 

global assessments 

of incapacity than are 

actually justified, based 

on stereotypes that lead 

them to undervalue 

the competencies and/

or credibility of people 

with certain conditions, 

such as psychosocial 

conditions or ID/DD. 

Courts also may not 

make the proper distinction between what 

they perceive as the rationality of a person’s 

decision and what that person’s actual ability to 

make a decision is. Additional factors may be a 

court wanting to err on the side of protection, 

experiencing difficulties in determining the exact 

areas of decision making in need of assistance, 

desiring to avoid confusion about the scope of 

the guardian’s authority, and wishing to promote 

judicial economy by avoiding future proceedings 

to expand the scope.224

Unequal Treatment Under the Law for 

People with ID/DD

There are an estimated 4.7 people with 

developmental disabilities in the United States, 

including those with intellectual disabilities, and 

guardianship disparately impacts this population 

in a number of ways.225 In many states, it is 

easier to obtain guardianship of people with 

intellectual and developmental disabilities than of 

others because the process they are subject to 

is distinct from individuals whose lack of capacity 

stems from disabilities that arise after one has 

become an adult, such as dementia, head injury, 

and psychiatric disabilities. The table in Appendix 

B lists the states that have distinct guardianship 

statutes for adults with 

ID/DD. These statutes 

are invariably designed to 

make it easier for parents 

to get guardianship of 

children with intellectual 

and developmental 

disabilities when they 

reach the age of majority. 

Often, they provide for:

. . . an abbreviated 

proceeding for individuals with mental 

retardation when they reached the age of 

eighteen. The underlying assumption was 

that [people with intellectual disabilities] 

were perpetual children, such that the 

legal powers all parents had over persons 

under eighteen should simply be extended 

indefinitely for the parents of [people with 

intellectual disabilities] . . .226

Empirical studies indicate that 

courts do not take advantage of the 

limited guardianship option and 

rarely limit a guardian’s authority.

Most guardianship orders are not 

time-limited ... even though an 

individual’s capacity can change 

over time.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 89
Sometimes, these alternative guardianship 

processes are viewed and described as 

“less restrictive alternatives to guardianship.” 

However, although the process used to establish 

the guardianship may be less expensive and 

less onerous for parents and others seeking 

guardianship over an adult with intellectual 

and developmental disabilities, it is not clear 

that these types of guardianship are any less 

restrictive than other forms of guardianship. While 

some of these alternative guardianship processes, 

such as Florida’s “Guardian Advocacy” statute, 

F.S. 393.12, are more recent developments, some 

have been on the books for a long time. 

One such example is New York’s Article 

17-A, which has remained largely unchanged 

since 1969, other than amendments in 1989 

that broadened the types of “developmental 

disabilities” covered by the statute. While these 

statutes vary in significant ways, one common 

factor is that it is less burdensome to “prove” 

that a person with a developmental disability 

lacks capacity and/or needs a guardian than it 

typically is when other disabilities are present. 

To this point, New York’s Article 17-A has been 

criticized in the following ways: 1) as diagnosis 

driven rather than based on a functional 

assessment of capacity; 2) as lacking due 

process as there is no requirement of a hearing 

and the person with developmental disabilities 

is not required to attend if one does occur; 

3) as lacking a process for periodic review of the 

continued need for guardianship; 4) as lacking 

reporting requirements that make the guardian 

accountable to the court for the health and 

welfare of the person subject to guardianship; 

and 5) that guardianships under Article 17-A are 

plenary.227

Ryan King

90 National Council on Disability
In a few states, the statute specifically avoids 

the question of capacity by providing that a 

guardian can be appointed for a person with 

developmental disabilities who needs decision 

making assistance without an adjudication of 

incapacity. For example, in Florida a “guardian 

advocate” can be appointed for a person with 

developmental disabilities “. . . if the person 

lacks the decision-making ability to do some, but 

not all, of the decision-making tasks necessary 

to care for his or her person or property or if 

the person has voluntarily petitioned for the 

appointment of a guardian advocate.”228 A 

guardian advocate appointed under this statute 

has generally the same rights and responsibilities 

under Florida’s more general guardianship 

statute. The main 

difference is that, since 

the individual is not 

technically considered 

“incapacitated,” the 

rights that can be 

removed from the person 

but not transferred 

to the guardian—such as the right to vote or 

seek employment—are not taken away from 

the individual. However, if the right to contract 

has been transferred to the guardian advocate, 

the individual who is the subject of a guardian 

advocacy is not entitled to marry without 

court approval as that is legally a contractual 

arrangement. Although Florida’s guardian 

advocacy is considered by some to be a less 

restrictive alternative to guardianship, it is 

essentially a limited guardianship with fewer due 

process protections afforded to the person with a 

developmental disability under this statute. 

Many families are grateful for less onerous 

paths to establish guardianship in instances in 

which the family and the individual’s interests are 

aligned and where the lack of capacity or need for 

decision making assistance is readily apparent. 

However, the short shrift given to due process, 

the cursory nature of the capacity determination, 

and the lack of focus on viable alternatives to 

guardianship make these statutes problematic 

against the backdrop of overall policy aims of 

promoting self-determination and less restrictive 

alternatives to guardianship whenever possible. 

Additionally, families who seek guardianship 

under these processes may feel pressured 

into a less-than informed decision without fully 

understanding the implications of guardianship or 

the possible alternatives. 

Rights are not easily restored once they’ve 

been removed by 

a guardianship. In 

fact, there have been 

examples of families who 

later regretted seeking 

guardianship for their 

grown children with ID/

DD, only to encounter 

a difficult time convincing the courts to allow 

them to use alternatives that would meet the 

individual’s needs. In September 2015, the 

Washington Post chronicled the story of Ryan 

King, an adult with ID/DD who was subject to 

guardianship. When Ryan turned 18, his parents 

were told they had to become his guardians in 

order for him to receive adult services. In 2007, 

Ryan’s parents asked the Court to remove them 

as his guardians, saying that he did not need or 

want to be under guardianship. By that time, 

King had worked at a grocery story and used 

supported decision-making with his parents for 

years. However, the court denied their request. It 

was not until nearly 10 years later that the court 

The suggestion of guardianship 

usually first arises at an 

individualized education program 

(IEP) meeting when a child with a 

disability nears the age of majority.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 91
eventually terminated Ryan’s guardianship, after 

he found new attorneys to represent him and 

present expert evidence supporting his functional 

capacity and effective use of supported decision 

making.”229

School-to-Guardianship Pipeline 

for Youth with ID/DD

The Pipeline Problem

The suggestion of guardianship usually first arises 

at IEP meeting when a child with a disability 

nears the age of majority. Children who have 

IEPs under the IDEA are 

entitled to receive services 

until they graduate from 

high school or they reach 

age 22. Children with 

disabilities may have a 

difficult time graduating 

at the expected pace 

for a variety of reasons. 

However, these delays 

should not undermine 

the presumption of 

capacity for those that 

have reached the age of 

majority, which is 18 for 

most purposes with the exception of the drinking 

age. Be that as it may, parents are often informed 

by teachers or administrators that the rights 

that parents have under IDEA, for example to 

participate in IEP meetings and to due process if 

there is a dispute over the content of the IEP, will 

transfer to the child when they turn 18. In theory, 

this takes place in the context of a fulsome 

transition plan designed to help the child take on 

the adult responsibilities of employment or higher 

education and vocational training. However, too 

often this notice is issued as a warning to parents 

alongside a suggestion that they need to obtain 

guardianship over their children with ID/DD in 

order to continue to participate in their education 

and to protect youth who are often seen as 

incompetent and potentially vulnerable to abuse 

or exploitation due to their disabilities. While such 

concerns should not be taken lightly, it is worth 

noting that all parents have fears about whether 

their teenager will be ready for the responsibilities 

of adulthood when they turn 18, but it is only the 

parents of teenagers with disabilities who are 

regularly advised that they have the option of 

preventing the child from 

becoming legally an adult 

in the eyes of the world. 

In 2008, researchers 

found that in one 

school for children with 

developmental disabilities, 

faculty encouraged 

all parents to obtain 

guardianship when 

their children turned 18. 

Furthermore, faculty 

had few reservations 

or second thoughts 

about concluding that 

their students needed guardianship, as they 

were largely motivated by a perceived need 

to protect the young adults and believed the 

way to do this was by pursuing guardianship. 

Frighteningly, researchers found that the 

faculty lacked knowledge regarding the 

guardianship process and about alternatives 

to guardianship.230

Evidence suggests that parents of young 

adults with disabilities are often seeking 

guardianship when their children turn 18 and 

are still in school. One study examined 221 

[A]ll parents have fears about 

whether their teenager will be 

ready for the responsibilities of 

adulthood when they turn 18, but 

it is only the parents of teenagers 

with disabilities who are regularly 

advised that they have the option 

of preventing the child from 

becoming legally an adult in the 

eyes of the world.

92 National Council on Disability
guardianship files across nine jurisdictions 

in Michigan that were filed under Chapter 

6 of the Michigan Mental Health Code, 

which governs guardianships for people with 

developmental disabilities. They found that 

more than 50 percent of the individuals in the 

sample were 18 when the guardianship petition 

was filed and more than 90 percent were 

still in public schools when the petition was 

filed. Interestingly, for approximately half the 

individuals in the study, the sole income was 

SSI.231 While it is not altogether surprising that 

parents are seeking guardianship over young 

adults with intellectual disabilities at a relatively 

young age, it does suggest that guardianship 

in these cases is being filed proactively (prior 

to these young adults attempting greater 

independence first) and perhaps without a 

full consideration of the alternatives, since 

the young adult had a guardian as a child (as 

do all children) and continues to have one as 

an adult. In fact, numerous alternatives exist 

that could alleviate the main concerns that 

parents have at this important juncture in their 

children’s lives. These alternatives are explored 

more fully in Chapter 9, but it’s important to 

note that in many cases these alternatives 

already exist without any need for statutory 

changes. 

For instance, a young adult who has not 

completed high school by the time they’re 18 

can voluntarily elect to continue to include 

their parent in their IEP meetings, or in some 

states there is a process for the school to 

recognize the parent as the representative of an 

adult child with a disability for IDEA purposes 

upon a determination that the individual is 

unable to participate meaningfully in the 

process. With respect to medical decisions, 

there is usually a provision that provides for 

the next of kin to consent to medical treatment 

on behalf of a person 18 years of age or older, 

who “lacks capacity to understand appropriate 

disclosures regarding proposed professional 

medical treatment . . .”232 In such cases, 

capacity is determined in reference to medical 

personnel determining that the person cannot 

provide informed consent to medical procedures 

rather than a judicial proceeding. Finally, a 

person who receives SSI due to an intellectual 

disability will often have a representative payee 

appointed to manage their benefits, alleviating 

the need for a conservator or guardian of 

property if the monthly benefit is the individual’s 

only source of income. With these three 

alternatives in place, the need for guardianship 

is greatly reduced. 

If guardianship is a family’s first choice rather 

than the last resort after other alternatives have 

been tried (or at least seriously considered and 

rejected), the negative impact may not be limited 

to the young person with a disability who finds 

his or her rights curtailed more than necessary. 

Obtaining guardianship can be an expensive 

and arduous process for families, too, and the 

ongoing reporting requirements may prove too 

much for some. These may be acceptable tradeoffs where guardianship fulfills the perceived 

need to protect the individual; however, there 

are reasons to ask whether guardianship is 

actually helpful in many cases, even where 

the individual’s lack of capacity seems readily 

apparent. 

There is a great deal of evidence that special 

education teachers regularly encourage or even 

pressure parents into seeking guardianship of 

their transition-age children with disabilities. For 

example, a 2015 study supported by the TASH 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 93
Human Rights Committee and the Alliance 

to Prevent Restraint, Aversive Interventions 

and Seclusion (APRAIS) tends to support this 

conclusion. The study analyzed 1,225 responses 

to an online survey regarding their experiences 

with guardianship and alternatives. Eightyseven percent of respondents were parents of 

people with disabilities. Thirty-seven percent of 

respondents indicated that they or the person 

about whom they were answering questions 

had a guardian, and 63 percent did not, although 

of the latter group, 37 percent indicated that 

guardianship had been recommended. When 

asked, “Who first suggested guardianship?” 

the most common response was “school 

personnel.” Strikingly, 

the survey results 

indicated that regardless 

of who first made 

the recommendation, 

plenary guardianship 

and “power of attorney” 

were the most often 

recommended option 

for decision making 

assistance across every IDEA disability category 

except deafness, recommended with equal 

frequency.233

Alternatives to the Pipeline

While clearly some parents are receiving 

encouragement to pursue guardianships over 

their children with disabilities, there are also signs 

pointing to some families increasingly learning 

of alternatives to guardianship and getting 

better advice to help them weigh their options. 

These changes are likely due in part to changing 

attitudes toward disability generally, a growing 

awareness and recognition of alternatives such 

as supported decision making and changing 

expectations regarding employment for young 

adults with disabilities such as seen in the 2014 

Workforce Innovation and Opportunity Act 

(WIOA).234

Workforce Innovation and Opportunity 

Act (WIOA)

Section 511 of WIOA limits the ability of 

employers who hold 14(c) certificates from the 

U.S. Department of Labor (which allow them 

to pay people with disabilities under minimum 

wage) to pay subminimum wages to any person 

with a disability age 24 or under, unless they 

are already employed by such an employer, in 

which case they are 

“grandfathered in.” Under 

the new law, holders of 

these certificates cannot 

pay subminimum wages 

to any youth without 

first documenting that 

the youth has received 

transition services under 

IDEA; has applied for Vocational Rehabilitation 

(VR) services and either been found ineligible 

or had their case closed after working toward 

an individual plan for employment (IPE) goal 

for a reasonable period of time; and has 

received career counseling. These limitations 

are intended to make it less likely that youth 

will be inappropriately routed into segregated, 

subminimum wage employment without 

exploring all the alternatives for meaningful work 

and post-secondary education and training. 

WIOA has the potential to be transformative in 

terms of societal expectations of young people 

with intellectual and developmental disabilities, 

and it may be that these raised expectations will 

There is a great deal of evidence 

that special education teachers 

regularly encourage or even 

pressure parents into seeking 

guardianship of their transition-age 

children with disabilities.

94 National Council on Disability
make guardianship less of a foregone conclusion 

as well. 

State Efforts to Promote Alternatives 

to Guardianship

Some state education agencies are making a 

genuine effort to make sure that parents’ desire 

to continue to be involved in their children’s 

education is not a reason for guardianship. 

For example, the D.C. 

Office of the State 

Superintendent of 

Education website 

specifically encourages 

the use of supported 

decision making for 

students who may need 

assistance to “. . . make 

his or her own decisions, by using adult friends, 

family members, professionals, and other people 

he or she trusts to help understand the issues 

and choices, ask questions, receive explanations 

in language he or she 

understands, and 

communicate his or her 

own decisions to others.” 

Additionally, the site 

provides a form “. . . to 

provide assistance to 

local education agencies 

(LEAs) and adult students 

to document supported 

decision-making 

decisions. . . .”235

Another example is the “I’m Determined” 

project funded by the Virginia Department of 

Education, which focuses on providing direct 

instruction, models, and opportunities for 

students to practice skills associated with 

self-determined behavior, including effectively 

participating in their IEP.236

Many family-based groups not affiliated with 

a state education agency are also trying to 

improve on the information that is available to 

families at this critical juncture. “Family Voices” 

of Wisconsin has a fact sheet on “Supported 

Decision Making for Transition Age Youth” that 

provides valuable information about alternatives 

to guardianship and 

how to use supported 

decision making 

effectively in this 

context.237

Finally, state DD 

Councils have also 

launched initiatives 

designed to encourage 

the full consideration of alternatives to 

guardianship and make sure people with ID/DD 

and their families have complete information 

when deciding whether they need to resort to 

guardianship. One such 

initiative is “Lighting the 

Way to Guardianship 

and Alternatives,” 

funded by the Florida 

Developmental 

Disabilities Council, 

which provided 

trainings across Florida 

for individuals and 

families as well as legal 

professionals interested in knowing more about 

guardianship and alternatives.238

Financial Costs of Guardianship 

Throughout this report, we have made the 

case that the adjudication of incapacity and 

Some state education agencies are 

making a genuine effort to make 

sure that parents’ desire to continue 

to be involved in their children’s 

education is not a reason for 

guardianship.

[S]tate DD Councils have also 

launched initiatives designed to 

encourage the full consideration 

of alternatives to guardianship 

and make sure people with ID/DD 

and their families have complete 

information ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 95
the imposition of guardianship is a serious 

deprivation of constitutional rights. To the extent 

that the traditional parens patriae authority can 

be used to subject an individual to guardianship, 

the decision to do so must be reached through 

due process. However, to put it bluntly—due 

process is not cheap. Even where every person 

in the guardianship system is working with 

the interests of the person with a disability in 

mind, the person can emerge from the process 

much poorer than they entered it. Where an 

individual subject to guardianship is indigent, 

the costs often fall on the state, and given the 

relative stinginess of state budgets in the last 10 

years, there are real gaps in funding that make 

it impossible for the system to work for the 

people it is supposed 

to be supporting and 

protecting. 

As often noted, 

simply describing 

guardianship can be 

difficult because of 

tremendous differences in statutes from stateto-state, as well as differences in practice from 

court-to-court; differences in the dynamics with 

family guardians, professional guardians, and 

public guardians; differences that stem from 

the reason for guardianship, whether it’s ID/

DD, dementia, mental health, head-injury, or 

another cause; and whether the guardianship 

is “contested” or not. Similarly, each of these 

factors can alter the financial aspects of 

guardianship. Additionally, the local economy 

can impact the cost of guardianship a great deal; 

simply put, professional guardians, lawyers, 

and other actors may charge vastly more for 

their services in Miami than they would in Pella, 

Iowa. However, there are some fundamental 

issues related to the costs associated with 

guardianship that we can explore. Please note 

that this may be related to the conversations 

around financial exploitation, but here we are 

really focusing on costs that occur even in the 

absence of any intent on the part of the guardian 

or any other actor to unjustly enrich themselves. 

Cost of Justice

Even the most straightforward, uncontested 

guardianship case can be quite expensive. 

Estimates of the average cost of obtaining 

guardianship range from as low as $1,500 to 

as high as $5,000 and even higher. Contested 

guardianships where the individual does not 

agree that they need a guardian or where there is 

disagreement over who 

should be appointed as 

guardian can be even 

more costly. These 

estimates may include 

initial filing fees, paying 

an attorney to represent 

both the individual subject to guardianship and 

the putative guardian, and fees associated with 

the determination of incapacity, such as paying a 

psychiatrist to examine the alleged incapacitated 

individual and report their findings to the 

court. Once the guardianship is established, 

the guardian is generally entitled to receive a 

reasonable fee for their services out of the estate 

of the person subject to guardianship. In addition, 

the guardian will often—and in some states is 

required to—retain an attorney to represent the 

guardianship, that attorney is also paid out of the 

estate of the person subject to guardianship. 

When guardians are required to file documents 

that facilitate the court’s ability to monitor the 

guardianship, such as annual accountings and 

Estimates of the average cost of 

obtaining guardianship range from 

as low as $1,500 to as high as 

$5,000 and even higher.

96 National Council on Disability
reports, they are usually entitled to be paid for 

the time it takes to prepare the documents, and 

the attorney for the guardianship can collect a 

“reasonable fee” for the time it takes to review 

the documents and file them with the court. 

A majority of states’ statutes establish 

“reasonable fees” as the standard for how 

much a guardian can be paid for the work that 

they do. In 2013, the Florida State Guardianship 

Association (FSGA) conducted a survey about the 

fees charged by the 400 professional guardians 

who were members of the organization at that 

time. Of those, 130 responded. The range of fees 

was quite broad, with the lowest fee coming 

in at $15 per hour and 

the highest fee being 

$125 per hour; it’s worth 

noting that the range 

of experience of the 

professionals was also 

quite broad, with some 

of the guardians reporting 

that they were just 

starting out and others 

reporting that they had 

more than 20 years of 

experience as professional guardians. The most 

common rates reported were between $45 and 

$85 per hour. Additionally, the survey found that 

most guardians set their rates in accordance with 

local court rules or customs. Twenty-five percent 

of respondents reported that their fee varied 

based on the activity and almost 13 percent 

reported that the courts set limits on the amount 

of time that particular activities should take and 

limit fees assessed accordingly.239

In Florida as well as other states, significant 

questions can arise regarding the nature of the 

work performed. For example, the reasonable fee 

that an attorney can charge for their legal services 

may be different than what they can charge when 

they are acting as the guardian for an individual, 

as lawyers often do. Another facet of this issue is 

how much guardians can charge for performing 

tasks that do not require the experience and 

training that a professional guardian might be 

expected to have. For example, if a guardian 

visits a person subject to guardianship and, 

while they’re there, spends two hours helping 

the individual clean up their living space they 

are probably not entitled to charge $125—

which might be considered a reasonable fee 

for a guardianship service, but probably not 

for housekeeping 

services. The National 

Guardianship Association 

(NGA) standards address 

this issue and provide 

guidance on time 

records. At a minimum, 

accountings filed by a 

guardian should include 

a detailed description 

of the task performed 

to allow the court to 

determine whether the activity justifies the 

professional guardian’s hourly rate or a lesser rate 

that is commensurate with the activity. However, 

many courts lack the personnel, expertise, and 

resources to closely review these reports or 

confirm their accuracy.

Finally, while most of this discussion 

concerns the ability of professional guardians 

to charge for their services, the UGGPA and 

the updated version, the Uniform Guardianship, 

Conservatorship & Other Protective 

Arrangements Act, provides that guardians 

can be paid out of the guardianship estate for 

In 2013, the Florida State 

Guardianship Association (FSGA) 

conducted a survey about the fees 

charged by ... 400 professional 

guardians.... The range of fees 

was quite broad, with the lowest fee 

coming in at $15 per hour and the 

highest fee being $125 per hour ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 97
their services irrespective of whether they are 

professionals or family members. However, 

family members are not necessarily able to claim 

the kinds of hourly rates professional guardians 

are able to based on training and experience. 

Additionally, family members are not generally 

entitled to compensation for services that are the 

kind family members usually perform for each 

other but only for services that fall within the 

scope of the guardianship (e.g., paying bills).

Public Funding of Guardianship 

In addition to the critique of guardianship that it 

potentially drains the person’s resources under 

the guise of preserving 

them, there are issues 

related to public funding 

of guardianship. In 

most states, public 

guardianship is a 

mechanism to provide 

decision making services 

for an individual who 

has been determined 

to need a guardian, but 

for whom no qualified 

individual has stepped forward to serve as 

guardian. Additionally, in some states, public 

guardianship is specifically for individuals who 

are indigent or of limited means while in few 

others public guardianship is limited to people 

with specific types of disabilities. A national study 

of public guardianship in 2007 found that public 

guardianship essentially falls into four categories: 

1) the public guardian is an official of the court 

and is appointed by the chief judge of the court; 

2) a statewide public guardianship office that is 

part of the executive branch of state government; 

3) the public guardian is an arm of a preexisting 

social service agency; and 4) the public guardian 

is a county agency. Within these three models 

of public guardianship, funding streams may 

vary dramatically, but across the board, public 

guardianship systems are under-funded. There are 

significant unmet needs for public guardianship 

across the country as well as for other decision 

making services for individuals who do not have 

close family or friends willing or able to provide 

assistance. The 2007 study found that funding 

for public guardianship comes from a patchwork 

of sources, but that none are sufficient. This 

can lead to incredibly heavy caseloads for 

public guardians, raising concerns about the 

quality of the services 

provided. Additionally, 

the report points out 

that individuals who are 

in institutions but may 

be able to transition to 

the community may 

need a public guardian 

to advocate for such a 

move and to make the 

necessary arrangements, 

but not be able to access 

one because the public guardianship system is 

chronically under-funded.240

Additionally, some of the ways that public 

guardianship systems operate are inherently 

problematic. For example, the study found that 

in 2007, 32 states used a social services agency 

model for public guardianship. In this scenario, 

the authors claim, if the public guardian program 

is “. . . housed in an entity also providing social 

services, then the public guardian cannot 

advocate for or objectively assess services, or 

bring law suits against the agency on behalf of 

incapacitated persons.”241 There is clearly a need 

[I]ndividuals who are in institutions 

but may be able to transition 

to the community may need a 

public guardian to advocate for 

such a move ... but not be able 

to access one because the public 

guardianship system is chronically 

under-funded.

98 National Council on Disability
for more robust and independent sources of 

funding for public guardianship. 

More public dollars—including federal 

dollars—must be invested in alternatives to 

guardianship, which are widely recognized as 

being not only less restrictive, but also less 

expensive than guardianship. ACL has funded 

a number of pilot programs exploring the 

effectiveness of supported decision making. 

These projects are discussed in Chapter 8. 

Professional Guardianship in the 

Absence of Sufficient Public Funding

One last interesting finding from the FSGA 

survey discussed was that “[m]ultiple 

respondents reported the hourly rate of the 

guardian being affected by the percentage 

of pro bono work carried by the guardian.”242

In other words, the estate of one individual 

subject to guardianship was charged more to 

compensate the guardian for work performed 

for an indigent individual. FSGA is careful to 

note that this practice is inequitable and unfair 

to the person who is paying more to make up 

for the unmet need for public guardianship in 

the community, but anecdotally this practice 

persists in Florida and other states. Although a 

discussion of financial exploitation by guardians 

is offered elsewhere in the report, it’s worth 

noting that practices can lead to the perception, 

whether accurate or not, that professional 

guardians are “fleecing” their clients. Families 

of individuals subject to guardianship, who may 

have their own stake in preserving assets they 

anticipate inheriting one day, often perceive 

guardianship as “. . . a closed system in which 

attorneys, fiduciaries and other professionals 

have associations with one another and loyalty 

to each other that may potentially override their 

professional responsibilities.”243 This perception 

may or may not be correct, but given previously 

identified significant shortcomings regarding 

the court’s ability to monitor guardianships or 

to subject accountings to any kind of close 

examination, it is easy to understand why 

some would jump to the conclusion that 

judges, lawyers, and professional guardians are 

engaged in a conspiracy to defraud their loved 

one. Ironically, their loved one may be being 

overcharged in part because the professional 

guardian has a large pro-bono caseload. This may 

be compounded by the fact that professional 

guardians and the attorneys who represent 

them may have to respond to actions taken by 

the family members of an individual subject to 

guardianship, and they are usually entitled to 

their hourly rate to do so. With hourly rates for 

probate attorneys reaching as high as $350 an 

hour and even higher in some regions of the 

country, this can very quickly make the costs 

associated with guardianship at least appear 

excessive. This can spiral into a scenario where 

everyone is pointing the finger of blame at each 

other while the assets that are supposed to be 

preserved and used to meet the individual’s 

needs are rapidly depleted, even though no one 

involved intended any harm to the “protected” 

individual. 

Several states have created oversight 

mechanisms outside of the judicial apparatus that 

are intended to regulate public and professional 

guardians, while those efforts are mostly aimed 

at addressing issues of fraud, they may have 

the impact of preventing the type of spiraling 

fees scenario previously described. The Office 

of Public and Professional Guardians (OPPG) in 

Florida, for example, created a mechanism for 

reporting complaints regarding a professional 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 99
guardian and the ability to sanction guardians, 

including suspension or revocation of their 

certification as professional guardians, without 

filing the complaint with the court. This may 

help detect and address situations where 

the guardian is actually committing abuse or 

failing to discharge their duties, but it also may 

prevent unnecessary and expensive judicial 

procedures in some cases. Additionally, OPPG 

can assess whether multiple complaints have 

been registered against a particular guardian and 

respond accordingly, whereas a court might not 

know that several people have issues with the 

same guardian’s actions.244

100 National Council on Disability
Overview of Concerns

Many of the individuals interviewed 

for this report told NCD that, in 

their experience, guardianship is 

an extremely dysfunctional system. Not only 

are there serious deficiencies in terms of the 

due process that is afforded to individuals 

facing losing their rights in a guardianship 

proceeding, there are significant problems once 

a guardianship has been 

established. National 

advocacy organizations 

and the media have 

highlighted the abuse 

of guardianships and 

conservatorships as 

a means to exploit 

people with disabilities 

and older Americans. 

Unfortunately, the ability 

of courts, advocates, 

and others to address 

this issue has been impeded by a number 

of factors, including the absence of accurate 

national information regarding the numbers of 

people affected by guardianships, the conditions 

under which a guardianship is imposed, the 

services and alternatives being offered, the 

frequency and nature of misfeasance by 

guardians, and the possible warning signs of 

abuse. However, several states are taking steps 

to increase their efforts to effectively monitor 

guardianships to ensure that individuals who 

find themselves subject to guardianship are 

protected from abuse, neglect, and exploitation 

by their guardians. Additionally, as previously 

noted, the President signed legislation in 2017 

that attempts to assist states in their efforts to 

ensure that older people, including those subject 

to guardianship, are protected from abuse.245

Guardianship: 

A Double-Edged 

Sword? 

Guardianship has been 

referred to as a doubleedged sword—an 

instrument designed 

to protect vulnerable 

people in society from 

abuse or neglect, while 

simultaneously removing 

fundamental rights, which may increase 

opportunities for such abuse.246 As Professor 

Michael Perlin stated, “At best, the guardianship 

will provide the personal care and property 

management that the [person with a disability] 

alone cannot handle. At worst, guardianship 

will deprive the individual of decision-making 

authority that he or she has the capacity to 

Chapter 7: Concerns Once Guardianships Are in Place

Guardianship has been referred 

to as a double-edged sword—

an instrument designed to 

protect vulnerable people in 

society from abuse or neglect, 

while simultaneously removing 

fundamental rights that may 

increase opportunities for such 

abuse.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 101
handle, and create the opportunity for personal or 

financial abuse.”247

Guardianship affects a person’s legal right 

to make some or all of the decisions in their 

lives, including those about finances, health 

care, voting, marriage, socializing, and working, 

among others. Guardianship can easily go 

beyond protecting rights and seriously interfere 

with self-determination, especially if guardians 

exercise control in areas where persons could 

make their own decisions either with or without 

support.248 Another legal scholar expressed 

concerns that “the total power which the law 

gives to guardians creates the possibilities for 

isolation and vulnerability that leads to, or at least 

permits, abuse.”249

While there are certainly many cases where 

families have made guardianship work for them, 

as well as many professional guardians who 

have taken the National Guardianship Association 

“standards of practice” and ethical guidelines 

to heart to promote the well-being and selfdetermination of people subject to guardianship, 

there are also many examples of overly restrictive 

guardianships and of financial, physical, and 

emotional abuse perpetrated by unscrupulous 

guardians. This chapter will explore some of 

the consequences of guardianship and propose 

recommendations for change. 

The Impact on Life Outcomes 

The justification for guardianship is that it is 

a means of protecting vulnerable individuals. 

However, when A. Frank Johns, an elder law 

scholar who often writes about guardianship, 

surveyed 22 projects, studies and conferences 

from 1961 to 1996, he was not able to 

identify any findings that clearly showed that 

guardianship leads to positive life outcomes for 

people who are subject to it. Even if they can 

show that guardianship preserves property, those 

prior investigations “. . . have also uncovered 

evils in guardianship: removing all rights; denying 

access, connections, and voice to those lost 

in guardianship’s gulag; and still continuing a 

process rooted in systemic perversities.”250

Johns wrote that the more recent studies of 

guardianship monitoring and public guardians 

“acknowledge that guardianship still limits the 

autonomy, individuality, self-esteem, and selfdetermination” of those subject to guardianship, 

and he expressed continued concerns that the 

legal system surrounding guardianship focused 

more on the interest in protecting a person’s 

property than the person him/herself.251

Guardianship orders impact the very decisions 

that define people as human beings, and thus 

have significant impact on the daily lives of 

people subject to them. Studies have found that, 

when a person loses the right to make his or 

her own decisions, there will likely be a negative 

impact on the person’s functional abilities, 

physical and mental health, and general wellbeing. One scholar talks about the “constructive 

isolation of guardianship” and its impact on 

Guardianship’s Impact on Life 

Outcomes

In a survey of 22 projects, studies, and 

conferences from 1961 to 1996, elder 

law scholar A. Frank Johns was unable to 

identify any findings that clearly showed 

that guardianship leads to positive life 

outcomes for people who are subject to it.

102 National Council on Disability
people.252 People subject to guardianship can 

“feel helpless, hopeless, and self-critical” and 

experience “low self-esteem, passivity, and 

feelings of inadequacy and incompetency,” as 

well as significantly decreased “physical and 

mental health, longevity, ability to function, 

and reports of subjective well-being.”253 Some 

scholars also argue that, because guardianship 

is sought based on a finding that a person 

lacks capacity, it can be demeaning and socially 

stigmatizing.254

Financial Abuse by 

Guardians

Although guardians 

are often appointed to 

protect an individual’s 

assets from waste 

or to prevent a “bad 

actor” from obtaining 

access through undue influence, fraud, or 

misrepresentation, ironically this often places 

guardians in the best possible position to 

financially exploit 

vulnerable individuals 

themselves. Two recent 

GAO reports attempt 

to ascertain the scope 

of this problem. Both 

reports focused on 

financial abuse of only 

seniors but, as noted previously, individuals 

are only subject to guardianship if they are 

“incapacitated,” which clearly means that, while 

the reports may not examine younger people 

with disabilities subject to guardianship, the 

senior individuals described in these reports 

are people with disabilities. In both reports, 

GAO noted that a lack of accurate data on 

guardianships made it impossible to determine 

whether guardianship abuse is widespread.255

However, the 2010 report detailed the cases 

of 20 guardians who improperly obtained 

$5.4 million in assets from 158 incapacitated 

victims.256 In addition to the theft or improper 

obtainment of assets, in some instances, 

guardians also physically neglected and abused 

their victims. The guardians in these 20 cases 

came from diverse professional backgrounds and 

were overseen by local 

courts in 15 states and 

the District of Columbia. 

GAO found several 

common themes across 

the 20 cases. In 6 of 

20 cases, the courts 

failed to adequately 

screen potential 

guardians, appointing 

individuals with criminal convictions or significant 

financial problems to manage high-dollar estates. 

In 12 of 20 cases, the courts failed to oversee 

guardians once they 

were appointed, allowing 

the abuse of vulnerable 

seniors and their assets 

to continue. Lastly, in 

11 of 20 cases, courts 

and federal agencies 

did not communicate 

effectively or at all with each other about abusive 

guardians, allowing the guardian to continue the 

abuse of the victim and/or others.257

In a more recent report published near the end 

of 2016, GAO found that while these problems 

persisted, states and federal agencies had begun 

to take steps to at least collect better data that 

can not only guide policymakers but also can 

Studies have found that, when 

a person loses the right to make 

his or her own decisions, there 

will likely be a negative impact on 

the person’s functional abilities, 

physical and mental health, and 

general well-being.

[T]he 2010 [GAO] report detailed 

the cases of 20 guardians who 

improperly obtained $5.4 million 

in assets from 158 incapacitated 

victims.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 103
catch malfeasance earlier. One such positive 

step that GAO identified in their report is the 

development of the National Adult Maltreatment 

Reporting System (NAMRS), a national reporting 

system based on standardized data submitted 

by state adult protective services (APS) agency 

information systems.258 In a hearing before the 

Senate Special Committee on Aging addressing 

the 2016 GAO reports findings, Cate Boyko, 

manager of the Conservator Account Auditing 

Program for the Minnesota Judicial Branch 

testified about the state’s “Conservator Account 

Monitoring Preparation and Electronic Reporting” 

system, better known as “CAMPER.” This 

electronic records system allows guardianship 

records to be monitored continuously for red 

flags that might indicate that exploitation is 

occurring. Additionally, it provides accurate and 

easily accessible data that can be audited on 

a regular basis to ensure that guardians of the 

property are managing money prudently and not 

engaging in exploitation. In order to encourage 

adaptation of this system to meet the needs of 

other states, CAMPER’s source code has been 

made available to other states who may want to 

replicate the system.259

Overbroad Guardianship 

As discussed in Chapter 3, limited guardianships 

were an important innovation in the second 

wave of guardianship reform, but its use remains 

inconsistent across the United States. In some 

cases, judges and professionals may draft overly 

broad guardianship orders to prevent parties 

having to return to court to expand the guardians 

authority as a disease such as Alzheimer’s 

progresses. Indeed, having to return to court 

in a guardianship case can have the effect of 

depleting the resources of the individual subject 

to guardianship, because unless indigent, he or 

she is ultimately on the hook for paying all the 

costs associated with guardianship. In several 

states there is a requirement that the individual 

be represented by counsel whenever they are 

faced with losing rights under guardianship. 

This means that, at a minimum, their estate will 

have to pay for two lawyers—one representing 

the person who is already under a limited 

guardianship but who allegedly lacks capacity 

in an additional area, as well as the guardian’s 

lawyer, who would normally be urging the court 

to expand the guardian’s authority—and for the 

fees assessed for the examination that would 

be required to determine the individual lacked 

capacity in an additional area. It is easy to see 

104 National Council on Disability
how this can quickly become a costly endeavor. 

However, a guardianship that removes more 

rights from the individual than necessary is 

legally and morally impossible to justify, even if 

there is a financial argument for it. 

As discussed elsewhere in this report, 

restoration cases can be similarly costly, and 

it may be that establishing guardianships that 

are overly broad may lead to an increase in 

petitions for restoration. As discussed further 

in Chapter 8, there are numerous alternatives 

that can be used instead of guardianship; these 

tools should also be used when possible to limit 

the scope of guardianship. However, given the 

difficulty identifying discreet areas of incapacity 

described in Chapter 5 and the financial and 

judicial economy arguments previously outlined, 

it seems unlikely that courts are going to truly 

embrace limited guardianships in the way we 

might have hoped. 

Implications for Voting

I think that one of the ways that you can 

really silence someone and make them 

feel not a part of society is by taking away 

something that’s as fundamental as the 

right to vote.

—NCD Interview Participant 

As NCD noted in its 2013 report, Experience of 

Voters with Disabilities in the 2012 Election Cycle, 

federal laws such as the Help America Vote Act 

(HAVA) have tended to focus on physical access 

to the polls by people with disabilities, “yet 

competency requirements imposed by state laws 

or by election officials or service providers also 

present challenges for voters with disabilities.” 

Thirty-nine states have laws that restrict the right 

to vote based on competency: 25 states require a 

court to specifically determine that the individual 

lacks the capacity to vote in order for incapacity 

to justify disenfranchisement; 10 states provide 

that a person “under guardianship” is barred 

from voting outright; 4 states bar those who have 

been deemed “non-compos mentis” from voting 

(defined differently in each state); and 7 states 

prohibit “idiots,” “insane persons,” or those of 

“unsound mind” from voting.260 Along with 

other aspects of guardianship law described in 

Chapter 2:

the rationale for disenfranchisement 

changed from one of dependency as 

a marker of who was or wasn’t a full 

political citizen, to perceived lack of mental 

competency in the mechanics of voting. 

All the while, the legal system maintained 

that lunatics and idiots did not possess the 

requisite minds for voting.261

This issue rose to national prominence in the 

2016 election. As widely reported at the time, 

a former National Public Radio producer named 

David Rector was placed under conservatorship 

following a brain injury. He went to court to 

ask for restoration of his right to vote under 

California law,262 which changed in 2016. Under 

the new law, the court could only remove the 

right to vote after making a specific finding that 

the individual was unable to express a desire 

to vote. Mr. Rector was successful in getting 

his right to vote restored, and his story raised 

awareness of this important voting rights 

issue.263 Sadly, in most states, individuals who 

are subject to guardianship may not realize 

that they could lose their right to vote even 

if the subject of voting is never raised at the 

guardianship hearing. These determinations 

that an individual is incapable of voting can be 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 105
their franchise abused than other people with 

disabilities and older individuals. 

Sexuality and Guardianship

Sexuality is an incredibly broad and incredibly 

fraught topic for people with disabilities that 

raises issues not only about consent and mental 

capacity, but also “the forced sterilization of 

[people with disabilities], the rights of [people 

with disabilities] in institutions to have sex and 

be free from sexual abuse, and the rights of 

lesbian, gay, bisexual, and transgender (LGBT) 

[people with disabilities].”268 Against this complex 

backdrop, NCD recognizes that “the desire 

to enter into intimate personal relationships, 

including sexual 

relationships, is one 

of the most personal 

rights there is” and that 

“. . . desire is no less 

important for the many 

adults with disabilities 

who are under some 

form of guardianship.”269

Although disability and sexuality has long been 

a taboo subject, and there are still pervasive 

and destructive myths surrounding disability 

and sexuality, disability organizations such as 

The Arc of the United States and the American 

Association on Intellectual and Developmental 

Disabilities have long recognized that people with 

intellectual disabilities must have their sexual 

rights “affirmed, defended, and respected.”270

Similarly, in the context of guardianship, the 

National Guardianship Association Standards of 

Practice provide:

[t]he guardian shall acknowledge the 

person’s right to interpersonal relationships 

challenged as discriminatory if they remove the 

right to vote from individuals due to disability 

or supposed “mental incompetence” despite 

there being no specific finding that the person 

lacks the ability to make decisions specific to 

voting. On the other hand, where courts do 

seek to explore whether an individual subject 

to guardianship should be allowed to vote, 

“[p]robate courts . . . sometimes ask individuals 

who are the subject of guardianship proceedings 

to demonstrate an understanding of elections 

and politics that goes far beyond what is 

expected of the general public before they 

are permitted to vote.”264 As previously noted, 

California is one of four states to have adopted 

the standard urged 

by the American Bar 

Association’s House of 

Delegates, which is that 

the right to vote should 

only be removed based 

on incapacity if the 

individual cannot express 

“a specific desire to 

participate in the voting process.”265 Although 

Maryland, Nevada, and New Mexico are the only 

other states that use this standard, the standard 

is nonetheless consistent with the Voting 

Rights Act, which prohibits states from applying 

restrictive and unequal tests to determine who 

is qualified to vote.266

Some express concerns that allowing people 

with significant cognitive disabilities to vote could 

lead to widespread voter fraud. There is some 

evidence that voters in long-term care facilities 

who utilize absentee voting are vulnerable to this 

kind of fraud.267 However, it is not clear whether 

individuals who are subject to guardianship 

would, as a group, be more likely to have 

Sadly in most states, individuals 

who are subject to guardianship 

may not realize that they could lose 

their right to vote even if the subject 

of voting is never raised at the 

guardianship hearing.

106 National Council on Disability
and sexual expression. The guardian shall 

take steps to ensure that a person’s sexual 

expression is consensual, that the person 

is not victimized, and that an environment 

conducive to this expression in privacy is 

provided.271

Particularly for people with intellectual 

disabilities, who many in society frequently 

describe as having a mentality that correlates 

with a child’s age, society is uncomfortable 

with the idea of these individuals having sexual 

feelings, and in some cases justifiably concerned 

about an individual’s ability to make an informed 

decision about sexual relationships. Concerns 

about the very real 

possibility of sexual 

abuse are too often 

justified. According to 

the Bureau of Justice 

Statistics, between 2011 

and 2015, people with 

all types of disabilities 

are more than three 

times as likely to be 

victims of rape or sexual 

assault as their peers without disabilities, and 

people with cognitive disabilities were the 

most likely to be victims of all types of violent 

crimes among the disability types measured.272

National Public Radio reports that, according to 

unpublished Justice Department data, the risk 

of sexual abuse faced by people with intellectual 

and developmental disabilities may be seven 

times higher than for the general population.273

NCD has long recognized that “rights protection 

programs must be established to reflect the fact 

that women and girls with disabilities are subject 

to double discrimination in society and require 

protections against physical and sexual abuse 

in the family and in the very social programs 

created by society to serve them . . .”274 It’s worth 

noting that guardianships can also sometimes 

arise out of a family’s desire to protect an adult 

child or older loved one who might be vulnerable 

to sexual abuse and might not be able to 

offer informed consent to enter into a sexual 

relationship. 

As discussed earlier in this report, all adults 

are presumed capable of making decisions for 

themselves. This presumption is true of sexual 

relationships, as well as expressed by states’ 

age of consent for sexual activity, which is most 

often between 16 and 18 years old. Additionally, 

states also define 

the circumstances of 

sexual incapacity in 

which circumstances 

negate consent, such as 

intoxication, age, being 

asleep, being in the 

custody of the state, or 

mental disorders.

While no one wants 

to see predatory or 

exploitive behavior against individuals who 

may not be able to consent, or who may have 

limited ability to express that they are even 

being victimized, these laws do create confusion 

regarding the circumstances under which a 

person who is subject to guardianship, or whose 

ability to offer informed consent is questionable, 

could ever have consensual sex. Additionally, 

guardians are uniquely positioned to police with 

whom the individual subject to guardianship 

can associate, creating a situation where the 

individual is only allowed intimate contact 

with partners of whom the guardian approves. 

[G]uardians are uniquely positioned 

to police with whom the individual 

subject to guardianship can 

associate, creating a situation 

where the individual is only allowed 

intimate contact with partners of 

whom the guardian approves.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 107
In some cases, the guardian might have the 

person’s best interests at heart, but this scenario 

can also become deeply problematic. 

As an example of the problems that can 

arise, in the case of In re Guardianship of 

Atkins, a gay man suffered an aneurysm and 

his parents subsequently became his legal 

guardians, immediately preventing his longtime boyfriend, with whom he had lived prior 

to his hospitalization, from visiting him because 

they disapproved of the relationship. The court 

upheld the right of the parents to prevent the 

men from even seeing each other, saying that 

“Patrick’s parents had the ultimate and sole 

responsibility . . . to determine and control 

visitation with and access of visitors to Patrick 

Atkins in his best interest.”275

Similarly, a lawyer 

who was interviewed 

for this project recalled 

several cases in which 

guardianship was sought 

for the expressed 

purpose of preventing 

the individual subject to 

guardianship from having 

an intimate relationship of which the guardian did 

not approve. In one case, a mother had sought 

and obtained guardianship over her 19-year-old 

daughter who was deaf and had some emotional 

problems in order to prevent her from seeing 

her somewhat older girlfriend. In another case, 

a father sought guardianship over his young 

adult daughter with a mild cognitive impairment 

because she had created a profile on a dating 

website. In his order, the judge specifically noted 

that this behavior on her part opened the door 

to sexual exploitation and a guardianship was 

necessary to protect her. The father’s motives 

in this case might be understandable, but in an 

era when 27 percent of adults ages 18 to 24 

use online dating websites, the conclusion that 

seeking companionship through an online dating 

profile opened the door to exploitation should be 

questionable at best, especially as legal grounds 

for guardianship.276

One can clearly recognize and understand 

the consequences of failing to protect an 

individual subject to guardianship from sexual 

exploitation or abuse. However, there is 

also harm in preventing individuals who are 

subject to guardianship from having an outlet 

for sexual expression, which the Supreme 

Court has recognized as being “[a]t the heart 

of liberty . . . .”277 This right is as important to 

individuals subject to guardianship as it is to 

everyone else, even 

if it makes some 

uncomfortable or 

uneasy.278 Although 

“the degree to which 

[the right] extends 

to people who have 

cognitive impairments 

remains unexplored,”279

there can be no doubt that exercising control 

over another human being’s opportunities for 

sexual expression implicates an important liberty 

interest. 

The National Guardianship Association 

(NGA) has taken an important step in asserting 

that guardians should recognize the right of 

individuals subject to guardianship to engage 

in sexual expression and take steps to ensure 

that such sexual expression is consensual. 

Additionally, NGA has made information available 

to professional and family guardians at its annual 

conferences and on its website that can help 

[T]here is also harm in preventing 

individuals who are subject to 

guardianship from having an outlet 

for sexual expression, which the 

Supreme Court has recognized as 

being “[a]t the heart of liberty ....”

108 National Council on Disability
guide these discussions and help guardians make 

good decisions with respect to these issues.280

However, taking these steps alone may still 

prove insufficient to protect an individual from 

having his or her sexual autonomy essentially 

revoked while subject to guardianship. As 

discussed in Chapter 8, the process of supported 

decision making might be a more effective way 

of ensuring that people subject to guardianship 

or who need decision making assistance are 

not completely deprived of a right to sexual 

expression.

Jurisdictional Issues

Because guardianships are created under state 

law, a host of vexing problems can arise that 

have to do with which state has jurisdiction 

over an individual 

who is alleged to be 

incapacitated or who is 

subject to guardianship. 

For example, what state 

has jurisdiction over 

an individual subject 

to guardianship who is 

receiving treatment in a specialized facility in 

another state? Can a state such as Florida impose 

a guardianship on an individual who is a snowbird and only lives in the state during the winter 

months? Is a relative who lives in a different 

state than an individual subject to guardianship 

a more appropriate choice as a guardian than a 

professional or public guardian within the state? 

As Sally Balch Hurme, a prolific author on issues 

related to guardianship and aging, has pointed 

out, “guardianship has been traditionally ‘strictly 

local.’ But in today’s mobile society, it is difficult 

to contain guardianship issues within one state’s 

boundaries.”281

The Adult Guardianship and Protective 

Proceedings Jurisdiction Act (UAGPPJA) is a 

uniform law that has been adopted in all but 

three states (Florida, Texas, and Kansas) and 

helps clarify which state’s laws govern particular 

situations within guardianship cases.282 The 

UAGPPJA provides a number of advantages:

■ Provides a clear process for identifying 

which state may appoint a guardian for an 

adult who has homes in multiple states

■ Facilitates the transfer of guardianships 

when a guardian and person subject to 

guardianship move from one state to 

another 

■ Enhances interstate recognition and 

enforcement of out-of-state guardianship 

orders, enabling a 

guardian to act in multiple 

states if necessary (e.g., 

to sell property in state B 

even though the person 

subject to guardianship 

lives in state A)

■ Provides a simplified process for courts 

to communicate and cooperate with each 

other, making it easier for courts and parties 

to communicate, maintain records, and 

respond to requests 

■ Provides for emergency appointment 

of a guardian when a person subject 

to guardianship is or who is allegedly 

incapacitated is in a state but does not 

live there

The act clarifies the rights and responsibilities 

of states and parties in guardianship cases 

that cross state lines, which can help ensure 

greater due process for individuals subject to 

“[G]uardianship has been 

traditionally ‘strictly local.’ But in 

today’s mobile society, it is difficult 

to contain guardianship issues 

within one state’s boundaries.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 109
guardianship and save resources for families. 

Additionally, the law puts in place procedures 

that allow courts to take jurisdiction over 

individuals who were brought to a state 

through “unjustifiable conduct” or for the 

purposes of exploitation. The ABA collected 

stories of multistate guardianship issues from 

2008 through 2009 that vividly detail how the 

UAGPPJA improves the way guardianships 

function across state lines. However, there may 

still be situations where the UAGPPJA does not 

provide all the answers. The goal of the UAGPPJA 

is in large part to allow for the easy transfer of 

cases from one state to another when a person 

with a disability moves across state lines. 

However, there have been well-documented 

problems with specialty 

care facilities that 

advertise their services 

across state lines to 

guardians who then 

send individuals to the 

facility for treatment. 

In some cases, there 

have been allegations 

that the facilities are 

not providing the best 

care, but the out-of-state guardian is not readily 

able to ascertain the problems or visit the 

individual regularly, and the individual may not 

have access to the courts in their home state or 

in the state where the facility is located. In that 

case, transferring the guardianship to the state 

where the facility is located could jeopardize 

the person’s eligibility for important sources of 

financial support such as Medicaid waiver, statebased trust funds (e.g., for people with head 

injury), and worker’s compensation. Additionally, 

a local court taking over the case of an individual 

who ultimately wants to and should return to 

their home state where they may have better 

natural supports may actually make it harder for 

the person to achieve that goal.283 These issues 

were examined in a Congressional hearing in 

1992.284 However, according to a series of reports 

from the Center for Investigative Reporting, the 

problem continues unabated.285

Restoration of Rights

As outlined throughout the report, there are 

three instances in which a review for the possible 

restoration of rights is in order:

■ When guardianship is imposed and the 

individual did not meet the legal standard of 

incapacity 

■ When the individual 

did meet the definition 

of incapacity but 

a less restrictive 

alternative than 

guardianship would 

have provided 

sufficient assistance 

and protection 

■ When an individual subject to guardianship 

regains capacity either due to a medical 

recovery or because he or she has acquired 

the necessary knowledge and skills to make 

and implement decisions 

When any of these situations occur, there 

must be a way to restore the rights of a person 

subject to guardianship. Perhaps not surprisingly, 

although each state provides for means to 

terminate a guardianship and restore one’s 

rights, there is little data on the frequency of or 

circumstances under which such restorations 

[T]ransferring the guardianship to 

the state where the facility is located 

could jeopardize the person’s 

eligibility for important sources of 

financial support such as Medicaid 

waiver, state-based trust funds ..., 

and worker’s compensation.

110 National Council on Disability
occur. One of the individuals subject to 

guardianship who was interviewed for this report 

summarized the difficulty she encountered in 

terminating guardianship: “I had to prove myself 

over and over, and over again for like six months 

straight that I can budget my money and all that 

stuff and they finally gave me my rights back. . . . 

it took three years to get my rights back.” 

ABA Commission on Law and Aging/

Virginia Tech Center for Gerontology 

Study

Although the lack of reliable data limits analysis, 

a 2017 study conducted by the ABA Commission 

on Law and Aging in conjunction with the Virginia 

Tech Center for Gerontology sheds some light.286

Since this is the only report of its kind, this 

section will rely heavily on this report and its 

findings. Therefore, throughout this section, it 

will simply be referred to as the ABA Restoration 

Report or study for clarity. 

The authors of the ABA Restoration Report

identified and examined each state’s statutes 

and procedures governing restoration, and 

analyzed reported cases going back to 1845, 

with a particular focus on 57 cases since 1984. 

An interdisciplinary roundtable of experts in 

guardianship, aging, and disability—including 

NCD staff—was convened to develop the 

findings and recommendations in the report. 

Even though the report’s findings are interesting, 

many questions are left unanswered due to 

limitations in available data. 

Only four states could provide data on 

restoration cases at the probate court level, 

for a total of 275 restoration cases:

■ Of those 275 cases, 80 percent involved 

individuals who were age 17 to 59; more 

than 65 percent lived in their own home or 

the home of their family; and 70 percent had 

estates of less than $50,000.

■ In approximately 33 percent of the cases, 

the reason for guardianship was mental 

illness, in approximately twenty percent of 

the cases the individual had an intellectual 

disability, and only a small number of cases 

involved people with dementia.

■ In almost 75 percent of the cases, the 

guardianship was over both person and 

property.

Eighty-four of the cases were pulled from 

public guardianship files, and were therefore 

excluded from data calculations because these 

cases all involved guardianships with common 

characteristics (e.g., minimal assets and income, 

nonfamily guardian) that would throw off the 

Circumstances Warranting a Review 

and Possible Restoration of Rights

■ When guardianship is imposed and the 

individual did not meet the legal standard 

of incapacity 

■ When the individual did meet the definition 

of incapacity but a less restrictive 

alternative than guardianship would 

have provided sufficient assistance and 

protection 

■ When an individual subject to guardianship 

regains capacity either due to a medical 

recovery or because he or she has 

acquired the necessary knowledge and 

skills to make and implement decisions

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 111
analysis of variables the study was attempting to 

understand. However, from the remaining court 

files, family guardians were appointed 68 percent 

of the time, and private professional guardians 

or private for-profit guardianship agencies were 

guardians 24 percent of the time.

It’s encouraging that in 40 percent of the 

cases, the petitioner who was seeking to have 

the individual’s rights restored was the guardian, 

and often a family member. In almost as many 

cases, the petitioner was the individual subject 

to guardianship. The report also notes that the 

vast majority of these cases are “uncontested,” 

meaning that no one opposes the assertion that 

the person should get his or her rights back—at 

least not as an official matter of record with the 

court. Additionally, in approximately 42 percent of 

the cases, the individual subject to guardianship 

was not represented by a lawyer, but since 

most were uncontested cases, it is perhaps 

not surprising that they were nonetheless 

successful. It’s difficult to draw many conclusions 

from the data because it did not include cases 

where restoration petitions were filed but not 

granted. North Carolina did, however, provide 

the dispositions of 223 cases from 2010 through 

2015. Still, among the North Carolina cases about 

three-quarters were successful.

The authors of the study note that: 

. . . the court file research produced a 

snapshot of a “successful restoration 

case” across states. In this typical case, 

the individual is about 40 years old, lives 

at home, has an estate under $50,000, 

and has a mental illness or perhaps a 

dual diagnosis with other conditions. The 

guardian is most likely a family member. 

After two to five years, the individual 

is restored, and his or her rights are 

returned. Either the family guardian or the 

individual himself or herself petitions for the 

restoration, and it is the first attempt. The 

case is not contested. The individual has no 

legal representation—or may have a courtappointed attorney or guardian ad litem. The 

case is built on a combination of clinical and 

lay evidence. The court restores all rights 

without any particular terms.287

The authors conclude that these cases show 

that the restoration process can work, but that 

there might be many cases in which a petition is 

never filed because the person, his or her guardian, 

or his or her family does not know that the person 

is entitled to seek restoration. Additionally, it was 

noted by some at the roundtable that there might 

be many cases in which the person indicates 

to the court that he or she would like his or her 

rights back but receives no response; or in which 

the persons asks his or her guardian for help with 

the process and is denied. Finally, there might be 

many more cases in which rights are not restored 

because the guardian or another person contests 

the petition for restoration, essentially operating as 

the opposing party. Far less is known about these 

cases and their disposition. 

State Laws Vary on Restoration

The statutes in each state vary widely in key 

aspects of the restoration process, and as in 

other areas of guardianship, vary in practice 

from the process prescribed in statute. In the 

roundtable discussions, participants identified 

potential issues that impact the likelihood that 

a person subject to guardianship will have their 

rights restored to include the following: 

■ Awareness of restoration as an option

■ Access to the courts

112 National Council on Disability
■ Periodic court review 

of the continuing 

need for guardianship 

■ The right to counsel 

(and the role of 

appointed counsel as 

zealous advocate and 

not guardian ad litem)

■ The role of the guardian in restoration cases

■ The focus on supports and alternatives to 

guardianship

■ Evidentiary standards

Some of these issues are addressed in 

the revised Uniform Act (UGCOPAA), which 

provides that within 14 days of appointment 

of a guardian, the individual and other named 

parties (generally family and the guardian) must 

receive notice of their right to seek restoration. 

In addition, four states already have a “bill of 

rights” for individuals subject to guardianship 

that specifically enumerate the right to seek 

restoration. The revised act also requires 

guardians to submit annual reports that, among 

other things, include recommendations regarding 

the continued need for guardianship and whether 

any of the individual’s rights should be restored. 

For example, Tex. Estates Code § 1101.103 

requires a physician’s certificate to state whether 

improved functioning is possible and to state the 

time-frame for reevaluation. 

In recognition of the fact that individuals 

subject to guardianship might not have the 

means or know-how to file a petition to have their 

rights restored, 20 state statutes and the revised 

act permit informal requests such as handwritten 

notes or verbal requests by an individual asking 

to have their rights restored. However, there is no 

way to know how effective 

these communications 

are, and some roundtable 

participants expressed 

concern that such 

requests sometimes are 

ignored and do not lead 

to formal restoration 

proceedings. The study does note that there 

were several examples of this approach being 

successful in the case files.

The Role of Guardians in Restoration 

Cases

The role of the guardian in restoration cases 

can also be problematic. The report notes that 

“. . . it appears that the guardian’s opposition may 

have negatively affected the disposition, as only 

33 percent of petitions were successful when 

the guardian opposed the petition, but 50 percent 

20 state statutes and the revised 

act permit informal requests such 

as handwritten notes or verbal 

requests by an individual asking 

to have their rights restored.

Issues Impacting the Likelihood 

of Restoration of Rights

■ Awareness of restoration as an option

■ Access to the courts

■ Periodic court review of the continuing 

need for guardianship 

■ The right to counsel (and the role of 

appointed counsel as zealous advocate and 

not guardian ad litem)

■ The role of the guardian in restoration cases

■ The focus on supports and alternatives to 

guardianship

■ Evidentiary standards

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 113
were successful when the guardian was in 

support.”288 Some view guardian opposition to 

restoration petitions as a conflict of interest, 

especially since the estate of the individual 

subject to guardianship will pay for any of the 

activities taken in opposition to the petition. The 

cost of seeking restoration can be prohibitive, 

although some states are in the processes of 

amending their statutes and practices to make 

it less expensive. After an appellate court in 

Colorado concluded that a guardian can oppose 

a motion by the person subject to guardianship 

and can charge the estate of the person for 

doing so, the Colorado legislature revised the 

guardianship statute and prevented guardians 

from opposing or interfering with a petition for 

restoration sought by the individual. However, 

the situation highlighted by the Colorado case 

continues to be a problem in other states. 

The case law review of the report identified 

several cases in which the court ordered the 

payment of the attorney’s fees of the guardian 

out of the estate of the person subject to 

guardianship, leading the authors of the report to 

conclude, “it appears that an individual subject 

to guardianship may need to not only battle 

the fiduciary who is appointed to act on the 

person’s behalf, but also pay steeply for it.”289

However, some at the roundtable felt that there 

were circumstances under which a guardian 

may reasonably have a good faith belief that the 

person continues to benefit from guardianship, 

“. . . and continuing protection is needed against 

exploitation or undue influence.”290

Attorneys in Restoration Cases

Another related issue is the individual’s right 

to an attorney in restoration cases and the role 

of the attorney. The revised Uniform Act and 

18 states require the same procedural safeguards 

that apply when guardianship is first sought. 

Twelve state statutes require the appointment 

of counsel when an individual subject to 

guardianship seeks restoration of rights. 

However, as with representation on the “frontend” of guardianship, the role of counsel in these 

cases is not always clear. As noted earlier in this 

report, the ABA Model Rules of Professional 

Conduct Rule 1.14 call for the lawyer to act 

in the traditional advocacy role of an attorney 

for his or her client even when the client has 

diminished capacity, unless the lawyer feels that 

there is a substantial risk of harm to the client. 

This leaves open the possibility that the attorney 

will independently determine that the individual 

continues to need a guardian and fail to advocate 

for his or her client’s wish to have rights restored. 

This may spring from misguided paternalism or a 

genuine concern for the health and safety of the 

client. Regardless of the reason, the result is that 

the individual does not have effective counsel 

advocating for the individual’s desired outcome. 

Furthermore, in the experience of some of the 

individuals at the roundtable, the attorney who 

represented the client in the original guardianship 

proceeding is often appointed to represent the 

individual when seeking to restore rights. That 

attorney may or may not have advocated against 

the guardianship in the first place and is certainly 

unlikely to raise arguments that are based on 

evidence that his or her client was erroneously 

determined to lack capacity in the first place. 

The Restoration Report raises the question 

of whether legal services or Protection and 

Advocacy Attorneys are representing individuals 

seeking to have their rights restored. The 

report’s case file research revealed that legal 

services attorneys represented individuals in 

114 National Council on Disability
only a couple of cases, and Protection and 

Advocacy (P&A) attorneys did not play a role 

in any of the cases examined. This result was 

somewhat discouraging given that the P&As are 

federally funded to provide legal and advocacy 

services for people with a variety of disabilities, 

so you might expect them to play a role in the 

restoration of the civil rights of individuals subject 

to guardianship. However, “A 2017 report by 

the National Disability Rights Network (NDRN) 

found that 84 percent of the 50 P&A agencies 

responding to a survey currently represent 

or could represent [people] with disabilities 

in guardianship issues.”291 The NDRN report 

goes on to note that when P&As get involved 

in guardianship cases, 

it is usually to help an 

individual with full or 

partial restoration of 

rights. One attorney 

with experience working 

as a P&A attorney in 

restoration cases who 

participated in the 

roundtable reported that, in order to get the court 

to allow her to represent clients for whom she 

had filed a restoration of capacity instead of the 

court-appointed attorney, she would regularly 

file an affidavit indicating that her client would 

not be charged for her services regardless of 

the outcome. Ironically, in several cases she 

reported that the guardian and his or her attorney 

were regularly paid out of the estate to oppose 

the petition for restoration. Additionally, in one 

case, the court effectively made the original 

attorney co-counsel, although he subsequently 

appeared as a witness and testified that the 

individual subject to guardianship continued to 

need a guardian. The individual’s rights were fully 

restored after several hearings, but not before the 

attorney who testified against the petition was 

paid out of the estate of the individual. 

While it is a positive development that P&A 

attorneys are getting involved in guardianship 

cases in recognition of guardianship as a critical 

civil rights issue for people with disabilities, the 

payment mechanisms are problematic when a 

publicly funded attorney is put in the position of 

representing a client whose money will be used 

to pay their opposing counsel. Given the limited 

availability of funding for P&As and legal services, 

it’s common practice for attorneys in those 

organizations to try to recoup attorney fees from 

the opposing party (often the state) when they 

are successful. However, 

in guardianship cases, 

the only person paying 

for anything is often the 

person who is subject to 

guardianship, although 

in a few instances when 

the individual is indigent 

and the state, county, 

court, or other mechanism is used to pay the 

court costs and other fees. In most cases, unless 

there is proof that the guardianship was filed in 

bad faith or some other malfeasance occurred in 

the course of the guardianship, there is no one 

to recover from other than the individual subject 

to guardianship. Since P&As do not charge 

their clients for the services they provide, they 

would not be able to recoup fees and costs from 

the individual. Restoration cases can be very 

complex and time consuming, and the costs 

can be considerable—especially if they have to 

hire, and pay for, an independent expert to refute 

the testimony of the court-appointed expert. 

Under the circumstances, it’s actually surprising 

[T]he payment mechanisms are 

problematic when a publicly funded 

attorney is put in the position of 

representing a client whose money 

will be used to pay their opposing 

counsel.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 115
that P&As and legal services are willing to take 

these cases at all, but according to the NDRN 

report, many of them are. Finally, many P&As 

provide information to people with disabilities and 

their families regarding guardianship, including 

their right to have the need for guardianship 

reviewed and about the availability of alternatives. 

For example, the Kentucky P&A makes these 

resources available on their website.292

Evidentiary Standard/Burden of Proof

The evidentiary standard and burden of proof 

could also impact the success of restoration 

cases. According to the report, 34 jurisdictions 

fail to outline an 

evidentiary standard in 

statute, “leaving wide 

discretion for courts 

and uncertainty for 

litigants.”293 Only two 

states, the UGPPA, 

and the revised Act 

make it clear that all 

the petitioner has to establish is a prima facie 

case for restoration unless the opposing party 

submits clear and convincing evidence that 

the guardianship should continue. Eight states 

require the petitioner to prove that there is clear 

and convincing evidence that the person should 

have their rights restored, and in seven states 

the petitioner must meet a preponderance of 

the evidence standard. Mississippi leaves the 

decision entirely up to the judge, requiring “such 

proof as the chancellor may deem sufficient.”294

This lack of clear standards creates a very 

difficult environment for attorneys who rely on 

evidentiary standards not only to plan and build 

their case, but also to make decisions about 

their likelihood of success. This uncertainty 

unfairly prejudices the rights of individuals 

subject to guardianship. 

Many state standards also remain unclear 

whether restoration is appropriate only when 

an individual’s capacity has been established 

legally, or if restoration might also be appropriate 

in instances in which, although the individual 

still meets the legal definition of incapacitated, 

a less restrictive alternative such as supported 

decision making is either in place or could be if 

the guardianship is dissolved. The recent Ross 

v. Hatch case in Virginia and In the Matter of the 

Guardianship of Dameris L. in New York, and 

in the 1995 case Hedin v. Gonzalez from Iowa 

stand for the proposition 

that guardianship may 

be removed if sufficient 

supports are in place, 

even if the person still 

meets the definition of 

incapacitated according to 

the state statute. 

Restrictions on Restoration Efforts

Because guardianship represents a very serious 

curtailment of a person’s liberty, it is of the 

utmost importance that individuals subject to 

guardianship be given a real opportunity to seek 

to have their rights restored when that becomes 

appropriate. However, as noted earlier, the 

burden of paying for restoration or even attempts 

at restoration generally fall on the person 

seeking to have his or her rights restored. Since 

preserving the individual’s assets is one of the 

primary purposes of guardianship, it’s perhaps 

not surprising that a few states curtail the ability 

of petitioners to file petitions for restoration of 

capacity. In all, 17 states either require or allow 

courts to specify that a petition for restoration 

The evidentiary standard and 

burden of proof could also 

impact the success of restoration 

cases. According to the report, 

34 jurisdictions fail to outline an 

evidentiary standard in statute ...

116 National Council on Disability
may not be filed within a given time-frame, not 

to exceed one year. In a few additional states, 

the statute provides that a petition for restoration 

cannot be filed within six months after an attempt 

at restoration has failed.295

While, regrettably, these restrictions have a 

chilling effect on individuals attempting to file for 

restoration of rights, they could be necessary 

to protect the resources of individuals who may 

file numerous futile and ill-conceived petitions 

for restoration, sometimes influenced to do so 

by individuals seeking to exploit them. However, 

within these limitations, individuals who are 

subject to guardianship must have access to 

the courts so that the guardianship can be 

removed and rights restored at the earliest 

possible opportunity, whether it’s because the 

decision to impose a guardianship in the first 

place is called into question, the individual’s 

condition has improved, the person’s functional 

abilities developed or have been regained, or 

supports and services have been identified that 

alleviate the need for guardianship. The authors 

of the restoration report note that data on the 

frequency of restoration is almost nonexistent, 

but it seems to be a rare occurrence. This raises 

the very real possibility that a large number of 

people continue to be subject to guardianship 

even though they have developed skills and 

alternatives that might allow them greater 

independence. 

As we have noted throughout this report, 

continuation of the deprivation of one’s selfdetermination through the vehicle of guardianship 

is a violation of one’s basic civil rights and 

liberties unless no less restrictive alternative 

can be found. When an individual subject to 

guardianship is willing to reach out and ask 

the court to restore their rights, that, in and of 

itself, is a clear indication that the individual is 

keenly aware that he or she has lost something 

important that is worthy of pursuing restoration 

of, and the court systems and state laws should 

work in such a way as to welcome ready review 

of whether a guardianship remains justifiable and 

appropriate. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 117
118 National Council on Disability
Chapter 8: Less-Restrictive Alternatives to Guardianship

T

hroughout this report, NCD has noted that 

guardianship law has evolved significantly 

over the past three decades. However, 

guardianship law, despite its reforms, has not 

kept pace with advances in civil rights over the 

past 40 years and remains a system that would 

be recognizable to the ancient Greeks. With 

that in mind, guardianship is not the only way to 

address some of the difficult issues that arise 

when a person’s disability or age raises questions 

about his or her ability to make decisions 

concerning health and welfare or to manage his 

or her property. 

Olmstead Necessitates Finding 

Alternatives to Guardianship

In 1999, in the Olmstead decision, the U.S. 

Supreme Court interpreted the ADA to give 

rise to an obligation to provide services to 

people with disabilities in the least restrictive 

environment that will meet their needs.296

Such rights do not disappear when an individual 

becomes subject to guardianship. As one 

guardianship professional interviewed for this 

report concluded, “It is the responsibility of the 

guardian to make sure that those rights of the 

individual are honored and respected.” Both 

within and outside of the guardianship context, 

many advocates, scholars, and legal experts are 

considering ways to better integrate people with 

disabilities into the decision making process. 

Leslie Salzman, a law professor who is perhaps 

best known for advancing the proposition that 

guardianship can constitute a violation of the 

ADA’s integration mandate, has called for society 

to radically rethink guardianship and the whole 

idea of surrogate decision making: 

Rather than focusing on how to improve 

the guardianship process, we will consider 

innovative ways to integrate [people] 

with diminished mental capabilities to 

the greatest extent possible into the 

management of their personal and 

property affairs. With the appropriate 

level of decision-making support, [people] 

with disabilities will be further integrated 

into the “theater” of human activity and 

guardianship will rarely be needed and 

will be utilized in only the most extreme 

circumstances.297

Introduction to Alternatives

Guardianship statutes, for the most part, 

already require courts to look to less-restrictive 

alternatives before imposing a guardianship. 

These alternatives may be informal or formal and 

may themselves be restrictive. NCD’s research 

found that guardianship can be at odds with the 

goals of promoting the self-determination of 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 119
people with disabilities, is fraught with 

constitutional issues, and potentially exposes 

people with disabilities to exploitation; this 

necessitates an analysis of alternatives to 

guardianship. This report is not intended to 

describe all of the alternatives in detail, but these 

alternatives are important steps in the path 

forward for people with disabilities who need or 

want decision making assistance and the people 

who care about them. 

Each of the following alternatives offers 

slightly different solutions that can be modified 

to fit the circumstances of the individual and the 

people in their lives. What is more important 

than the particular 

method of decision 

making assistance is 

one’s commitment 

to understanding 

and incorporating the 

wishes and needs of the 

person into the decision 

making process, rather 

than focusing solely 

on protection. The 

primary alternative to 

guardianship should 

always be self-directed decision making—

sometimes called supported decision 

making—which encourages individuals to 

access whatever advice and counsel they’re 

comfortable with from family, friends, 

and professionals with whom they are in 

relationships of trust. However, some individuals 

may want or need more formal arrangements in 

order to implement the types of daily decisions 

that we all make in our lives. The circumstances 

of the individual, including their wishes, needs, 

resources, and availability of trustworthy 

support networks should be considered when 

considering alternatives to guardianship. 

As has been pointed out again and again 

throughout this report, people make bad, illinformed decisions all the time—and some of 

those people have disabilities and others do 

not. What is clear is that some individuals need 

or want assistance with decision making, and 

they should be able to readily access effective 

and meaningful alternatives to guardianship that 

enhance, rather than undermine, their selfdetermination. 

Although supported decision making has 

received a great deal of recent attention as an 

alternative, there are 

many other alternatives 

that have been used in 

lieu of guardianship for 

a long time, and many 

of them are also used 

in conjunction with 

supported decision 

making. Determining 

when an alternative 

to guardianship is 

appropriate and which 

one to use for which 

kind of circumstance or decision is no more 

of an exact science than determining when an 

individual lacks capacity and needs a guardian. 

As discussed in the following section, each of 

these alternatives carries with it the potential 

for misuse. However, if this report has shown 

anything it is that guardianship does not always 

offer the level of protection against abuse 

and exploitation that it is intended to, and the 

protection that it offers comes at a high price 

to the freedom of the individual subject to 

guardianship. As we move away from relying on 

NCD’s research found that 

guardianship can be at odds with 

the goals of promoting ... selfdetermination ..., is fraught with 

constitutional issues, and potentially 

exposes people with disabilities 

to exploitation; this necessitates 

an analysis of alternatives to 

guardianship.

120 National Council on Disability
guardianship and focus on assisting individuals 

with decision making rather than supplanting 

it, policymakers will need to explore innovative 

ways to prevent abuse while advancing selfdetermination.

This chapter will first discuss a model that has 

been developed by the ABA to help decide what 

decision making assistance a person may need. 

This is followed by a brief exploration of the most 

commonly used alternatives to guardianship and 

by a more extensive examination of supported 

decision making, which is emerging as the most 

promising and comprehensive alternative to 

guardianship. 

A Practical Tool for Considering 

Alternatives

Four sections of the ABA, with the assistance 

of the National Resource Center for Supported 

Decision-Making, designed the “PRACTICAL” tool 

to assist lawyers in identifying less restrictive 

alternatives to guardianships. The name of this 

tool is an acronym that comes from the nine-step 

process described following this paragraph. The 

tool is useful for attorneys advocating on behalf 

of a client facing guardianship, representing 

families who are thinking about seeking 

guardianship, serving as guardians ad litem, and 

serving as guardians or representing guardians 

who are considering whether rights restoration 

may be appropriate given the availability of 

existing alternatives. 

The PRACTICAL tool holds a great deal of 

promise for changing the way that lawyers 

think about their obligation to protect people 

with diminished capacity. Such a no-nonsense 

approach has the potential to operationalize 

finding alternatives to guardianship and to divert 

some would-be guardianships into less-restrictive 

alternatives. At the very least, using this tool 

provides a layer of assurance that alternatives to 

guardianship have been thoroughly considered 

and decreases the likelihood that an individual 

will end up in an unnecessary guardianship 

that unnecessarily curtails their liberty to make 

decisions for themselves. 

PRACTICAL Steps to Identify Less Restrictive Alternatives to Guardianships

The steps in the PRACTICAL process are as follows:298

1. Presume guardianship is unnecessary. This step encourages the lawyer to assume at 

the outset that there may be less restrictive alternatives that can address the individual’s 

need. 

2. Reason. This step encourages the lawyer to consider the reason that there are concerns 

about the individual’s ability to make decisions. 

3. Ask whether the concern may be caused by a temporary or reversible condition. This 

step encourages lawyers to screen for conditions or environmental factors that may be 

affecting decision making ability, but which could be mitigated or reversed, alleviating the 

need for guardianship. 

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 121
PRACTICAL Steps to Identify Less Restrictive Alternatives 

to Guardianships, continued

4. Community. This step encourages the lawyer to determine whether the concerns can be 

addressed by connecting the individual to family or community resources that can provide 

support and alleviate the need for guardianship. 

5. Team. This step encourages the lawyer to ask whether there is or could be a “team” in 

place that could assist with decision making and helps them identify potential supporters. 

6. Identify abilities. This step encourages the lawyer to recognize that the person may 

need assistance in some areas but have strengths in others areas. This step may include 

getting an evaluation by a professional or using the existing capacity handbook for lawyers 

discussed in Chapter 5. 

7. Challenges. This step encourages the lawyer to screen for potential challenges with the 

identified supports and supporters. Avoiding guardianship is not helpful if the alternative 

is not viable on a long-term basis or exposes the individual to potential abuse, neglect, or 

exploitation by putative supporters. 

8. Appoint. This step encourages the lawyer to examine whether the person is able to 

appoint a legal surrogate. In such cases, the lawyer should explore ways to establish 

powers of attorney and health care surrogates and identify other documents that can help 

supporters implement decisions consistent with the individual’s values and preferences. 

9. Limit. If there are areas where no less restrictive alternatives to guardianship can meet 

the individual’s needs, it may be necessary to move forward with a guardianship petition. 

This step encourages the lawyer to work to make sure the resulting order is as limited in 

scope as it can be.

Alternatives by Context

Financial Decisions

A recurring concern expressed in the interviews 

conducted for this report was the ability of some 

individuals to manage money and use their 

available and often limited resources effectively 

to make sure that they are able to take care of 

their basic necessities such as food, clothing, and 

shelter. The complexity of these issues varies 

considerably based on the type and amount of 

available resources an individual has. A young 

person with intellectual disabilities whose 

only monthly income comes from SSI benefits 

administered by the SSA will have different needs 

for assistance with money management than a 

retired person with dementia who has a sizable 

retirement account or pension—even though 

their cognitive functioning and comprehension 

of money management may be equally impaired. 

Accordingly, the options that are available 

may vary as well. Additionally, the source of 

the income will impact which alternative to 

guardianship is available and most appropriate. 

122 National Council on Disability
Banking Options 

One possibility that would likely be available 

in a broad range of circumstances falls under 

the general rubric of “banking options.” Online 

banking has flourished in the past decade or 

so and has fundamentally changed how we all 

use and manage money. According to the 2016 

U.S. Consumer Payment Study, only 11 percent 

of Americans prefer cash over debit or credit 

cards for most purchases, with 40 percent of 

Americans preferring to use credit and 35 percent 

preferring to use debit cards.299 According to 

the study, more and more Americans are paying 

bills online and through automatic payments and 

the majority of consumers use a debit or credit 

card to pay recurring bills while only 14 percent 

write monthly checks to pay recurring bills such 

as rent, gas, electricity, and cable. Along these 

same lines, the way we interact with banks has 

changed. In 2016, the majority of respondents 

indicated that they used a mobile banking app. 

This shift has impacted our economy on a macro 

level, but it also means that—on a micro level—

fewer and fewer of us regularly go into a bank to 

make transactions. In fact, on March 1, 2013, the 

treasury department stopped issuing paper Social 

Security checks in favor of direct deposit. From 

a practical standpoint, this means that many of 

the same people from the disability and aging 

populations who may be seen as lacking capacity 

and needing a guardian currently or will have 

bank accounts or prepaid debit card accounts 

into which their checks can be deposited. These 

individuals could potentially get assistance from 

someone they trust to help them with their 

banking and bill paying using a computer or 

mobile device. That being said, it is also true that 

the Federal Deposit Insurance Corporation (FDIC) 

found in a nationwide survey conducted with the 

National Disability Institute (NDI) that people with 

disabilities were far more likely to be considered 

“unbanked” because no one in their household 

had either a checking or savings account. Since 

the definition of disability that NDI used in their 

survey includes many individuals who would not 

meet the strict definition of disability used by 

the SSA, it’s not clear what, if any, impact the 

2013 law has had on the number of “unbanked” 

people with disabilities.300

Online banking and bill paying using a 

mobile app make it easier to get assistance 

with managing money, and, although they 

may create the potential for exploitation, the 

Federal Government is taking steps to address 

this possibility. In 2013, the Federal Reserve, 

the Consumer Financial Protection Bureau, 

the Securities and Exchange Commission, 

and five other Federal Government oversight 

bodies issued interagency guidance for banks 

on reporting financial abuse of older adults.301

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 123
This guidance clarifies the important role banks 

can play in curbing financial abuse and highlights 

previously published guidance describing 

suspicious activity such as unusually large 

withdrawals, closing of certificates of deposit 

and accounts without regard to penalties, and 

debit transactions that are out of character or 

inconsistent with prior transactions.302

Other alternatives for managing money and 

property for people with disabilities who may 

need assistance in doing so include powers of 

attorney, special needs trusts, and appointment of 

a representative payee for Social Security benefits, 

which will be discussed in the pages that follow. 

Each should be considered carefully as they 

restrict the person’s access to their own resources 

and, while less restrictive 

than guardianship, may 

suffer from some of the 

same infirmities. 

Powers of Attorney

A power of attorney is a 

written document executed under state law that 

allows a person or persons to represent or act on 

the behalf of another person (called the principal) 

in personal or business affairs or other legal 

matters. We often think of a power of attorney 

in terms of financial or health care decision 

making, but it can be a useful legal instrument 

in a variety of contexts. A power of attorney is 

“durable” when the document indicates that 

the agent’s authority does not end if the person 

becomes incapacitated. A “springing” power of 

attorney only becomes effective once a certain 

event occurs, such as the principal becoming 

incapacitated, but is a type of power of attorney 

that is not legally recognized in some states. 

Although forms are often available online, powers 

of attorney are powerful documents that require 

careful consideration by the principal, who may 

benefit from a lawyer’s advice and drafting 

experience, particularly in the area of finances. 

To be valid, powers of attorney must conform to 

state law requirements, some of which include 

notarization and witnessing.

The primary advantage of powers of attorney 

is that they are low cost and easy to create, 

change, and revoke. Powers of attorney have 

been used as an alternative to guardianship for 

older adults for a very long time; these legal 

instruments give people the opportunity to 

decide who they want to assist them as they 

grow older and to have meaningful conversations 

about important life decisions, such as long-term 

care and management 

of their property as their 

needs change. As one 

professional working 

in elder law who was 

interviewed for this report 

noted, powers of attorney 

can—assuming they are drafted well and a 

trustworthy agent is appointed—completely take 

the place of guardianship of the property. 

Despite misconceptions to the contrary, 

many people with cognitive or intellectual 

disabilities also can execute powers of attorney 

and advance directives for health care. 303 More 

public education, particularly of the legal and 

judiciary communities, needs to be done to 

ensure that this legal tool—an important civil 

right under state law—is equally available to 

people with cognitive or intellectual disabilities 

who can knowingly and voluntarily use it. As one 

professional NCD interviewee stated, “We have 

to create education with the public [and] with 

judges, so that the signatures of people with 

The primary advantage of powers 

of attorney is that they are low 

cost and easy to create, change, 

and revoke.

124 National Council on Disability
disabilities will be [honored]. I think that third 

party [recognition] remains . . . an issue.” 

As is the case with guardianship, alternatives 

to guardianship, including powers of attorney, 

can be used exploitatively. The concerns include 

whether or not the appointed agent will follow 

the wishes of the person and act ethically and 

diligently and whether or not the lack of court 

supervision may put the person’s safety or 

financial well-being at risk. These concerns are 

not unjustified, examples of physical, emotional, 

and financial abuse by agents, including family 

members, are not difficult to find. Some have 

even characterized the durable power of attorney 

for property is “a license to steal.”304 As a result, 

financial institutions can be very cautious about 

honoring powers of attorney, which can result in 

them being less effective. Powers of attorney are 

only as protective as the agent is trustworthy, 

only as effective as the willingness of third 

parties to accept it, and—like guardianship—do 

not prevent things like family power struggles 

over the person or his or her assets.305

Many debate what statutory reforms 

are needed to add safeguards to the use of 

powers of attorneys. Recent suggestions have 

included requiring 1) all durable powers to 

follow a standard statutory form with protective 

language (e.g., such as that within the Uniform 

Power of Attorney Act); 2) all durable powers to 

be registered with an oversight agency to be 

effective; 3) notice to be given to family members 

of such registration; and 4) increased court or 

governmental oversight that allows investigations 

if suspected abuse is reported.306 Although 

these reforms are worthy of consideration, 

the historical unwillingness to devote greater 

resources to monitor and prevent abuses in 

guardianship suggests that there may be a 

similar unwillingness to devote public resources 

to monitor and enforce the terms of what are 

essentially private agreements among parties. 

In the end, powers of attorney are an important 

alternative to guardianship that gives the 

individual greater ability to decide who should 

help them make and carry out decisions and to 

revoke that decision if they so choose. Although 

there is risk of abuse with powers of attorney, 

guardianships also carry these risks, despite their 

intention to prevent it. 

Trusts and Special Needs Trusts

A trust is a legal relationship wherein a person 

has a legal obligation to manage property—such 

as money, real property (land), personal property 

(such as jewelry), or anything else of value—

for the benefit of another person.307 A special 

needs trust is a particular kind of trust that can 

be established for the benefit of a person with 

a disability.308 The assets in this kind of trust 

can only be used in restricted ways, but they 

allow the person with a disability to have access 

to funds that might otherwise disqualify them 

from a variety of benefits programs. The money 

or property in a trust is managed by a trustee, 

who determines how to manage the trust for 

the beneficiary or beneficiaries in accordance 

with the terms of the trust. Although the trustee 

and the beneficiary can be the same person, 

in situations where the goal of the trust is to 

manage money for a beneficiary who may need 

assistance, the trustee would usually be a trusted 

family member, friend, or professional.309

A trust can offer some of the same benefits 

of guardianship in the sense that the beneficiary 

cannot directly access the resources, which 

are therefore protected from waste and third 

party influence or exploitation. Additionally, 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 125
trustees are obligated to comply with rules that 

govern fiduciary responsibility and can be legally 

responsible for mismanagement, which provides 

a layer of accountability and formality that may 

work well as an alternative to guardianship for 

some.310 On the other hand, a beneficiary of a 

trust has limited recourse if he or she disagrees 

with the way the trustee is spending the money. 

For example, a beneficiary might want the money 

in a trust used to buy something that seems 

objectively reasonable, 

such as a new television. 

However, if the trustee 

disagrees and refuses 

to buy that item, there is 

little the beneficiary can 

do, provided that trustee 

is otherwise spending or saving the money in a 

prudent manner for the beneficiary’s benefit. In 

that sense, a trust can limit the individual’s selfdetermination as much as a guardianship of the 

property. 

Representative Payee

In the Social Security benefits context, 

a representative payee is a person or an 

organization appointed 

by the SSA to manage 

benefits for a Social 

Security beneficiary who 

is unable to manage or 

direct the management 

of those benefits. The 

representative payee 

must use the benefits to pay for the needs of the 

beneficiary and save any benefits not needed to 

meet current needs. The representative payee is 

also accountable to SSA for how the money is 

spent and must be able to report this information 

to SSA. 

A representative payee can play an important 

role in ensuring that benefits are spent 

wisely and that they are used to support the 

beneficiary’s needs. However, SSA has faced 

criticism for failing to appropriately screen and 

monitor representative payees and for failing to 

recruit suitable payees for individuals who do not 

have family or friends available to assist them.311

Additionally, the determination of who needs a 

representative payee has been called “. . . less 

than scientific . . .” by 

former SSA Inspector 

General Patrick 

O’Carroll.312 In other 

words, the representative 

payee program may 

be an alternative to 

guardianship that suffers from many of the same 

problems that are prevalent in guardianship 

systems. 

Health Care Decisions

Guardianship is sometimes sought because an 

individual is thought to be unable to make medical 

decisions for themselves. Often, this is because a 

physician or other medical professional does not 

feel that they can obtain 

“informed consent” from 

the person to proceed 

with a medical treatment, 

procedure, or even 

examination. The medical 

provider must be sure 

the patient understands 

the purpose, benefits, and risks of a procedure, 

as well as the range of treatment options, and 

voluntarily consents to the procedure. If the 

medical provider does not do so, any therapy 

or treatment “. . . may amount to a tort—a 

common law battery—by the physician.”313 If 

[A] beneficiary of a trust has limited 

recourse if he or she disagrees with 

the way the trustee is spending the 

money.

[T]he representative payee 

program may be an alternative 

to guardianship that suffers from 

many of the same problems that are 

prevalent in guardianship systems.

126 National Council on Disability
the provider does not believe the patient is 

capable of providing informed and voluntary 

consent, they may require the appointment of 

a substitute health care decision maker, which 

may in turn raise various issues depending on 

the age of the patient, his or her health condition 

(particularly if it involves reproduction or a terminal 

condition), and his or her relationship to the 

people who might naturally be available to assist 

with medical decisions. Parents of young adults 

with intellectual and developmental disabilities 

are often counseled to obtain guardianship lest 

they be shut out of their child’s medical decision 

making or—worse—their child be unable to 

access medical care. However, these fears are 

frequently unfounded, 

given the number of 

viable alternatives usually 

available in the health 

care context. 

HIPAA

Under the Health 

Insurance Portability and 

Accountability Act of 1996 (HIPAA), a patient 

can voluntarily authorize disclosure of otherwise 

protected and confidential health information 

to whomever they choose, including his or her 

parents and other family members. If the patient 

is not present or is incapacitated, a health care 

provider can disclose information if it is in the 

best interest of a patient to do so. HIPAA does 

allow a person, including adults with disabilities, 

to specifically prevent disclosure of their private 

information, as long as they have capacity.314

However, this should not necessarily be viewed 

as problematic. While we may care about loved 

ones and want the best for them, the purpose 

of HIPAA is to give individuals the autonomy to 

decide whom they trust to assist with health 

care decisions.315

Advance Directives

Even if a doctor does not believe that the 

individual has capacity to make health care 

decisions and therefore cannot provide 

informed consent, with appropriate planning, 

guardianship can still be unnecessary. Advance 

planning tools, such as advance directives, can 

be used to memorialize the individual’s health 

care preferences. Advance directives detail the 

person’s preferences with respect to certain 

medical interventions should they become unable 

to communicate them to a doctor. Most states 

also allow individuals to 

designate someone as 

their surrogate to make 

decisions for them in 

the event they become 

incapacitated and cannot 

make medical decisions 

for themselves. These 

tools are often most 

useful in the context of end-of-life decisions and 

are dependent on the person having capacity 

when they sign the document. There has been 

debate around exactly what level of capacity 

is required in order for an individual to legally 

execute an advance directive or health care proxy, 

and the answer will depend on state law and 

legal precedent.316

Surrogate Health Care Decision Making 

Laws

Even in circumstances in which individuals have 

not had opportunity to memorialize their wishes 

in an advance directive, or had the requisite 

capacity to understand and sign such a legal 

Advance directives detail the 

person’s preferences with respect 

to certain medical interventions 

should they become unable to 

communicate them to a doctor.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 127
document, there are ways that their families 

can continue to help with medical decisions. As 

summarized by the ABA Commission on Law 

and Aging, when an individual cannot make 

health care decisions and has not designated 

a surrogate to make decisions on his or her 

behalf, “. . . in 38 states the statute prescribes 

that the highest person available and willing 

to make health care decisions becomes the 

surrogate.”317 These statutes typically list natural 

relatives in order of priority, such as spouse, 

adult children, parents, siblings, “. . . and so on 

through the family tree.”318 When these statutes 

come into play, it is usually not following a judicial 

determination that the patient lacks capacity. 

Rather, it is based on the determination of the 

attending physician, sometimes in consultation 

with another physician in order to ensure that the 

individual is not unnecessarily being deprived of 

the right to make these important decisions on 

their own. 

Florida seems to be unique in that it 

specifically notes that when a patient is 

“incapacitated or [has a developmental 

disability] . . .” his or her physician can look to 

next of kin to make health care decisions for 

the patient [emphasis added].319 While this law 

seems to have been passed at the urging of 

parents of adults with developmental disabilities 

in order to facilitate their ongoing involvement 

in the individual’s health care, it remains 

problematic because it presumes the incapacity 

of adults with developmental disabilities—

disabilities which may or may not involve any 

cognitive impairment whatsoever—who may be 

perfectly capable of making their own health care 

decisions. 

Although these statutes may alleviate 

the need for guardianship, they are often not 

taken into consideration when alternatives 

to guardianship are being considered. It is 

vital that they be understood and considered 

in order for guardianship to remain the last 

resort. Additionally, doctors and other medical 

professionals need to be trained to work with 

patients with disabilities—including intellectual 

disabilities, cognitive impairments, and psychiatric 

disabilities—and their families as appropriate to 

maximize the patients’ ability to make their own 

medical decisions. There is a strong argument 

to be made that the ADA requires providers to 

accommodate people with disabilities in the 

decision making phase of medical treatment in 

the same way they are required to provide an 

accessible exam table, American Sign Language 

interpreters, or allowing a patient to bring a 

service animal to an appointment. 

Educational Decisions

As discussed earlier, when an individual reaches 

the age of majority (generally 18 years of 

age), they are entitled to make decisions for 

themselves, and their parents no longer have any 

legal right to make decisions on their behalf or 

obtain confidential information unless the adult 

child has given permission. However, this does 

not mean that parents who are told by school 

staff that they need to seek guardianship as soon 

as their son or daughter with disabilities turns 

18 are getting sound advice. There are several 

alternatives that enable parents to continue to 

stay involved in the education of their son or 

daughter after they’ve turned 18. 

Powers of Attorney

As discussed in Chapter 6, many parents of 

youth with developmental disabilities are advised 

by school personnel that they need to obtain 

128 National Council on Disability
guardianship when their son or daughter turns 

18 or face being denied a say in their adult child’s 

education. This advice often raises concerns for 

parents of students who remain eligible for IDEA 

services through age 21. However, according to 

guidance from the Office of Special Education 

Services (OSERS):

. . . if State law permits parental rights 

under the IDEA to transfer to a student 

who has reached the age of majority, 

that student can become the educational 

rights holder who invites family members 

to participate in the IEP meeting. If the 

adult student does 

not want to have that 

role, he or she can 

execute a power of 

attorney authorizing 

a family member to 

be the educational 

decision-maker.320 The 

OSERS guidance goes 

on to suggest that 

supported-decision 

making—discussed further in the next 

section—is likely to be a good option in 

these situations as well. 

Educational Representatives

In addition to the option of a power of attorney, 

in some states, there is a procedure for the 

involuntary appointment of an educational 

representative for an adult student who, through 

a process recognized in state law, is deemed 

unable to make educational decisions but 

who has not been adjudicated incapacitated. 

For example, in Connecticut, an educational 

representative can be appointed for an 

adult student when two professionals (e.g., 

physicians, psychologists, nurse practitioners) 

have certified in writing that the individual 

cannot make educational decisions.321 While this 

process may make it less likely that a parent 

will seek guardianship in order to continue 

to play a role in their adult son or daughter’s 

education, it still acts as a revocation of an 

adult’s rights to make decisions for his or herself 

and with virtually no due process, which is highly 

problematic.

International Best Practices

Many interpret the CRPD to categorically reject 

guardianship. Article 

12 requires Parties 

to the convention to 

“recognize that [people] 

with disabilities enjoy 

legal capacity on an 

equal basis to others in 

all aspects of life” and 

to “take appropriate 

measure to provide 

access by a person 

with disabilities to the support they require in 

exercising their legal capacity.”322 Countries that 

have signed the treaty have responded to this 

mandate in a variety of ways, and in many cases 

it is not clear how successful these evolving 

legal frameworks have been or whether they 

will have the staying power to permanently 

supplant guardianship. However, because the 

CRPD requires states to file reports describing 

how they are meeting their obligations, including 

the requirements of Article 12, advocates and 

policymakers in the United States will be able 

to track the evolution of these initiatives over 

time.323 Since the federalist system in America 

“... if State law permits parental 

rights under the IDEA to transfer 

to a student who has reached the 

age of majority, that student can 

become the educational rights 

holder who invites family members 

to participate in the IEP meeting.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 129
that gives individual states the responsibility 

for developing and maintaining their own 

guardianship system is relatively unique in the 

world, there may be some innovations that other 

countries adopt that may prove more difficult for 

the United States to implement on a nationwide 

basis. However, it remains useful to examine the 

efforts of countries that have responded to the 

Article 12 mandate with effective reforms across 

decision making areas. 

The Trend Toward the Alternative 

of Supported Decision Making

Supported decision making (SDM) is an 

emerging, less-restrictive alternative to 

guardianship that is 

currently used both 

within the United States 

and abroad. Scholars 

have recognized it 

as having the strong 

potential for resulting in 

favorable outcomes in 

the lives of people with disabilities,324 and studies 

are underway to further verify such outcomes. 

Definition of Supported Decision 

Making

Many view the CRPD as the impetus for current 

reform efforts to advance SDM. Article 12 

of the CRPD requires signatory nations to 

both recognize and assist in helping people 

with disabilities exercise legal capacity on an 

equal basis to others.325 Used by the CRPD 

Committee, the term supported decision making

describes one of the ways a person can be 

assisted in exercising legal capacity.326

There is no singular definition or model of 

SDM.327 However, it generally occurs when 

people with disabilities use friends, family 

members, and professionals to help them 

understand the everyday 

situations they face 

and choices they must 

make, allowing them 

to make their own 

decisions without the 

need for a substitute 

decision maker, such as 

a guardian.328 SDM works in the same way that 

most adults make daily decisions—by seeking 

advice, input, and information from others who 

are knowledgeable and whom the adult trusts. As 

one interview participant explained:

no one is ever truly independent. We’re 

interdependent on one another and that’s 

true for people with all kinds of disabilities 

and people without disabilities. 

All forms of SDM operate on three core 

elements: 

■ A person’s autonomy, presumption of 

capacity, and right to make decisions on an 

equal basis with others 

“[N]o one is ever truly independent.

We’re interdependent on one 

another and that’s true for people 

with all kinds of disabilities and 

people without disabilities.”

Definition of Supported Decision 

Making

Supported decision making (SDM) generally 

occurs when people with disabilities use 

friends, family members, and professionals 

to help them understand the everyday 

situations they face and choices they must 

make, allowing them to make their own 

decisions without the need for a substitute 

decision maker, such as a guardian.

130 National Council on Disability
■ A person’s involvement in a decision making 

process that does not remove his or her 

decision making rights 

■ The recognition that people will often need 

assistance in decision making through such 

means as interpreter assistance, facilitated 

communication, assistive technologies, and 

plain language329

Benefits of Supported Decision Making

SDM has the potential to provide people with 

disabilities the support needed to understand 

their options while ensuring that they still retain 

ultimate legal decision making authority, unlike 

guardianship.330 In discussing potential outcomes 

of that approach, many 

point to studies that have 

found the following:

■ People with 

intellectual and 

developmental 

disabilities who 

exercise greater 

self-determination—who are “causal 

agents” with more control over their 

lives331—have better life outcomes and 

quality of life,332 including being more 

independent, more integrated into their 

communities, better problem-solvers, 

better employed, healthier, and better able 

to recognize and resist abuse. People with 

intellectual and developmental disabilities 

learn through the process of making 

decisions, and self-determination, if taught, 

can also be learned.333 As one interviewee 

explained, “It’s not about protecting 

someone. It’s about teaching them how to 

best protect themselves.” 

■ Older adults with more self-determination 

have improved psychological health, 

including better adjustment to increased 

care needs.334 Older adults with progressive 

dementia are more likely to retain 

cognitive function when they use their 

cognitive skills.335

■ Self-determination has been linked to better 

life outcomes for youth with disabilities 

in foster care.336 Additionally, outcomes 

for other students with disabilities are 

better when they are empowered to 

exercise self-determination.337 Those with 

self-determination skills are more likely 

to successfully make the transition to 

adulthood, including 

improved education, 

employment, and 

independent living 

outcomes.

■■■■■In absence of an 

approach like SDM, 

when denied selfdetermination, people can “feel helpless, 

hopeless, and self-critical,”338 and 

experience “low self-esteem, passivity, and 

feelings of inadequacy and incompetency” 

and a “decrease in their ability to 

function.”339

■ Although not generalizable given limited 

number and size, professionally evaluated 

pilot programs have found that SDM led to 

positive outcomes for participants, including 

greater community inclusion, improved 

decision making skills, increased social 

and support networks, and increased selfconfidence, happiness, and willingness to 

try new experiences.340

People with intellectual and 

developmental disabilities 

who exercise greater selfdetermination ... have better life 

outcomes and quality of life ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 131
Some of those interviewed for this project 

put the reason for using SDM into human terms. 

Said one interviewee, “He’s a human being. He 

has likes and dislikes; we all do. And why do we 

not respect that?” Another focused on the adage 

that “to err is human” when the interviewee 

said, “We have to acknowledge that everyone, 

whether they have a cognitive disability [or not], 

make[s] bad decision[s] so we frequently have to 

acknowledge and respect the right for [a] person 

to make a ‘wrong’ decision.” 

Areas for Greater Study with SDM 

Models

While many studies extol the benefits of SDM 

models, as is the case with any alternative, 

there still exists the potential for unintended 

consequences or experiential disparities based 

on type of disability, which warrant further study:

■ Substituted Decisions: Supporters in 

a SDM model may misunderstand their 

role and substitute their decisions for the 

person with a disability, or unintentionally 

lead the person to a predetermined 

outcome “through issue-framing, inaccurate 

assessment of [the person’s] preferences, or 

simple conversations” in which the person 

gives deference to supporters.345 One 

must ensure people with disabilities are 

not, in fact, disempowered through undue 

influence by so-called supporters.346 Some 

interviewees expressed concern about 

the potential for abuse under a supported 

decision making model: “[C]ertainly using 

support decision-making would offer a real 

opportunity . . . if one or more people were 

inclined to take advantage or exploit an 

individual. And it’s unclear to me what the 

Supported Decision Making Furthers the Goals of U.S. Federal Policy

SDM furthers the goals of U.S. federal policy, including those under:

■ The Americans with Disabilities Act, which secures the basic civil rights of people with 

disabilities, including the right to self-determination, community integration, and the 

right to receive accommodations in order to participate in a governmental programs and 

employment and access the services of businesses that are generally open to the public, 

such as doctor’s offices and banks.341

■ The Individuals with Disabilities Education Act, which mandates transition planning that 

should empower young adults with disabilities to make choices as they enter adulthood.342

■ The Rehabilitation Act because individuals who are active participants in an individualized 

plan for employment and decisions regarding their employment generally are more likely to 

achieve positive employment outcomes.343

■ Medicaid and Home and Community Based Services, which are developed with an 

emphasis on person-centered planning.344

132 National Council on Disability
ramifications would be beyond just general 

criminal laws.” 

■ Court Oversight: If an adopted SDM model 

requires agency or court oversight, it might 

have the effect of operating very similarly 

to guardianship (e.g., people could be 

subjected to continuous monitoring).347

■ Unwanted Assistance: SDM may conflict 

with a person’s right to make his or her own 

decisions without support, should the model 

be promoted or enforced even when an 

adult does not want that kind of assistance 

at all.348

■ Disability-Specific 

Emphasis: So far, 

SDM has gained 

more headway 

as an alternative 

to guardianship 

for people with 

intellectual and 

developmental 

disabilities, and 

most SDM pilot 

projects in the 

United States have targeted people with 

intellectual disabilities. However, SDM 

has not yet been embraced to the same 

degree as a viable option for older adults 

with cognitive impairments349 or people with 

psychiatric disabilities.350

■ Application for Those with Severe 

Disabilities: Likewise, further exploration 

is warranted regarding how SDM could 

work for people with severe intellectual and 

other disabilities.351 As one interviewee said 

of her brother, “He does not use words 

in any form, so he does not type, he does 

not speak in words, he does not sign his 

name as a signature, and he does not use 

an alternative communication device. From 

a legal perspective, it would be very difficult 

for him to create alternative detailed support 

plans.” However, one interviewee with a 

different significant disability explained 

how SDM worked for her, using the voting 

context as an example: “My Mama [and I] 

have a system where I slap her left hand 

or right hand to make my choice. If I don’t 

slap either one, it means I don’t like either 

choice. So anyway, I voted three times now 

for president and governor.”

How Supported 

Decision Making 

Works

When it comes to SDM, 

one size does not fit all. 

As the CRPD Committee 

clarified, “Supported 

decision-making can 

take many forms.”352

Supporters may help 

the person understand 

the choices at hand, communicate that person’s 

decisions to others, or even “help others realize 

that a person with significant disabilities is also a 

person with a history, interests and aims in life, 

and is someone capable of exercising his/her 

legal capacity.”353 As the U.S. Health and Human 

Services’ Administration on Community Living 

stated regarding SDM:

solutions . . . are different for each person. 

Some people need one-to-one support 

and discussion about the issue at hand. 

For others, a team approach works best. 

Under SDM, it is the person with a 

disability who is the decision maker.

The supporter(s) solely explain(s) 

the issues, and may interpret the 

signs and preferences of the person 

to others based on their prior 

knowledge of and relationship to 

the individual.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 133
Some people may benefit from situations 

being explained pictorially. With supported 

decision-making the possibilities are 

endless.354

Under SDM, it is the person with a disability 

who is the decision maker. The supporter(s) 

solely explain(s) the issues, and may interpret 

the signs and preferences of the person to 

others based on their prior knowledge of and 

relationship to the individual. “Even when [a 

person] with a disability requires total support, 

the support person(s) should enable the 

individual to exercise his/her legal capacity to 

the greatest extent possible, according to [his 

or her] wishes.”355

SDM arrangements need not be documented 

in a formal written agreement, although some are 

in order to encourage third parties to rely on the 

decision that is made.356 The capacity to enter 

into an SDM agreement has been contrasted 

with the capacity to contract; an SDM agreement 

is seen not as a contract, but rather as a way in 

which an adult with a disability authorizes (an)

other person(s) to advise and consult in that 

adult’s decision making.357

In its purist form, SDM is an alternative to 

guardianship. However, the National Guardianship 

Association has recognized the best practice 

of using SDM principles within guardianship as 

well, stating that if guardianship is “necessary,” 

“the supported decision-making process should 

be incorporated as a part of the guardianship.”358

Some guardians interviewed as part of this 

project linked guardianship with promoting SDM 

or restoration of legal decision making rights:

Guardianship to me is being able to explain 

the situation and help the person make the 

decision but helping them make the most 

educated decision and just being there if 

they need somebody. 

Our job as guardian was to keep him safe, 

and to help him grow to where he could 

make decisions on his own with support. 

Past reforms represented “tinkering with 

the existing guardianship system” to provide 

guardians with education and training on 

implementing person-centered decision making, 

enhance monitoring and accountability to 

ensure that goal, and assuring care and life 

planning for older persons and people with 

disabilities.359 However, as has been previously 

noted, the U.N. Committee on the Rights of 

Person with Disabilities represents more of a 

departure, taking the position that any form 

of guardianship is inconsistent with Article 12 

of the CRPD and with the spirit of SDM.360 It 

remains to be seen whether SDM can coexist 

within guardianship or whether guardianship 

is anathema to SDM, but as one scholar has 

noted, “guardianship is here to stay, at least for 

now.”361 Given that fact, guardianship reform 

efforts, such as those by the National Conference 

of Commissioners on Uniform State Laws that 

recognize the role guardians and courts should 

have in “encourag[ing] the development of [a 

person’s] maximum self-determination and 

independence”362 are still worthy of promotion. 

International and U.S. Support and 

Advancement of SDM

Internationally, SDM has gained visible 

momentum in academia, case law, regional 

courts and bodies, legislative reform, the creation 

of centers and institutes, nonpeer reviewed 

publications, conferences and symposia, 

and United Nations (UN) activity. At least 

134 National Council on Disability
162 countries have ratified the CRPD, driving 

widespread change.363 Among others, the 

governments of Canada, Great Britain, Ireland, 

parts of Australia, parts of New Zealand, parts of 

Germany, Bulgaria, Israel, the Czech Republic, 

Norway, Sweden, and India have either adopted 

or are exploring the adoption of SDM.364 Here are 

a few international examples of how SDM has 

been adopted: 

■ Some Canadian providers are using a formal 

SDM model where a person with a disability 

may enter into a private legal agreement 

with one or more people who will provide 

assistance with 

decision making 

or act as formal 

decision making 

representatives for 

the person, with 

continuing and 

active involvement 

by the person.365

■ In Sweden and 

some other 

European nations, a legal mentor or personal 

ombudsman can be judicially appointed 

to act as a decision making assistant for a 

person who is found incapable of making 

any or all their decisions alone.366

■ In a South Australian SDM project, a person 

would nominate one or more people to 

act as a supporter and memorialize that 

arrangement in a non-statutory SDM 

agreement. An extra person (called a 

monitor) helped with the process and 

identified problems if they occurred.367

The move from substitute decision making 

(traditional guardianship) to SDM is a paradigm 

shift in how society thinks about the decision 

making abilities of people with disabilities,368

and the United States has lagged behind 

the international community in moving that 

direction.369 Not only has the United States not 

ratified the CRPD, but domestic guardianship 

reform efforts frequently “accept the 

predominance of a legal regime that locates 

decision-making in the surrogate or guardian, and 

not in the individual being assisted.”370 In contrast 

to guardianship, SDM “retains the individual [with 

a disability] as the primary decision maker, while 

recognizing [he or she] may need assistance—

and perhaps a great 

deal of it—in making 

and communicating a 

decision.”371

However, as it has 

become increasingly 

clear through decades 

of guardianship reforms 

that the guardianship 

system has intractable 

problems; SDM is 

beginning to get a 

foothold in the in the United States through 

advocacy and discourse of constituents to 

legislatures and policymakers, and through the 

courts. For example, since 2012, court decisions 

favoring SDM over permanent guardianship have 

come out of New York, Virginia, Massachusetts, 

the District of Columbia, Florida, and Vermont, 

among others.372 State legislatures are beginning 

to formally recognize SDM as well,373 such as 

by enacting statutes formally recognizing SDM 

Agreement Forms (Texas374 and Delaware375), 

identifying SDM as an option in special education 

(District of Columbia376) for adult students and in 

areas of medical decision making (Maryland377), 

and ordering SDM-related studies (Virginia378, 

The move from substitute decision 

making (traditional guardianship) 

to SDM is a paradigm shift in how 

society thinks about the decision 

making abilities of people with 

disabilities, and the United States 

has lagged behind the international 

community in moving that direction.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 135
Maine379, and Indiana380). There also exists keen 

interest in specifically codifying SDM as an 

alternative to guardianship within state laws, 

considering, as of August 2017, there were at 

least half a dozen states with pending SDMrelated bills in their legislatures.381 Moreover, 

SDM pilot projects have emerged in states 

including Massachusetts382, Maine, North 

Carolina383, South Carolina, New York,384 and 

Texas,385 among others. Vermont, for example, 

has convened a statewide task force of agencies 

working with older adults and people with 

disabilities designed to incorporate SDM theory 

and practice into its service systems.386

The value of 

promoting SDM is being 

recognized in federal 

policy, as well. In 2014, 

the Administration 

for Community Living 

(ACL) within the U.S. 

Department of Health and 

Human Services began 

funding the National 

Resource Center for 

Supported DecisionMaking to conduct cutting-edge research, create 

educational programming, and gather and develop 

multidisciplinary best practices and tools to further 

establish SDM as a recognized and viable decision 

making support for people with disabilities 

and older adults across the United States.387

SDM has been promoted by the American Bar 

Association Commission on Law and Aging388

and the National Guardianship Association,389 as 

well as a number of federal advisory bodies390

and federal agencies, including, for example, 

the Department of Education.391 SDM has also 

been the topic of national stakeholder summits, 

including those convened by the American Bar 

Association,392 Quality Trust for Individuals with 

Disabilities, the Burton Blatt Institute, the Council 

on Quality and Leadership,393 the Autistic Self 

Advocacy Network (ASAN), and the National 

Resource Center for Supported DecisionMaking.394

The American Bar Association has also 

formally recognized the importance of advancing 

SDM. In August 2017, its House of Delegates 

approved a resolution urging the amendment of 

guardianship statutes to require that SDM “be 

identified and fully considered as a less restrictive 

alternative before guardianship is imposed” 

and be considered a 

“grounds for termination 

of a guardianship and 

restoration of rights.”395

Perhaps most 

exciting from an SDM 

reform perspective is 

the completion of the 

revisions to the UGPPA. 

The UGPPA was originally 

approved by the Uniform 

Law Commission in 

1982, amended in 1989, and last revised in 1997. 

Nearly 20 states have enacted some version of 

the Act. A drafting committee began the process 

of revising the UGPPA in early 2015 and, on July 

18, 2017, the Uniform Law Commission approved 

the resulting revisions. This model law, known 

as the UGCOPAA, formally recognizes SDM and 

requires its consideration as a less-restrictive 

alternative to guardianship. The UGCOPAA no 

longer uses the term incapacity and requires 

that, in order to appoint a guardian, the court 

must find by clear and convincing evidence that 

the individual “is unable to receive and evaluate 

This model law, known as 

the Uniform Guardianship, 

Conservatorship & Other Protective 

Arrangements Act (UGCOPAA), 

formally recognizes SDM and 

requires its consideration as a 

less-restrictive alternative to 

guardianship.

136 National Council on Disability
information or make or communicate decisions, 

even with appropriate supportive technological 

assistance, or supported decision-making.”396 The 

model law has been approved by the ABA House 

of Delegates and is ready for adoption by state 

legislatures. Given the influence that the UGPPA 

has had on the guardianship laws of many states 

and the interest in guardianship reform that 

seems to be developing across the country, the 

UGCOPAA is likely to have a strong impact on 

state law in the coming years. 

Next Steps for Supported Decision 

Making as an Alternative to 

Guardianship

One of the greatest barriers to full adoption of 

SDM is the lack of reliable data specifically tying 

it—and not only the concept of self-determination, 

which has been highly studied—to improved life 

outcomes.397 To better guide SDM models,398

validated empirical evidence is needed regarding 

best practices in SDM, including effective and 

support structures and methods, and whether 

people who engage in SDM are more selfdetermined, autonomous, experience better life 

satisfaction, and achieve meaningful community 

living and participation.399 There is also little 

evidence on how SDM is applied in jurisdictions 

in which it is used due to a lack of data collection 

regarding the number of SDM arrangements; of 

demographic data of those who use SDM and 

who act as a supporters;400 and how SDM can 

work for people with severe intellectual disabilities 

and other populations, among other areas.401 To 

help fill this research gap, the National Resource 

Center on Supported Decision-Making is currently 

conducting qualitative and quantitative studies 

to document the nature, use, barriers, and 

outcomes of SDM by older adults and people with 

intellectual and developmental disabilities,402 the 

results of which are pending. 

Scholars have recommended some other 

promising SDM-related safeguards and proposed 

reforms, including:

■ Providing sufficient resources for 

widespread education on SDM to the 

general public, people with disabilities, 

third parties working with people with 

disabilities and supporters, and the legal 

and judiciary systems. There should be 

standards of conduct for supporters,403

and those supporters should have access 

to training on what it means to support 

someone with decision making and how 

to minimize unintended undue influence. 

Training must help supporters understand 

“the total lack of any decisional power” 

being a supporter conveys.404 Family 

members and other supporters must 

receive practical information to understand 

the fundamental philosophy behind SDM, 

how to use strategies of communication and 

conflict resolution, how to manage power 

differentials and the risk of undue influence, 

how to balance enabling rights and 

managing risk, and how to collaborate with 

other supporters.405 Just having an SDM 

regime established in law is not enough.406

■ Funding more geographically and 

demographically diverse projects and 

pilots that specifically test SDM models, 

and use SDM and the court systems to 

restore people’s rights as a matter of 

law,407 particularly for people who are older 

adults with cognitive decline, people with 

psychosocial disabilities, and people with 

severe intellectual disabilities.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 137
■ Requiring states to ensure that selfadvocacy skills are included in school 

curricula and to support and promote selfadvocacy organizations.408 For SDM to firmly 

take root, it must be promoted in childhood, 

including within educational programming 

and school-to-adult transition planning. 

■ Placing limitations, when formal SDM 

agreements are used, on how or if 

supporters can act with regard to certain 

kinds of important decisions, creating 

legal prohibitions that would disallow 

supporters from acting in transactions in 

which they have a conflict, and ensuring the 

involvement of more than one supporter.409

Using examples the New York pilot intends 

to apply, these safeguards could include 

the use of monitors, who are chosen by 

the person with a disability for all or some 

decisions, or “mentors,” who can serve as 

the person’s “constant and trusted advisor 

[and] a relationship with [him or her] that 

coincides with the progressive decline of 

neurodegenerative conditions.”410

■ Establishing a state or official office that 

has the power to investigate allegations 

that a supporter acted improperly and to 

resolve conflicts that might arise without 

automatically turning to more restrictive 

forms of intervention, like guardianship.411

■ Funding the creation of programs that 

directly provide supports for people who 

have no one suitable to act as a supporter,412

and writing laws and policies that facilitate 

access to formal and informal supports for 

large number of people requiring assistance 

with day-to-day issues.413

While there are numerous areas requiring 

future study, SDM has demonstrated promise as 

a comprehensive alternative to guardianship that 

avoids many of the widely recognized problems 

with guardianship’s impact on people’s lives.414

In order to achieve the promise of the ADA, 

we must continue to improve opportunities 

for people with disabilities to exercise selfdetermination, make choices, and take risks. 

While there may be steps that can be taken to 

improve these opportunities within guardianship, 

in the estimation of the Council after an extensive 

and thorough examination of the complex issues 

involved, the greatest promise lies in recognizing 

the legal capacity of people with disabilities on an 

equal basis with others in all aspects of life and 

in taking steps to provide access by people with 

disabilities to the support they may require in 

exercising their legal capacity.415

138 National Council on Disability
Overview of NCD’s Qualitative Study

F

or this report, NCD funded an in-depth 

qualitative study on the use and nature of 

guardianship. NCD’s research team worked 

in partnership with researchers at the Institute 

on Disabilities at Temple University (the Institute 

on Disabilities) to interview stakeholders around 

the country and analyze trends. The stakeholders 

interview included people with disabilities subject 

to guardianship, people with disabilities using 

alternatives to guardianship, family member 

guardians and/or supporters, and representatives 

chosen for their expertise in advocacy, law, court 

operations, and the professional services for 

people with disabilities. NCD’s research team 

conducted 46 interviews that captured a wide 

range of life experiences and perspectives on 

guardianship and alternatives to inform this 

report. This chapter reports the analysis of those 

interviews, highlights salient themes, and shares 

some of the stories and experiences shared in 

the participants’ own words. The full analysis can 

be found on NCD’s website. 

Methodology

From February 2017 through April 2017, the NCD 

research team, in partnership with the Institute 

on Disabilities, conducted and analyzed a total of 

46 qualitative interviews. The participants were 

identified through extensive outreach to the 

members of the advisory boards established for 

this NCD project; the National Resource Center 

for Supported Decision-Making; public and 

private guardians; and national and local disability, 

self-advocacy, and aging networks. Researchers 

used a snowball sampling process, in which 

existing participants recruited future participants 

from among their acquaintances. The research 

team used of this style of sampling rather than 

a probability sampling process in order to reach 

individuals who would have otherwise been 

difficult to involve. Selection of participants also 

factored in their geographical diversity, individual 

characteristics, level of need for support, and 

individual experience.

Research Sample

The original goal was to interview a balanced 

sample of 10 participants from each of the 

four categories. However, despite widespread 

outreach, there were challenges in locating 

people subject to guardianship who were able 

to be interviewed. Reasons for this likely are 

related to complications associated with getting 

the approval from the guardians involved,416

constraints related to conducting interviews 

outside the District of Columbia remotely by 

telephone or video conference, and, in some 

cases, the reported severity of disability 

experienced.

Chapter 9: Stakeholder Experiences with the 

Guardianship System

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 139
As a result, the final tally of participants 

included:

a. 6 people with disabilities subject to 

guardianship, one of which identified as 

being under “partial” guardianship and 

another that identified as having a plenary 

guardianship subsequently changed to a 

limited one; 

b. 12 people with disabilities using alternatives 

to guardianship, including at least 3 who had 

previously been subject to guardianship but 

had subsequently had their rights restored; 

c. 16 family member guardians and/or 

supporters; and 

d. 12 representatives chosen for their expertise 

in advocacy, law, court operations, and 

professional services for people with 

disabilities.417

The participants included residents of 

California, Delaware, the District of Columbia, 

Florida, Georgia, Illinois, Kentucky, Kansas, 

Massachusetts, Minnesota, New York, North 

Carolina, Pennsylvania, Texas, Utah, Virginia, 

Washington, and Wisconsin. Participants included 

people and/or family members of people with 

ID/DD, acquired and/or traumatic brain injury, 

psychosocial disabilities, sensory and physical 

disabilities, and dementia. Some participants 

reported the presence of co-occurring disabilities. 

Given that the goal of 40 interviews was 

exceeded and there is obvious diversity of 

category and within each category, the interviews 

provide excellent data to analyze. 

Interview Questions

The interview protocol that the NCD research 

team developed included input from the project’s 

advisory committee members. The research 

team developed four sets of interview questions, 

one for each of the four participant categories. 

The interview questions address the project’s 

previously identified research questions, which 

provided a general framework for the issues to 

be explored. The research questions NCD sought 

to answer were as follows:

1. Are people with disabilities receiving fair 

treatment within the legal system with 

respect to guardianship? 

2. Is supported decision making a viable 

alternative to guardianship? If so, does it 

lead to better outcomes or are there some 

negative unintended consequences to using 

this alternative? 

3. Are people with disabilities who may 

need decision making assistance and their 

families being provided with sufficient 

information about the guardianship process 

and possible alternatives to make informed 

and appropriate decisions? 

4. How does guardianship impact people 

with disabilities and their families? Does 

guardianship help improve outcomes of 

health, safety, and protection for people? 

5. How does the current use of guardianship 

align or conflict with other U.S. national 

disability policy goals and initiatives, 

including the goals of the ADA and its 

community integration mandate and 

principles of due process under the law?

Interview Method

The interviews were semistructured in nature to 

allow the interviewer and participant to engage 

in a formal interview while simultaneously 

140 National Council on Disability
encouraging the exploration of unique issues 

and topics that emerged during the interview. 

The interviewers were trained to tailor their 

questions to the specific respondent and/or 

interview context and situation. The goal was 

to solicit the broadest array of information, 

opinions, and ideas. The protocol was designed 

to keep the interview length to no more than 

one hour, although some actual interviews 

exceeded that time frame or were broken into 

multiple interview sessions at the participant’s 

preference. The protocol emphasized the 

voluntariness of the interview and the openness 

of the dialogue—that is, that there were no 

right or wrong answers, that the participant did 

not have to answer any questions he or she 

did not want to answer, and that the participant 

could take a break from or end the interview at 

any time. 

Due to the geographical diversity of the 

participants, most of the interviews were 

conducted by telephone or videoconferencing, 

while others were conducted in person. 

Two participants asked to submit their 

responses in writing as an accommodation. 

The interviewers were all law students at the 

American University School of Law’s Disability 

Rights Law Clinic,418 under the supervision of 

NCD’s research team. They were trained on 

how to use the interview protocol, conduct 

a qualitative interview, and accommodate 

people with disabilities. A third-party contractor 

recorded and transcribed the interviews 

and then the NCD research team redacted 

personally-identifiable information to protect 

the privacy of the participants. The research 

team next analyzed the electronic transcripts of 

each interview, the notes that the interviewer 

took during the course of the interview, and 

email communications about aspects of the 

interviews from interviewers to the project 

coordinator. 

Analysis and Salient Themes

After reviewing and analyzing the interviews 

and other documents, NCD researchers were 

able to point out themes that emerged from 

the data from each of the four categories 

of participants and organized those themes 

based on the research questions posed 

by NCD. The Institute on Disabilities also 

analyzed the interview results within each 

participant category, grouping separately the 

interviews of people with disabilities subject 

to guardianship, people with disabilities who 

used alternatives to guardianship, family 

member guardians and supporters, and 

professional representatives. 

Treatment Within the Legal System

Across participant category, NCD’s research 

identified three salient overarching themes 

regarding the treatment of people with disabilities 

within the legal system of guardianship. These 

themes were that:

■ Judges do not fully appreciate what 

guardianship is, how it limits people, and 

what other alternatives are available.

■ There are differences between legal rights 

and how people experience the legal 

system, actors, and spaces in practice. 

■ People with disabilities are not adequately 

assessed in terms of their ability to make 

decisions and function. 

The results of the data analysis for each 

participant category are discussed as follows.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 141
People with disabilities subject to 

guardianship

NCD’s research found that people with disabilities 

subject to guardianship expressed positive, 

negative, and neutral reactions about their 

treatment within the legal system with respect to 

guardianship. 

There were people who described positive 

experiences with their lawyers, in court and/or 

with their guardians. For example:

■ One person in her early 40s described 

being under a “partial” guardianship since 

she turned 18 and identified as having a 

developmental 

disability. Her parent 

served as her 

primary guardian, 

with other family 

members serving 

as successor 

guardians, if 

needed. She said: 

“[Guardianship] 

was my choice. [I 

wanted] somebody available to help with 

things, and [I] am glad I do. I don’t think I 

would change it.” 

Other people subject to guardianship had 

negative experiences, which included being 

prohibited from accessing money and changing 

guardians, inattentive lawyers, and lack of an 

explanation of rights. For example:

■ One person, who was a veteran and 

reportedly had psychosocial disabilities and 

a history of substance abuse, reported: 

“I had a lawyer. Someone got him [for 

me.] . . . He made me sign the papers. If 

I had known what this was about, I would 

never have signed the papers. He never 

checked up on . . . me. He just dumped 

me . . . I don’t need no damn guardian.” This 

participant indicated that his lawyer did not 

represent him in the way he wanted, that he 

did not get adequate opportunity to talk to 

his lawyer before the guardianship hearing, 

and that he did not know if the lawyer told 

the judge what he wanted because he did 

not go to court. However, this participant 

was aware that he could go back to court to 

ask that his guardianship be removed, and 

he said he planned to do that. 

People with 

disabilities using 

alternatives to 

guardianship

NCD research found that 

people with disabilities 

using alternatives to 

guardianship, including 

those who had had 

their guardians removed 

and their full rights restored, had no positive 

responses to the treatment of people with 

disabilities within the legal system with respect 

to guardianship. 

In terms of negative responses, participants 

reported that society took for granted that every 

person with disabilities requires guardianship. 

For example:

■ One person with a significant developmental 

disability stated: “At my IEP meetings during 

high school, the school told my parents they 

needed to get a guardianship of me, so that 

they could still make decisions for me . . . 

“I had a lawyer. Someone got him 

[for me.] ... He made me sign the 

papers. If I had known what this was 

about, I would never have signed 

the papers. He never checked up 

on ... me. He just dumped me ...

I don’t need no damn guardian.”

142 National Council on Disability
Just because I do not talk doesn’t mean I’m 

incompetent.”

Additionally, some interviewees felt that the 

legal system, courts, lawyers, and evaluators did 

not spend enough time to adequately assess an 

individual’s level of function. For example:

■ One woman with a psychosocial disorder 

who had been under state guardianship at 

one point in her life reported: “I did [have an 

attorney] but I only spoke to him for about 

10 minutes, about an hour before we went 

to court. . . . He just read over my reports 

and said, ‘Oh, it doesn’t look good.’” 

These interviewees 

also noted the lack of 

education they received 

on their civil and legal 

rights and defined 

guardianship as the 

taking away of a person’s 

rights. 

Family member 

guardians and/or supporters 

NCD’s research found that family member 

guardians and supporters expressed positive, 

negative, and neutral reactions regarding how 

people with disabilities are treated within the 

legal system with respect to guardianship. 

Multiple participants described the court 

experience as positive, stating they felt the 

person with disabilities was respected—although 

sometimes absent—and that the person’s 

rights, including right to seek revocation of the 

guardianship, were reviewed. For example: 

■ One family guardian reported that her son 

was treated “very politely” in the court 

process. She went on to say: “He had his 

own representation. He did have a lawyer. 

They only met right before. My lawyer 

shared all that information with this other 

attorney, and they met privately before 

coming in, so I wasn’t there. I couldn’t 

answer questions for him or deter questions 

or anything like that. . . . And . . . our 

guardianship judge, . . . he’s been great. . . . 

he’s not pro-guardianship, he’s pro-family . . . 

he’s not someone that I can’t approach.” 

■ Another family guardian reported: “[T]he 

judge that did our proceedings, I thought did 

a marvelous job. . . . [H]e was very good in 

explaining to us what this 

meant, that it’s serious—

taking people’s rights 

away—and I thought he 

was very good.” 

Many interviewees 

indicated that the people 

with disabilities did not, 

in fact, understand the 

legal proceedings, that 

their rights and the nature of the legal process 

were not adequately explained to them, and that 

their legal counsel had limited communication 

with them. For example:

■ One guardian said: “[T]he judge had said to 

[my daughter], ‘Do you want guardianship 

or do you not?’ . . . [and] she said, ‘Sure, 

yes, I’ll have guardianship.’ But I don’t 

think [she] really understood what was 

happening in the court system at that 

particular time.” 

■ Another guardian said: “We never had a 

hearing and never went to court. Because 

“At my IEP meetings during high 

school, the school told my parents 

they needed to get a guardianship 

of me, so that they could still make 

decisions for me ... Just because 

I do not talk doesn’t mean I’m 

incompetent.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 143
of [my daughter’s] disability, people totally 

ignored that . . . But she had someone 

represent her who was appointed by the 

state who came in and spent 10 minutes 

talking to us. [Because my daughter does 

not communicate verbally], the lawyer did 

not [know] how 

to communicate 

with her [and] then 

signed off on the 

guardianship, and 

we never went to 

court.” 

■ One former 

guardian of her 

son, who had his 

rights eventually 

restored, reported: 

“[T]he lawyer that the court appointed . . . 

came for 2 hours, never went to his job 

site, never went to where he volunteered 

to actually see him moving about and 

being functional.” 

She went on to 

say that the court 

focused on her 

son’s diagnosis 

and did not “take 

the time to actually 

study who’s [in front of them] and their 

functionality.” 

Some interviewees who were family 

members and/or supporters described the 

person subject to guardianship as being seen 

as not a full person and not existing in the eyes 

of the law. Some defined guardianship as the 

“closest thing to the death sentence” and “like 

being in prison.” 

Professionals

NCD’s research found that the professionals 

interviewed had positive, negative, and neutral 

reactions regarding how people with disabilities 

are treated within the legal system with respect 

to guardianship. 

There were 

professionals that saw 

the legal system as 

designed to protect the 

rights, including legal 

representation and 

due process, of people 

with disabilities, but 

noted that research 

is needed to better 

understand how that 

system actually works 

in practice and how people with disabilities 

experience it. For example: 

■ One senior law attorney with decades of 

experience in guardianship policy concluded: 

“[W]e got the laws in 

pretty good shape. The 

concern is a less than 

vigorous recognition of 

those due process rights 

in some courts.” 

■ Another retired judge agreed: “[M]uch of the 

procedural protections that are provided in 

the [guardianship] statute are ignored.”

A few professionals noted the need to 

promote, where necessary, limited rather than 

full guardianships and/or conservatorships. For 

example:

■ One professional stated: “I think that 

guardianship is much more palatable as 

“[T]he lawyer that the court 

appointed ... came for 2 hours, 

never went to his job site, never 

went to where he volunteered to 

actually see him moving about and 

being functional.” She went on to 

say that the court focused on her 

son’s diagnosis ...

Another retired judge agreed: 

“[M]uch of the procedural 

protections that are provided in the 

[guardianship] statute are ignored.”

144 National Council on Disability
something that we have in a country that 

believes in individual freedom and liberty 

when it’s limited to actual needs as opposed 

to when it’s general and premised on the 

notion that people are globally incompetent.” 

He went on to say that it was important to 

look at rights not as a “bundle of sticks . . . 

that you either give or take away. [It’s 

about] looking at those sticks individually 

in determining only which decision-making 

capacity [that] individual lacks and taking 

only those [rights] away.” 

Some professionals remarked that, within 

the legal system, people with disabilities are 

treated not as individuals, but as stigmatized 

stereotypes; receive 

variable due process, 

without adequate legal 

representation; and 

are not adequately 

assessed in terms of 

their capability to make 

decisions and function. 

For example:

■ One professional concluded: “[P]eople 

[in guardianship proceedings] who are 

entitled to representation get somewhere 

between okay and crap . . . Pro bono 

programs are primarily for parents and 

practitioners in getting the cases into court 

and not for representing the people with 

disabilities . . . There’s no provision for 

counsel in [my state’s] statute [for people 

with developmental disabilities]. 

■ One professor, who also had experience 

being a guardian for his adult child stated: 

“I worry about whether the hearings are 

rubber-stamped formal or whether they are 

genuine interrogations [and] inquiries . . . ” 

Some interviewees who are professionals also 

reported that judges and lawyers have inadequate 

training, understanding, and experience with the 

needs of people with disabilities. For example:

■ One developmental disability service 

provider stated: “I understand there’s 

very little teaching in law schools around 

disabilities and so they don’t really get 

disabilities and they don’t get guardianships 

and what it may mean for the person with 

the disability.” 

■ One law professor further explained: 

“[T]he way the [guardianship] laws 

were established 

[are] based on kind 

of a presumption of 

incompetency depending 

on the person’s label of 

disability . . . I don’t think 

the legal system treats 

people well. In the guardianship process, 

I think judges may want to do the right 

thing, but they don’t know enough about the 

[disability] themselves to understand that, 

even if someone has a label of intellectual 

disability . . . or can’t even speak . . . [they] 

still may be able to make decisions for 

themselves so long as they can get the 

support that they need.”

■ For one professional interviewed, it came 

down to values: Judges may be “less likely 

to care about the due process issues and 

less likely . . . to value the individuals in 

front of them” because of a priority on 

expediency and judicial economy.

“[P]eople [in guardianship 

proceedings] who are entitled to 

representation get somewhere 

between okay and crap ...

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 145
Not all professionals agreed:

■ One attorney at a public guardian agency 

stated that she has “seen some good 

judges say, ‘Wait a minute . . . do you ever 

want to drive, do you want to vote, do you 

want to do these things? . . . Are you okay 

with your mom making your decisions?’” 

Additionally, in terms of guardianship, 

there were professionals who argued that the 

expectation should always be the least restrictive 

intervention in terms of decision making support; 

and a presumption of competence. Professionals 

also noted that education about rights should 

be personalized and not 

limited to the courtroom. 

For example:

■ “There needs to be 

a special attention 

given to and the 

way that people 

learn information 

and especially in the 

setting that or the 

circumstance that 

needs to be individualized to some degree 

or as much as possible to accommodate 

the various ways in people and people with 

disabilities can understand that kind of 

information.” 

■ “[I] don’t think being in a stressful 

courtroom should be the first time that that 

discussion is being had, I think [it] . . . can 

be very intimidating for people.” 

Supported Decision Making

NCD’s research identified two salient overarching 

themes among the interviews when it came to 

supported decision making: 

■ No support system, including guardianship 

and supported decision making, is free from 

risk of exploitation or abuse. 

■ For people with significant support needs, 

supported decision making might not be as 

easy to implement well. 

The analysis results for each participant 

category are discussed as follows.

People with disabilities subject to 

guardianship

NCD research found that people with disabilities 

subject to guardianship expressed positive 

and neutral reactions 

regarding supported 

decision making as a 

viable alternative to 

guardianship. 

Participants 

responded positively 

to the definition of 

supported decision 

making, although many 

were not previously 

familiar with the term. 

Some described a relationship with their guardian 

as akin to the supported decision making model. 

For example:

■ “If I don’t understand something all I have 

got to do is tell [my guardian] and she will 

help me understand it.” 

People with disabilities using 

alternatives to guardianship

NCD research found that people with disabilities 

using alternatives to guardianship expressed 

positive reactions regarding supported decision 

making as a viable alternative to guardianship. 

One attorney at a public guardian 

agency stated that she has “seen 

some good judges say, ‘Wait a 

minute ... do you ever want to 

drive, do you want to vote, do you 

want to do these things? ... Are you 

okay with your mom making your 

decisions?’”

146 National Council on Disability
Participants recognized that all people rely 

on natural supports to understand and make 

decisions and sometimes make poor decisions 

and that, in that sense, people with disabilities 

should be seen as no different than people 

without disabilities. For example:

■ One person said: “I think there are people 

with and without disabilities who make 

really bad decisions and would benefit from 

someone helping them learn how to live 

healthier and safer lives. To me, supported 

decision-making is what really good family 

and friends do. It’s having conversations 

with each other 

about needs and 

wants and coming 

to a decision with 

their help when 

needed. My mama 

still gets helps from 

my grandpa and 

grandma when she has a big decision to 

make. Buying a car, having surgery, taking a 

new job. We all need each other [and should] 

respect our rights to make the final decision.” 

■ Another person said: “I believe that people 

should be able to make their own decisions, 

but they also have to deal with the 

consequences of the decisions they make. 

If someone is there telling another person 

what they should do, . . . they’re not going 

to be able to make their own judgments 

about situations and figure out their own 

problem-solving for certain situations.”

Family member guardians and/or 

supporters

NCD research found that family members and/

or supporters expressed positive, negative, and 

neutral reactions regarding supported decision 

making as a viable alternative to guardianship. 

There were family members who described 

supported decision making as a form of selfdetermination. They reported that most people 

can and should have the right to make their own 

decisions and that people with disabilities should 

be involved in the decision making process. For 

example:

■ A mother who uses supported decision 

making with her son said: “He’s a human 

being. He has likes and dislikes; we all do. 

And why do we not respect that?” 

■■ ■ Another participant 

who supports her 

adult cousin with 

multiple sclerosis 

emphasized his right 

to make his own 

decisions: “[H]e had 

a hospitalization . . . 

in which . . . the hospital staff were 

recommending that he move from [the] 

hospital to . . . a residential rehab facility. 

And he didn’t want to go. He said, ‘I want 

to go home.’ . . . I really don’t think it’s a 

good decision, but it’s his decision and he’s 

decided he wants to go home, so I will make 

sure that he has all the support in place.” 

■ A guardian said: “I don’t make any decisions 

for my son without him—without talking 

to him about it. . . .[I]f he doesn’t have to 

buy in [to a decision], then it’s going to be a 

lot harder for me to deal with that decision 

and getting it to be accepted and make 

it happen. . . . [H]e knows . . . if there’s 

something he wants to do, he can come 

and . . . we can talk it through. Is it realistic? 

Sometimes it is, sometimes it isn’t.” 

A mother who uses supported 

decision making with her son said: 

“He’s a human being. He has likes 

and dislikes; we all do. And why do 

we not respect that?”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 147
Additionally, family members asserted that, 

because supported decision making tends to rely 

on natural supports, the people with disabilities 

using it will be engaged with their community, 

which will in turn enable them develop skills 

necessary to receive the information they need 

to weigh the benefits and risks of potential 

decisions. In addition, community members 

will hold each other accountable for the kind of 

support that is provided, which will also guard 

against conflicts of interest. For example:

■ One family member said: “I do believe that’s 

a better way to go when there is a group of 

people, because the way we supported [my 

son] is that we do build a circle of support 

around him so that people know and 

understand what his 

hopes and dreams 

are for the future.” 

■ Another said: “[I]f 

you have supported 

decision-making 

and the person 

could still keep their 

rights, . . . if there’s a small group of people 

[supporting the person], hopefully, they 

would hold each other accountable [and 

include] some family members so that . . . 

people [involved] have similar values. . . . 

I think there’s some level of safety in that.” 

However, there were also those who 

expressed concern that third-party providers, 

such as doctors, may be less likely to listen to 

people with disabilities who are using supported 

decision making as opposed to their guardians. 

One interviewee remarked that, although learning 

decision making through experiences with it 

was important, supported decision making 

is not ideal for people who do not use verbal 

communication. Another participant also noted 

that supported decision making only works when 

everyone involved is open, honest, and believes 

in community. For example:

■ “[I]f a person cannot speak up for 

themselves, how do we ensure that they 

have equity? How do we ensure that he 

is not just left sitting as he is in a corner in 

a chair alone 24 hours a day? Supported 

decision making won’t take care of that.” 

■ “I really hate saying [this] because I think 

everyone can make decisions on some level. 

But [for] some of the very larger ones . . . 

we know that she is unable to process all of 

that.” 

Professionals

NCD’s research found 

that professional 

experts expressed 

positive, negative, 

and neutral reactions 

regarding supported 

decision making as a viable alternative to 

guardianship. 

Positive responses considered supported 

decision making the “gold standard,” part of what 

it means to become an adult, and an empowering 

way to maximize autonomy, self-control, and selfesteem. Some saw supported decision making 

as a way people can make decisions consistent 

with their own goals and values and lead happier 

and healthier lives. Others commented:

■ “I think supported decision-making can be 

alternative outside of guardianship as well 

as a component within an appropriate . . . 

guardianship.”

“I think supported decisionmaking can be alternative outside 

of guardianship as well as a 

component within an appropriate ..

. guardianship.”

148 National Council on Disability
■ “That’s what we should be focused on, 

that no one is ever truly independent. We’re 

interdependent on one another and that’s 

true for people with all kinds of disabilities 

and people without disabilities.”

Negative responses about supported decision 

making noted that it, as well as other alternatives 

to guardianship, such as powers of attorney and 

representative payees, still affords opportunities 

for abuse and exploitation. For example:

■ “I’m not sure that . . . supported decisionmaking is going to make a difference one 

way or the other in terms of preventing . . . 

abuse. . . . We want to allow people to make 

mistakes and to be like everybody else but 

sometimes the cost to somebody with a 

disability is . . . being abused and taken 

advantage of . . .” 

■ “Well, frankly, I don’t know that anybody 

knows what [supported decision-making] 

exactly means. . . . [Y]ou’re to get . . . 

people around this person and then you 

support what their decisions are and . . . 

, unless the person has only the physical 

disability, I think that’s pretty stupid. Now 

that doesn’t mean we don’t do supported 

decision-making all the time as a guardian, 

[but] we have some controls over that [to 

be sure about] what makes them safe and 

what might . . . put them at risk . . . We 

don’t do [something] just because they say 

[so] because, at the end of the day, if we 

help facilitate somebody doing something 

that puts them at risk and they get hurt, 

guess who’s liable? Me.” 

They also raised concerns about supporters 

imposing their own beliefs on the person.

■ With supported decision making, “what 

you’re supposed to do is help facilitate the 

person to make their own decision, but if 

your facilitator has very strong belief about 

what this person should or not be doing, it’s 

hard to imagine how they’re going to be a 

very effective facilitator.” 

Neutral reactions included calls for training on 

supported decision making and more safeguards 

against abuse and exploitation. It was also noted 

that parents may find it particularly difficult to 

transition to allowing their adult child to use 

supported decision making. 

Access to Information About the 

Guardianship Process and Possible 

Alternatives

NCD’s research identified two salient and 

overarching themes regarding whether people 

with disabilities and their families are being 

provided with information about the guardianship 

process and possible alternatives. These themes 

are as follows: 

■ People with disabilities, family members, 

and professionals agree there is not 

enough high quality and accessible 

information available about alternatives 

to guardianship, particularly supported 

decision making. Often, people are 

presented with guardianship as the only 

option.

■ While many people are not familiar with 

supported decision making as a formal 

concept, they are engaging in it and 

benefiting from it. 

The analysis results for each participant 

category are discussed as follows.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 149
People with disabilities subject to 

guardianship

NCD’s research found that people with disabilities 

subject to guardianship expressed positive and 

neutral reactions regarding information about 

guardianship and its alternatives. 

There were people subject to guardianship 

who responded that their guardian provides them 

with information as needed. For example:

■ One person, who was in his mid-50s, 

has an acquired brain injury and hearing 

impairment, and whose sister serves 

as his guardian, stated: “I like having a 

guardian . . . They look after me and take 

good care of me, 

make sure I’m 

doing nothing 

wrong and make 

sure I’m taking my 

medicine . . . They 

make sure that 

everything I do I 

go the right [way] 

in doing it and . . . 

make sure that I’ll 

be happy. I have no complaints about the 

way they treated me.” 

Many respondents reported that they were 

not familiar with alternatives to guardianship or 

did not know whether they were ever offered or 

explained. 

People with disabilities using 

alternatives to guardianship

NCD research found that people with disabilities 

using alternatives to guardianship expressed 

positive, negative, and neutral reactions regarding 

the receipt of information about guardianship 

and its alternatives. Some interviewees had 

received information about guardianship and 

its alternatives through the school system or 

community-based programs. Others did not 

specify how they learned about guardianship and 

its alternatives. 

Negative reactions called for more 

personalized education and training on decision 

making and money management for people with 

disabilities, their supporters, the educational 

system, and the broader community. Some saw 

the educational system as pushing parents into 

becoming guardians without informing them of 

other options. For example:

■ “[P]arents are told that when their child 

turns 18 and they don’t 

have a guardian, they 

won’t be able to make 

medical decisions, 

they . . . won’t be able 

to support their loved 

ones. So, you got a lot 

of parents that . . . will 

then rush to go get 

guardianship and then, 

once they get it, and they actually realize, 

‘Oh, my goodness, my son or daughter no 

longer has rights,’ then they can’t get that 

overturned.” 

Family member guardians and/or 

supporters

NCD research found that family members and 

supporters received a range of information 

about guardianship and its alternatives. Some 

learned about decision making options, such as 

supported decision making, power of attorney, 

and representative payee, through case 

managers, community programs, and their own 

So, you got a lot of parents 

that ... will then rush to go get 

guardianship and then, once they 

get it, and they actually realize, ‘Oh, 

my goodness, my son or daughter 

no longer has rights,’ then they can’t 

get that overturned.” 

150 National Council on Disability
jobs. Others only received information about 

guardianship from their child’s school or legal 

professionals and were never presented with 

options other than guardianship. For example:

■ “[T]he information does not come to 

families or individuals. You have to go seek it 

out yourself and I think that’s part of, I think 

there’s just a lot of misinformation and no 

information.” 

■ “I would love to get out of guardianship 

but have been unable to. . . . We received 

guardianship when she was 18 because 

we were told that was the right thing 

to do. . . . I was told that because [my 

daughter’s 

disability] is 

so severe and 

she’s also 

nonverbal . . . that 

we should assume 

guardianship for her 

at the age of 18, 

and this was by the 

school . . . I think that parents who made 

decisions years ago without options should 

now . . . be able to go back and have the 

opportunity that parents have now of 

putting one of less-restrictive options into 

effect.” 

■ “[M]y husband and I questioned, ‘Why 

do we need to get guardianship? We will 

always see that he’s cared for properly and 

all of that,’ but [we were told] that was the 

practice.” 

Some reported that they had been engaging 

in supported decision making, but were not 

familiar with the term. Others expressed concern 

about the potential for there to be abuse and 

exploitation outside of guardianship. Others 

described applying supported decision making in 

select situations. For example:

■ One guardian said: “When it’s appropriate 

I ask what [my daughter’s] choice is and go 

with her choice. . . . When it’s over her head 

and she won’t be able to comprehend a 

decision, then we make it for her in her best 

interest.”

Professionals

NCD’s research found that the professionals 

interviewed also had a range of positive, 

negative, and neutral 

responses regarding 

information about 

guardianship and its 

alternatives.

Some professionals 

asserted that the public 

is generally aware of 

both limited and full 

guardianship and that 

many learn about it through their peers and 

affiliations with organizations knowledgeable 

about it, so there is a need for self-advocacy. 

Others felt that information on decision making 

processes was inadequate or nonexistent, and 

that such information should be presented not 

only in legal settings, but also schools and health 

settings.

■ One professional indicated that guardianship 

was the main option presented to families 

of people with developmental disabilities: 

“When your child is 18 years old, you 

had better be in court and getting that 

guardianship, bingo bango, just like that.” 

“I think that parents who made 

decisions years ago without options 

should now ... be able to go back 

and have the opportunity that 

parents have now of putting one of 

less-restrictive options into effect.” 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 151
Other professional experts remarked that 

information dissemination varies from case to 

case and state to state. 

Impact of Guardianship

NCD research identified two salient and 

overarching themes from the interviews with 

respect to the impact that guardianship has on 

people with disabilities and their families. 

■ Guardianship can be overly restrictive in its 

effect. 

■ Guardianship can improve the lives of those 

supporting the person with disabilities, but it 

does not necessarily 

improve the life of 

the person subject 

to guardianship.

The analysis results 

for each participant 

category are discussed 

as follows.

People with 

disabilities subject to guardianship

NCD research found that people with disabilities 

subject to guardianship had positive, negative, 

and neutral reactions to how guardianship 

impacts them and their families and improves 

health and safety outcomes. 

Some interviewees described positive 

experiences in which their guardians assisted 

them in managing their finances, answered their 

questions, or protected them from making poor 

decisions. For example:

■ One person, who was in her early 60s and 

had a psychosocial disability, reported liking 

her public guardian: “They help me with my 

money and stuff and make sure that my bills 

are paid and stuff like that.” She went on 

to say: “I said, ‘I don’t want nobody to take 

advantage of me no more.’ I said, ‘I’m safer 

with you, [Public Guardian].’ I told her that 

she is an angel from heaven and she is.” 

She also explained how her guardian helped 

her get some of her rights restored. 

Others felt negatively or neutral about being 

subject to guardianship. One person felt that 

guardianship led people to underestimate their 

intelligence. Another did not feel any significant 

change to his or her life since being subject to 

guardianship. 

People with 

disabilities using 

alternatives to 

guardianship

People with disabilities 

using alternatives 

to guardianship had 

negative and neutral 

reactions to how guardianship impacts people 

and their health and safety. 

Many interviewees disliked the lack of control 

people have over their decisions and finances 

when they are subject to guardianship. For 

example:

■ One man with a developmental disability 

described the self-worth that came from 

making his own decisions: “[I]t was a real 

eye-opener when I got to ask my wife, 

‘Would you marry me?’ I didn’t have to go to 

my mom [to get permission] and say, ‘Hey, 

ma, I asked that girl, will she marry me?’” 

■ A woman in her 20s said: “I felt very uneasy 

over the idea of someone else having 

“[I]t was a real eye-opener when 

I got to ask my wife, ‘Would you 

marry me?’ I didn’t have to go to my 

mom [to get permission] and say, 

‘Hey, ma, I asked that girl, will she 

marry me?’” 

152 National Council on Disability
control of my life. . . . It makes me feel sad, 

and sometimes even irritated, because the 

guardian can always make decisions for 

the person, and what if the person wants 

something different than what the guardian 

wants? . . . I would feel kind of like a 

prisoner, knowing that all my decisions were 

up to someone else.” 

One interviewee recounted that, when 

she was subject to guardianship, she was 

psychologically, verbally, and physically abused 

by staff at a hospital. She went on to say that, to 

her, guardianship “means prison on the outside 

of the prison.” 

Another interviewee 

shared that she felt 

that being subject to 

guardianship has an 

effect on a person’s 

development of decision 

making ability: “I think 

[my friend who is subject 

to guardianship] has 

trouble making her own 

decisions because she 

always just seems to go with what her guardian 

wants, and never really seems to question it.” 

Neutral responses noted that the impact of 

guardianship varies case by case. 

Family member guardians and/or 

supporters

Family members and/or supporters had 

positive, negative, and neutral reactions to how 

guardianship impacts people and their health and 

safety. 

Positive reactions included assertions that that 

guardianship means there will be court oversight, 

which will provide the people subject to it some 

protection from exploitation. Others noted that 

guardianship gives the guardians themselves 

greater peace of mind. For example:

■ “[W]e had a major incident and went to the 

hospital. And the hospital said that they 

would give all the information [about my 

brother] to the [residential] provider about 

what happened and they would not give 

that information to me . . . It was part of the 

reason I took guardianship.” 

■ “I have legal guardianship over my son but 

it’s just there. It’s just sitting there on a 

shelf. . . . [I]t’s just there as a safety net . . . 

So, I can sleep more 

soundly knowing that . . . 

the police couldn’t come 

to my door, take him 

away in handcuffs and 

not have to speak to me.”

Others saw 

guardianship as a way of 

supporting the decision 

making of the person 

subject to it, while 

allowing the guardian to act on the person’s 

behalf in the event he or she is incapable of 

making a certain decision. For example:

■ One family member guardian stated: 

“I first of all make sure that people speak 

to [my son, who has a traumatic brain 

injury], because often, because he doesn’t 

speak, people assume that he’s not bright 

enough to understand and that they address 

me, because I’m his guardian. And . . . 

as a human being, he has a right to be 

addressed . . . and not spoken about [but] 

spoken to.”

“I have legal guardianship over my 

son but it’s just there. It’s just sitting 

there on a shelf.... [I]t’s just there 

as a safety net ... So, I can sleep 

more soundly knowing that ... the 

police couldn’t come to my door, 

take him away in handcuffs and not 

have to speak to me.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 153
Many negative responses argued that neither 

guardianship nor any support system can totally 

protect a person from exploitation, and that the 

lack of checks and balances within guardianship 

can actually foster exploitation and abuse. For 

example:

■ “My daughter is just as safe even if I didn’t 

have guardianship. I’m still her mother 

and there’s still people in the community 

that were looking after her with or without 

guardianship. I don’t think guardianship 

makes any difference on your safety. Just 

having that piece of paper doesn’t make you 

safer.” 

■ “[My daughter] says you can [try and] 

bubble wrap 

people, but that’s 

still not going 

to stop them 

from getting 

into trouble. . . . 

Sometimes those 

things just happen. 

[Your] piece of 

paper that says [you have a] guardian isn’t 

going to stop things.”

■ “Guardianship is not going to be a bubble 

around you that protects you completely. . . . 

The problem with guardianship, in general, 

is the extent of authority that people do 

have over other people and the potential 

for exploitation and abuse . . . [T]here 

have been some gosh awful stories about 

guardians [and others] who . . . exploit. They 

take . . . [people’s] government benefits or 

whatever other money, and they lock people 

in . . . a closet and don’t take care of them.”

■ “[G]uardianship can make people more 

vulnerable. . . [T]here’s a possibility that 

others might find that person more 

vulnerable if they knew that somebody else 

was somewhat overseeing their decision 

making or their health or anything like that. 

I think it puts them in a more vulnerable 

position.” 

Many saw guardianship as negatively 

impacting people’s health and happiness and 

forcing them to live the lives the guardians 

wanted for them. ” For example:

■ “It’s going to be about what’s best for 

the agency or the guardian and that’s not 

necessarily the best for the person.”

■ “Actually, what I know 

now is that she’s not 

[considered by others 

to be] a real person 

anymore, that she really 

doesn’t exist except for 

what I allow her to have 

and what I allow her to 

do, . . . as a guardian.” 

Neutral responses reported that the pros 

and cons of guardianship vary on a case by case 

basis. For example:

■ “[I]t can be good and it can be bad. It all 

depends on the guardian. If . . . there had 

been people that had been [subject to] 

guardianship because they’re in very poor 

health, because they haven’t been taking 

their medicine or whatever, and once they 

get the guardian in place, and when they get 

the health fund[ed], they can restore their 

lives.” 

“Actually, what I know now is that 

she’s not [considered by others to 

be] a real person anymore, that she 

really doesn’t exist except for what 

I allow her to have and what I allow 

her to do, ... as a guardian.” 

154 National Council on Disability
Professionals

Professional experts had positive, negative, and 

neutral reactions to how guardianship impacts 

people and their health and safety. 

There were professionals who asserted 

guardianship ensured people subject to it 

had their needs met; were protected from 

exploitation and abuse; and were served by 

outside providers, such as those in health care, 

housing, and finance arenas. For example:

■ “[T]here are lots of situations where 

guardianship or conservatorship is 

absolutely wanted and I think to take that 

tool away would be bad for a bunch of 

different reasons.”

■ “[S]ome people are 

very happy to get 

the help. They know 

they can’t handle 

things anymore and 

they’re cooperative.” 

■ “[W]hen a 

guardianship is appropriate is when a 

person . . . is putting themselves at serious 

risk or being financially exploited. For 

somebody who is financially exploited, 

oftentimes the guardianship is the only 

way to protect them. . . . I’ve gotten some 

self-neglect cases . . . [where] one person 

was almost dead by the time they were 

removed from the house and another had 

a long history of signing himself out AMA 

from various facilities and such. . . . [I]f 

we are looking at people who are putting 

themselves at risk and not open to any other 

options . . . the only choice is guardianship.” 

■ “I can’t give you case examples but I 

would say that most guardianships provide 

positive outcomes for the individual . . . 

We don’t have the data [but] it’s [likely] 

a miniscule percentage of the overall 

number of guardianship cases that are 

problematic.” 

Others saw guardianship as improving the 

lives of those surrounding the person with 

disabilities without necessarily improving his or 

her own life. For example:

■ “[T]he threat of guardianship . . . if you have 

problems because of cognitive impairment, 

the help you’re going to get is, ‘We’re going 

to take away your rights.’ 

That causes a lot of 

people to absolutely deny 

that they have a problem 

to accept any help when 

the problem might 

be much more easily 

managed.”

■ “[I]f I get a guardianship, I don’t have to 

argue with mom anymore about whether 

she should move or . . . whether she 

can still drive or whatever. I don’t have 

to argue with her anymore. I can just 

tell her.” 

■ “I think guardianship can be an effective tool 

for some people . . . [I]t’s simpler to have 

guardianship. It’s more complicated to have 

conversations.” 

Negative reactions stated that guardianship 

does not eliminate abuse, but can generate 

hostility, dehumanize and disempower 

people subject to it, and negatively impact 

“I think guardianship can be an 

effective tool for some people ...

[I]t’s simpler to have guardianship.

It’s more complicated to have 

conversations.” 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 155
family relationships and natural supports. For 

example:

■ One professional with a background in 

long-term care and adult guardianship 

through a state division of aging services 

said: “[I]t doesn’t make sense to me that 

you take rights away from an individual 

to help them.” She went on to say: “I’ve 

run into quite a few people [subject to 

guardianship] who have said, ‘I am not a 

person anymore.’”

■ An attorney, law professor, and consultant on 

disability-related issues said: “[G]uardianship 

creates a category of people who are not 

considered as legal people.” She went on 

to say: “I don’t 

think people are 

going to necessarily 

be exploited or 

hurt if there is 

no guardianship 

anymore. People are exploited and hurt right 

now with guardianship. Let’s try a different 

way.” She noted that guardianship could also 

detrimentally impact decision making skills of 

youth with disabilities: “When guardians are 

appointed for someone with an intellectual 

disability at the age of 18, they are denied the 

opportunity to learn how to make decisions 

of the critical years of their lives.” 

■ Another added: “I think it is a terrible affront 

to human dignity to take away somebody’s 

ability to make basic life decisions and cut 

them out of the conversation, if they are 

able to participate in any way.” 

Others pointed to the fact that abuses can 

occur within guardianship:

■ One interviewee stated: “[W]ith 

guardianship . . . you always have the 

potential for somebody to abuse their 

powers. . . . You can have an incredibly 

protective parent that gets a guardianship 

and is convinced that [example person] can 

never cross the street so [example person] 

doesn’t flourish and grow . . .” 

■ Another participant, who was part 

of a service provider for people with 

developmental disabilities stated: “[P]

eople have sort of succumbed to the 

power of the guardianship that made 

terrible choices for people. They’ve 

ripped people off, neglected people, 

have isolated people, 

and so I’ve seen 

the worst kinds of 

guardianships . . . .”

■■ ■ An attorney for a public 

guardian agency 

described abusive guardianship situations 

in which her office was asked to intervene: 

“[In] many other cases [we] were brought 

[in] where there’s an existing guardian 

[that] either somehow failed to complete 

their duty [or] they misappropriated money 

or they didn’t do what they were supposed 

to do and they’ve neglected the person or 

abused the person in some way.”

Neutral reactions contended that any support 

system requires a process for ensuring there are 

no conflicts of interest. 

National Disability Policy Goals and 

Initiatives 

NCD’s research identified two salient and 

overarching themes from the interviews with 

“[I]t doesn’t make sense to me 

that you take rights away from an 

individual to help them.”

156 National Council on Disability
respect to the impact that guardianship has 

relating to U.S. national disability policy goals and 

initiatives:

■ Good guardians support and advocate for 

people subject to guardianship in ways that 

align with disability policy goals.

■ Guardianship can also inhibit an individual 

from living a full, integrated life. 

The analysis results for each participant 

category are discussed as follows.

People with disabilities subject to 

guardianship

People with disabilities 

subject to guardianship 

had positive, negative, 

and neutral reactions 

to how guardianship 

currently aligns or 

conflicts with national 

disability policy goals and 

initiatives. 

Multiple people 

subject to guardianship 

reported that 

guardianship did not impact their day-to-day 

lives, where they lived, or their community 

involvement. Others disagreed. For example:

■ Guardianship is “a lot different from what 

I thought. I thought . . . they would just 

help us handle our money and everything, 

[but] we are in servitude to them with their 

workers. . . . I don’t mind a little help . . . , 

but when they control my life every day, tell 

me where to go, what time, when to shave, 

when not to shave . . . I do not like this 

guardianship.”

People with disabilities using 

alternatives to guardianship

People with disabilities using alternatives to 

guardianship had negative and neutral reactions 

to how guardianship currently aligns or conflicts 

with national disability policy goals and initiatives. 

Interviewees stated that guardianship impacts 

where people subject to it can live, what they can 

do, who they can associate with, how they are 

treated, and how integrated into the community 

they are. For example:

■ “Well, it’s good because . . . I’m still living 

by myself, choose who to come and who 

not to come and I still 

being able to choose 

what I want to eat, 

when I want to eat it . . . 

So, my life, it’s just like 

everyone else’s right 

now.”

■■ ■ “Sometimes, when 

we protect people, 

we shelter them. 

So this is why 

I say, sometimes 

guardianship can be a hindrance because 

we never give somebody the chance 

to make even the small decisions from 

what they want to eat or what they 

want to wear. Then, you run the risk of 

them never ever being able to make a 

decision.”

Neutral responses asserted that all forms 

of decision making requires varying levels of 

support depending on the extent of the person’s 

disability. 

“I thought ... they would just 

help us handle our money and 

everything, [but] we are in servitude 

to them with their workers....

I don’t mind a little help ... , but 

when they control my life every day, 

tell me where to go, what time, when 

to shave, when not to shave ... I do 

not like this guardianship.”

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 157
Family member guardians and/or 

supporters

Family members and/or supporters had 

positive, negative, and neutral reactions to how 

guardianship currently aligns or conflicts with 

national disability policy goals and initiatives. 

Some expressed that guardianship supported 

people’s civil rights and 

ensured they are safe 

and can build decision 

making skills. For 

example:

■ “Our job as guardian 

was to keep him safe, and to help him grow 

to where he could make decisions on his 

own with support.” 

Others indicated that they supported the 

person with disabilities to choose for themselves 

where they lived, what they wanted to do, 

whether and how they 

wanted to vote, and 

whether or not they 

wanted to get married. 

A number of 

interviewees described 

guardianship as an 

invasion of civil and 

human rights that 

creates stigma, lowers 

expectations, and 

negatively impacts how others act toward people 

with disabilities. There were participants who 

asserted that people subject to guardianship are 

hindered from living a full life that is integrated 

within the community. For example:

■ “I don’t think anyone should have 

guardianship. I think everyone deserves 

civil rights no matter what your level of 

understanding is. I assumed because my 

daughter is nonverbal, I have to assume 

that she understands everything and 

I think that’s how we should think of 

everyone.” 

■ “[T]he idea of me declaring him 

incompetent is kind 

of the opposite of 

everything we’re striving 

for . . . [D]eclaring 

someone to be 

incompetent takes away 

their personhood and in a 

sense makes them a piece of property.” 

■ “[G]enerally speaking, the public is still 

paternalistic and maternalistic towards 

people [subject to] guardianship. ‘Oh, you 

poor little person, you’ve got [a disability], 

you can’t do this and you can’t do that, 

and yadda, yadda, 

yadda.’”

Neutral responses 

recognized that the 

experiences of people 

subject to guardianship 

can vary—some can be 

empowered and others 

can be disempowered 

by it. 

Professionals

Professional experts had positive, negative, and 

neutral reactions to how guardianship currently 

aligns or conflicts with national disability policy 

goals and initiatives. 

Some interviewees argued that guardianship 

aligns with disability policy goals in that good 

“Our job as guardian was to keep 

him safe, and to help him grow to 

where he could make decisions on 

his own with support.”

“[T]he idea of me declaring him 

incompetent is kind of the opposite 

of everything we’re striving 

for ... [D]eclaring someone to 

be incompetent takes away their 

personhood and in a sense makes 

them a piece of property.” 

158 National Council on Disability
guardians support and advocate for the person 

in a way that helps him or her be integrated. 

For example:

■ “The good guardian is going to ensure that 

there is integration into the community[,] . . . 

that they receive the socialization, the 

community interaction, the community 

respect that they are do and that’s what a 

good guardian does.”

Other interviewees asserted that guardianship 

impinges on a person’s civil rights, correlates 

with social isolation, and as a result conflicts 

with disability policy goals, such as the ADA. 

For example:

■ “By definition, if you are not the person 

making decisions, your ability to be a real 

member of the community [is] smaller . . . 

[I]n most instances, guardianship violates 

the inclusion mandate of the ADA and the 

Olmstead principle.”

■ “[Guardianship is] never going to allow 

that person [subject to it] to really become 

integrated to community because [others 

are] going to have to be always checking” 

with the guardian, not the person.

A neutral reaction noted that focusing on the 

dignity and autonomy of people with disabilities 

can fix the problems of guardianship and 

inequality faced by that population.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 159
160 National Council on Disability
T

hroughout this report NCD has noted 

that while guardianship exists to protect 

individuals who may need assistance 

managing their affairs or who may need 

protection from abuse, neglect, or exploitation, 

it also undermines the ability of people with 

disabilities to exercise self-determination often 

without sufficient due-process to say definitively 

that the individual lacked the capacity to 

make decisions for themselves. Additionally, 

in some cases, guardianship may create 

conditions that lead to exploitation rather than 

protecting vulnerable individuals from it. As 

NCD examined the ongoing efforts of the past 

several decades to rectify some of the wellrecognized problems in guardianship, it became 

clear there are no easy answers or perfect 

solutions to these complex issues. However, 

the Council makes the following findings 

regarding the current state of guardianship and 

offers recommendations that we believe would 

improve the lives of people with disabilities 

who may need decision making assistance 

and prevent them from being placed into 

unnecessary or overly restrictive guardianships 

as well as improving court oversight of existing 

guardianships to prevent abuse, neglect, and 

exploitation. 

Chapter 10: Findings and Recommendations

Finding 1: There is a lack of data on existing guardianships and newly filed 

guardianships. 

Most states do not track on a statewide basis how many individuals are subject to 

guardianship, much less describe those guardianships in terms of basic demographic 

information, whether the guardian is a professional or family guardian, the extent of 

the guardian’s authority, the assets involved, and other basic questions that would help 

policymakers and stakeholders make determinations about what reforms may be needed in 

guardianships or where resources should be directed to improve guardianship outcomes for 

people with disabilities. 

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 161
Recommendations:

NCD recommends that Congress and the Administration develop initiatives to produce 

effective and comprehensive data on guardianship. There are two ways production of this 

data should be approached:

■ Federal agencies such as the SSA, the CMS, the VA, SAMHSA, and other relevant agencies 

should collect data on whether or not individuals they serve are subject to guardianship. 

■ States should be offered incentives and technical assistance with developing electronic 

filing and reporting systems that collect basic information about guardianships from the 

moment a petition is filed. A searchable, computerized system for aggregating information 

on adult guardianship cases would not only yield better usable data on guardianships, but 

would also improve that ability of courts to monitor and audit individual guardianships. 

Systems such as the “My Minnesota Conservator” reporting and data project are already 

in use in a few states and could be adopted across the country. Data collected must be 

detailed enough to allow for drawing conclusions and should include demographics, type of 

guardianship (limited vs. plenary, guardian over property vs. person, etc.), type of guardian 

(public guardians, private professional guardian, family guardian), age at which the person 

was subject to guardianship, court audits, timeliness of reports, amount of funds/property 

in the estate, and the involvement of the person in federal programs (Social Security 

benefits, SSI, Medicaid, Medicare, VA benefits, etc.). The data should also include whether 

the initial petition was contested, whether there is any time limitation to the guardianship, 

and whether there is any periodic review of the continued need for guardianship. 

Finding 2: People with disabilities are widely (and erroneously) seen as 

less capable of making autonomous decisions than other adults regardless of the 

actual impact of their disability on their cognitive or decision making abilities. This can lead 

to guardianship petitions being filed when it is not appropriate and to guardianship being 

imposed when it is not warranted by the facts and circumstances. 

Recommendations:

■ The DOJ, in collaboration with the HHS, should issue guidance to states (specifically 

Adult Protective Services [APS] agencies and probate courts) on their legal obligations 

pursuant to the ADA. Such guidance should address NCD’s position that: 1) the ADA is 

applicable to guardianship proceedings; 2) the need for assistance with activities of daily 

living or even with making decisions does not give rise to a presumption of incapacity; and 

(continued)

162 National Council on Disability
3) guardianship should be a last resort that is imposed only after less restrictive alternatives 

have been determined to be inappropriate or ineffective. 

■ In January 2017, the U.S. Department of Education Office of Special Education and 

Rehabilitative Services (OSERS) issued school-to-adult transition-related guidance that 

recognized alternatives to guardianship, including the use of supported decision making 

and powers of attorney for adult students with disabilities. While this policy development is 

promising, OSERS needs to do more to ensure consistent implementation of this guidance 

across state and local educational agencies—for example, the creation of model supported 

decision making and powers-of-attorney forms geared toward transition-age youth. School 

transition teams must inform parents/caregivers and students of less-restrictive decision 

making support options for adults, rather than promoting the overuse of guardianship or 

involuntary educational representatives. 

■ The Department of Education Office of Special Education Programs (OSEP) should instruct 

Parent Training and Information Centers to prioritize and provide meaningful training on 

school-to-adult transition and alternatives to guardianship. 

■ HHS should issue guidance regarding the responsibility of medical professionals and 

hospitals to accommodate the needs of individuals who may need assistance making 

medical decisions and to adequately explain procedures and draft documents provided to 

patients in plain language. 

■ Although the Federal Government generally leaves the content of medical school training 

to the accrediting bodies, federal advisory group recommendations and federal grants from 

CMS, HHS, and other federal agencies can influence the content of medical training and 

curriculum. Educating medical professionals about the ADA and the need to accommodate 

people with disabilities, including those with intellectual disabilities and cognitive 

impairments, should be prioritized as a part of medical training.

■ The National Home and Community-Based Services Quality Enterprise (NQE) should 

include decision making assistance and use of alternatives to guardianship such as 

supported decision making in their priorities and include best practices as part of its 

resources, training, and technical assistance. 

■ The Administration for Community Living (ACL) has funded numerous projects that are 

geared toward expanding alternatives to guardianship, such as supported decision making. 

The agency also provides state grants to enhance adult protective services. Such funding 

should be allocated specifically to assist state adult protective services systems to develop 

greater awareness of ways to enhance the self-determination of adults considered vulnerable 

or in need of services, as well as the availability and use of alternatives to guardianship. 

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 163
■ The Developmental Disabilities Councils, University Centers for Excellence in 

Developmental Disabilities (UCEDDs), and the Protection and Advocacy (P&A) 

organizations should link work that has been done on advancing the self- determination 

of people with ID/DD with avoiding guardianship. There needs to be recognition that 

the appointment of guardians is not necessarily the preferred outcome for people with 

disabilities. Such appointments instead can be the result of systems failing to fully 

recognize people’s right to direct their own life and to support them in developing selfdetermination and communication skills, use and build natural support networks, and 

have access to less-restrictive alternatives. . UCEDDs in particular have a role in educating 

physicians, medical professionals, and parents of people with ID/DD on self-determination, 

SDM, and other alternatives to guardianship. 

Finding 3: People with disabilities are often denied due process in 

guardianship proceedings.

Guardianship is viewed as a benevolent measure that is sought in the best interest of people 

with disabilities and/or older adults who are seen as needing protection. Guardianship 

cases are often dispensed with as quickly as possible with little concern for due process or 

protecting the civil rights of individuals facing guardianship. 

Recommendations:

■ The Elder Abuse Prevention and Prosecution Act (P.L. 115-70) calls upon the Attorney 

General to publish best practices for improving guardianship proceedings and model 

legislation relating to guardianship proceedings for the purpose of preventing elder abuse. 

The Attorney General’s model legislation should incorporate the UGCOPAA, including its 

provisions for preventing unnecessary guardianships. 

■ To ensure that due process requirements are met, it is especially important that 

alleged incapacitated individuals facing guardianship have qualified, independent legal 

representation that will advocate for the individual’s desired outcome, especially if that 

person expresses a desire to avoid guardianship or objects to the proposed guardian. 

However, many courts lack sufficient resources to fund this type of representation and 

families often find that such representation is cost-prohibitive. Federal grant money should 

be made available to help promote the availability of counsel. 

(continued)

164 National Council on Disability
■ A state guardianship court improvement program should be funded to assist courts with 

developing and implementing best practices in guardianship, including training of judges 

and court personnel on due process rights and less-restrictive alternatives. 

■ The degree of due process provided in a guardianship matter should not be contingent 

on the type of disability that is the alleged cause of an individual’s incapacity or inability 

to make and carry out decisions. The DOJ should take the position that such practices are 

discriminatory on the basis of the ADA. 

Finding 5: Guardianship is considered protective, but courts often fail to 

protect individuals.

In some cases, guardians use their position to financially exploit people or subject them to 

physical neglect and abuse. Courts lack adequate resources, technical infrastructure, and 

training to monitor guardianships effectively and to hold guardians accountable for the timely 

and accurate submission of required plans, accountings, and other reports, as well as for 

conforming to standards of practice for guardians. 

Finding 4: Capacity determinations often lack a sufficient scientific or 

evidentiary basis.

Courts rely too heavily on physicians who lack the training, knowledge, and information 

needed to make an accurate determination. 

Recommendations:

■ National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), 

National Institutes of Health, and other agencies that fund scientific research should 

provide grants to researchers who are trying to develop a better understanding of how 

people make decisions and how a variety of conditions—such as dementia, intellectual 

disabilities, brain injuries, and other disabilities—impact the ability of individuals to make 

and implement informed decisions. 

■ Capacity is a social and legal construct that is not necessarily provable or disprovable 

through scientific methods. Resources also should be geared toward developing functional 

approaches to capacity assessments that take into account the possibility that someone may 

need decision making assistance but not necessarily a surrogate or substitute decision maker.

(continued)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 165
Recommendations:

■ The court improvement program proposed earlier could also enhance the ability of courts 

to monitor guardianships and should include the adoption of programs such as My 

MNConservator, which requires guardians to file reports electronically, allows for the flagging 

potential problems in filed accountings, and facilitates the periodic audit of guardianship files. 

■ Although professional and family guardians can both be the perpetrators of abuse 

in guardianship, there have been several high-profile cases of abuse by professional 

guardians. In most states, these professionals operate with minimal oversight except by 

the court. States should be provided with incentives to establish statewide boards that can 

provide for the accreditation and oversight of professional guardians. 

■ States should require family guardians to undergo training to ensure they understand their 

ongoing responsibilities to the person subject to the guardianship and to the court. 

Finding 6: Most state statutes require consideration of less-restrictive 

alternatives, but courts and others in the guardianship system often pay lip 

service to this requirement. 

Courts often find that no suitable alternative exists when, in fact, supported decision making 

or another alternative might be appropriate. 

Recommendations:

■ ACL currently funds the National Resource Center for Supported Decision making and 

several demonstration projects at the state and local levels. These grants should be 

expanded to be able to fund more geographically- and demographically-diverse projects and 

pilots that specifically test SDM models and use SDM and the court systems to restore 

people’s rights as a matter of law, particularly for people who are older adults with cognitive 

decline, people with psychosocial disabilities, and people with severe intellectual disabilities.

■ The DOJ should make funding available to train judges in the availability of alternatives to 

guardianship including, but not limited to, supported decision making. This training should 

also include information about the home and community-based–services system and the 

workforce development system so that judges understand the context in which decisions 

are being made by and for people with disabilities. See Finding 3.

■ It’s important that states adopt provisions of the UGCOPAA that recognize alternatives 

to guardianship can be used in place of guardianship even when it is determined that the 

individual meets the definition of incapacity. DOJ should develop guidance to this effect. 

166 National Council on Disability
Finding 7: Every state has a process for restoration, but this process is 

rarely used and can be complex, confusing, and cost-prohibitive.

Data on restorations is seriously lacking, making it impossible to tell how many individuals 

are in unnecessary guardianship or whether individuals who would like to try to have 

their rights restored have access to information about their right to restoration, receive 

an appropriate response to their request for restoration, or have access to resources and 

representation to assist them in that effort. 

Recommendations:

■ As a part of the effort to improve data collection and monitoring, electronic filing and 

auditing systems ought to include data about restoration, including whether the individual 

was given information about restoration and whether the continued need for guardianship 

was reviewed by the court. 

■ The state court improvement program referenced throughout these recommendations 

should include improvements to the restoration process. DOJ should publish guidance 

regarding the right to restoration and best practices. 

■ A grant should be given to the Protection and Advocacy system to provide legal assistance 

to individuals who are trying to have their rights restored or avoid guardianship. 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 167
168 National Council on Disability
Appendix A: Table of Authorities—State Guardianship 

Statutes

(continued)

AL Ala. Code. T. 26, Ch. 2A, Art. 1-2 MT Mont. Code Ann. T. 72, Ch. 5, Pt. 1-6

AK Alaska Stat. Ann. T. 13, Ch. 26, Art. 1-6 NE Neb. Rev. Stat. Ch. 30, Art. 26, Pt. 1-5

AZ Ariz. Rev. Stat. T. 14, Ch. 5, Art. 1-8 NV Nev. Rev. Stat. Ann. T. 13, Ch. 159

AR Ark. Code. Ann. T. 28, Subpart 5, Ch. 74 

Art. 1-5

NH N.H. Rev. Stat. Ann. T. XLIV, Ch. 462-465

CA Cal. Prob. Code §§ 1400-1490; 1500-

1611; 1800-1970; 2100-2893; 2900-2955.

NJ N.J. Stat. Ann. T. 3b, Ch. 12, Art. 4-7

CO Colo. Rev. Stat. Ann. T. 15, Art. 14, Pt. 1-5 NM N.M. Stat. Ann. Ch. 45, Art. 5, Pt. 1-4

CT Conn. Gen. Stat. Ann. §§ 45a-591 to 

-602; 45a-628 to -705a

NY N.Y. Mental Hyg. Law §§ 81.01 to 81.44; 

N.Y. Soc. Serv. Law §§ 473-d to -e

DE Del. Code Ann. T. 12, Ch. 39, 

Subpart I-VII

NC N.C. Gen. Stat. Ann. Ch. 35A, Subch. I-IV

FL Fla. Stat. Ann. T. XLIII, Ch. 744, Pt. I-VIII ND N.D. Cent. Code Ann. T. 30.1, Art. V, 

Ch. 30.1—28

GA Ga. Code Ann. T. 29, Ch. 1-11 OH Ohio Rev. Code Ann. Sup. Rule 51, 

Form 15

HI Haw. Rev. Stat. T. 30A, Ch. 560, Art. V, 

Pt. 1-6

OK Okla. Stat. Ann. T. 30, Art. 3

ID Idaho Code Ann. ST. T. 15, Ch. 5, Pt. 1-6 OR Or. Rev. Stat. Ann. T. 13, Ch. 125, Art. 1-5

IL Ill. Comp. Stat. Ann. Ch. 755, Act. 5, 

Art. XIA

PA Pa. Cons. Stat. Ann. T. 20, Ch. 55, 

Subch. C-F

IN Ind. Code Ann. T. 29, Art. 3, Ch. 1-13 RI R.I. Gen. Laws Ann. T. 33, Ch. 15.2

IA Iowa Code Ann. T. XV, Subpart 4, 

Ch. 633, Div. XIII, Pt. 1-7

SC S.C. Code Ann. T. 62, Art. 5, Pt. 1-7

KS Kan. Stat. Ann. Ch. 59, Art. 30 SD S.D. Codified Laws T. 29a, Ch. 29A-5, Pt. 1-5

KY Ky. Rev. Stat. Ann. T. XXXIII, Ch. 387 TN Tenn. Code Ann. T. 34, Ch. 1-8

LA La. Rev. Stat. Ann. T. 13, Ch. 24, Pt. I-V TX Tex. Est. Code T. 3, Subt. D-I

ME Me. Rev. Stat. T. 18-a, Art. V, Pt. 5-a, 

Subpart 1-5

UT Utah Code Ann. T. 75, Ch. 5, Pt. 1-6

MD Md. Code Ann. T. 13, Subpart 2 & 7, Pt. II VT Vt. Stat. Ann. T. 14, Pt. 4, Ch. 111

MA Mass. Gen. Laws Ann. T. 2, Ch. 190B, 

Art. V-5a

VA Va. Code Ann. T. 37.2, Subt. IV, 

Ch. 10-10.1

MI Mich. Comp. Laws Ann. Ch. 700, Art. V, 

Pt. 1-5

WA Wash. Rev. Code Ann. T. 11, 

Ch. 11.88-11.92

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 169
MN Minn. Stat. Ann. Ch. 252A WV W. Va. Code Ann. Ch. 44A, Art. 1-5

MS Miss. Code. Ann. T. 93, Ch. 14, Art. 1-5 WI Wis. Stat. Ann. Ch. 54, Subch. I-VII

MO Mo. Ann. Stat. T. XXXI, Ch. 475 WY Wyo. Stat. Ann. T. 3, Ch. 2, Art. 1-3

DC D.C. Code Div. III, T. 21, Ch. 20, 

Subpart I-VI

170 National Council on Disability
Appendix B: Developmental Disability Specific 

Guardianship Statutes

AZ Ariz. Rev. Stat. T. 36, Ch. 5.1, Art. 1 KY Ky. Rev. Stat. Ann. T. XXXIII, 

Ch. 387.550-387.880

CA Cal. Health & Safety Code Div. 1, Pt. 1, 

Ch. 2, Art. 7.5

MI Mich. Comp. Laws Ann. Ch. 6, 

Sec. 330.1600-330.1644

CT Conn. Gen. State Ann. §§45a-669 to -684 MN Minn. Stat. Ch. 252A, Sec.

252a.01-252a.21

FL Fla. Stat. Ann. T. XXIX, Ch. 393 NY NY Surr. Ct. Pro. Act Law Ch. 59-a, Art.

17-a Sec. 1750

ID Idaho Code Ann. T. 66, Ch. 4 SD S.D. Cod. Laws T. 29A, Ch. 29A-5, Pt. 1-5 

IA Iowa Code Ann. T. XV, Subt. 4, Ch. 633, 

Div. XIV, Pt. 1

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 171
172 National Council on Disability
Appendix C: Contact Information for WINGS Groups*

ACL Project WINGS

Alabama Bob Maddox; bob.maddox@alacourt.gov

Alaska Stacey Marz; smarz@akcourts.us

Florida Tina White; whitet@flcourts.org

Idaho Nanci Thaemert; nthaemert@idcourts.net

Indiana Erica Costello; erica.costello@courts.IN.gov

Oregon Bryan Marsh; Bryan.B.Marsh@ojd.state.or.us

Utah Karolina Abuzyarova; karolinaa@utcourts.gov

SJI Supported WINGS 2013

New York Jean Callahan; JCallahan@legal-aid.org

Oregon Bryan Marsh; Bryan.B.Marsh@ojd.state.or.us

Texas David Slayton; David.Slayton@txcourts.gov

Utah Karolina Abuzyarova; karolinaa@utcourts.gov

SJI Supported WINGS 2015

District of Columbia Anne Meister; anne.meister@dcsc.gov

Indiana Erica Costello; erica.costello@courts.IN.gov

Minnesota Anita Raymond; araymond@voamn.org 

Mississippi Desiree Hensley; desiree.c.hensley@gmail.com

Washington Stacey Johnson; Stacey.Johnson@courts.wa.gov

Additional WINGS-Type Groups*

Maryland Nisa Subasinghe; Nisa.Subasinghe@mdcourts.gov

Massachusetts Wynn Gerhard; wgerhard@gbls.org

Missouri Dolores Sparks; dsparks@moddcouncil.org 

Montana Sarah McClain; smcclain@mt.gov

North Carolina Linda Kendall Fields; lkfields@email.unc.edu

Pennsylvania Cherstin Hamel; Cherstin.Hamel@pacourts.us

West Virginia Jennifer Taylor; jtaylor@lawv.net

Wisconsin Andrew Bissonnette; bissonnetteandrew@yahoo.com

Virginia Paul DeLosh; pdelosh@vacourts.gov

*Georgia, Guam, and Ohio also have WINGS-Type groups, but contacts for those groups were not readily available.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 173
174 National Council on Disability
Appendix D: Attorney Representation in Initial 

Guardianship Cases

(continued)

State

Entitlement to Appointment of Counsel 

in accordance with UGCOPA 

Sec. 305(a), Sec. 406(a)*

Statute specifies the advocacy role of 

Counsel in accordance with National 

Probate Court Standard 3.3.5(B)✝

Ala. Yes Code of Ala. § 26-2A-101(b); 

26-2A- 135(b)

No Code of Ala. § 26-2A-102(b); 

26-2A-135(b)

Alaska Yes Alaska Stat. § 13.26.231 Yes Alaska Stat. § 13.26.246

Ariz. Yes A.R.S. § 14-5303(c) No N/A

Ark. Yes A.C.A. § 28-65-213 No N/A

Calif. Yes Cal Prob Code § 1823(b)(6); 

1470(a); 1

No N/A

Colo. Yes C.R.S. 15-14-305 No N/A

Conn. Yes Conn. Gen. Stat. § 45a-649a; 

45a-673; 45a-681

No N/A 

Del. Yes 12 Del. C. § 3901(C) No N/A

D.C. Yes D.C. Code § 21-2041(d); 21-2054(a) Yes D.C. Code § 21-2033

Fla. Yes Fla. Stat. § 744.331 Yes Fla. Stat § 744.102(1)

Ga. Yes O.C.G.A. § 29-4-11(c)(1)(D) No N/A

Hawaii Yes Haw. Rev. Stat. Ann. § 560:5-305. No N/A

Idaho Yes Idaho Code § 15-5-303(b) No Idaho Code § 15-5-303(b)

Ill. Yes 755 Ill. Comp. Stat. Ann. 5/11a-10 No N/A

Ind. No Ind. Code Ann. § 29-3-5-1. No N/A

Iowa Yes Iowa Code § 633.561. No N/A (but see In re Guardianship 

of Griesinger, 804 N.W.2d 527, 529 

(Iowa Ct. App. 2011))

Kans. Yes Kan. Stat. Ann. § 59-3063. No N/A

Ky. Yes Ky. Rev. Stat. Ann § 387.560. No N/A

La. Yes La Code. Civ. Proc. Ann. Art. 4544. No N/A

Maine Yes Me. Rev. Stat. tit. 18-A, § 5-303 No N/A

Md. Yes Md. Code Ann., Est. & Trusts 

§ 13-705

No N/A (but see In re Lee, 754 A.2d 

426, 438-39 (Md. Ct. Spec. App.

2000)

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 175
State

Entitlement to Appointment of Counsel 

in accordance with UGCOPA 

Sec. 305(a), Sec. 406(a)*

Statute specifies the advocacy role of 

Counsel in accordance with National 

Probate Court Standard 3.3.5(B)✝

Mass. Yes Mass. Gen. Laws ch. 190B, § 5-106. No N/A

Mich. Yes Mich. Comp. Laws Ann. § 700.5305, 

700.5306a.

No N/A

Minn. Yes Minn. Stat. Ann. § 524.5-304, - 307 No N/A

Miss. No Miss. Code Ann. § 93-13-255. No Miss. Code Ann. § 93-13-255.

Mo. Yes Mo. Ann. Stat. § 475.075(3). No Mo. Ann. Stat. § 475.075(3).

Mont. No Mont. Code Ann. § 72-5-315(2)(4). No Mont. Code Ann. § 72-5-315(2).

Nebr. No Neb. Rev. Stat. Ann. § 30-2619 No N/A

Nev. Yes Nev. Rev. Stat. Ann. § 159.0485. No N/A

N.H. Yes N.H. Rev. Stat. Ann. § 464-A:6. No N/A (but see In re Guardianship of 

Henderson, 838 A.2d 1277, 1278-79 

(N.H. 2003))

N.J. Yes N.J.R. Super. Tax Surr. Cts. Acts. R.

§ 4:86-4 (b)

No N/A (but see N.J.R. Super. Tax Surr.

Cts. Acts. R. § 4:86-4 (b))

N. Mex. Yes N.M. Stat. Ann. § 45-5-303(C). No N.M. Stat. Ann. § 45-5-303(C).

N.Y. No No for people with IDD: N.Y. Surr.

Ct. Proc. Act Law §§ 1750; 1750-a; 

1750-b

Yes for people without IDD: N.Y.

Mental Hyg. Law § 81.10

No N/A

N.C. No N.C. Gen. Stat. Ann. § 35A-1107. No N.C. Gen. Stat. Ann. § 35A-1107.

N. Dak. Yes N.D. Cent. Code Ann. § 30.1-28-03 No N.D. Cent. Code Ann. § 30.1-28-

03(4)(c)

Ohio Yes Ohio Rev. Code Ann. §§ 2111.02 (C)(7) No N/A (but see In re Baby Girl 

Baxter, 17 Ohio St.3d 229, 232 

(1985) (superseded by statute on 

other grounds))

Okla. Yes Okla. Stat. Ann. tit. 30, § 3-106(A)

(7), -107

No N/A

Oreg. No Or. Rev. Stat. Ann. §§ 125.025; 

125.080.

No N/A

Pa. Yes 20 Pa. Stat. and Cons. Stat. Ann.

§ 5511

No N/A (but see In re Estate of 

Rosengarten, 871 A.2d 1249, 1257 

(Pa. Super. Ct. 2005)

R.I. Yes R.I. Gen. Laws Ann. § 33-15-7. No N/A

S.C. Yes S.C. Code Ann. § 62-5-303(b). No S.C. Code Ann. § 62-5-303(b).

(continued)

176 National Council on Disability
State

Entitlement to Appointment of Counsel 

in accordance with UGCOPA 

Sec. 305(a), Sec. 406(a)*

Statute specifies the advocacy role of 

Counsel in accordance with National 

Probate Court Standard 3.3.5(B)✝

S. Dak. Yes S.D. Codified Laws § 29A-5-309 No N/A

Tenn. Yes Tenn. Code Ann. § 34-1-125 Yes Tenn. Code Ann. § 34-1-125(a)

Tex. Yes Tex. Est. Code Ann. § 1054.001 Yes Tex. Est. Code Ann. § 1002.002

Utah No Utah Code Ann. § 75-5-303(2), (5)(3) No N/A

Vt. Yes Vt. Stat. Ann. tit. 14, § 3065 Yes Vt. Stat. Ann. Title 14-3065(b).

Va. No Va. Code Ann. § 64.2-2006. No N/A

Wash. Yes Wash. Rev. Code Ann.

§ 11.88.045(a)

Yes Wash. Rev. Code Ann.

§ 11.88.045(b)

W. Va. Yes W. Va. Code § 44A-2-7(a) No W. Va. Code § 44A-2-7

Wis. Yes Wis. Stat. § 54.42 Yes Wis. Stat. § 54.42(b)

Wy. No Wyo. Stat. Ann. § 3-1-205(a)(iv) No N/A

* The UGCOPAA sets out two alternative counsel provisions: A) the court must appoint a lawyer to represent the 

respondent if 1) requested by the respondent, 2) recommended by the court visitor, or 3) the court determines it is 

needed; or B) unless the respondent is already represented by a lawyer, the court must appoint one.

✝

 The National Probate Court Standards provide that “the role of counsel should be that of an advocate for the 

respondent.” Standards 3.3.5(B).

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 177
178 National Council on Disability
Endnotes

1 Robert Dinerstein, “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of 

Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights 

Brief 19, no. 2 (2012): 9.

2 American Bar Association Commission on Law and Aging and American Psychological Association, 

Assessment of Older Adults with Diminished Capacity: A Handbook for Lawyers, 5–8, last modified March 25, 

2005.

3 John Stuart Mill, On Liberty, 4th ed. (London: Longman, Roberts, & Green Co., 1869), 9.

4 Robert Dinerstein, “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of 

Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights 

Brief 19, no. 2 (2012): 9.

5 Lawrence A. Frolik, “Guardianship Reform: When the Best is the Enemy of the Good,” Stanford Law and 

Policy Review 9, no. 347 (Spring 1998): 347.

6 Robert Dinerstein, “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of 

Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights 

Brief 19, no. 2 (2012): 8–9.

7 National Council on Disability, The State of 21st Century Long-Term Services and Supports: Financing and 

Systems Reform for Americans with Disabilities, December 2005, accessed January 24, 2018, www.ncd.gov/

publications/2005/12152005.

8 National Guardianship Association, accessed January, 29, 2018, https://www.guardianship.org/

what-is-guardianship/.

9 Unif. Guardianship, Conservatorship & Protective Arrangements Act § 102 (12) (Unif. Law Comm’n 

2017), accessed January 24, 2018, http://www.uniformlaws.org/shared/docs/Guardianship%20and%20

Protective%20Proceedings/2017AM_UGCOPPA_AsApproved.pdf.

10 See Va. Code Ann. § 64.2-2004.

11 See RULE 5.030.

12 American Bar Association Commission on Law and Aging, State Adult Guardianship Legislation: Directions 

of Reforms – 2015, accessed January 24, 2018, http://www.americanbar.org/content/dam/aba/administrative/

law_aging/2015_final_guardianship_legislative_update.authcheckdam.pdf.

13 Mathews v. Eldridge, 424 U.S. 348 (1976) (“The essence of due process is the requirement that “a person in 

jeopardy of serious loss (be given) notice of the case against him and opportunity to meet it.”).

14 Nancy J. Knauer, “Defining Capacity: Balancing the Competing Interests of Autonomy and Need,” Temple 

Political & Civil Rights Law Review 12 (Spring 2003): 325–327, 330.

15 See Conn. Gen. Stat. §§45a-655 (2017) (conservatorship); Conn. Gen. Stat. §§ 45a-656 (2017) (guardians of 

persons with intellectual disabilities); Minn. Stat. § 252A (2016) (appointment of guardian for an individual with 

a developmental disability); Minn. Stat. § 524.5-301 (2016) (appointment of a guardian for an incapacitated 

person).

16 See Wash. Rev. Code § 11.88.045(4) (2016).

17 See 755 Ill. Comp. Stat. 5/11a-10(a) (West 2017).

18 See Tex. Est. Code Ann. § 1101.103 (West 2017) (requiring that doctor’s notes accompanying a petition for 

guardianship be dated no more than 120 days before the filing of the petition).

19 Naomi Karp and Erica Wood, “Guardianship Monitoring: A National Survey of Court Practices,” Stetson Law 

Review 37 (Fall 2007): 163.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 179
20 Unif. Guardianship and Protective Proceedings Act § 102 (Nat’l Conference of Comm’rs on Unif. State Laws 

1997).

21 Mary Joy Quinn, Guardianships of Adults: Achieving Justice, Autonomy, and Safety (New York, NY: Springer 

Publishing, 2005), 35.

22 Ibid.

23 American Bar Association Commission on Law and Aging and American Psychological Association, 

Assessment of Older Adults with Diminished Capacity: A Handbook for Lawyers, accessed January 24, 2018, 

7, last modified March 25, 2005, http://www.americanbar.org/content/dam/aba/administrative/law_aging/2012_

aging_capacity_hbk_ch2.authcheckdam.pdf.

24 Ibid.

25 See Colo. Rev. Stat. Ann. § 15-14-311 (West 2017); Mont. Code Ann. § 72-5-316 (2015).

26 Salzman, Rethinking Guardianship (Again): Substituted Decision Making As a Violation of the Integration 

Mandate of Title II of the Americans with Disabilities Act, 174; Teaster, et al., Public Guardianship After 25 

Years: In the Best Interest of Incapacitated People?, 219; Frolik, Promoting Judicial Acceptance and Use of 

Limited Guardianship, 740–744.

27 See Mass. Gen. Laws ch. 190B, § 5A-102 (2017).

28 See 755 Ill. Comp. Stat. Ann. 5/11a-14(d) (2017).

29 Meta S. David, “Legal Guardianship of Individuals Incapacitated by Mental Illness: Where Do We Draw the 

Line?” Suffolk University Law Review 45 (2012): 479.

30 Unif. Guardianship and Protective Proceedings Act § 311 (Nat’l Conference of Comm’rs on Unif. State Laws 

1997); Meta S. David, “Legal Guardianship of Individuals Incapacitated by Mental Illness: Where Do We Draw 

the Line?,” Suffolk University Law Review 45 (2012): 479.

31 National Council on Disability, Exhibit 1.1: Timeline of Major Legislative and Policy Initiatives Affecting People 

with Developmental Disabilities, 1960–2010, table (February 15, 2011), accessed January 24, 2018, http://

www.ncd.gov/rawmedia_repository/17c2ab41_51aa_4c6c_b069_300ee3d142c1.pdf.

32 20 U.S.C. §1400(c)(1) (2010).

33 Ellen Brantlinger, Sterilization of People with Mental Disabilities: Issues, Perspectives, and Cases (1995), 1–5.

34 Ibid., 4–5.

35 Buck v. Bell, 274 U.S. 200 (1927).

36 Mary Ziegler, “Reinventing Eugenics: Reproductive Choice and Law Reform After World War II,” Cardozo 

Journal of Law & Gender 14 (Spring 2008): 322, Westlaw.

37 Stefan Kühl, The Nazi Connection: Eugenics, American Racism, and German National Socialism (New York, 

NY: Oxford University Press, 2001).

38 Robyn M. Powell, “Safeguarding the Rights of Parents with Intellectual Disabilities in Child Welfare Cases: 

The Convergence of Social Science and Law,” City University of New York Law Review 20 (Winter 2016): 128, 

Westlaw (citing Eugenical Sterilization Act, Act of Mar. 20, 1924, ch. 394, 1924 Va. Acts 569 [repealed 1974]).

39 National Council on Disability, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their 

Children (September 27, 2012), 44, accessed January 24, 2018, https://www.ncd.gov/sites/default/files/

Documents/NCD_Parenting_508_0.pdf.

40 National Council on Disability, Rocking the Cradle, page 16.

41 National Council on Disability, Deinstitutionalization: Unfinished Business (Companion Paper 

to Policy Toolkit), (September 2012), accessed January 24, 2018, https://www.ncd.gov/policy/

deinstitutionalization-unfinished-business-companion-paper-policy-toolkit-0.

42 James W. Trent, Jr., Inventing the Feeble Mind: A History of Mental Retardation in the United States, 

(Berkeley and Los Angeles: University of California Press, 1995), 31.

43 Robert Bogdan, Martin Elks, and James A. Knoll, Picturing Disability: Beggar, Freak, Citizen and Other 

Photographic Rhetoric (Syracuse: Syracuse University Press, 2012), 69, 71.

180 National Council on Disability
44 Staff, “Excerpts from Statement by Kennedy,” The New York Times, September 10, 1965, quoted in National 

Council on Disability, Forty Years After The Willowbrook Consent Decree, NCD Celebrates How Far We’ve 

Come, May 4, 2015, accessed January 24, 2018, https://ncd.gov/newsroom/05042015#_edn3.

45 Geraldo Rivera, “Exposé of Willowbrook State School,” WABC-TV, January 6, 1972, accessed June 27, 2017, 

http://dlib.nyu.edu/undercover/expose-willowbrook-state-school-geraldo-rivera-wabc-tv; Bill Baldini, “Suffer the 

Little Children,” NBC10 Philadelphia, 1968, accessed January 24, 2018, http://www.preservepennhurst.com/

default.aspx?pg=26.

46 Ibid.

47 Bill Baldini, “Suffer the Little Children,” NBC10 Philadelphia, 1968, accessed January 24, 2018, http://www.

preservepennhurst.com/default.aspx?pg=26.

48 James W. Trent, Jr., Inventing the Feeble Mind: A History of Mental Retardation in the United States, 

(Berkeley and Los Angeles: University of California Press, 1995), 1.

49 Phillip M. Massad and Bruce Dennis Sales, “Guardianship: An Acceptable Alternative to Institutionalization?,” 

American Behavioral Scientist 24, no. 6 (1981): 756.

50 Bull Am Acad Psychiatry Law 15, no. 1 (1987): 77.

51 Iowa Department of Human Services, Money Follows the Person Guardian Consent to Participate in Transition 

Planning, accessed January 24, 2018, http://dhs.iowa.gov/sites/default/files/470-4564-Guardian%20Consent.

pdf.

52 Kristin Baker, et al., Money Follows the Person Rebalancing Demonstration: Closed Cases Report for 2014, 

UCONN Center on Aging, accessed January 24, 2018, https://health.uconn.edu/dev-aging/wp-content/uploads/

sites/102/2017/03/2014_closed_cases_report.pdf.

53 University of California at Berkeley Disabled Students’ Program, About, accessed January 24, 2018, http://dsp.

berkeley.edu/about.

54 Wendy Edelstein, “Ed Roberts, disability-rights leader and Cal alum, gets his own state day,” Berkeley News, 

July 27, 2010, accessed January 24, 2018, http://news.berkeley.edu/2010/07/27/roberts/.

55 Access Living, Independent Living History: A Brief History of the Independent Living Movement, accessed 

January 24, 2018, https://www.accessliving.org/Independent-Living-History.

56 Jacobus Tenbroek, “The Right to Live in the World: The Disabled in the Law of Torts,” California Law Review 

54, no. 2 (1966): 918.

57 Rehabilitation Act of 1973, 29 U.S. § 794(a) (1973).

58 Rehabilitation Act of 1973, P.L. 93-112, 87 Stat. 355.

59 Kitty Cone, “Short History of the 504 Sit-In,” Disability Rights and Education Defense Fund, accessed January 

24, 2018, https://dredf.org/504-sit-in-20th-anniversary/short-history-of-the-504-sit-in/.

60 National Council on Disability, Rehabilitating Section 504, Feb. 12, 2003, accessed January 24, 2018, 13, 

https://ncd.gov/rawmedia_repository/77de6d4a_3c88_46e9_aed4_bcea96a3ac4d.pdf.

61 National Council on Disability, Rising Expectations: The Developmental Disabilities Act Revisited, Feb. 14, 

2011, accessed January 24, 2018, https://ncd.gov/publications/2011/Feb142011#toc6.

62 Developmental Disabilities Assistance and Bill of Rights Act of 1975, P.L. 94-103, 89 Stat. 486 (1975).

63 Education for All Handicapped Children Act, P.L. 94-142, 89 Stat. 773 (1975); Individuals with Disabilities 

Education Act, 20 U.S.C. 20 §1400 (1990).

64 Ibid.

65 Donna Langston, “Black Civil Rights, Feminism, and Power,” Race, Gender & Class 5, no. 2 (1998): 158.

66 Nancy J. Knauer, “Symposium: Lawyering for the Mentally Ill: Defining Capacity: Balancing the Competing 

Interests of Autonomy and Need,” Temple Political and Civil Rights Law Review 12 (2003): 321.

67 Ibid., 341–342.

68 O’Connor v. Donaldson, 422 U.S. 575 (1975).

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 181
69 Wyatt v. Stickney, 325 F. Supp. 781 (M.D. Ala. 1971); National Council on Disability, Home and CommunityBased Services: Creating Systems for Success at Home, at Work and in the Community, accessed January 

24, 2018, 11, https://ncd.gov/rawmedia_repository/HCBS%20Report_FINAL.pdf.

70 Samuel R. Bagenstos, “The Past and Future of Deinstitutionalization Litigation,” Cardozo Law Review 34, no. 1 

(2012): 25.

71 K. Charlie Lakin, Robert Prouty, and Kathryn Coucouvanis, “Twenty-Year Retrospective on Proposals to 

Eliminate the ‘Institutional Bias’ in Medicaid for Persons with ID/DD,” Mental Retardation 44, no. 6 (2006): 

450–454.

72 42 U.S. Code § 1396a.

73 Omnibus Budget Reconciliation Act of 1981, P.L. 97-35, 95 Stat. 357, § 2176 (1981).

74 National Council on Disability, Consumer-Directed Health Care: How Well Does It Work?, Oct. 26, 

2004, accessed January 24, 2018, 24, http://www.ncd.gov/rawmedia_repository/7fc3e5bf_73f5_4d9b_

a97e_90d19558ad74.pdf.

75 42 U.S.C. 1396(n).

76 National Council on the Handicapped, Toward Independence: An Assessment of Federal Laws and Programs 

Affecting Persons with Disabilities – with Legislative Recommendations (Washington, DC: U.S. Government 

Printing Office, 1986), 18, accessed January 24, 2018, http://www.ncd.gov/publications/1986/February1986.

77 Ibid.

78 National Council on Disability, National Council on Disability: 20 Years of Independence, July 26, 2004, 

accessed January 24, 2018, 15, https://ncd.gov/rawmedia_repository/738f18be_d833_4546_998b_

af343a6cb24c.pdf.

79 Americans with Disabilities Act of 1990, P.L. 101-336, 104 Stat. 327 (1990).

80 Olmstead v. L.C. ex rel Zimring, 527 U.S. 581 (1999).

81 Brown v. Board of Education, 349 U.S. 294 (1955); Mary C. Cerreto, “Olmstead: The Brown v. Board of 

Education for Disability Rights Promises, Limits, and Issues,” Loyola Journal of Public Interest Law 3, no. 47 

(2001).

82 Olmstead, 527 U.S. at 581-82.

83 Ibid., 581-82, 607.

84 Ibid., 587.

85 Ibid., 597.

86 Ibid., 599, 609.

87 Leslie Salzman, “Rethinking Guardianship (Again): Substituted Decision Making As A Violation Of The 

Integration Mandate Of Title II Of The Americans With Disabilities Act,” University of Colorado Law Review 81 

(2010): 157.

88 Division for Social Policy and Development Disability, Convention on the Rights of Persons with Disabilities 

(CRPD), United Nations, accessed January 24, 2018, https://www.un.org/development/desa/disabilities/

convention-on-the-rights-of-persons-with-disabilities.html.

89 U.S. International Council on Disability, The Convention on the Rights of Persons with Disabilities, accessed 

January 24, 2018, http://usicd.org/index.cfm/crpd.

90 United Nations, Division for Social Policy and Development Disability, Convention on the Rights of Persons 

with Disabilities (CRPD), accessed March 3, 2018, https://www.un.org/development/desa/disabilities/

convention-on-the-rights-of-persons-with-disabilities.html. 

91 Ibid.

92 National Council on Disability, Statement on the Convention on the Rights of Persons with Disabilities (CRPD), 

July 14, 2014, accessed June 27, 2017, https://www.ncd.gov/publications/2014/07142014

93 Sally B. Hurme and Erica Wood, “Guardianship Accountability Then and Now: Tracing Tenets for an Active 

Court Role,” Stetson Law Review 31 (2002): 867.

182 National Council on Disability
94 A. Frank Johns and Vicki Joiner Bowers, “Guardianship Folly: The Misgovernment of Parens Patriae and the 

Forecast of its Crumbling Linkage to Unprotected Older Americans in the Twenty-First Century—A March of 

Folly? Or Just a Mask of Virtual Reality?,” Stetson Law Review 27 (1997): 17–20.

95 A. Frank Johns, “Ten Years After: Where is the Constitutional Crisis with Procedural Safeguards and Due 

Process in Guardianship Adjudication?,” Elder Law Journal 7 (1999): 48.

96 Jennifer L. Wright, “Protecting Who From What, And Why, And How? A Proposal for an Integrative Approach 

to Adult Protective Proceedings,” Elder Law Journal 12 (2004): 57.

97 Black’s Law Dictionary, 10th edition, s. v. “Parens Patriae.”

98 U.S. Const. amend. X.

99 U.S. Const. art. VI, cl. 2.

100 Neil B. Posner, “The End of Parens Patriae in New York: Guardianship Under the New Mental Health Hygiene 

Law Article 81,” Marquette Law Review 79 (1996): 606.

101 Kristin B. Glen, “Changing Paradigms: Mental Capacity, Legal Capacity, Guardianship, and Beyond,” Columbia 

Human Rights Law Review 44 (2012): 128.

102 O’Connor v. Donaldson, 422 U.S. 563, 576 (1975).

103 A. Frank Johns, “Ten Years After: Where is the Constitutional Crisis with Procedural Safeguards and Due 

Process in Guardianship Adjudication?,” Elder Law Journal 7 (1999): 57.

104 Youngberg v. Romeo, 457 U.S. 307, 319 (1982).

105 Michael L. Perlin, Pamela R. Champine, Henry A. Dlugacz, and Mary A. Connell, Competence in the Law: 

From Legal Theory to Clinical Application (Hoboken, NJ: John Wiley & Sons, 2008), 248.

106 Fred Bayles and Scott McCartney, “Guardians of the Elderly: An Ailing System Part 1:Declared ‘Legally 

Dead’ by a Troubled System,” Associated Press, September 19, 1987, accessed January 24, 2018, http://

www.apnewsarchive.com/1987/Guardians-of-the-Elderly-An-Ailing-System-Part-I-Declared-Legally%20

Dead-by-a-Troubled-System/id-1198f64bb05d9c1ec690035983c02f9f.

107 U.S. Congress, 1987, Abuses in Guardianship of the Elderly and Infirm: A National Disgrace: Hearings Before 

the Subcommittee on Health and Long-Term Care of the Select Committee on Aging, 100th cong., 1st sess., 

5-10, 8 (statement of Claude Pepper), accessed January 24, 2018, http://files.eric.ed.gov/fulltext/ED297241.pdf.

108 National Guardianship Association, About NGA: Mission, Overview and History, accessed November 10, 2016, 

https://www.guardianship.org/about-us/who-we-are/.

109 Sally Balch Hurme and Erica Wood, “Guardian Accountability Then and Now: Tracing Tenets for an Active Court 

Role,” Stetson Law Review 31 (2002): 869.

110 ABA Commission on the Mentally Disabled and ABA Commission on Legislative Problems of the Elderly, 

Guardianship: An Agenda for Reform—Recommendations of the National Guardianship Symposium and Policy 

of the American Bar Association, accessed January 17, 2017, https://www.americanbar.org/content/dam/aba/

administrative/law_aging/2011/2011_aging_gship_agda_refrm.authcheckdam.pdf.

111 Sally Balch Hurme, & Erica Wood, “Guardian Accountability Then and Now: Tracing Tenets for an Active Court 

Role,” Stetson Law Review 31 (2002): 870.

112 Ibid., 869–870.

113 Ibid., 870.

114 David English, “Amending the Uniform Guardianship and Protective Proceedings Act to Implement the 

Standards and Recommendations of the Third National Guardianship Summit,” National Academy of Elder Law 

Attorneys Journal 12, no. 33 (2016): 34–40.

115 Nina A. Kohn and Catheryn Koss, “Lawyers for Legal Ghosts: The Legality and Ethics of Representing Persons 

Subject to Guardianship,” Washington Law Review 91 (2016): 606.

116 Sally Hurme and Erica Wood, “Introduction,” Utah Law Review, no. 3 (2012): 1160.

117 A. Frank Johns and Charles P. Sabatino, “Wingspan—The Second National Guardianship Conference, 

Recommendations,” Stetson Law Review 31, no. 3 (Spring 2002): 595–609, HeinOnline.

118 Ibid.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 183
119 David English, “Amending the Uniform Guardianship and Protective Proceedings Act to Implement the 

Standards and Recommendations of the Third National Guardianship Summit,” National Academy of Elder Law 

Attorneys Journal 12, no. 33 (2016): 36.

120 Ibid.

121 A. Frank Johns and Charles P. Sabatino, “Wingspan—The Second National Guardianship Conference, 

Introduction,” Stetson Law Review 31, no. 3 (Spring 2002): 593, HeinOnline.

122 Leslie P. Francis, “Preface Third National Guardianship Summit: Standards of Excellence,” Utah Law Review,

no. 3 (2012): 1157.

123 American Bar Association Commission on Law and Aging, About the ACL Grant, accessed January 24, 2018, 

https://www.americanbar.org/groups/law_aging/resources/wings-court-stakeholder-partnerships/about-thegrant.html.

124 Ibid.

125 United Nations Convention on the Rights of Persons with Disabilities, Dec. 13, 2006, 2515 U.N.T.C. 3., art. 12.

126 Alex L. Pearl, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities 

and the Legal Capacity of Disabled People: The Way Forward?, accessed January 24, 2018, 

http://1neaqn120jll48xd411i5uav.wpengine.netdna-cdn.com/files/2013/09/Article-12_Pearl.pdf.

127 Robert D. Dinerstein, “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of 

Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights 

Brief 19 (2012): 3.

128 Ibid., 8–9.

129 Robert Dinerstein, Esme Grant Grewal, and Jonathan Martinis, “Emerging International Trends and Practices 

in Guardianship Law for People with Disabilities,” ILSA Journal of International and Comparative Law 22, no. 2 

(Winter 2016): 443, n.38.

130 Leslie Salzman, “Rethinking Guardianship (Again): Substituted Decision Making As a Violation of the 

Integration Mandate of Title II of the Americans with Disabilities Act,” University of Colorado Law Review 81 

(2010): 157.

131 Uniform Law Commission, Guardianship, Conservatorship, and Other Protective Arrangements 

Act Committee, accessed January 24, 2018, http://www.uniformlaws.org/Committee.

aspx?title=Guardianship,%20Conservatorship,%20and%20Other%20Protective%20Arrangements%20Act.

132 David English, “Amending the Uniform Guardianship and Protective Proceedings Act to Implement the 

Standards and Recommendations of the Third National Guardianship Summit,” National Academy of Elder Law 

Attorneys Journal 12, no. 33 (2016): 33–55.

133 Unif. Guardianship and Protective Proceedings Act Prefatory Note (Nat’l Conference of Comm’rs on Unif. 

State Laws 2017).

134 Cathy Free and Nicole Weisensee Egan, “Woman with Down Syndrome Fights for Her Freedom - 

and Wins,” People Magazine, March 7, 2014, accessed January 24, 2018, http://people.com/humaninterest/woman-with-down-syndrome-fights-for-her-freedom-and-wins/; Theresa Vargas, “Virginia 

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accessed January 24, 2018, https://www.washingtonpost.com/local/virginia-woman-with-downsyndrome-becomes-hero-to-the-disabled/2013/08/17/0da21766-062e-11e3-a07f-49ddc7417125_story.

html?utm_term=.f39da4150d5d; Don Dahler, “Woman with Down Syndrome Becomes Icon for 

Disabled,” CBS News, November 30, 2013, accessed January 24, 2018, http://www.cbsnews.com/news/

woman-with-down-syndrome-becomes-icon-for-disabled/.

135 Jenny Hatch, “My Story,” Inclusion 3, no. 1 (2015): 34.

136 Ross v. Hatch, No. CWF120000426P-03 (Va. Cir. Ct. Aug. 2, 2013); Jenny Hatch, Samantha A. Crane, and 

Jonathan G. Martinis, “Unjustified Isolation Is Discrimination: The Olmstead Case Against Overbroad and 

Undue Organizational and Public Guardianship,” Inclusion 3, no. 2 (2015): 66.

184 National Council on Disability
137 Andy Fox, “Special Report: Justice for Jenny,” WAVY, November 3, 2016, accessed January 24, 2018, http://

wavy.com/2016/11/03/special-report-justice-for-jenny/.

138 Jasmine E. Harris, “Processing Disability,” American University Law Review 64 (2015): 514.

139 Human Services Research Institute, Supported Decision Making: A Collaborative Approach—Pilot Evaluation 

Year 1 Report, accessed January 24, 2018, http://supporteddecisions.org/wp-content/uploads/2015/04/SDMEvaluation-Report-Year-1_HSRI-2015.pdf.

140 University of Texas School of Law, Texas Law INCLUDE Project, accessed January 24, 2018, https://law.

utexas.edu/probono/opportunities/texas-law-include-project/.

141 New York State Developmental Disabilities Planning Council, Supported Decision Making, accessed January 

24, 2018, https://ddpc.ny.gov/supported-decision-making-0.

142 Tex. Estates Code § 1002.0015.

143 Sally Hurme and Erica Wood, “Introduction,” Utah Law Review, no. 3 (2012): 1162.

144 U.S. Congress, 2017, Examining the Social Security Administration’s Representative Payee Program: Who 

Provides Help?: Hearings Before the Committee on Ways and Means, Subcommittees on Oversight and 

Social Security, 115th cong., 1st sess., (statement of Brenda K. Uekert), accessed J January 24, 2018, https://

waysandmeans.house.gov/wp-content/uploads/2017/03/20170322SS-Testimony-Uekert.pdf.

145 Brenda K. Uekert and Richard Van Duizend, “Adult Guardianships: A ‘Best Guess’ National Estimate and the 

Momentum of Reform,” National Center for State Courts (2011): 108, accessed January 24, 2018, http://ncsc.

contentdm.oclc.org/cdm/ref/collection/ctadmin/id/1846.

146 Center for Elders and the Courts, Adult Guardianship Court Data and Issues Results from an Online Survey, 

14, March 2, 2010, accessed June 30, 2017, http://aja.ncsc.dni.us/pdfs/GuardianshipSurveyReport_FINAL.pdf

147 Naomi Karp and Erica Wood, Choosing Home for Someone Else: Guardian Decisions on Long-Term Services 

and Supports, 1, August 2013, accessed January 24, 2018, http://www.aarp.org/content/dam/aarp/research/

public_policy_institute/cons_prot/2013/guardian-decisions-on-ltss-report-AARP-ppi-cons-prot.pdf.

148 United States Government Accountability Office, Better Information Needed on Nursing Assistants, Home 

Health Aides, and Other Direct Care Workers, 1, August 2016, accessed January 24, 2018, https://www.gao.

gov/assets/680/679100.pdf.

149 Court Statistics Project, Caseload Highlights, the Need for Improved Guardianship Data. Accessed January 25, 

2018, http://www.courtstatistics.org/~/media/Microsites/Files/CSP/Highlights/15_2_Adult_Guardianship_Data.ashx.

150 Administrative Conference of the United States, SSA Representative Payee: Survey of State Guardianship Laws 

and Court Practices, 5, December 24, 2014, accessed January 24, 2018, https://www.acus.gov/sites/default/

files/documents/SSA%2520Rep%2520Payee_State%2520Laws%2520and%2520Court%2520Practices_

FINAL.pdf.

151 Center for Elders and the Courts, Adult Guardianship Court Data and Issues Results from an Online Survey, 

14, March 2, 2010, accessed June 30, 2017, http://aja.ncsc.dni.us/pdfs/GuardianshipSurveyReport_FINAL.pdf

152 Ibid., 5.

153 Jean Callahan, Raquel Malina Romanick, and Angela Ghesquiere, “Guardianship Proceedings in New York 

State: Findings and Recommendations,” Bifocal 37, no. 4. (March/April 2016): 85, accessed January 24, 2018, 

https://www.americanbar.org/content/dam/aba/publications/bifocal/BIFOCALMar-Apr2016.authcheckdam.pdf.

154 Texas Office of Court Administration, Texas Guardianship Cases: Improving Court Processes and Monitoring 

Practices in Texas Courts, 3, accessed January 24, 2018, http://www.txcourts.gov/media/1073478/

guardianship-study-20150303.pdf.

155 Indiana Adult Guardianship State Task Force, Who’s Overseeing the Overseers? A Report on the State of Adult 

Guardianship in Indiana, 1, February 2012, accessed January 24, 2018, https://www.in.gov/judiciary/admin/

files/ad-guard-2012-full-report.pdf.

156 Nevada Courts, “Conservatorship Accountability Project (CAP) Aims to Improve Nevada’s Guardianship 

Courts,” January 22, 2016, accessed January 24, 2018, http://nvcourts.gov/Supreme/News/Conservatorship_

Accountability_Project_(CAP)_Aims_to__Improve_Nevada%E2%80%99s_Guardianship_Courts/.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 185
157 United States Government Accountability Office, Elder Abuse: The Extent of Abuse by Guardians Is Unknown, 

but Some Measures Exist to Help Protect Older Adults, November 2016, accessed January 24, 2018, https://

www.gao.gov/assets/690/681088.pdf.

158 United States Government Accountability Office, Guardianships: Cases of Financial Exploitation, Neglect, and 

Abuse of Seniors, September 2010, accessed January 24, 2018, https://www.gao.gov/assets/320/310741.pdf.

159 Ibid at 7.

160 Elder Abuse Prevention and Prosecution Act, 115 P.L. 70 (2017).

161 Patrick Michels, Who Guards the Guardians?, accessed January 24, 2018, https://www.texasobserver.org/

texas-guardianship-abuse/.

162 Colton Lochhead, “Grand Jury Indicts Nevada Guardian on More Than 200 Charges,” Las 

Vegas Review-Journal, accessed January 24, 2018, https://www.reviewjournal.com/crime/

grand-jury-indicts-nevada-guardian-on-more-than-200-charges/.

163 Rachel Aviv, “How the Elderly Lose Their Rights,” The New Yorker, accessed January 24, 2018, https://www.

newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights.

164 Uekert et. al., “Conservator Exploitation Summary Research Reports,” National Center for State Courts, 

National Forum on Financial Exploitation by Conservators Working Paper (Draft), page 20.

165 Mark B. Heffner, “From Idiots and Lunatics to Incapacitated Persons and Respondents,” Roger Williams Law 

Review 21 (Summer 2016): 554.

166 Ibid.

167 Scott J. Shackelford and Lawrence M. Friedman, “Legally Incompetent: A Research Note,” American Journal 

of Legal History 49 (2007): 321.

168 Nancy J. Knauer, “Defining Capacity: Balancing the Competing Interests of Autonomy and Need,” Temple 

Political and Civil Rights Law Review 12 (Spring 2003): 325.

169 American Bar Association Commission on Law and Aging and American Psychological Association, 

Assessment of Older Adults with Diminished Capacity: A Handbook for Lawyers, 7, accessed January 24, 

2018, http://www.americanbar.org/content/dam/aba/administrative/law_aging/2012_aging_capacity_hbk_ch2.

authcheckdam.pdf.

170 Margaret Isabel Hall, “Mental Capacity in the (Civil) Law: Capacity, Autonomy, and Vulnerability,” McGill Law 

Review 58, no. 1 (2012): 64.

171 Ibid., 61.

172 Joel Feinberg, The Moral Limits of Criminal Law Volume 3: Harm to Self (Oxford: Oxford University Press, 

1986), 54.

173 Thomas Jefferson, Original draft of the Declaration of Independence, 1776.

174 A.P. Herbert, Misleading Cases in the Common Law (London: Methuen, 1927).

175 John Stuart Mill, Essays on Some Unsettled Questions of Political Economy (London: Longmans, Green, 

Reader, and Dyer, 1874).

176 Ibid; Alain Samson, An Introduction to Behavioral Economics, accessed January 24, 2018, https://www.

behavioraleconomics.com/introduction-to-be/.

177 Binyamin Appelbaum, “Nobel in Economics Is Awarded to Richard Thaler,” The New York Times, accessed 

January 24, 2018, https://www.nytimes.com/2017/10/09/business/nobel-economics-richard-thaler.html?_r=0.

178 Ohio Rev. Code Ann. § 2111.02 (West 2017); Colo. Rev. Stat. § 15-14-311 (West 2017h).

179 American Bar Association Commission on Law and Aging, Representation and Investigation in Guardianship 

Proceedings, accessed January 24, 2018, http://www.americanbar.org/content/dam/aba/administrative/law_

aging/chartrepresentationandinvestigation.authcheckdam.pdf.

180 Shen v. Parkes, 100 So. 3d 1189 * (Fla. Dist. Ct. 2012).

181 Md. R Guard and Fiduciaries Rule 10-202 (2016).

182 Daubert v. Merrell Dow Pharm., Inc., 509 U.S. 579, 589 (1993).

186 National Council on Disability
183 Lawrence A. Frolik, “Science, Common Sense, and the Determination of Mental Capacity,” 5 Psych. Pub. Pol. 

and L. 41, 56.

184 Lawrence J. Markson, et al., “Physician Assessment of Patient Competence,” Journal of the American 

Geriatrics Society 42 (1994): 1076–1078.

185 Lawrence A. Frolik, “Promoting Judicial Acceptance and Use of Limited Guardianship,” Stetson Law Review

31 (2002): 741; A. Frank Johns, “Person-Centered Planning in Guardianship: A Little Hope for the Future,” 

Utah Law Review, no. 3 (2012); Jalayne Arias, “A Time to Step In: Legal Mechanisms for Protecting Those with 

Declining Capacity,” American Journal of Law and Medicine 39 (2013): 148.

186 Fla. Stat. § 744.331 (2017). Ky. Rev. Stat. Ann. § 387.540 (West 2016).

187 Md. R Guard and Fiduciaries Rule 10-202 (2016).

188 Ala. Code § 26-2A-102 (2017); Idaho Code § 15-5-303 (2017); Mich. Comp. Laws § 330.1612 (2017).

189 Colo. Rev. Stat. § 15-14-306 (2017).

190 Lawrence A. Frolik, “Science, Common Sense, and the Determination of Mental Capacity,” Psychology, Public 

Policy, and Law 5 (1999): 42.

191 Ben A. Rich, “Medical Paternalism v. Respect for Patient Autonomy: The More Things Change the More They 

Stay the Same,” Michigan State University Journal of Medicine and Law 10 (2006): 98.

192 Jalayne J. Arias, “A Time to Step In: Legal Mechanisms for Protecting Those with Declining Capacity,” 

American Journal of Law and Medicine 39 (2013): 134.

193 Latha Velayudhan, et al., “Review of Brief Cognitive Tests for Patients with Suspected Dementia,” International 

Psychogeriatrics 26, no. 8: 1247–1262, doi: 10.1017/S1041610214000416.

194 Lawrence A. Frolik and Alison M. Barns, Elder Law: Cases and Materials, 6th ed. (New Providence, NJ: 

LexisNexis, 2015).

195 Ibid.

196 Marshall B. Kapp and Douglas Mossman, “Measuring Decisional Capacity: Cautions on the Construction of a 

‘Capacimeter,’” Psychology, Public Policy, and Law 2 (1996): 73.

197 Robert P. Roca, “Determining Decisional Capacity: A Medical Perspective,” Fordham Law Review 62 (1994): 

1182–1183.

198 Angela Juby, Shirly Tench, and Victoria Baker, “The Value of Clock Drawing in Identifying Executive Cognitive 

Dysfunction in People with a Normal Mini-Mental State Examination Score,” Canadian Medical Association 

Journal 167, no.8 (2002): 859–864.

199 Marshall B. Kapp and Douglas Mossman, “Measuring Decisional Capacity: Cautions on the Construction of a 

‘Capacimeter,’” Psychology, Public Policy, and Law 2 (1996): 73.

200 American Psychological Association, ABA/APA Assessment of Capacity in Older Adults, accessed January 24, 

2018, http://www.apa.org/pi/aging/programs/assessment/index.aspx.

201 Jennifer Moye and Aanand Naik, “Preserving Rights for Individuals Facing Guardianship,” Journal of the 

American Medical Association 305, no. 9 (2011): 937.

202 Ibid.

203 American Bar Association Commission on Law and Aging and American Psychological Association, 

Assessment of Older Adults with Diminished Capacity: A Handbook for Lawyers, 7, accessed January 24, 

2018, http://www.americanbar.org/content/dam/aba/administrative/law_aging/2012_aging_capacity_hbk_ch2.

authcheckdam.pdf.

204 Dorothy Millar, “Addition to Transition Assessment Resources: A Template for Determining the Use of 

Guardianship Alternatives for Students who have Intellectual Disability,” Education and Training in Autism and 

Developmental Disabilities 49, no. 2 (2014): 171–188.

205 Jenica Cassidy, “Restoration of Rights in the Termination of Adult Guardianship,” Elder Law Journal 23, no. 1 

(2015): 103.

206 Glenna Goldis, “When Family Courts Shun Adversarialism,” University of California at Davis Journal of Juvenile 

Law and Policy 18 (Summer 2014): 198.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 187
207 Lawrence A. Frolik, “Promoting Judicial Acceptance and Use of Limited Guardianship,” Stetson Law Review

31 (Spring 2002): 735.

208 Israel Doron and Ann M. Soden, Beyond Elder Law: New Directions in Law and Aging (2012).

209 CRPD Article 12.

210 Charles P. Sabatino and Erica Wood, “The Conceptualization of Capacity of Older Persons in Western Law,” in

Beyond Elder Law: New Directions in Law and Aging, 35, 36 (Israel Doron & Ann Snoden eds., 2012).

211 Lauren B. Lisi, Anne Burns, and Kathleen Lussenden, National Study of Guardianship Systems: Findings and 

Recommendations (Ann Arbor, MI: Center for Social Gerontology, 1994).

212 Utah State Courts Ad Hoc Committee on Probate Law and Procedure, Final Report to the Judicial Council, 

preface, February 23, 2009, accessed January 24, 2018, https://www.utcourts.gov/committees/adhocprobate/

Guardian.Conservator.Report.pdf.

213 Elaine Jaryik and Lois M. Collins, “Gray Area: Who Should Make Choices for the Elderly?” Deseret News 

(Salt Lake City, UT), November 24, 2008, accessed January 24, 2018, http://www.deseretnews.com/

article/705265008/Who-should-make-choices-for-the-elderly.html?pg=all.

214 Utah State Courts Ad Hoc Committee on Probate Law and Procedure, Final Report to the Judicial Council, 

4, February 23, 2009, accessed January 24, 2018, https://www.utcourts.gov/committees/adhocprobate/

Guardian.Conservator.Report.pdf.

215 See University Legal Services, Time for Change: A Call to Reform the District of Columbia’s Guardianship 

System, March 10, 2014, accessed January 24, 2018, http://www.uls-dc.org/Time%20for%20Change.pdf

(finding the DC legal system provides no safeguards for ensuring alternatives to guardianship are explored 

prior to appointment; the court rarely assigns guardians with limited powers; there is no proscribed format 

for clinical assessments; people alleged to be incapacitated are rarely granted meaningful participation in 

the judicial proceedings; the quality of legal representation is pre and post appointment proceedings is poor, 

attorneys regularly represent best interests rather than expressed interests of their clients).

216 Kenneth C. Dudley and R. Turner Goins, “Guardianship Capacity Evaluations of Older Adults: Comparing 

Current Practice to Legal Standards in Two States,” Journal of Aging and Social Policy 15, no. 1 (2003): 97–115, 

doi: 10.1300/J031v15n01_06; Jennifer Moye, et al., “Clinical Evidence in Guardianship of Older Adults is 

Inadequate: Findings from a Tri-State Study,” Gerontologist 47 (2007): 604–612. doi: 10.1093/geron/47.5.604; 

Moye and Naik, “Preserving Rights for Individuals Facing Guardianship,” 936.

217 Salzman, “Rethinking Guardianship (Again): Substituted Decision Making As a Violation of the Integration 

Mandate of Title II of the Americans with Disabilities Act,” 175–177; Arias, “A Time to Step In: Legal 

Mechanisms for Protecting Those with Declining Capacity,” 158–159.

218 Dennis Romboy, “ACLU Sues Utah over Disabled People’s Right to a Layer in Guardianship Cases,” Deseret 

News, accessed January 24, 2018, http://www.deseretnews.com/article/865684409/ACLU-sues-Utah-overdisabled-peoples-right-to-a-lawyer-in-guardianship-cases.html.

219 Brenda K. Uekert and Richard Van Duizend, Adult Guardianships: A “Best Guess” National Estimate and the 

Momentum for Reform, in National Center for State Courts, Future Trends in State Courts 2011: A Special 

Focus on Access to Justice, 109 (2011).

220 American Bar Association Commission on Law and Aging, Representation and Investigation in Guardianship 

Proceedings, chart (2015), accessed January 24, 2018, http://www.americanbar.org/content/dam/aba/

administrative/law_aging/chartrepresentationandinvestigation.authcheckdam.pdf.

221 Salzman, “Rethinking Guardianship (Again): Substituted Decision Making As a Violation of the Integration 

Mandate of Title II of the Americans with Disabilities Act,” 174; Teaster, et al., “Public Guardianship After 

25 Years: In the Best Interest of Incapacitated People?,” 219; Frolik, “Promoting Judicial Acceptance and Use 

of Limited Guardianship,” 740–744.

222 Salzman, “New Perspectives on Guardians and Mental Illness: Guardianship for Persons with Mental 

Illness—A Legal and Appropriate Alternative?,” 305.

223 Frolik, “Promoting Judicial Acceptance and Use of Limited Guardianship,” 735–755.

188 National Council on Disability
224 Salzman, “Rethinking Guardianship (Again): Substituted Decision Making As a Violation of the Integration 

Mandate of Title II of the Americans with Disabilities Act,” 174–175; Frolik, “Guardianship Reform: When the 

Best Is the Enemy of the Good,” 352–353.

225 National Council on Disability, Rising Expectations: The Developmental Disabilities Act Revisited, Feb. 14, 

2011, accessed January 24, 2018, https://ncd.gov/publications/2011/Feb142011#toc6.

226 Karen Andreasian, et. al., “Revisiting S.C.P.A. 17-A: Guardianship for People with Intellectual and 

Developmental Disabilities,” CUNY Law Review, no. 18 (2015): 287, 288.

227 Ibid.

228 F.S. 393.12.

229 National Resource Center for Supported Decision-Making, Ryan King - Updated, accessed January 24, 

2018, http://supporteddecisionmaking.org/impact-stories/ryan-king-updated. Quality Trust for Individuals with 

Disabilities, The Burton Blatt Institute, and The National Resource Center for Supported Decision-Making, 

Press Release: Freedom for Ryan King, accessed March 3, 2018, http://www.supporteddecisionmaking.org/

node/427.

230 C. E. Rood, A. Kanter, and J. Causton, “Presumption of incompetence: The systematic assignment of 

guardianship within the transition process,” Research and Practice for Persons with Severe Disabilities 39,

no. 4 (2014): 319–328.

231 Dorothy Squatrito Millar, “Age of Majority, Transfer of Rights and Guardianship: Considerations for Families and 

Educators,” Education and Training in Developmental Disabilities 38, no. 4, Special Conference Issue Research 

to Practice (December 2003): 378–397.

232 Karen Andreasian, et. al., “Revisiting S.C.P.A. 17-A: Guardianship for People with Intellectual and 

Developmental Disabilities,” CUNY Law Review, no. 18 (2015): 287, 319.

233 Matt Jameson, et al., “Guardianship and the Potential of Supported Decision Making with Individuals with 

Disabilities,” Research and Practice for Persons with Severe Disabilities 40, no. 1 (March 1, 2015): 36–51.

234 Workforce Investment Opportunity Act, P.L. 113-128, 128 Stat 1425 (2014).

235 Office of the State Superintendent of Education, Education Decision-Making & Transfer of Rights, accessed 

January 24, 2018, https://osse.dc.gov/service/education-decision-making.

236 National Resource Center for Supported Decision Making, Understanding My IEP, accessed January 24, 

2018, http://supporteddecisionmaking.org/legal-resource/understanding-my-iep.

237 Family Voices of Wisconsin, Assisted Decision Making: What Parents of Transition Age Youth Need to Know, 

accessed January 24, 2018, http://www.familyvoicesofwisconsin.com/wp-content/uploads/2015/04/AssistedDecision-Making-Fact-Sheet-New.pdf.

238 Florida Developmental Disabilities Council, Inc., Legal and Reference Resources, accessed January 24, 2018, 

http://www.fddc.org/node/2890.

239 FSGA Legislative Committee, White Paper on Guardian Compensation, accessed January 24, 2018, 

http://www.guardianassociation.org/Resources/Documents/White%20Paper%20on%20Guardian%20

Compensation%207%2022%2013.pdf.

240 Pamela B. Teaster, Erica F. Wood, Winsor C. Schmidt, Jr. and Susan A. Lawrence, Public Guardianship After 

25 Years: In The Best Interests Of Incapacitated People, 94 (A.B.A. 2007).

241 Ibid., 98.

242 FSGA Legislative Committee, White Paper on Guardian Compensation, accessed January 24, 2018, 

http://www.guardianassociation.org/Resources/Documents/White%20Paper%20on%20Guardian%20

Compensation%207%2022%2013.pdf.

243 Symposium: Third National Guardianship Summit: Standards of Excellence: Standards for Guardian Fees, 

2012 Utah L. Rev. 1575, 1583, accessed January 24, 2018, https://advance.lexis.com/api/document/collection/

analytical-materials/id/57KH-JXP0-00CW-50B2-00000-00?page=1583&reporter=8440&cite=2012%20

Utah%20L.%20Rev.%201575&context=1000516.

244 Fla. Stat. § 744.2001. (2017).

245 Elder Abuse Prevention and Prosecution Act, 115 P.L. 70 (2017).

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 189
246 Mary Joy Quinn, Guardianships of Adults: Achieving Justice, Autonomy, and Safety (New York, NY: Springer 

Publishing. Co., 2005), 17.

247 Michael L. Perlin, et al., Competence in the Law: From Legal Theory to Clinical Application (Hoboken, NJ: 

John Wiley & Sons, 2008), 246.

248 Roger J. Stancliffe, et al., “Substitute decision-making and personal control: Implications for selfdetermination,” Mental Retardation 38, no. 5 (October 1, 2000): 407.

249 Kristin Booth Glen, Supported Decision-Making and the Human Right of Legal Capacity, Inclusion 3, no. 1 

(March 2015):1, 3–4.

250 A. Frank Johns, “Person-Centered Planning in Guardianship: A Little Hope for the Future,” Utah Law Review, 

no. 3 (2012): 1543.

251 Ibid.

252 Leslie Salzman, “Guardianship for Persons with Mental Illness—A Legal and Appropriate Alternative?,” Saint 

Louis University Journal of Health Law & Policy 4 (2011): 289–293.

253 Edward L. Deci, Intrinsic Motivation (Plenum Publishing, 1975), 208; B.J. Winick, “The Side-Effects of 

Incompetency Labeling and the Implications for Mental-Health Law,” Psychology Public Policy and Law 1 

(1995): 21; Jennifer L. Wright, “Guardianship for Your Own Good: Improving the Well-Being of Respondents 

and Wards in the USA,” International Journal of Law & Psychiatry 33 (2010): 354.

254 Leslie Salzman, “Guardianship for Persons with Mental Illness—A Legal and Appropriate Alternative?,” Saint 

Louis University Journal of Health Law & Policy 4 (2011): 283.

255 United States Government Accountability Office, Elder Abuse: The Extent of Abuse by Guardians Is Unknown, 

but Some Measures Exist to Help Protect Older Adults, 6, November 2016, accessed January 24, 2018, 

https://www.gao.gov/assets/690/681088.pdf; United States Government Accountability Office, Guardianships: 

Cases of Financial Exploitation, Neglect, and Abuse of Seniors, September 2010, accessed January 24, 2018, 

https://www.gao.gov/assets/320/310741.pdf.

256 Ibid., 7.

257 Ibid., 9.

258 United States Government Accountability Office, Elder Abuse: The Extent of Abuse by Guardians Is Unknown, 

but Some Measures Exist to Help Protect Older Adults, 12–14, November 2016, accessed January 24, 2018, 

https://www.gao.gov/assets/690/681088.pdf.

259 U.S. Congress, 2016, Trust Betrayed: Financial Abuse of Older Americans by Guardians and Others in Power 

Hearing before the Senate Special Committee on Aging, 115th cong, accessed January 29, 2018, https://www.

aging.senate.gov/hearings/trust-betrayed_financial-abuse-of-older-americans-by-guardians-and-others-in-power.

260 National Council on Disability, Experience of Voters with Disabilities in the 2012 Election Cycle, 81, October 

24, 2013, accessed January 24, 2018, https://ncd.gov/rawmedia_repository/8%2028%20HAVA%20

Formatted%20KJ%20V5%20508.pdf.

261 Rabia S. Belt, Mental Disability and the Right to Vote (Ph.D. diss., University of Michigan, 2015): 4.

262 Associated Press, “Restored Voting Rights Sought for Disabled People,” CBS News, August 23, 2016, 

accessed January 24, 2018, http://www.cbsnews.com/news/restored-voting-rights-sought-for-disabled-people/.

263 Caroline Modarressy-Tehrani, “One Disabled Man’s Fight to Restore His Right to Vote,” Vice News video, 4:51, 

October 30, 2016, accessed January 24, 2018, https://news.vice.com/story/disability-activist-voting-rights.

264 Bazelon Center for Mental Health Law, It’s Your Right: A Guide to the Voting Rights of People with Mental 

Disabilities, 17, accessed January 24, 2018, http://www.bazelon.org/wp-content/uploads/2017/01/voting-rightsguide-2016.pdf.

265 Ibid.

266 52 U.S.C. § 10101 (2017).

267 Rabia Belt, “Contemporary Voting Rights Controversies Through the Lens of Disability,” Stanford Law Review

68: 1506.

190 National Council on Disability
268 Katharine Quarmby, “Disabled and Fighting for a Sex Life,” The Atlantic, March 11, 2015, accessed January 24, 

2018, https://www.theatlantic.com/health/archive/2015/03/sex-and-disability/386866/.

269 Robert Dinerstein, Sexual Expression for Adults with Disabilities: The Role of Guardianship, accessed January 

24, 2018, https://ici.umn.edu/products/impact/232/10.html.

270 American Association on Intellectual and Developmental Disabilities, “Sexuality,” American Association on 

Intellectual and Developmental Disabilities, accessed January 24, 2018, https://aaidd.org/news-policy/policy/

position-statements/sexuality#.WXDCDxXyvct.

271 National Guardianship Association, Standards of Practice (2013), 10, accessed July 20, 2017, https://www.

guardianship.org/wp-content/uploads/2017/07/NGA-Standards-with-Summit-Revisions-2017.pdf.

272 Erika Harrell, Crime against Persons with Disabilities, 2009–2015—Statistical Tables (Bureau of Justice 

Statistics, 2017), 4, accessed January 24, 2018, https://www.bjs.gov/content/pub/pdf/capd0915st.pdf.

273 National Public Radio, “Abused and Betrayed,” Special series, accessed January 24, 2018, https://www.npr.

org/series/575502633/abused-and-betrayed.

274 National Council on Disability, Foreign Policy and Disability: Legislative Strategies and Civil Rights Protections 

to Ensure Inclusion of People with Disabilities, 16A, September 9, 2003, accessed January 24, 2018, https://

www.ncd.gov/rawmedia_repository/38402a3d_fead_4182_84cb_7558dd07e190.pdf.

275 In re Guardianship of Atkins, 868 N.E.2d 878, 880-90 (Ind. App. 2007).

276 Aaron Smith and Monica Anderson, “5 Facts About Online Dating,” Pew Research Center, February 29, 2016, 

accessed January 24, 2018, http://www.pewresearch.org/fact-tank/2016/02/29/5-facts-about-online-dating/.

277 Planned Parenthood v. Casey, 505 U.S. 833, 851 (1992) (holding that the rights to personal dignity and 

autonomy are central to the liberty protected by the Fourteenth Amendment).

278 See Cleburne v. Cleburne Living Ctr., 473 U.S. 432, 447 (holding that individuals with intellectual disabilities 

retain their substantive constitutional rights).

279 Alexander A. Boni-Saenz, “Sexuality and Incapacity,” Ohio State Law Journal 76 (2015): 1208.

280 National Guardianship Association, Standards of Practice (2013), 10, accessed July 20, 2017, https://www.

guardianship.org/wp-content/uploads/2017/07/NGA-Standards-with-Summit-Revisions-2017.pdf.

281 Sally Balch Hurme, Crossing State Lines: Issues and Solutions in Interstate Guardianship, 37 Stetson L. 

Rev. 87.

282 Uniform Law Commission, Adult Guardianship and Protective Proceedings Jurisdiction Act, accessed January 

24, 2018, http://www.uniformlaws.org/Act.aspx?title=Adult%20Guardianship%20and%20Protective%20

Proceedings%20Jurisdiction%20Act.

283 Reveal from The Center for Investigative Reporting, A Mountain of Misconduct, accessed January 24, 2018, 

https://www.revealnews.org/episodes/a-mountain-of-misconduct/.

284 U.S. Congress, 1992, Rehabilitation Facilities for People with Head Injuries Hearing before the Subcom on 

Human Resources and Intergovernmental Relations, House Committee on Government Operations, 102nd cong.

285 Reveal from The Center for Investigative Reporting, A Mountain of Misconduct, accessed January 24, 2018, 

https://www.revealnews.org/episodes/a-mountain-of-misconduct/.

286 Jenica Cassidy, Pamela Teaster, and Erica Wood, Restoration of Rights in Adult Guardianship: Research & 

Recommendations (2017), 6, accessed January 29, 2018, https://www.americanbar.org/content/dam/aba/

administrative/law_aging/restoration%20report.authcheckdam.pdf.

287 Ibid., 9.

288 Ibid., 53

289 Ibid., 55.

290 Ibid.

291 Ibid., 51.

292 Kentucky P&A, Publications, accessed January 24, 2018, http://www.kypa.net/publications.html.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 191
293 Jenica Cassidy, Pamela Teaster, and Erica Wood, Restoration of Rights in Adult Guardianship, accessed 

January 29, 2018, https://www.americanbar.org/content/dam/aba/administrative/law_aging/restoration%20

report.authcheckdam.pdf.

294 Jenica Cassidy, “State Statutory Authority for Restoration of Rights in Termination of Adult 

Guardianship,” Bifocal 34, no. 6 (July/August 2013): 125, accessed January 24, 2018, https://www.

americanbar.org/content/dam/aba/publications/bifocal/BIFOCALJuly-August2013.authcheckdam.pdf.

295 Jenica Cassidy, Pamela Teaster, and Erica Wood, Restoration of Rights in Adult Guardianship, accessed 

January 29, 2018, https://www.americanbar.org/content/dam/aba/administrative/law_aging/restoration%20

report.authcheckdam.pdf.

296 Olmstead v. L.C. ex rel Zimring, 527 U.S. 581, 581-82, 607 (1999).

297 Leslie Salzman, “Rethinking Guardianship (Again): Substituted Decision Making as a Violation of the 

Integration Mandate of Title II of the Americans with Disabilities Act,” University of Colorado Law Review 81 

(Winter 2010): 245.

298 Am. Bar Ass’n, Practical Tool for Lawyers: Steps In Supported Decision Making (2016), accessed January 24, 

2018, http://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice/practical_tool.html.

299 TSYS, 2016 U.S. Consumer Payment Study, 12, 2016, accessed January 24, 2018, http://www.tsys.com/

Assets/TSYS/downloads/rs_2016-us-consumer-payment-study.pdf.

300 National Disability Institute, Banking Status and Financial Behaviors of Adults with Disabilities: Findings from 

the FDIC National Survey of Unbanked and Underbanked Households, 2, April 30, 2015, accessed January 

24, 2018, https://www.realeconomicimpact.org/data/files/reports/ndi_banking_status_financial_behaviors_

report_2015.pdf.

301 Board of Governors of the Federal Reserve System, Commodity Futures Trading Commission, Consumer 

Financial Protection Bureau, Federal Deposit Insurance Corporation, Federal Trade Commission, National 

Credit Union Administration, Office of the Comptroller of the Currency, Securities and Exchange Commission, 

Interagency Guidance on Privacy Laws and Reporting Financial Abuse of Older Adults, September 24, 2013, 

accessed January 24, 2018, http://files.consumerfinance.gov/f/201309_cfpb_elder-abuse-guidance.pdf.

302 Ibid., 4.

303 Nina Kohn, Jeremy Blumenthal, and Amy Campbell, “Supported Decision-Making,” 117; Marshall Kapp, 

“Health Care Decision Making,” in Aging, Rights and Quality of Life: Prospects for Older People with 

Developmental Disabilities, edited by Stanley Herr (Baltimore: Paul H. Brookes Publishing Company, 1999), 

45, 53.

304 Sherry Rudy, “Letter from the Chair: Licenses to Steal,” Elder Law Section and Committee Newsletter, Illinois 

State Bar Association, 10, no. 3 (March 2005).

305 Linda S. Whitton, “Durable Powers as an Alternative to Guardianship: Lessons We Have Learned,” 37 Stetson 

L. Rev. 7.

306 Lori A. Stiegel & Ellen VanCleave Klem, “Power of Attorney Abuse: What States Can Do About It,” AARP Pub. 

Pol’y Inst. 5 (Nov. 2008), accessed January 24, 2018, http://assets.aarp.org/rgcenter/consume/2008_17_poa.

pdf.

307 Florida Developmental Disabilities Council, Inc, Lighting the Way to Guardianship and Other Decision-Making 

Alternatives: A Manual for Individuals and Families (2010), 23, accessed January 24, 2018, http://www.fddc.

org/sites/default/files/file/publications/Guardianship%20Family%20Manual_0.pdf.

308 Ibid., 24.

309 Jennifer Field, “Special Needs Trusts: Providing for Disabled Children without Sacrificing Public Benefits,” 

Journal of Juvenile Law 24 (2003–2004): 89.

310 Florida Developmental Disabilities Council, Inc., Lighting the Way to Guardianship and Other Decision-Making 

Alternatives: A Manual for Individuals and Families (2010), 71, accessed January 24, 2018, http://www.fddc.

org/sites/default/files/file/publications/Guardianship%20Family%20Manual_0.pdf.

311 GAO-13-473 SSA Representative Payee Program (May 2013).

192 National Council on Disability
312 Testimony of the Honorable Patrick P. O’Carroll, Inspector General, SSA, House Committee on Ways and 

Means, Hearing on Protecting Social Security from Waste, Fraud, and Abuse, May 18, 2016.

313 Canterbury v. Spence, 464 F.2d 772, 783 (D.C. Cir. 1972).

314 Health Insurance Portability and Accountability Act of 1996, Pub.L. No. 104–191, 110 Stat. 1936.

315 Eileen Morrison, Ethics in Health Administration: A Practical Approach for Decision Makers, 2nd ed. (Sudbury, 

MA: Jones and Bartlett, 2011), 92.

316 Ellen A. Callegary, “Guardianship and its Alternatives in the 21st Century,” Maryland Bar Journal 47 (May/June 

2014): 20–21.

317 Health care Roundtable.

318 Ibid., 4.

319 Fla. Stat. §765.401 (2017).

320 Office of Special Education And Rehabilitative Services United States Department Of Education, A Transition 

Guide to Postsecondary Education And Employment For Students And Youth With Disabilities (January 

27, 2017), accessed January 24, 2018, https://www2.ed.gov/about/offices/list/osers/transition/products/

postsecondary-transition-guide-2017.pdf.

321 Conn. Agencies Regs. § 10-76d-12 (Lexis Advance through the amendments effective July 10, 2017).

322 Piers Gooding, “Supported Decision-Making: A Rights-Based Disability Concept and its Implications for 

Mental Health Law,” Psychiatry, Psychology and The Law 20, no. 3 (2013): doi: 431-5/13218719.2012.711683 

(quoting Article 12 of the CRPD, 2006).

323 United Nations Convention on the Rights of Persons with Disabilities, Dec. 13, 2006, 2515 U.N.T.C. 3., art. 

4(1)(a)-(b).

324 Peter Blanck and Jonathan Martinis, “The Right to Make Choices: The National Resource Center for Supported 

Decision-Making,” Inclusion 3, no. 1 (2015): 26–27.

325 United Nations Convention on the Rights of Persons with Disabilities, Article 12, December 13, 2006, 

2515 U.N.T.C. 3; Piers Gooding, “Supported Decision-Making: A Rights-Based Disability Concept and its 

Implications for Mental Health Law,” Psychiatry, Psychology and The Law 20, no. 3 (2013): 431–451, doi: 

10.1080/13218719.2012.711683 (quoting Article 12 of the CRPD, 2006).

326 Cliona de Bhailis and Eilionoir Flyn, “Recognising legal capacity: Commentary and analysis of Article 12 

CRPD,” International Journal of Law in Context 12, no. 1 (2017): 6021.

327 Robert D. Dinerstein, “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of 

Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights 

Brief 19 (2012): 8–12.

328 Ibid.; Blanck and Martinis, “The Right to Make Choices,” 24–33; Quality Trust for Individuals with Disabilities, 

Burton Blatt Institute, and Council on Quality and Leadership, Supported Decision-Making: An Agenda for 

Action (2003): 1–11, accessed January 24, 2018, http://bbi.syr.edu/news_events/news/2014/02/Supported%20

Decision%20Making-2014.pdf.

329 Dinerstein, “Implementing Legal Capacity,” 10; Michael Bach, “Securing Self-Determination: Building the 

Agenda in Canada,” TASH Newsletter, June/July 1998, 7–10.

330 Blanck and Martinis, “The Right to Make Choices,” 24–33; Campanella, “Supported Decision-Making in 

Practice,” 35–39; Kristin Booth Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 

Inclusion 3, no. 1 (March 2015): 2–16; Kohn, Blumenthal, and Campbell, “Supported Decision-Making,” 

1111–1157; Bach, “Securing Self-Determination,” 7–10.

331 Michael L. Wehmeyer, Susan B. Palmer, Martin Agran, Dennis E. Mithaug, and James E. Martin, “Promoting 

Casual Agency: The Self-Determined Learning Model of Instruction,” Exceptional Children 66, no. 4 (2000): 400.

332 Yves Lachapelle, et al., “The Relationship Between Quality of Life and Self-Determination: An International 

Study,” Journal of Intellectual Disability Research 49 (2005): 740–744, doi: 10.1111/j.1365-2788.2005.00743.x; 

Michelle Schwartz and Michael Wehmeyer, “Self Determination and Positive Adult Outcomes: A Follow-Up 

Study of Youth with Mental Retardation or Learning Disabilities,” Exceptional Children 63, no. 2 (1997): 

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 193
245–255; Michael L. Wehmeyer and Susan B. Palmer, “Adult Outcomes for Students with Cognitive 

Disabilities Three-Years After High School: The Impact of Self-Determination,” Education and Training in 

Developmental Disabilities 38, no. 2 (2003): 131–144, doi: 10.1177/0022466913489733; Ishita Khemka, Linda 

Hickson, and Gillian Reynolds, “Evaluation of a Decision-Making Curriculum Designed to Empower Women 

with Mental Retardation to Resist Abuse,” American Journal on Mental Retardation 110 (2005): 193–204, doi: 

10.1352/0895-8017(2005)110<193:EOADCD>2.0.CO.

333 Michael Wehmeyer, “Self-Determination and the Education of Students with Disabilities,” Hoagies’ Gifted 

Education Page, last modified September 2002, accessed January 24, 2018, http://www.hoagiesgifted.org/

eric/e632.html.

334 Brian P. O’Connor and Robert J. Vallerand, “The Relative Effects of Actual and Experienced Autonomy on 

Motivation in Nursing Home Residents,” Canadian Journal on Aging 13 (1994): 528–538, doi: 10.1017/

S0714980800006371.

335 Mary Jane Ciccarello and Maureen Henry, “WINGS: Person-Centered Planning and Supported DecisionMaking,” Utah Bar Journal 27, no. 3 (2014): 49–50.

336 Laurie E. Powers, et al., “My Life: Effects of a Longitudinal, Randomized Study of Self-Determination 

Enhancement on the Transition Outcomes of Youth in Foster Care and Special Education,” Children and Youth 

Services Review 34, no. 11 (2012): 2179–2187, doi: 10.1016/j.childyouth.2012.07.018.

337 Shogren, et al., “Relationships Between Self-Determination and Postschool Outcomes for Youth with 

Disabilities,” 256–267; Schwartz and Wehmeyer, “Self-determination and Positive Adult Outcomes,” 245–255.

338 B.J. Winick, “The Side-Effects of Incompetency Labeling and the Implications for Mental-Health Law,” 

Psychology, Public Policy, and Law 1 (1995): 21.

339 Jennifer L. Wright, “Guardianship for Your Own Good: Improving the Well-Being of Respondents and Wards in 

the USA,” International Journal of Law & Psychiatry 33 (2010): 354.

340 Office of the Public Advocate, Systems Advocacy, A Journey Towards Autonomy? Supported Decision-Making 

in Theory and in Practice, 1–32, February 2014, accessed January 24, 2018, http://www.justice.qld.gov.

au/__data/assets/pdf_file/0005/249404/Decision-making-support-for-Queenslanders-with-impaired-capacity-Areview-of-literature-March-2014.pdf; Christina Bigby, Mary Whiteside, and Jacinta Douglas, Supporting People 

with Cognitive Disabilities in Decision Making—Processes and Dilemmas (2015), 2–3, accessed January 24, 

2018, http://hdl.handle.net/1959.9/510567.

341 Hatch, Crane, and Martinis, “Unjustified Isolation Is Discrimination: The Olmstead Case Against Overbroad 

and Undue Organizational and Public Guardianship,” 65–74; see also Salzman, “Rethinking Guardianship 

(Again): Substituted Decision Making As a Violation of the Integration Mandate of Title II of the Americans 

with Disabilities Act,” University of Colorado Law Review 81 (2010): 221–231.

342 Individuals with Disabilities Education Act, P.L. 91–230, 84 Stat. 175; Kanter, “Guardianship for Young Adults with 

Disabilities as a Violation of the Purpose of the Individuals with Disabilities Education Improvement Act,” 61.

343 Rehabilitation Act of 1973, P.L. 93–112, 87 Stat. 355; Jonathan Martinis, “‘The Right to Make Choices’: How 

Vocational Rehabilitation Can Help Young Adults with Disabilities Increase Self-Determination and Avoid 

Guardianship,” Journal of Vocational Rehabilitation 42, no. 3 (2015): 221–227.

344 Ciccarello and Henry, “WINGS: Person-Centered Planning,” 48.

345 Nina A. Kohn and Jeremy A. Blumenthal, “A Critical Assessment of Supported Decision-making for Persons 

Aging with Intellectual Disabilities,” Disability and Health Law Journal 7, no. 1 (January 2014): 541; Salzman, 

“New Perspectives on Guardians and Mental Illness,” 306.

346 Kohn and Blumenthal, “A Critical Assessment of Supported Decision-making for Persons Aging with 

Intellectual Disabilities,” 541; see also Salzman, “New Perspectives on Guardians and Mental Illness,” 309; 

Krista James and Laura Watts, Understanding the Lived Experiences of Supported Decision-Making in 

Canada: Legal Capacity, Decision-Making, and Guardianship, 8, March 2014, accessed January 24, 2018, 

http://www.lco-cdo.org/wp-content/uploads/2014/03/capacity-guardianship-commissioned-paper-ccel.pdf.

347 Carney, “Participation and Service Access Rights for People with Intellectual Disability: A Role for Law?,” 62.

194 National Council on Disability
348 Ibid.

349 Sean Burke, “Person-Centered Guardianship: How the Rise of Supported Decision-Making and PersonCentered Services Can Help Olmstead’s Promise Get Here Faster,” Mitchell Hamline Law Review 42, no. 

3 (2016): 879; Rebekah Diller, “Legal Capacity for All: What the Shift from Adult Guardianship to Supported 

Decision-Making Has to Offer Older Adults,” Fordham Urban Law Journal 43 (forthcoming 2017; on file with 

authors); but see Brake, “Supported Decision-Making in the Elder Law Practice: Promoting the Aging Client’s 

Right to Legal Capacity,” 1–9.

350 James and Watts, “Understanding the Lived Experiences of Supported Decision-Making in Canada,” 8.

351 Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 13.

352 United Nations, “From Provisions to Practice: Implementing the Convention, Legal Capacity and Supported 

Decision-Making,” in UN Handbook for Parliamentarians on the Convention on the Rights of Persons with 

Disabilities (2007), 1–110, accessed January 24, 2018, http://www.ipu.org/PDF/publications/disabilities-e.pdf.

353 Ibid.

354 Administration for Community Living, “Preserving the Right to Self-determination: Supported DecisionMaking” (January 28, 2015), accessed January 24, 2018, https://www.acl.gov/news-and-events/acl-blog/

preserving-right-self-determination-supported-decision-making.

355 United Nations, “From Provisions to Practice: Implementing the Convention, Legal Capacity and Supported 

Decision-Making,” in UN Handbook for Parliamentarians on the Convention on the Rights of Persons with 

Disabilities (2007), 1–110, accessed January 24, 2018, http://www.ipu.org/PDF/publications/disabilities-e.pdf.

356 Dinerstein, Grewal, and Martinis, “Emerging International Trends,” 442.

357 J. Matt Jameson, et al., “Guardianship and the Potential of Supported Decision Making with Individuals with 

Disabilities,” Research and Practice for Persons with Severe Disabilities 40, no. 1 (March 1, 2015): 3.

358 National Guardianship Association, “Position State on Guardianship, Surrogate Decision Making, and 

Supported Decision-Making” (May 2016), 1–2, accessed August 7, 2017, https://www.guardianship.org/wpcontent/uploads/2017/07/SDM-Position-Statement-9-20-17.pdf.

359 Johns, “Person-Centered Planning in Guardianship: A Little Hope for the Future,” 1544.

360 Convention on the Rights of Persons with Disabilities, G.A. Res. 61/106 (Dec. 12. 2006).

361 Dinerstein, Tales from a Supportive Guardianship, 53(2) Court Review: The Journal of the American Judges 

Association 25–37 (forthcoming 2017).

362 Proposed Nat’l Conference of Comm’rs on Unif. State Laws, Unif. Guardianship, Conservatorship, and other 

Protective Arrangements Act § 301(b) (June 2017 draft).

363 Dinerstein, Grewal, and Martinis, “Emerging International Trends and Practices in Guardianship Law for People 

with Disabilities,” 425; Terry Carney, “Supported Decision-Making for People with Cognitive Impairments: An 

Australian Perspective?,” Laws 4 (2015): 37–149.

364 Autistic Self Advocacy Network, “The Right to Make Choices: International Laws and Decision-Making by 

People with Disabilities,” last modified February 1, 2016, accessed January 24, 2018, http://autisticadvocacy.

org/2016/02/the-right-to-make-choices-new-resource-on-supported-decision-making/.

365 Leslie Salzman, “New Perspectives on Guardians and Mental Illness: Guardianship for Persons with Mental 

Illness—A Legal and Appropriate Alternative?,” St. Louis University Journal of Health Law & Policy 4 (2011): 

307–309.

366 Ibid.

367 Office of the Public Advocate, Australia, Supported Decision Making, accessed January 24, 2018, http://www.

opa.sa.gov.au/resources/supported_decision_making.

368 Ibid.; Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 10.

369 Dinerstein, Grewal, and Martinis, “Emerging International Trends,” 452.

370 Dinerstein, “Implementing Legal Capacity,” 9–10.

371 Ibid., 10.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 195
372 See In re Ryan King, 2003 INT 249, PIN CITE (D.C. Super. Ct. 2016); Matter of Michelle M., 2016 N.Y. Misc. 

LEXIS 2719, at *PIN CITE (Kings Cty Sur. Ct., 2016); Matter of Hytham M.G., 2016 N.Y. Misc LEXIS 2722, at 

*PIN CITE (Kings Cty. Sur. Ct. 2016); In re CC, Berkshire County Probate Court; Pittsfield, MA (November 11, 

2015, http://supporteddecisions.org/cory/); Ross v. Hatch, No. CWF120000426P-03, slip op. at 17 (Newport 

News, Va. Cir. Ct. Aug. 2, 2013)); In re Guardianship of Dameris L., 956 N.Y.S.2d 848, PIN CITE (N.Y. Cty. Sur. 

Ct. 2012); In re SCPA Article 17-A Guardianship Proceeding for Mark C.H., Ward, 906 N.Y.S.2d 419, PIN CITE 

(N.Y. Cty. Sur. Ct. 2010); In re Peery, 727 A.2d 539, 540 (Pa. 1999). See also Consent Order for M.M. (Florida, 

10/13/16, described at http://www.disabilityrightsflorida.org/podcast/story/episode_5_supported_decision_

making); In re C.B., Stipulation to Dismiss Guardianship (Superior Court, Orleans Unit, Vermont, April 11, 

2017).

373 Dinerstein, Grewal, and Martinis, “Emerging International Trends,” 455–456.

374 Tex. Est. Code Ann. § 1357.056 (West 2017).

375 Del. Code Ann. tit. 16, §§ 9401a-9410a (2017).

376 D.C. Act 20-486 (effective March 2015) (“[S]tudent[s] who ha[ve] reached 18 years of age may receive 

support . . . to aid them in their decision-making”); see also D.C. Public Schools Transfer of Rights Guidelines 

(Aug. 2013) (recognizing SDM and advancing use of an SDM Form); D.C. Mun. Regs. tit. 5-E §§ 3001, 3004 

(effective July 1, 2016) (recognizing SDM as an alternative to guardianship across all publicly funded schools in 

D.C.).

377 Md. Code Ann. Health—Gen. § 20-1601 (incorporating SDM in the medical context concerning 

nondiscrimination in access to organ transplantation).

378 H.J. Res. 190, 2014 Leg., Reg. Sess. (Va. 2014) (ordered study of SDM, which, when complete, recommended 

SDM be implemented in all service systems).

379 H.B. 900, 127th Leg., 2nd Reg. Sess. (Me. 2016) (resolving that the Probate and Trust Law Advisory 

Commission will examine SDM and make recommendations about inclusion within Probate Code, with report 

due January 15, 2017).

380 S. Res. 44 , 120th Gen. Assemb., 1st Reg. Sess. (In. 2017)

381 See, e.g., D.C. Bill 22-0154, Council Period 22 (2017) (proposing codification of a Supported Decision-Making 

Agreement form); S.B. 264, 110th Gen. Assemb., 1st Reg. Sess. (Tenn. 2017); H.B. 941, 110th Gen. Assemb., 

1st Reg. Sess. (Tenn. 2017) (proposing recognition of SDM agreements); H.B. 713, 2017 Gen. Assemb., Reg. 

Sess. (N.C. 2017) (proposing direction of legislative research commission to study supported decision-making 

as an alternative to guardianship); S.B. 748, 85th Leg. (Tex. 2017) (proposing an SDM requirement in special 

education transition planning, and was sent to the Governor May 28, 2017); H.B. 2343, 87th Leg., Reg. Sess. 

(Kan. 2017) (proposing recognition of SDM in the context of organ transplantation); H.B. 21, 149th Gen. 

Assemb., 1st Reg. Sess. (Del. 2017) (similar to the aforementioned Kansas legislation); S.B. 5447, 65th Leg., 

Reg. Sess. (Wash. 2017); H.B. 1139, 65th Leg., Reg. Sess. (Wash. 2017) (proposing a requirement that the 

public guardian administrator establish an SDM assistance program); and Assemb. B. 437, Reg. Sess. (Cal. 

2017) (proposing to define SDM within the context of a Voluntary Online At-Risk Community Network).

382 Human Services Research Institute, Supported Decision-Making Pilot: A Collaborative Approach, Pilot 

Evaluation Year 1 Report, 1-47, November 30, 2015, accessed January 24, 2018, http://supporteddecisions.

org/wp-content/uploads/2015/04/SDM-Evaluation-Report-Year-1_HSRI-2015.pdf; Glen, “Supported DecisionMaking and the Human Right of Legal Capacity,” 2–16.

383 Disability Rights Maine, SupportMyDecision.org, accessed July 18, 2017, http://supportmydecision.org/; First 

in Families of North Carolina, “Lifetime Connections,” accessed July 18, 2017, http://www.fifnc.org/programs/

connections.html (describing the work of North Carolina’s SDM coalition).

384 Glen, “Supported Decision-Making,” 8; Developmental Disabilities Planning Council, “Supported DecisionMaking,” New York State, accessed January 24, 2018, http://ddpc.ny.gov/supported-decision-making-0

(describing the New York SDM pilot program).

385 Texas Department of Aging and Disability Services, Volunteer-Supported Decision-making for People with 

Cognitive Impairments: A Report on the San Angelo Alternatives to Guardianship Project, 1–9, December 

196 National Council on Disability
2012, accessed July 18, 2017, http://www.tcdd.texas.gov/projects/grants-completed-projects/the-arc-of-sanangelo/; Texas Law INCLUDE Project, “Texas Law INCLUDE Project,” Texas Law, accessed January 24, 2018, 

https://law.utexas.edu/probono/opportunities/texas-law-include-project/.

386 Jessalyn Gustin and Jonathan Martinis, “Vermont to Change Culture of Disabilities,” Apostrophe, September 

27, 2016, accessed January 24, 2018, http://apostrophemagazine.com/vermont-change-culture-disabilities/.

387 Blanck and Martinis, “The Right to Make Choices,” 28–31.

388 See ABA Commission on Law and Aging, PRACTICAL Tool for Lawyers: Steps in Supporting Decision-Making 

and Resource Guide (2016), 1, 6, accessed January 24, 2018, http://www.americanbar.org/content/dam/aba/

administrative/law_aging/PRACTICALTool.authcheckdam.pdf.

389 See National Guardianship Association, Position Statement on Guardianship, Surrogate Decision Making, 

and Supported Decision Making, 2015, accessed July 19, 2017, https://www.guardianship.org/wp-content/

uploads/2017/07/SDM-Position-Statement-9-20-17.pdf. (“Supported decision making 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.”)

390 Social Security Advisory Board, Representative Payees: A Call to Action, March 2016, accessed January 

24, 2018, http://ssab.gov/Portals/0/OUR_WORK/REPORTS/Rep_Payees_Call_to_Action_Brief_2016.pdf

(recognizing SDM as an alternative to SSA appointment of representative payee); Advisory Committee on 

Increasing Competitive Integrated Employment for People with Disabilities, Final Report, 53–54, September 

15, 2016, accessed January 24, 2018, https://www.dol.gov/odep/topics/pdf/ACICIEID_Final_Report_9-8-16.pdf

(endorsing supported decision-making as a method of equipping people with disabilities “with the knowledge, 

skills, abilities, and tools they need to succeed . . .”).

391 See U.S. Department of Education, Office of Special Education Rehabilitation Services, A Transition Guide 

to Postsecondary Education and Employment for Students with Youth and Disabilities, 1–40, January 2017, 

accessed January 24, 2018, https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondarytransition-guide-2017.pdf (includes section on “Parental Consent, Age of Majority, Supported Decision-Making 

and Guardianship”).

392 American Bar Association Commission on Disability Rights and American Bar Association Commission 

on Law and Aging, Beyond Guardianship: Supported Decision-Making by Individuals with Intellectual 

Disabilities (2012), accessed January 24, 2018, http://www.americanbar.org/content/dam/aba/administrative/

mental_physical_disability/SDMRoundtable_Summary.authcheckdam.pdf (providing a short summary of the 

roundtable discussion).

393 Quality Trust, Supported Decision-Making, 1–11; Blanck and Martinis, “The Right to Make Choices,” 28.

394 Martinis and Gustin, “Supported Decision-Making as an Alternative to Overbroad and Undue Guardianship,” 

41–44.

395 American Bar Association Adopted by the House of Delegates, Resolution, August 14–15, 2017 accessed 

January 24, 2018, http://www.americanbar.org/content/dam/aba/directories/policy/2017_am_113.docx.

396 Uniform Law Commission, “Guardianship, Conservatorship, and Other Protective Arrangements 

Act Committee,” accessed January 24, 2018, http://www.uniformlaws.org/Committee.

aspx?title=Guardianship,%20Conservatorship,%20and%20Other%20Protective%20Arrangements%20Act.

397 Kohn, Blumenthal, and Campbell, “Supported Decision-Making,” 1111–1157; Glen, “Supported DecisionMaking and the Human Right of Legal Capacity,” 13; Burke, “Person-Centered Guardianship,” 885–886; 

Office of the Public Advocate Systems Advocacy, A Journey Towards Autonomy, 1–32; Bigby, Whiteside, and 

Douglas, Supporting People with Cognitive Disabilities in Decision Making, 2–3.

398 Pathare and Shields, “Supportive Decision-Making for Persons with Mental Illness,” 31.

399 James and Watts, “Understanding the Lived Experiences of Supported Decision-Making in Canada,” 3–81; 

Kohn, Blumenthal, and Campbell, “Supportive Decision-Making,” 1111–1157; Office of the Public Advocate 

Systems Advocacy, A Journey Towards Autonomy, 1–32; Kohn and Blumenthal, “A Critical Assessment of 

Supported Decision-making for Persons Aging with Intellectual Disabilities,” 540–543.

Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 197
400 Kohn and Blumenthal, “A Critical Assessment of Supported Decision-making for Persons Aging with 

Intellectual Disabilities,” 541.

401 Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 13.

402 Blanck and Martinis, “The Right to Make Choices,” 29.

403 Leslie Salzman, “New Perspectives on Guardians and Mental Illness: Guardianship for Persons with Mental 

Illness— A Legal and Appropriate Alternative?,” St. Louis University Journal of Health Law & Policy 4 (2011): 

310

404 Carney, “Participation and Service Access Rights for People with Intellectual Disability: A Role for Law?,” 

63; Bigby, Whiteside, and Douglas, Supporting People with Cognitive Disabilities in Decision Making, 2–3.

405 Bigby, Whiteside, and Douglas, Supporting People with Cognitive Disabilities in Decision Making, 2–3.

406 James and Watts, “Understanding the Lived Experiences of Supported Decision-Making in Canada,” 8.

407 Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 2–16.

408 Inclusion Europe, Key Elements of a System for Supported Decision-Making: Position Paper of Inclusion, 1–5, 

accessed January 24, 2018, http://inclusion-europe.eu/wp-content/uploads/2015/03/15.Position_Supported_

Decision_Making_EN.pdf (Adopted at General Assembly 2008).

409 Shih-Ning Then, “Evolution and Innovation in Guardianship Laws: Assisted Decision-Making,” Sydney Law 

Review 35 (2013): 161–162.

410 Jalayne J. Arias, “A Time to Step In: Legal Mechanisms for Protecting Those with Declining Capacity,” 

American Journal of Law and Medicine 39 (2013): 157; Glen, “Supported Decision-Making and the Human 

Right of Legal Capacity,” 11–12.

411 Ibid.

412 Then, “Evolution and Innovation in Guardianship Laws,” 165–166.

413 Carney, “Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?,” 

37–59.

414 Kohn and Blumenthal, “A Critical Assessment of Supported Decision-making for Persons Aging with 

Intellectual Disabilities,” 542; Jameson, et al., “Guardianship and Potential of Supported Decision-Making,” 

1–16.

415 CRPD Article 12.

416 Given this was a national project involving people living in various states across the country, all with variable 

consent laws, the decision was made to take a conservative approach and, when a person was determined to 

be subject to guardianship, obtain the guardian’s approval for the interview to move forward. There also were 

two occasions where the guardians terminated the interview after it started, so those interviews were not 

able to be used as part of this report.

417 Please note that there were cases in which a participant was identified to participate as a representative 

of one category and, during the course of the interview, it became apparent they actually fit into multiple 

categories (e.g., a professional who was also a family member of a person with a disability).

418 The law student interviewers included Allison Mazzei, Myra Reyes, Abigail Silverman, and Emily Wolfford.

198 National Council on Disability
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004