Turning Rights Into Reality:

How Guardianship and Alternatives Impact the Autonomy of

People with Intellectual and Developmental Disabilities

National Council on Disability

June 10, 2019
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Turning Rights Into Reality: How Guardianship and Alternatives Impact the Autonomy of People 

with Intellectual and Developmental Disabilities

National Council on Disability, June 10, 2019

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

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 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.

Letter of Transmittal 

June 10, 2019

President Donald J. Trump

The White House

1600 Pennsylvania Ave. NW

Washington DC 20500

Dear Mr. President: 

The National Council on Disability (NCD) is pleased to submit this report, Turning Rights Into 

Reality: How Guardianship and Alternatives Impact the Autonomy of People with Intellectual 

and Developmental Disabilities as a follow-up to a report that was completed last year, Beyond 

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

Disabilities, which offers policy research and recommendations for the consideration of your 

Administration and Congress. This report provides a more in-depth examination of the unique 

challenges faced by individuals with intellectual and developmental disabilities (ID/DD), and how 

the use of alternatives such as supported decision-making may enable some individuals with 

ID/DD to exercise greater self-determination, participate more fully in their communities, and 

achieve greater economic self-sufficiency. 

In this report, NCD examines why people with ID/DD are at increased risk for becoming subject 

to guardianship as adults, and how that impacts their ability to benefit from civil rights laws 

aimed at advancing the self-determination and opportunities available to people with ID/DD, 

including the Americans with Disabilities Act, the Individuals with Disabilities Education Act, the 

Developmental Disabilities Act, and the Workforce Innovation and Opportunity Act. The report 

also examines how people with ID/DD are treated differently than other adults who are the 

subjects of guardianship proceedings, including in several states that have separate 

guardianship laws for people with ID/DD. Finally, the report examines the available data on 

guardianship for people with ID/DD and highlights the stories of people with ID/DD in the 

nation’s capital to increase policymakers’ understanding of the impact of guardianship and 

alternatives to guardianship on the lives of people with ID/DD. 

We hope that this report will increase the understanding of guardianship and its impact in the 

lives of people with ID/DD and their families across the Administration and in Congress. The 

report includes recommendations for the Social Security Administration, as well as the U.S. 

Departments of Education, Justice, and Health and Human Services. NCD stands ready to work 

with you and your Administration to ensure that Americans with ID/DD are provided with viable 

alternatives to guardianship if they need decision-making assistance, and that the due process 
2 National Council on Disability

protections they are afforded when they are faced with a petition for guardianship are robust 

and will avoid the unnecessary removal of civil rights.

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 

House of Representatives.)
National Council on Disability 3

National Council on Disability Members and Staff 

Members 

Neil Romano Chairman

Benro Ogunyipe, Vice Chairperson 

Billy W. Altom

Rabia Belt

James T. Brett

Daniel M. Gade

Wendy S. Harbour

Benro T. Ogunyipe

Clyde Terry

Staff 

Phoebe Ball, Legislative Affairs Specialist 

Stacey S. Brown, Staff Assistant 

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Executive Director 

Netterie Lewis, Administrative Support Specialist 

Amy Nicholas, Attorney Advisor

Nicholas Sabula, Public Affairs Specialist 

Amged Soliman, Attorney Advisor 

Anne Sommers, Director of Legislative Affairs & Outreach

Ana Torres-Davis, Attorney Advisor 

Keith Woods, Financial Management Analyst 
4 National Council on Disability
National Council on Disability 5

Acknowledgments

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

with Disabilities, the Autistic Self-Advocacy Network, and The Arc for working collaboratively with NCD 

to conduct the research and writing of this report.
6 National Council on Disability

Contents

Executive Summary..................................................................................................................13

Summary of Methodology.......................................................................................13

Executive Summary in Plain English.......................................................................................17

List of Acronyms .......................................................................................................................19

Chapter 1: Introduction to ID/DD, Guardianship, and Alternatives.......................................21

People with Intellectual and Developmental Disabilities.......................................21

Guardianship and People with ID/DD......................................................................23

Alternatives to Guardianship and People with ID/DD ...............................................25

Chapter 2: School-to-Guardianship Pipeline for Youth with ID/DD ......................................29

The School-to-Guardianship Phenomenon ............................................................29

Stories of the school-to-guardianship pipeline ......................................................32

The Impact of the Pipeline and U.S. Policy Implications.......................................33

Chapter 3: Unequal Treatment of People with ID/DD Under State Guardianship Law .......37

ID/DD-Specific State Guardianship Laws................................................................37

The Impact for ID/DD Guardianship Statutes on People with ID/DD and U.S. 

Policy..........................................................................................................................39

Chapter 4: U.S. Trends in Guardianship/Alternatives and People with ID/DD.....................41

The Guardianship Data Problem .............................................................................41

Review of National NCI Data....................................................................................42

Percentage of people with ID/DD in limited or full guardianship .........................43

Chapter 5: Guardianship & People with ID/DD: A Story from the Nation’s Capital.............47

Introduction...............................................................................................................47

Why NCD picked DC for an in-depth examination of guardianship .....................48

Key DC Legislative and Policy Reform ....................................................................48

Legislative Reforms for Adult Guardianship Proceedings .............................48

DC WINGS Complaint Process and Trainings on Alternatives to 

Guardianship .....................................................................................................49

DC Special Education Reforms to Promote Alternatives to Guardianship...50

Reforms Recognizing Supported Decision-Making Across the Life Span ...........51

By the Numbers: Guardianship and DC Residents with ID/DD .............................52

Data Collection Initiative at the DC Probate Branch .......................................52
National Council on Disability 7

Data from the DC Department on Disability Services on Guardianship and 

Alternatives ...............................................................................................................58

Lessons Learned from the DC Experience..............................................................60

Lessons for other states ...........................................................................................61

Beyond DC Institutionalization: Donna and Ricardo’s Story.................................64

A Powerful Love Story ......................................................................................64

Journey to Greater Decision-Making Freedom ......................................................64

Finances .............................................................................................................64

Health Care and Domestic Life .........................................................................65

Chapter 6: Other Stakeholder Experiences with the Guardianship System and 

Alternatives................................................................................................................................67

Rights Taken, Rights Restored: Tosha’s Story from Texas ...................................67

In Their Own Words: Other Lessons Learned from Stakeholders ........................68

Reasons Adults with ID/DD Become Subject to Guardianship .............................68

Perspectives on the Impact of Guardianship on People with ID/DD.....................70

Perceptions on the Impact of Alternatives to Guardianship on People with 

ID/DD ..........................................................................................................................73

Importance of Self-Determination for People with ID/DD .....................................74

Societal Biases Impacting the Decision-Making of People with ID/DD ................75

The Power of Communication in All Forms for People with ID/DD......................76

The Impact of a Lack of Opportunity to Make Decisions on People with ID/DD.......76

Chapter 7: Findings and Recommendations...........................................................................79

Appendix A: Analysis of ID/DD Specific Guardianship/Conservatorship Statutory 

Provisions ..................................................................................................................................85

Appendix B: Table of Analysis of NCI Data for States & Guardianship for People with 

ID/DD ..........................................................................................................................................95

Appendix C: Additional Tables of Analysis of NCI Data for Guardianship and People 

with ID/DD..................................................................................................................................99

Table 1: Age & Guardianship Status .......................................................................99

Table 2: Gender & Guardianship Status .................................................................99

Table 3: Race/Ethnicity & Guardianship Status....................................................100

Table 5: Type of Residence & Guardianship Status.............................................100

Endnotes ..................................................................................................................................103
8 National Council on Disability
National Council on Disability 9

Glossary

ABLE Accounts: A type of tax-advantaged savings account, established under the Achieving a Better 

Life Experience (ABLE) Act of 2014, for people with significant disabilities that began before they turned 

26 and who meet the Social Security Administration’s (SSA) definition of disability. Eligible individuals 

who are the owner and designated beneficiary of the ABLE account can use funds from the account to 

pay for qualified disability expenses, which are defined in the ABLE Act and its regulations. The first 

$100,000 in ABLE accounts are exempted from the individual’s resource limit for Supplemental Security 

Income (SSI). ABLE accounts are disregarded for the purpose of determining if a person meets the asset 

limit for Medicaid. For more information, visit http://ablenrc.org/. 

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.

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 the person becomes

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 filed by a guardian of the property that some states require to be 

submitted to the court each year itemizing expenditures and receipts made on behalf of the person. 

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 in 

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, 

Attorneys ad Litem do not necessarily advocate for the desired outcome of the individual they represent, 

but they may advocate for an outcome the Attorney ad Litem deems is in the person’s best interest.

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

person, particularly in court cases involving child custody or welfare. Compared to Substituted Judgment, 

the Best Interest standard tends to prioritize the person’s safety and well-being, rather than their 

expressed wishes. While traditionally linked with decisions made by guardians, it is now considered the 

less-preferred decision-making standard. For example, the National Guardianship Association’s standards 

indicate that, “only when the person’s goals and preferences cannot be ascertained, may the guardian 

make a decision in the person’s best interest.”1
10 National Council on Disability

Capacity: An individual’s ability to perform a specific task, such as to sign a contract. The term 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.”

Case Management Services: Coordinating services through community and government agencies, the 

extent of which depends on the specific state.

Clerk of the Court: A court officer responsible for filing papers, administering 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.

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: A person appointed by a court 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 in 

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 and unable to make decisions. The agent appointed by the principal in a durable power of 

attorney can continue to act within the scope of authority granted under this legal document. 

Family Guardian: A non-professional guardian who serves as guardian for an individual. Although family 

guardians usually are related to the individual, they may be friends or even volunteers. Although they may 

be able to be reimbursed out of the individual’s estate, family guardians do not serve 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 regarding guardianship for minors and adults. 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.
National Council on Disability 11

Incapacitated: 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. 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.”2 However, the concept of

capacity is a social and legal construct that is not necessarily provable or disprovable through scientific 

methods, and the use of the terms “capacity” and “incapacity” is becoming disfavored by guardianship 

reformers. For example, the 2017 Uniform Guardianship, Conservatorship, and Other Protective 

Arrangements Act3 makes no reference to either term.

Indigent: An individual with little to no resources 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.

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.

Joint Ownership: A situation in which two or more people co-own property. It allows a co-owner of land 

or bank accounts to manage an incapacitated co-owner’s property as their own.

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

court order. The person in 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. A Magistrate Judge generally handles minor cases and, in some 

jurisdictions, may handle guardianships cases, especially those that are uncontested.

Money Management Services: Services that help people with their financial affairs such as check 

depositing and writing, bill paying, budgeting and checkbook balancing, and tax preparation. Money 

Management Services are voluntary, so the person must be able to ask for or accept them.

Physician Orders of Life-Sustaining Treatment (“POLST”): The POLST process requires a discussion 

between the treating health care practitioner and the person about key end-of-life care treatment options, 

so that the person’s wishes can be identified and incorporated into doctor’s orders kept in the medical 

record or with the person. Those orders are reviewed periodically and must travel with the patient 

whenever he or she moves from one setting to another, thereby promoting continuity of care.

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

delegable legal rights and duties on behalf of the person in guardianship. The guardianship is of both the 

person and the property, and the individual in a plenary guardianship has been adjudicated completely 

incapacitated. This is the most restrictive form of guardianship.

Power of Attorney: A legal document executed under state law whereby one person (called the 

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

behalf for certain decisions and in certain circumstances. A durable power of attorney continues even 

after the individual has lost capacity. A power of attorney for health care usually goes into effect when 

the person becomes incapacitated.

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

serves as guardian for numerous individuals and is not a member of those individuals’ families. 

Professional guardians 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.
12 National Council on Disability

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

government 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 governmental 

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 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 if the trust is administered properly.

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 deciding on behalf of an individual in a manner 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.

Supported Decision-Making: There is no singular definition or model, but this generally means an 

individual choosing one or more people to assist that person in understanding the nature and 

consequences of potential personal and financial decisions, supporting the individual in making their own 

decisions, and then communicating decisions as needed. 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. This process works in the same way that most 

adults make daily decisions—by seeking advice, input, and information from trusted knowledgeable 

others.

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 kinds of trusts, each of which provides different benefits.
National Council on Disability 13

Executive Summary

n March 2018, the National Council on 

Disability (NCD) released a seminal report, 

“Beyond Guardianship: Toward Alternatives 

That Promote Greater Self-Determination for 

People with Disabilities,” which provided a 

comprehensive review of adult guardianship 

through the lens of civil rights reforms impacting 

people with disabilities. The report cited serious

problems about how guardianship systems 

function in the United States, including: 

 lack of reliable state and national data on 

guardianship, 

 misperceptions about the ability of people 

with disabilities to make autonomous 

decisions, 

 denial of due process within guardianship 

proceedings and meaningful consideration of 

less-restrictive alternatives, 

 insufficiencies in capacity determinations, 

 lack of court oversight of guardians, and 

 inaccessibility and underutilization of rights 

restoration processes after a guardian is 

appointed. 

In addition to its detailed findings, the 2018

NCD Report offers recommendations for reforms 

to improve the lives of people with disabilities who 

may need decision-making assistance. It also 

suggests reforms to prevent overly broad or undue 

guardianships, and to improve court oversight of 

existing guardianships to eliminate abuse, neglect, 

and exploitation. 

The present report builds upon the work of the 

2018 NCD report by specifically examining the role 

of guardianship and other alternatives in the lives 

of people with intellectual and developmental 

disabilities (ID/DD), a population that is known to 

be at increased risk of having guardians. The report 

also examines if the increased risk for people with 

ID/DD may be linked to the different ways states 

apply guardianship laws, as well as biases and/or 

assumptions about the ability of people with ID/DD 

to fully experience the dignity of risk. 

Some view guardianship as necessary to 

protect people with ID/DD. Others raise concerns 

about its stigma and how it impacts the civil rights 

and personhood of people with ID/DD. Like its 

predecessor, this report seeks to acknowledge 

and balance both of those views, while holding to 

the belief that “people with disabilities both desire 

and deserve choices when seeking assistance 

with daily living that maintains their selfdetermination and maximum dignity and 

independence.”4

Summary of Methodology 

The 2018 NCD report provided a broad 

overview of the current state of guardianship law 

and practice, as well as policy reforms and analysis 

of how effective or ineffective those efforts have

I
14 National Council on Disability

been. The present report uses that overview as a 

springboard to explore the experiences of people 

with ID/DD, their families, and others through a 

multimodal blend of updated literature review, data 

analysis, key informant interviews, targeted 

outreach, and personal story gathering from 

stakeholders. 

This report is organized into six chapters. 

 Chapter 1 briefly explains what 

guardianship is and includes crossreferences to the lengthier explanation in 

the 2018 NCD report. It also introduces

the reader to what is meant by ID/DD and 

how people with ID/DD are at an 

increased risk for having guardians. It also 

explains how guardianship, while directly 

governed by state law, can negatively 

implicate important federal civil rights for 

people made subject to it. 

 Chapter 2 describes what has become 

known as the “school-to-guardianship 

pipeline,” as well as its impact on youth 

with ID/DD. It examines U.S. policy 

implications of this pipeline under 

important federal laws, including the 

Individuals with Disabilities Education Act

(IDEA), the Developmental Disabilities 

Assistance and Bill of Rights Act, the 

Americans with Disabilities Act (ADA), the 

Rehabilitation Act, and the Workforce 

Innovation and Opportunity Act (WIOA). 

 Chapter 3 explores how some states’ 

guardianship laws have different standards 

and processes for obtaining guardianship 

over people with ID/DD than other 

populations who may need decisionmaking assistance. It also discusses the 

impact of the disparate treatment of

people with ID/DD, as well as U.S. policy 

implications, which include concerns about

the lack of procedural and substantive due 

process and the potential for 

discrimination based solely on disability 

diagnosis. 

 Chapter 4 acknowledges the 2018 NCD 

report findings about the lack of reliable 

and consistent national and state data on 

guardianship. It includes an analysis based 

on available National Core Indicator data, 

which addresses key questions about 

guardianship and people with ID/DD, 

including whether or not people with 

ID/DD who have guardians are more or 

less likely to live in restrictive 

environments than those who do not;

whether guardianships for people with 

ID/DD are increasing or decreasing; and 

what the prevalence is of guardianship 

broken down by race and general age 

group. 

 Chapter 5 gives an in-depth analysis of 

guardianship’s impact on people with 

ID/DD within Washington, DC, including 

never-before-published trends in DC

guardianship data and lessons that other 

states can learn from DC’s experience. 

 Chapter 6 summarizes the input this project 

received from stakeholders who responded 

to our call for their experiences with 

guardianship and alternatives. This includes 

people with ID/DD, their family members, 

and other stakeholders, such as special 
National Council on Disability 15

education advocates, guardians and 

administrators of guardianship programs, and 

staff who provide transition services to youth 

with ID/DD. To gather information from 

stakeholders, NCD developed templates to 

gather input through emails, an online tool, 

and personal interviews. NCD ultimately 

received 70 substantive responses from 19 

states and the District of Columbia.

 Finally, Chapter 7 offers NCD’s findings 

and recommendations, considering the 

information presented in this report.
16 National Council on Disability
National Council on Disability 17

Executive Summary in Plain English

he National Council on Disability (NCD) is a 

group that works to help the government 

learn more about how they can help people 

with disabilities. One way we do this is by writing 

reports about different topics that are important to 

people with disabilities, like this one. We wrote 

this summary in plain English to make it accessible 

to everyone.

NCD wrote a report about guardianship in 

March 2018. Guardianship is when someone—like 

a family member, friend, or paid person—is 

chosen by the court to make legal decisions for a 

person. In that report, we looked at rights of adults 

with disabilities, guardianship, and other ways 

people make choices in their lives. We found many 

problems with guardianship in the United States. 

Sometimes governments and courts think people 

with disabilities can’t make decisions themselves. 

Sometimes people with disabilities can’t ask to 

change or get rid of their guardian, even if they 

feel the guardian isn’t helping them. Sometimes, 

they can’t report problems with their guardian, or 

figure out other ways to make decisions without a 

guardian. Judges don’t always pay attention to 

what the guardians are doing, even if a guardian 

has caused problems before. But people who have 

guardians still have some rights. Once a person 

gets a guardian, they don’t always need one 

forever—but some people don’t know that. NCD 

talked about how to help more people with 

disabilities make their own decisions, with the 

support they need and want. We also explained 

how guardians and courts could do a better job 

without hurting people with disabilities. 

We know that there are many people with 

intellectual and developmental disabilities who 

have guardians. We wanted to focus on that, so 

NCD wrote this second report. We also wanted to 

know if more people with intellectual and 

developmental disabilities have guardians now 

than they did before. States have different 

guardianship laws, and that can be confusing for 

people with disabilities, family members, and 

judges. Sometimes people think that if you have 

an intellectual and developmental disability, you 

can’t make decisions for yourself. They think you 

could get hurt, even though everyone makes bad 

decisions or gets hurt sometimes. 

There is a big debate about guardians. Some 

people think guardians are a really good thing. 

They can help protect people with intellectual 

disabilities and help them make decisions. Some 

people are worried about guardians taking away 

the rights of people with disabilities or making bad 

decisions. Some people are embarrassed about 

having a guardian. NCD believes guardians are not 

always bad or always good. You should not be 

embarrassed if you need or want a guardian. But 

people with intellectual and developmental 

disabilities should always get to make decisions 

T
18 National Council on Disability

about their lives. You should be able to tell other 

people about any problems you’re having. You 

should always have rights and choices. Sometimes 

a guardian can help with these things. Other 

times, a person with an intellectual and 

developmental disability might not want or need a 

guardian.

We did a lot of work before we wrote this report. 

We talked to people with intellectual and 

developmental disabilities and their families and 

listened to their stories. We talked to experts who 

know a lot about guardianship. We read what people 

wrote about guardianship. After all that, we wrote 

this report. We came up with a lot of ideas about 

how guardianship in the United States should be 

made better for people with intellectual disabilities. 

We also talked about how other options besides 

guardianship should be used when they can. We are 

asking the Federal Government to think and make 

changes based on our ideas. 
National Council on Disability 19

List of Acronyms

ACL Administration for Community Living

ADA Americans with Disabilities Act

ADAA ADA Amendments Act 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 The Office of Special Education Programs at the U.S. Department of Education

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

Education

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

WIOA Workforce Innovation and Opportunity Act
20 National Council on Disability

People with ID/DD have been the 

target of stigma, segregation, and 

low expectations throughout 

history...[w]hile some of these 

beliefs and practices persist 

today, significant progress has 

been made in the past 50 years.
National Council on Disability 21

Chapter 1: Introduction to ID/DD, Guardianship, and 

Alternatives

People with Intellectual and 

Developmental Disabilities 

he group of people with disabilities 

addressed in this report are people with 

intellectual and/or developmental 

disabilities (ID/DD). According to the American 

Association on Intellectual and Developmental 

Disabilities : “Intellectual disability is a disability 

characterized by significant limitations in both 

intellectual functioning and in adaptive behavior, 

which covers many 

everyday social and 

practical skills” and 

originates before the age of 

18.5 Prior to 2010 and the 

passage of federal 

legislation known as “Rosa’s Law,” intellectual 

disability was generally referred to as “mental 

retardation,” which advocates with disabilities now 

consider a pejorative.

6

 

While an intellectual disability is usually 

considered to be a developmental disability, the 

term “developmental disabilities” refers to a 

broader group of lifelong disabilities that can be 

intellectual, physical, or both. Federal law defines 

developmental disabilities as: 

A severe, chronic disability of an individual 

that: (i) is attributable to a mental or physical 

impairment or combination of mental and physical 

impairments; (ii) is manifested before the individual 

attains age 22; (iii) is likely to continue indefinitely; 

(iv) results in substantial functional limitations in 3 

or more of the following areas of major life activity: 

(I) [s]elf-care; (II) [r]eceptive and expressive 

language; (III) [l]earning; (IV) [m]obility; (V) [s]elfdirection; (VI) [c]apacity for independent living; (VII) 

[e]conomic self-sufficiency; and (v) reflects the 

individual’s need for a combination and sequence 

of special, interdisciplinary, or generic services, 

individualized supports, or other forms of 

assistance that are of 

lifelong or extended 

duration and are individually 

planned and coordinated.7

 

Depending on their 

functional impact, 

examples of developmental disabilities under this 

federal definition may include intellectual disability, 

autism, cerebral palsy, Down syndrome, fragile X 

syndrome, fetal alcohol syndrome, spina bifida, 

and brain injuries occurring before the age of 22, 

among other disabilities.

People with ID/DD have been the target of 

stigma, segregation, and low expectations 

throughout history. It was a widely held belief that 

people with ID/DD were unable to benefit from 

typical life experiences or contribute to society in any 

meaningful way. It also was believed that people 

with ID/DD needed high levels of supervision and 

protection throughout their lifetimes.

T

People with ID/DD have been the 

target of stigma, segregation, and 

low expectations throughout 

history.
22 National Council on Disability

These beliefs led to people being denied 

opportunities for education, confined to institutions, 

and being placed under guardianship primarily based 

on the presence of an ID/DD-related diagnosis.

While some of these beliefs and practices 

persist today, significant progress has been made 

in the past 50 years. The passage of IDEA (then 

known as the Education for All Handicapped 

Children Act) in 1975 and the ADA in 1990 were 

supported by new beliefs about the potential for 

people with ID/DD to learn, grow, and contribute 

to society, including equal access to education and 

human rights. People with ID/DD now are breaking 

down many of the old stereotypes with support 

from improved medical knowledge, access to 

education and technology, and opportunities for 

full community inclusion and participation. 

Debunking Myths of Intelligence Testing of People 

with ID/DD

Diagnosing ID/DD frequently involves some 

sort of testing. This testing usually includes tests 

of intellectual functioning. A person’s intellectual 

functioning is generally determined by the 

demonstration of certain skills such as the ability 

to reason, solve problems, and navigate through a 

variety of life situations. Although intelligence 

testing has existed since the early 1900s, there 

has been much controversy within the field of 

psychology about whether the testing actually 

measures “intelligence.” One of the first of these

tests, designed by Alfred Binet, was intended to 

identify children who might need extra assistance 

with learning, and was not intended to measure

intelligence. Although Binet believed that 
National Council on Disability 23

intelligence was not fixed and could change over

time, future tests building on his original work 

were developed by people who believed 

differently. These subsequent tests were 

frequently used to identify people who were 

considered less capable and therefore somehow 

inferior in society. This had the greatest impact on 

people with ID/DD during what is known as the 

“eugenics era,” where people who were identified 

as “feeble minded” based on intelligence testing 

were removed from society, sterilized, and sent to 

institutions. 

While significant scientific debate about the 

usefulness and meaning of intelligence testing 

continues within the field of psychology today, the 

greater practical problem is the general 

misconceptions of such testing by lay and legal 

communities. The Intelligence Quotient or “IQ” 

score that is produced by various tests is often 

misconstrued to be a measure of a how well a 

person’s brain works, as well as their potential for 

learning in the future. “Mental age,” a concept 

tied to IQ tests, is commonly misused to infer that 

people with ID/DD are incapable of developing 

beyond the abilities of young children. Originally, 

mental age, as determined by performance on the 

intelligence test, was used along with 

chronological age to calculate the IQ score. 

Although this concept is no longer used in most 

contemporary testing, it is still commonly used to 

explain the intelligence and abilities of people with 

ID/DD. For example, one family member explained 

that she was a guardian because “[o]ur daughter 

functions [as] a 5-year old to 16-year-old, 

depending on the context.” 

Properly used, intelligence and other tests can 

help practitioners understand individual learning 

challenges and make recommendations for 

improving educational and other learning support. 

In a 2003 article on “Intelligent Intelligence 

Testing,” then president-elect of the American 

Psychological Association Diane Halpern noted 

that “We are not all the same; we have different 

skills and abilities. What’s wrong is thinking of 

intelligence as a fixed, innate ability instead of 

something that develops in a context.”8 Science 

and experience have shown that human learning is 

a highly individualized process that can be 

facilitated by a variety of strategies and life 

experiences. While these interventions do not 

make a person’s disability go away, they do 

function to strengthen other skills and help the 

person learn new ways to accomplish a 

challenging task.9 This process is applicable to all 

areas of learning and life, including decisionmaking. It also means that not having the chance 

to learn to make decisions or taking away the 

opportunity and right to be involved in personal 

decision-making, preempts the person from 

becoming a better decision-maker over time.

Guardianship and People with ID/DD 

Guardianship is a state legal process where a 

court removes some or many of the legal and 

decision-making rights from an individual and 

transfers all or some of them to another person,

called a guardian or conservator. Although the 

particulars of guardianship depend on state law, an 

adult usually becomes subject to guardianship 

when a court, through a judge or magistrate judge, 

finds that the individual is incapable of making all 
24 National Council on Disability

or some of their own financial or personal 

decisions and deems it necessary to appoint a 

guardian to make those choices on their behalf. 

The guardianship process usually starts with 

someone, such as a family member, a 

governmental agency, or a service provider, filing 

of a petition in the court with jurisdiction. The 

petition is generally followed by a notice of the 

petition to interested parties that a guardianship

petition has been filed, 

appointment of an attorney 

to represent the allegedly 

incapacitated person, a 

capacity evaluation, court 

hearing(s), and, if the 

petition is successful, 

letters of guardianship. 

Once a guardianship is put 

in place, in most 

circumstances, it lasts 

either until the individual in guardianship dies or 

has their rights restored. Guardians’ 

responsibilities under state law vary but may 

include submitting guardianship plans and initial 

and annual reports to the court. 

The 2018 NCD report reviews this general 

process and fundamentals of guardianship in more 

detail, including what rights are at risk in 

guardianship, how courts determine incapacity, 

and what the scope of the guardian’s authority 

may be.10 Guardianships are typically separated 

into two categories: guardianships of the person

and guardianships of the property (also sometimes 

referred to as conservatorship). When the guardian 

controls decisions regarding both person and 

property, the guardianship is called plenary or full. 

Some rights may be removed without being 

transferred to the guardian, such as the right to 

marry, vote, drive, or seek or retain employment. 

Other rights may be removed and transferred to 

the guardian to exercise on behalf of the person, 

such as the right to contract, sue and defend 

lawsuits, apply for governmental 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 person, 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.11

In short, there are very wide-ranging actions 

that a guardian may be authorized to take on 

behalf of and instead of the person. This is why 

guardianship has been described as a “kind of civil 

death” for people subject to it, in that they are “no 

longer permitted to participate in society without 

mediation through the actions of another if at all.”

12 Given the nature of our nation’s existing legal 

system, there may well be times when

guardianship is justified and necessary, although 

some disability rights advocates strongly disagree. 

Regardless, because of its legal implication on the 

person’s civil rights, guardianship must be 

... [B]ecause of its legal 

implication on the person’s civil 

rights, guardianship must be 

recognized as “an extraordinary 

intervention in a person’s life and 

affairs,” with the inherent 

potential to be a “drastic restraint 

on a person’s liberty”...
National Council on Disability 25

recognized as “an extraordinary intervention in a 

person’s life and affairs,”13 with the inherent 

potential to be a “drastic restraint on a person’s 

liberty,”14 and, as such, an option of last resort. As 

emphasized in the 2018 NCD report, although

guardianship is created by state law, it raises 

fundamental questions concerning federal civil 

rights and constitutional due process worthy of 

examination and intervention at the national level.

This impact of guardianship is particularly 

relevant to people with ID/DD, who have been 

found to be at increased risk for being made 

subject to it.

15 Guardianship is often implemented, 

because service providers, 

family, judges, and others 

assume people with ID/DD 

cannot make decisions for 

themselves,16 despite 

research to the contrary.17

As scholars have said, 

“rather than being treated 

as the extraordinary proceedings that they are, 

guardianships are often treated as a routine part 

of permanency planning for persons with 

[intellectual disabilities.] . . . [G]uardianships—

including plenary guardianships—appear to be 

routinely granted over persons with [intellectual 

disabilities].”18 This may be due to a combination 

of factors including the “School-to-Guardianship 

Pipeline” (discussed in Chapter 2), ID/DD specific 

guardianship statutes (discussed in Chapter 3), 

barriers to accessing alternatives, pressures by 

governmental and other agencies providing or 

funding disability-related services; and societal 

biases regarding ID/DD diagnosis and capacity. 

This project’s stakeholder outreach indicated that 

these barriers may be overcame in individual 

situations, but societal misunderstandings of what 

it means to live with ID/DD persist. For example, a

person with ID/DD told us: “People are shocked [I 

don’t have a guardian] because I have so many 

disabilities and I have been told from people who 

did tests on me that I am like a 2 year old.”

Alternatives to Guardianship and 

People with ID/DD 

As the American Association on Intellectual 

and Developmental Disabilities and The Arc of the 

United States have jointly concluded: “Less 

restrictive means of decision-making supports 

(e.g., health-care proxies, 

advance directives, 

supported decision-making, 

powers of attorney, 

notarized statements, 

representation agreements, 

etc.) should be tried and 

found to be ineffective in 

ensuring the individual’s decision-making capacity 

before use of guardianship as an option is 

considered.”19 Other common examples of legal 

alternatives to guardianship include health care 

surrogates by operation of state law, 

representative payees, trusts, and joint ownership. 

If alternatives to guardianship are thought of 

broadly—i.e., as services or supports that allow a 

person’s needs to be met without a courtappointed guardian—many other options may be 

included within the continuum of decision-making 

support. These options include:

 voluntary participation in money 

management services

 case management services

“[R]ather than being treated as the 

extraordinary proceedings that 

they are, guardianships are often 

treated as a routine part of 

permanency planning for persons 

with [intellectual disabilities.]”
26 National Council on Disability

 in-home care services

 food and prescription delivery

 daily call services

 direct deposit or bill pay

 medical or educational release forms to allow 

the sharing of confidential information with 

supporters

 other credit union and banking services

technology 20

 person-centered planning

 vocational services 21

 supported living 

services.

22

Emerging alternatives 

to guardianship in the 

United States include 

Physician Orders for LifeSustaining Treatment 

(POLST) and, of particular 

relevance to people with 

ID/DD, ABLE accounts. The 

2018 NCD report reviews at length the advantages 

and disadvantages of many of these lessrestrictive options and includes discussion of the 

promising “PRACTICAL Tool,” which was

developed by the American Bar Association to 

encourage lawyers to identify and implement 

appropriate decision-making options for people 

with disabilities that are less restrictive than 

guardianship.23

For the purpose of the present report, NCD 

wants to emphasize that, from a rights 

perspective, alternatives that are voluntary in 

nature—i.e., decision-making support 

arrangements that are chosen and able to be 

cancelled or changed by the people with 

disabilities themselves—are less-restrictive than 

those that are involuntary in nature and, as such, 

are options that should be considered first for 

people with ID/DD. Voluntary alternatives to 

guardianship include tools such as supported 

decision-making (when people with disabilities use 

friends, family members, and others they trust to 

help them understand the everyday situations and 

choices they face, so that they can make their own 

decisions without the need for a substitute 

decision maker) and powers of attorney (written 

documents executed under 

state law that allows a 

person to voluntarily 

designate someone else to 

act for them in certain 

situations and to cancel or 

change that designation at a 

later time without court 

involvement). 

Involuntary alternatives 

involve some entity other than a court or the 

person with a disability appointing and having 

control over who serves as the decision-maker. 

They include options such as representative 

payees (which are appointed by SSA when it 

determines beneficiaries cannot manage or direct 

the management of his or her own benefits and 

cannot be independently removed or changed by 

the beneficiaries themselves), surrogate health 

care decision-makers (which are not acting under 

the authority of a power of attorney or judicial 

determination, but rather by operation of other 

state law, and usually involve some form of 

professional certification(s) of a person’s incapacity 

to make health care decisions), and Educational 

[F]rom a rights perspective, 

alternatives that are voluntary in 

nature...are less-restrictive than 

those that are involuntary in 

nature and, as such, are options 

that should be considered first 

for people with ID/DD.
National Council on Disability 27

Representatives (which are discussed further in 

Chapter 2).

NCD supports delinking perceptions about the 

ability of people with ID/DD to access voluntary 

alternatives to guardianship from their diagnosis 

alone. Many people with cognitive and intellectual 

disabilities can knowingly and voluntarily execute 

powers of attorney or advance directives, yet 

misconceptions about this persist, 24 and 

opportunities to access these options may not be 

offered to them. A family respondent reported: 

“An attorney has claimed that our son does not 

have legal capacity to enter into a durable medical 

power of attorney due to . . . his intellectual 

disability, but he is very clearly expressing 

preferences and making decisions about what he 

wants in life.”

NCD also cautions against the over-use of 

involuntary alternatives to guardianship for people 

with ID/DD. While they do not involve the court 

system and are expressly limited in nature, they 

are still a form of substitute or surrogate, rather 

than supported, decision-making.25 For example, 

having representative payees is a common 

alternative to guardianship for people with ID/DD, 

based on the stakeholder respondents in this 

project. Yet, while there are benefits to having a 

representative payee in certain circumstances, 

there also risks to the beneficiary that should not 

be forgotten, including loss in their feelings of selfworth and autonomy, encouragement of 

dependence, stigmatization, and the possibility 

that the representative payee will financially exploit 

or use the benefits as leverage to control the 

beneficiary.26 As the Social Security Advisory 

Board has recognized, “[t]he appointment of a 

payee represents the curtailment of certain rights 

for the beneficiary and, therefore, should be 

undertaken carefully” and with consideration of 

the supported decision-making (SDM) as an 

alternative to appointment.27 A respondent agreed 

with such careful consideration: “I am considering 

terminating [my] role [as representative payee] in 

light of what I now know about supported 

decision-making. I would like to return the right to 

decide how his SSDI is spent to [my family 

member with ID/DD]. He is already more confident 

and assertive since the conservatorship 

termination, and I expect him to continue to grow

as he takes ownership of his decisions with my 

support.” Possible ways states can address 

concerns about other involuntary alternatives to 

guardianship, such as Surrogate Health Care 

Decision-Makers and Educational Representatives, 

are discussed in Chapter 5. 

Finally, NCD sees SDM as an ever more 

promising and recognized option for people with 

ID/DD. Based on information from the National 

Resource Center for Supported Decision-Making’s 

website, as of June 2018, of the almost 20 cases 

where a court terminated or denied a guardianship 

explicitly in favor of SDM, almost 90 percent of the

cases involved people with ID/DD. The first 

reported court decision terminating a guardianship 

specifically in favor of SDM occurred in 2012 in the 

state of New York and was followed by other 

cases in New York (2015, 2016, 2017), Virginia 

(2013), Massachusetts (2015), the District of 

Columbia (2016), Florida (2016), Vermont (2017), 

Kentucky (2017), Nevada (2017), Maine (2018), and 

Indiana (2018).28 Two of the people with ID/DD 

involved in such cases, namely Jenny Hatch of 
28 National Council on Disability

Virginia29 and Ryan King of the District of 

Columbia,30 were highlighted in the 2018 NCD 

report as representative of the third wave of 

guardianship reform. Additionally, the first formal 

SDM pilot program in the United States involved 

people with ID/DD and was held in Massachusetts 

(2014-2016).

31 Since then, it has been joined by 

ID/DD-specific pilots in states such as New York 

(2016—2021),32 Maine (2016-2017)33, and Georgia 

(2018 and ongoing),34 among others.

Supported decision-making also is beginning 

to receive public attention for people with ID/DD in 

the health care realm. For example, in a film called 

Supported Decision-Making: Gabby’s Story,

35 a 

young woman with spina bifida describes her 

experience working with a health advocate 

through The Arc San Francisco. The film uses 

Gabby’s story to illustrate the benefits of SDM,

both as a decision-making approach and as a way 

of maintaining personal autonomy in managing 

one’s own medical care. 

Lacking a robust natural support system can 

be a barrier to some people’s ability to use SDM. 

Gabby’s story highlights the role organizations and 

community supports can play in advancing the 

decision-making rights of people with ID/DD. 

Under its Health Care Management Services 

program, which began in 2003, health advocates at 

The San Francisco Arc are available to assist 

people with ID/DD by attending medical 

appointments with them, helping them understand 

medical decisions, and acting as a facilitator between 

the supporter person and medical providers—all at 

no change to the people with ID/DD. According to 

Jennifer Dresden, the Director for the Center for 

Health and Wellness, the program empowers people 

with ID/DD to have control over their health care 

decisions and helps medical providers better 

understand and serve their patients. The National

Disability Rights Network is also exploring the use 

of supported decision making in the healthcare 

context with support from a grant by the WITH 

Foundation.36 This report will explore more 

promising practices to further promote selfdetermination throughout the life spans of people 

with ID/DD.
National Council on Disability 29

Chapter 2: School-to-Guardianship Pipeline for Youth 

with ID/DD

The School-to-Guardianship 

Phenomenon 

he Individuals with Disabilities Education 

Act (IDEA) generally requires—once 

students in special education reach the age 

of majority (usually 18, 

depending on state law

37)— the school to transfer 

all of their parents’ 

educational rights to them 

as part of the transition 

planning process.38 When 

that occurs, students have the right to make their 

own educational decisions for as long as they are 

entitled to receive special education services—i.e., 

until they graduate from high school or exceed the 

maximum age for receiving special education 

services, which, in most states, is 21 years old. 39

However, under IDEA, the 

transfer of rights will not 

occur if the adult student is 

subject to guardianship. 

The transfer also will not 

occur if the school uses a 

separately established nonjudicial educational representative process to 

determine that the student cannot provide 

informed consent to educational decisions and to 

appoint another person (usually a family member)

as the adult student’s educational representative. 

It is often at the transfer-of-rights juncture that 

many parents and school personnel question the 

competence of students

with disabilities, and 

parents seek to become 

the legal guardian of their 

young adult children.40 

At this point in the 

IDEA transition process, 

guardianship can be set in motion by a variety of 

factors. First, intentionally or unintentionally, 

school professionals may be biasing parents 

toward pursuing guardianship because of the way 

in which they notify them of the transfer-of-rights 

process. For example, they may start the 

conversation by asking 

parents if they have 

guardianship or are 

planning to obtain 

guardianship, rather than 

discussing the student’s 

strengths and abilities and 

less-restrictive options of decision-making support, 

such as SDM or educational powers of attorney.41 

T

However, under IDEA, the transfer 

of rights [to make one’s own 

education decisions] will not occur 

if the adult student is subject to 

guardianship.

[S]chool professionals may be 

biasing parents toward pursuing 

guardianship because of the way 

in which they notify them of the 

transfer-of-rights process.
30 National Council on Disability

Additionally, school personnel might not be 

aware of alternatives to guardianship or its legal 

impact. As one former educator explained: “I recall 

hearing the Department Chair and others saying 

that, if the student does not have a guardian, then 

the parents cannot attend the meetings and it just 

makes things more 

challenging. [I was] not told 

about alternatives to 

guardianship.” Such 

conversations may 

pressure parents to pursue 

guardianship over their 

adult child, so that they are assured they can 

continue to be involved in their child’s education.

While IDEA does not require appointing a 

guardian for adult students in special education, it 

allows—and arguably mandates—states to 

establish alternative procedures, short of 

guardianship and consistent with state law, for the 

appointment of the parent or another person to 

represent the educational interests of an adult 

student, if the school district determines that the 

student is unable to provide 

informed consent to his or 

her education program.42

Such extra-judicial 

processes raise due 

process concerns in that 

rights are being taken away 

from the student without court adjudication. They 

also promote substitute or surrogate decisionmaking—rather than SDM—in the educational 

context.43 Based on a 2012 review of state law 

Such extra-judicial processes raise 

due process concerns in that 

rights are being taken away from 

the student without court 

adjudication.
National Council on Disability 31

and regulations, at least six states had regulations 

that expressly provided for a non-judicial 

appointment of an educational representative for 

the student upon parental request and/or 

professional certification(s) or an Individualized 

Education Program (IEP) team finding that the 

student is incapable of providing informed consent 

for educational decisions. 44 The District of 

Columbia joined them in July 2016, as discussed in 

Chapter 5. Some states have other exceptions to 

the transfer of rights. In 

Maryland, for example, the 

general rule is that parents 

retain the special education 

rights of their adult child, 

unless they affirmatively or 

tacitly refuse or fail to participate in the special 

education decision-making process.45

There is no national data available on how many 

people with ID/DD get guardians right after high 

school. However, 2015-2016 National Core Indicator 

survey data indicates that the majority (58 percent) of 

people with ID/DD ages 18 to 22 receiving publicly 

funded services have 

guardians, which suggests 

guardianship is common for 

this age group. Moreover, as 

highlighted in the 2018 NCD 

report, stakeholders 

frequently reported that 

guardianship is presented by the school system as 

the main, if not only, option for decision-making 

support for young adults with ID/DD. A 2015 study 

supported by the TASH Human Rights Committee 

found that schools were the number one referral 

source for guardianship,

46 and guardianship is 

frequently considered the default option for students 

with ID/DD.

47 Many of the stories NCD collected 

affirm this.

 A professional who used to work with 

transition-age youth in special education 

reported that she and her colleagues would 

give parents what was known as a 

“guardianship packet.” She said: “It makes 

me cringe now, that that is how it was being 

passed around school, how nonchalant it is, 

and then how dangerous it 

can actually be . . . I didn’t 

experience from my 

mentors that this was a 

human rights issue, that you 

were [contributing to] taking 

someone’s rights away by recommending 

guardianship Parents see you as a 

representative and professional on behalf of 

the district, so if you say something like, 

‘[H]ere is information on guardianship,’ then 

they [may] not do their due diligence.”

 As a Michigan family member reported: 

“Too often schools have 

told family members that a 

student with I[D]/DD must 

have guardianship if they 

want a family member or 

friend to assist with one’s 

IEP when the student turns 

18. School districts are terribly 

misinformed about guardianship and use 

this approach to limit families’ involvement 

in IEPs.” 

 A Massachusetts family member reported: 

“People are encouraged by well-intended 

[T]he majority (58 percent) of 

people with ID/DD ages 18 to 22 

receiving publicly funded services 

have guardians ...

A 2015 study supported by the 

TASH Human Rights Committee 

found that schools were the 

number one referral source for 

guardianship ...
32 National Council on Disability

educators to make the decision [about 

guardianship] at the age of majority. These 

educators do not connect the dots 

between transition when they should be 

teaching decision-making skills and the 

notion that guardianship is contrary to 

what they are supposed to be 

accomplishing.” 

 A person with ID/DD in Virginia said 

guardianship happens “at 18 because 

schools tell parents they have to have 

guardianship to make school and IEP 

decisions for and with their child, when 

people assume someone like me, who 

doesn’t walk or talk, is stupid and needs to 

be put away and to make all the decisions 

about me for me.”

 A family member from Kentucky said: “In 

my family's experience, we were prompted 

to begin the process [of obtaining 

guardianship] during his special education 

case conference meetings while he was still 

in high school. The school was not terribly 

helpful in informing us of the process, but 

did provide resources for where to go for 

more information.”

 A Missouri family member reported: “It was 

recommended at my son's eighteenth

birthday by the school officials that I file for 

guardianship.”

Many stakeholders also referenced the lack of

information on alternatives to guardianship 

provided by schools and its impact. For example: A 

family member reported: “Forms of limited 

guardianship were not discussed [in IEP team 

meetings], as it was assumed my brother [with 

ID/DD] would require plenary guardianship.” 

 A family member in Michigan responded: 

“Very, very little information [on this from 

schools]. Too often schools have told family 

members that a student with I[D]/DD must 

have a guardianship if they want a family 

member or friend to assist with one’s IEP 

when the student turns eighteen. School 

districts are terribly misinformed about 

guardianship or use this approach to limit 

families’ involvement in IEPs.”

 A guardian in Missouri responded: “The 

educators do not support alternatives to 

guardianship.”

 A lawyer in Indiana said: “There is no 

information available from the school. Our 

Protection and Advocacy organization has a 

website and will do information 

presentations.” 

Stories of the school-toguardianship pipeline 

A person with ID/DD in Virginia said guardianship 

happens “at 18 because schools tell parents 

they have to have guardianship to make school 

and IEP decisions for and with their child, when 

people assume someone like me, who doesn’t 

walk or talk, is stupid and needs to be put away 

and to make all the decisions about me for me.”
National Council on Disability 33

The Impact of the Pipeline and U.S. 

Policy Implications 

Youth with ID/DD are ultimately disempowered 

by schools actively encouraging guardianship to the 

exclusion of less-restrictive alternatives, and not 

providing families and students in special education 

with sufficient information about the availability of a 

full continuum of decisionmaking supports. Research 

has found reduced selfdetermination can lead to 

diminished quality of life

outcomes and reduced 

community integration and 

participation.

48 For young 

adults with ID/DD, guardianship may be an obstacle 

to the development of self-determination skills 

necessary for life after high school, such as critical 

thinking, self-advocacy, and knowledge of one’s own 

skills, interests, strengths, and weaknesses.49

Studies have found that 

students who have selfdetermination skills are more 

likely to successfully make 

the transition to adulthood, 

including improved 

education, employment, and 

independent living outcomes.50 Studies also have 

found that the appointment of a guardian for a young 

adult with ID/DD did not necessarily resolve the 

areas of concern prompting it and, in some cases, 

the young adult under guardianship would have done 

just as well, if not better, without a guardian.51 The 

guardianship often appeared to have benefited the 

guardian, rather than the person under 

guardianship.52

The U.S. policy implications of the school-toguardianship pipeline are also troubling. There are 

strong arguments to be made that it runs contrary

to important civil rights laws impacting people with 

ID/DD. As the 2018 NCD report found, 

guardianship must be seen as subject to the 

Americans with Disabilities Act (ADA),

53 which has 

been interpreted by the

U.S. Supreme Court in the 

1999 Olmstead decision54

to give rise to an obligation 

to provide services to 

people in the least 

restrictive environment that 

will meet their needs. If 

states’ educational systems are promoting 

guardianship without appropriate consideration of 

less restrictive alternatives, including supported 

decision-making, they are arguably violating the 

ADA55 and promoting outcomes that run contrary 

to the Olmstead 

community integration 

mandate. As one 

interviewee stated: “By 

definition, if you are not the 

person making decisions, 

your ability to be a real 

member of the community [is] smaller.” 

In addition, while there may be “traces of 

guardianship”56 found within it, IDEA also 

mandates individualized transition planning for 

qualified students with disabilities to increase the 

likelihood of post-school employment and/or 

education.57 Transition planning outcomes should 

be tailored to students and their individual 

preferences, needs, and strengths, so they should 

For young adults with ID/DD, 

guardianship may be an obstacle 

to the development of selfdetermination skills necessary for 

life after high school ...

If states’ educational systems are 

promoting guardianship without 

appropriate consideration of less 

restrictive alternatives, including 

supported decision-making, they 

are arguably violating the ADA ... 
34 National Council on Disability

contribute actively to the decision-making and 

planning process.58 With that in mind, some 

scholars have suggested that “[t]he goals of 

transition planning, which focus on autonomy and 

independence, appear to be in direct conflict with 

the goal of guardianship, which is to facilitate the 

individual’s dependence on 

another person’s authority 

to make all or some of their 

decisions.”59 As one team 

of researchers observed, 

guardianship can work 

against the goals of 

transition planning, because 

it has broad implications 

regarding the loss of 

fundamental rights and 

personal liberty.60

Moreover, the purpose of the federal 

Developmental Disabilities Assistance and Bill of 

Rights Act is to “assure that individuals with 

developmental disabilities and their families 

participate in the design of and have access to 

needed community 

services, individualized 

supports, and other forms 

of assistance that promote 

self-determination, 

independence, productivity, 

and integration and 

inclusion in all facets of 

community life.”61 These goals are likely more 

readily achievable through alternatives that hold 

the promise of increasing self-determination, such 

as supported decision-making, rather than 

substitute decision-making. As one prior NCD 

interviewee stated: “[Guardianship is] never going 

to allow the person [subject to it] to really become 

integrated to [the] community because [others are] 

going to have to be always checking” with the 

guardian, not the person.

Finally, one of the goals of the Rehabilitation 

Act of 197362 is to promote 

and support employment 

for people with disabilities, 

including ID/DD. Its 

regulations have long 

recognized the importance 

of intervening early in the 

lives of transition-age youth 

with disabilities by 

mandating that state 

vocational rehabilitation 

programs coordinate with 

special education transition teams “as early as 

possible.”63 The Workforce Innovation and 

Opportunity Act (WIOA)64 further augmented 

these requirements by mandating vocational

programs to “provide pre-employment transition 

services to assist students 

with disabilities make the 

transition from secondary 

school to postsecondary 

education programs and 

competitive integrated 

implement” 65 In addition, 

Section 511 of WIOA was 

designed to make it less likely that youth who 

have disabilities and are age 24 or under are

inappropriately routed to segregated, subminimum 

wage employment without first exploring all the 

alternatives for meaningful work and post-

[NCI] data indicates people with 

ID/DD who receive publicly funded 

services who are not under 

guardianship are more likely to be

employed in an integrated job.

“[t]he goals of transition planning, 

which focus on autonomy and 

independence, appear to be in 

direct conflict with the goal of 

guardianship, which is to facilitate 

the individual’s dependence on 

another person’s authority to 

make all or some of their 

decisions.”
National Council on Disability 35

secondary education and training. Research has 

found young adults with disabilities who are 

supported have greater self-determination in their 

lives, are more likely to be better employed,66 and 

National Core Indicator data indicates people with 

ID/DD who receive publicly funded services who 

are not under guardianship are more likely to be 

employed in an integrated job.67 and those who 

are in guardianship are significantly less likely to 

have employment as a goal in their service 

plans.68 Both of these findings suggests the 

Rehabilitation Act’s and WIOA’s goals may be 

better achieved by requiring schools and transition 

teams to ensure awareness of decision-making 

support options that do not remove the legal rights 

of young adults with disabilities.

It is therefore critical that the school-toguardianship pipeline be dismantled so that 

students with disabilities and their families receive 

the information they need to make thoughtful and 

informed choices when it comes to guardianship 

and alternatives. As one former educator noted, 

too often, “students are not informed, parents are 

uninformed, and educators are uninformed . . . It’s 

a triple whammy.” Fortunately, efforts to address 

this information gap have been undertaken by the 

U.S. Department of Education Office of Special 

Education and Rehabilitative Services (OSERS). In 

January 2017, OSERS issued its “Transition Guide 

to Postsecondary Education and Employment for 

Students and Youth with Disabilities” report,

which recognized the serious implications of 

guardianship and encouraged schools to recognize 

and promote supported decision-making and selfdetermination by students before, during, and after 

the age of majority. It also recognized other 

alternatives to guardianship in the educational 

context, including educational powers of attorney.

69 OSERS archived and then updated and reissued 

this guide, retaining these important elements of 

its guidance.70

However, based on the information received 

from respondents as part of this project, more is 

clearly needed to ensure that teachers, schools, 

and school districts are complying with this 

guidance. This should include:

 Revision of all teacher education and 

certification programs and vocational the full

rehabilitation agencies to include training on

range of decision-making options for students 

who have reached the age of majority. As 

one former educator said: “Being a first-year 

teacher shouldn’t be the first time that I [am] 

learning about age of majority and 

guardianship [and alternatives] . . . [I]f the 

district itself is unaware or has varying views 

of student’s abilities to lead independent 

lives, then you are at the mercy of the vision 

of the school. 

The universities [are in] a powerful position to 

prime the teachers.”

 Training parents for school-to-adult transition 

and alternatives to guardianship. As one 

parent said: “When it comes to guardianship 

and alternatives, you don’t know what you 

don’t know.” 

 Promotion of self-advocacy and selfdetermination at an early age for students in 

special education. As one former educator 

said: “[Schools have] the power to promote 
36 National Council on Disability

self-determination as early as possible and 

that can be done by empowering the 

students to lead the [IEP and other] meetings

It puts them in a position of leadership and 

empowers them to take an active role. If the 

student has been passive throughout their 

entire education, maybe not

even attending the meeting, how would the 

team even know if the student could make a 

choice if they are not even empowered in 

participating and attending the [very] meeting 

that is planning their education?
National Council on Disability 37

Chapter 3: Unequal Treatment of People with ID/DD 

Under State Guardianship Law

ID/DD-Specific State Guardianship 

Laws 

ost states have a single guardianship 

law that covers people across 

disability categories, including older 

people with progressive cognitive decline, people 

with mental-health disabilities, and people with 

ID/DD. However, as recognized in the 2018 NCD 

report, there are states that have different 

statutory procedures, standards, and processes for 

appointing guardians for 

people with ID/DD, as 

compared to other 

populations that may need 

guardians. A list of these 

states and the main ways 

statutory distinctions apply 

to people with ID/DD is available in Appendix A of 

this report. 

Existing scholarship has mainly focused on the 

ID/DD distinctions in five states—California, 

Connecticut, Idaho, Michigan, and New York—

which have separate guardianship statutes for 

people with ID/DD versus those with other types 

of disabilities.

71 On paper, New York’s statute is 

one of the most striking. New York maintains two 

separate systems of guardianship for people with 

disabilities—i.e., Article 17-A of the Surrogate 

Court’s Procedure Act for people with 

developmental disabilities and Article 81 of the 

Mental Health Hygiene Law for all other people. 

Under the former, the basis for appointing a 

guardian is driven by diagnosis, rather than 

functionality. It also has less rigorous procedural 

requirements than Article 18 of the Mental Health 

Hygiene Law—e.g., a hearing on the guardianship 

petition is not required; the person with a disability 

does not have to be present; the guardianship 

cannot be limited; and guardians’ decisions are 

based on a “Best Interest,” 

rather than a Substituted 

Judgment, standard. 

Additionally, unlike many 

other statutes, New York’s 

statute allows a guardian 

appointed under it to make 

“any and all health care decisions” for the person 

with ID/DD. 

On the other side of the spectrum is Michigan, 

which has a guardianship statute for people with 

developmental disabilities that generally provides 

them with more statutory safeguards than people 

without such disabilities. For example, the 

Michigan developmental-disability-specific 

guardianship statute requires that guardianships be 

limited in scope to only that which is necessary 

because of the person’s actual mental and 

adaptive limitations. Partial guardianships are 

M

California, Connecticut, Idaho, 

Michigan, and New York... have 

separate guardianship statutes for 

people with ID/DD versus those 

with other types of disabilities.
38 National Council on Disability

preferred, but not required, and terminate after no 

more than five years.72

Apart from those states with entirely separate 

guardianship laws depending on a person’s 

diagnosis, there are other states that make other 

kinds of distinctions for people with ID/DD, as 

indicated in Appendix A. For example, some allow 

for a governmental agency or representative to be 

appointed guardian of a person with ID/DD (e.g., 

Hawaii, Minnesota, and South Dakota), or others

require additional court determinations (e.g., Iowa, 

with respect to voting rights) or clarify that an

ID/DD diagnosis alone should not govern the 

scope of a guardianship (e.g., Arizona). As 

discussed in the 2018 NCD report, some states 

have so-called “alternatives to guardianship” that 

are essentially still guardianships. For example, 

Florida has a legal process for “guardian 

advocates” that is referred to in its statute as a 

less-restrictive alternative to guardianship and is 

only available to people with particular 

developmental disabilities. Rather than requiring 

Florida’s standard determination of incapacity by 

an “examining committee” of experts, the judge

(who may not have any expertise with disability) 

may use educational evaluations, IEPs, and other 

support plans to determine whether the person 

has the capacity to retain at least one right, but 

“needs” a guardian advocate appointed to 

exercise other rights. If so, that guardian advocate 

will essentially have the duties and responsibilities 

as a guardian under Florida law without the person 

having the same due process safeguards. 73

Another example of the way in which some 

states relax due process protections for people 

with ID/DD—both expressly and indirectly—can be 

seen in Utah. Utah’s law does not require a court 

visitor to investigate the appropriateness of 

appointing a guardian, if the person involved has 

an intellectual disability or an intelligence quotient 

score under 25—which, on its face, would appear 

to discriminate against people with certain ID/DDs. 

Additionally, in 2016, the Utah legislature passed a 

law that created an exception to a person’s right to 

counsel when facing a guardianship petition. While 

not specifically referencing people with ID/DD, this 

law change made it easier for their parents to 

obtain guardianship over them and further 

bolstered the school-to-guardianship pipeline. The 

law was focused on the approximately 300 cases 

per year where parents seek guardianship over 

their adult children with disabilities in Utah state 

courts. 74 It eliminated the requirement that adults 

with disabilities have their own attorney when 

their parents petition the courts to be their legal 

guardians, their assets are less than $20,000, they 

appear in court with the petitioner, and they are 

“given the opportunity to communicate, to the 

extent possible, the person’s acceptance of the 

appointment of petitioner.” In July 2017, disability 

rights advocates filed legal action in federal court 

challenging the law on discrimination grounds. 75 In 

May 2018, the Utah Legislature amended this law 

to limit the applicability of the exception to the 

right to legal counsel and to require that, when it 

does apply, a court visitor, such as a social worker, 

be appointed to investigate and report to the 

court.76 In November 2018, the federal court 

lawsuit was settled. As part of the settlement, the 

Utah Administrative Office of the Courts and the 

Utah Judicial Council agreed to strengthen legal 

protections for adults with disabilities in 
National Council on Disability 39

guardianship proceedings by ensuring judges are 

informed about the importance and availability of 

legal representation in such proceedings, first 

explore less restrictive alternatives, and consider 

full guardianship as a last resort.77 However, 

Utah’s exception to the requirement of legal 

counsel in cases where parents are seeking 

guardianship over their adult children remains “on 

the books”, albeit in a modified form. 

The Impact for ID/DD Guardianship 

Statutes on People with ID/DD and 

U.S. Policy 

Stakeholders in the affected states express 

varying knowledge and opinions of the impact 

different statutes have on people with ID/DD. One 

family member in Michigan, who serves as coplenary guardian for her two sons with ID/DD, felt 

that the separate ID/DD law was a “good thing,” 

because she saw “the 

problems with guardianship

[as] varying a great deal for 

people who are elderly and 

people with [ID/DD],” since 

the former are more likely to 

have accumulated savings and property that can 

be exploited. Other Michigan stakeholders 

reported that the supposedly bolstered procedural 

safeguards of the ID/DD guardianship law were 

not playing out in practice. For example, the 

statute was designed to promote partial 

guardianships over plenary guardianships, with 

partial guardianships automatically expiring after 

five years. However, in some Michigan counties, 

stakeholders reported that partial guardianships for 

people with ID/DD are never ordered, while in 

other counties, so-called partial guardianships are 

so broad as to be, for all intents and purposes, 

plenary. One advocate described partial 

guardianship only preserving, for example, a 

person’s right to choose their own clothing. This 

would seem to suggest that the manner in which 

guardianship plays out for people with ID/DD has 

little to do with how the actual law is written. 

On the other hand, stakeholders in New York 

who commented on the different nature of the 

state’s ID/DD guardianship statute raised serious 

concerns about its disparate impact, with one 

arguing that people with ID/DD deserved “equal 

protections under the law,” and the other lauding a 

challenge to it on constitutional grounds. These 

concerns were forcefully brought to the fore in a 

2015 report of the Mental Health Law Committee 

and the Disability Law Committee of the New York 

City Bar Association, which unequivocally 

concluded that the 

separate New York 

guardianship law 

“discriminates against 

persons with intellectual 

and developmental 

disabilities, denies procedural and substantive due 

process to those for whom guardianship is sought, 

and over whom guardianship is imposed, fails to 

honor or promote autonomy, self-determination 

and dignity, and fails to protect persons under 

guardianship from abuse, neglect and 

exploitation.”78 The New York Olmstead Cabinet 

made similar conclusions and recommended 

guardianship reform on the basis of the Americans 

with Disabilities Act, finding that “[c]ommunity 

integration includes the ability of people with 

disabilities to make their own choices to the 

[T]he manner in which 

guardianship plays out for people 

with ID/DD has little to do with 

how the actual law is written.
40 National Council on Disability

maximum extent possible,” and that guardianship 

“should, consistent with Olmstead only be 

imposed if necessary and in the least restrictive 

manner.”79

Separate statutory guardianship schemes also 

may raise questions that 

are relevant to NCD’s 

upcoming report series on 

bioethics and disabilities. 

One of the more pertinent 

questions with respect to 

bioethics is whether the 

separate guardianship 

schemes for people with ID/DD will protect the 

right of people with ID/DD to make important 

decisions about their health to the same extent as 

people covered by non-disability specific 

guardianship statutes. Many modern guardianship 

statutes prohibit the 

guardian from consenting 

on behalf of the person 

under guardianship to 

certain drastic medical 

procedures, such as 

removal of an organ or 

commitment of the person 

to a nursing facility or 

institution.80 However, only 

some of the ID/DD-specific 

statutes prohibit guardians 

appointed under the subsection from making 

health care decisions that could permanently alter 

the health of the person under guardianship. For 

example, as noted in Appendix A, Connecticut’s 

ID/DD-specific statute prohibits both plenary and 

limited guardians from “removing a bodily organ,” 

except in accordance with statutory procedures to 

save the person’s life or protect the person’s 

physical or mental health. New York’s statute, by 

contrast, allows the guardian to make “any and all 

health care decisions” for the person with a 

disability if it is in the 

person’s best interests, 

which would include an 

organ transplantation or 

removal. New York’s highly 

permissive statute would 

appear to raise significant 

concerns as to whether the 

bodily integrity of persons under guardianship 

under its provisions is truly respected. 

Whether or not a state’s disability-specific 

guardianship statute does, in fact, make it easier to 

obtain guardianship over a person with ID/DD, the 

fact that some state law 

has different guardianship 

standards that apply to this 

population is concerning, 

since it still links the 

removal and transfer of 

rights to a person’s 

diagnosis. If, as a nation, 

we are to move away from

a diagnosis and medically 

driven system for 

guardianship toward the 

functionally driven approach that recognizes lessrestrictive options for all people with disabilities, 

we need to encourage a more uniform state 

approach, as endorsed by the Uniform 

Guardianship, Conservatorship & Other Protective 

Arrangements Act81 and the 2018 NCD report.82

One of the more pertinent 

questions ... is whether the 

separate guardianship schemes 

for people with ID/DD will protect 

the right of people with ID/DD to 

make important decisions about 

their health to the same extent as 

people covered by non-disability 

specific guardianship statutes.

New York’s highly permissive 

statute would appear to raise 

significant concerns as to whether 

the bodily integrity of persons 

under guardianship under its 

provisions is truly respected.
National Council on Disability 41

Chapter 4: U.S. Trends in Guardianship/Alternatives 

and People with ID/DD

The Guardianship Data Problem 

he 2018 NCD report recognized that 

national and state data on guardianship 

itself—let alone the demographics and 

type of disabilities of people subject to it—are 

scant to non-existent. Even identifying the number 

of active cases or their status is not possible in 

many states.83 Record keeping is frequently 

inconsistent or dated, and most states do not have 

centralized data collection 

or tracking systems. The 

2018 NCD report 

recommended that 

Congress and the 

Administration develop 

initiatives to produce 

effective and 

comprehensive data on 

guardianship. As one 

scholar said: “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 

guardianship in the state courts.” 84 In short, we 

collect data on issues that are important to us. 

Guardianship should be one of those issues, given 

its impact on the civil rights of people with 

disabilities and the potential impact on their ability 

to live, work, and participate in the community.

This project adopted a two-pronged approach to 

identify data-supported trends in guardianship and 

alternatives specific to people with ID/DD. First, it 

turned to National Core Indicator (NCI) data publicly 

available through the National Association of State 

Directors of Developmental Disabilities Services 

(NASDDDS) and the Human Services Research 

Institute (HSRI) NCI 

initiative. This data is the 

result of surveys across the 

nation of people with ID/DD 

who receive publicly funded 

services through the state 

and includes information 

about guardianship and life 

outcome measures. The 

results of that NCD’s 

examination are 

summarized in this chapter and Appendix B and C. 

Second, this project conducted a “deep dive” 

analysis of guardianship’s impact on people with 

ID/DD within the District of Columbia, the nation’s 

capital, including identifying and analyzing ID/DD 

specific data points that are not yet publicly 

available in other jurisdictions. The results of that 

analysis are summarized in Chapter 5.

T

“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 guardianship 

in the state courts.”
42 National Council on Disability

Review of National NCI Data 

National Core Indicators (NCI) 

(https://www.nationalcoreindicators.org/) are standard 

measures to assess the outcomes of services 

provided by public developmental disabilities 

agencies to adults with ID/DD. Indicators address 

key areas of concern including employment, rights, 

service planning, community inclusion, choice, and 

health and safety. Using the NCI website 

developed by HSRI and NASDDS, users can 

generate charts related to specific outcome 

measures with NCI data from the years 2008-09 

through 2015-16. Most importantly for the purpose 

of this report, the NCI Chart Generator can filter 

data by whether the person has a legal guardian or 

not. Users can also filter results by race, ethnicity, 

gender, age, and type of residence, among other 

key demographics. While not comprehensive of all 

persons with ID/DD in the United States, the NCI 

data is one of the only sources of nationwide data

on people with ID/DD and guardianship. 

NCD used the NCI Chart Generator to review 

relevant data from 2008-09 to 2015-16. We also 

reviewed the NCI In-Person Survey National Reports 

for 2016-17 and 2017-18, which were published by 

HSRI and NASDDDS in May 2018 and March 2019, 

respectively, and included NCI data points that are not 

available for filtering through the NCI Chart Generator. 

NCD’s review of this data by state is set forth in 

Appendix B as a table, which includes the percentage 

of people with ID/DD in guardianship (limited, full or 

the scope of which was undetermined) and the NCI 

Average by year from 2008 to 2018. While the 

District of Columbia and all U.S. states except Iowa, 

Montana, North Dakota, and West Virginia have 

participated in the NCI initiative, Alaska, Idaho, and 

Nebraska did not have guardianship-specific data 

available through the NCI Chart Generator. Relevant 

information relating to the state percentage of 

guardianships was available for Idaho in the 2016-17 

NCI In-Person Survey National Report and for 

Nebraska in the 2016-17 and 2017-18 NCI In-Person 

Survey National Reports.

As reflected in Appendix B, trending of NCI data 

sheds light on the prevalence of guardianship across 

participating states:

 The reported percentage of people with 

ID/DD in guardianship (full, limited, or of 

undetermined scope) varies widely between 

states. In 2017-18, the highest were 

Nebraska (89 percent), Connecticut (84

percent), Missouri (82 percent), Michigan (81 

percent), and North Carolina (75 percent), and 

the lowest were Delaware (5 percent), South 

Carolina (9 percent), Georgia (16 percent), 

Louisiana (16 percent), and Pennsylvania (18 

percent). In 2017-18, most people with 

ID/DD surveyed in 20 of the 36 participating 

jurisdictions included in the 2017-18 NCI InPerson Survey National Report that year had 

guardians. 

 The overall average of state percentages of 

people with ID/DD in some form of 

guardianship has ranged between 45 and 55 

percent annually across the ten years of NCI 

data reviewed. The NCI Averages of cases of 

guardianship across participating states 

ranged between 43 and 53 percent annually 

during that ten year time period. Of the 17 

states that have NCI data available from both
National Council on Disability 43

the 2008-09 and 2017-18 reporting periods, 

most had guardianship percentage increases, 

some of which were relatively small – i.e., 

Alabama (1 percent), South Carolina (2 

percent), Ohio (6 percent), Pennsylvania (6 

percent) – and others that were more 

significant – i.e., New York (10 percent), 

Wyoming (11 percent), Arkansas (12 

percent), North Carolina (12 percent), 

Connecticut (14 percent), and Indiana (19 

percent). Three states – Louisiana, Missouri, 

and Oklahoma – had no change in the 

percentage of people with ID/DD in 

guardianships in 2008-09 compared to the 

percentage in 2017-18. Five states had 

decreases in the percentage of people with 

ID/DD in guardianship, four of which were 

relatively modest – i.e., Massachusetts 

(minus 2 percent), Georgia (minus 5 percent), 

Kentucky (minus 8 percent) and Illinois 

(minus 8 percent). Based solely on those 

two-years-worth of NCI data, Delaware had 

the most significant decrease – minus 24 

percent.

 Based on the individual states’ averages, 

when a person is in guardianship, most are 

full guardianships. Only California and the 

District of Columbia regularly had more 

limited guardianships than full guardianships. 

However, that trend changed for the District 

of Columbia in the years 2016-17 and 2017-

18, when the percentage of full guardianships 

became slightly higher than limited ones.

Percentage of people with ID/DD in 

limited or full guardianship 

 

In 2015-16, the highest percentages of people 

with ID/DD in limited or full guardianship were:

• Connecticut (83 percent)

• Missouri (80 percent),

• Maine (77 percent)

• Vermont (77 percent) 

and the lowest percentages of people with ID/DD 

in limited or full guardianship were: 

• Louisiana (13 percent)

• Georgia (16 percent)

• Pennsylvania (18 percent)

In terms of the five states that apply entirely 

separate guardianship statutes to people with 

ID/DD, two were well under the overall state 

average percentage of 49 percent—namely 

California (overall annual average of 23 percent) 

and New York (overall annual average of 32

percent). The other three—namely Idaho (overall 

annual average of 58 percent) Michigan (overall 

annual average of 76 percent) and Connecticut 

(overall annual mean of 80 percent) were well 

above that overall state average. This suggests 

that whether a person with ID/DD is under 

guardianship may have very little to do with the 

type of guardianship law that is applied to them. 

Appendix C tabulates additional NCI 

guardianship data by gender, and race/ethnicity

and was developed by NCD through the use of the 

NCI Chart Generator, which is currently limited to 

data from 2008-09 through 2015-16. NCD’s review 

of that data indicates that here is no significant 
44 National Council on Disability

difference between the percentage of male and 

female participants who have guardians (annual 

average 48 percent versus 49 percent), but the 

percentage of people with ID/DD who have 

guardians was highly 

variable by race and 

ethnicity. There is no 

significant difference 

between the percentage of 

male and female 

participants who have guardians (annual average 

48 percent versus 49 percent), but the percentage 

of people with ID/DD who have guardians was 

highly variable by race and ethnicity. 

After this report was nearly completed in April 

2019, NASDDDS and HSRI, in partnership with the 

University of Missouri, Kansas City, released a

report, “What Do NCI Data Reveal About the 

Guardianship Status of 

People with IDD?” 

(“NASDDDS/HSRI/UMKC 

Report”).85 This report 

included an analysis of new 

data from the NCI 2017-18 

In-Person Survey National 

Report, which was published in March 2019 and 

includes data not currently available through the 

public NCI Chart Generator, and raised resulting 

policy questions, as well as promising practices. 

Among other findings, the NASDDDS/HSRI/UMKC 

report analyzed the demographics of people with 

ID/DD surveyed, based on their guardianship 

status. Findings trended by race included: 

 People with ID/DD surveyed who are White 

were significantly more likely to be in 

guardianship (46.4%) than people who were 

Black (34.2%) or Hispanic (26.3%). 

 People with ID/DD surveyed who are Black 

and have a guardian were significantly more 

likely to have a public 

guardian or public 

administrator as a guardian 

(18.4%) than people who are 

White (11.2%) or Hispanic 

(4.3%).

 People with ID/DD surveyed who are 

Hispanic were significantly more likely to 

have a family member as guardian (91.1%) 

than people who are Black (71.6% or White 

(81.6%).86

Appendix C also has additional NCI 

guardianship data by age. For example, from 2008-

16, roughly 50 percent of people with ID/DD 

between ages 18-74 had 

guardians, and this did not 

vary much between 18- to 

34-year-olds (50 percent), 

35- to 54-year-olds (48 

percent), and 55- to 74-

year-olds (48 percent). 

Based on the annual average, people with ID/DD 

who are 75 years or older were more likely not to 

have a guardian (71 percent). For its 2015-16 data 

collection, the NCI initiative broke down the 18- to 

34-year-old category into two subcategories—18-

to 22-year-olds and 23- to 34-year-olds. Based on 

the 2015-16 NCI average, 18- to 22-year-olds were 

the most likely of all the age groups that year to be 

in guardianship (58 percent). In addition, the 2015-

16 NCI average percentage of people with ID/DD 

[T]he percentage of people with 

ID/DD who have guardians was 

highly variable by race and 

ethnicity.

Based on the new 2015-16 NCI 

Average, 18- to 22-year-olds were 

the most likely of all the age

groups that year to be in 

guardianship (58 percent).
National Council on Disability 45

75 years or older without guardianship (52 percent) 

was notably lower than the 2008-15 NCI average 

(71 percent).

NCI data, however, does not necessarily provide 

a complete picture of guardianship for people with 

ID/DD in all the participating states. For example, 

based solely on NCI data, Missouri has consistently 

been the state with one of the highest percentage of 

people with ID/DD under guardianships (ranging from 

80 percent in 2015-16 and 2016-17 to 87 percent in 

2009-10 and 2013-14). However, each state 

participating in the NCI initiative decides what

population of people with ID/DD it surveys, and 

most do not survey all 

people with ID/DD in the 

state. According to 

stakeholder interviews, 

Missouri conducted NCI 

surveys of people with 

ID/DD receiving 

Individualized Supported 

Living and Residential 

Services. Therefore, if 

some people with ID/DD in 

Missouri receive different services (such as 

individual supports, self-direction services, or 

employment services) or no services, they would 

not be included as part of the NCI data set. To 

obtain a clearer picture of guardianship data, in 

September 2018, the Missouri Department of 

Mental Health’s Division of Developmental 

Disabilities conducted an initial data analysis of all 

its Medicaid HCBS Developmental Disabilities 

Waivers, except for autism services. It determined 

that the percentage of people with ID/DD served 

under these waivers who had guardians and/or 

conservators was approximately 50 percent—

which is much lower than indicated by NCI data.

In addition, some states may have existing 

NCI data relevant to guardianship that is not within 

the NCI Chart Generator or the In-Person Survey 

National Reports. For example, Alaska was one of 

the states for which guardianship-specific data is 

not included in either of those resources. 

However,the 2015-16 Alaska NCI Adult Family 

Survey Final report indicatesthat 100% of the the 

family members with ID/DD are under limited or 

full guardianship, and 96% of these individuals are 

under full guardianship. 87 Based on stakeholder 

interviews, that startling 

statistic is far above that of 

any of the states listed in 

Appendix B and reportedly 

led local advocates to push 

for legislation, making 

Alaska the first state to 

allow people with guardians 

to execute SDM 

Agreements with the 

permission of their 

guardians. 88 The reported reasoning was that 

Alaska should not leave such a large percentage of 

people with ID/DD behind in its reform efforts to 

recognize and promote decesion-making rights. In 

addition, SDM agreements of this kind may serve 

as a gateway for people to work with their 

guardians toward rights restoration and greater 

independence.

Even with the acknowledgment of its limitations, 

NCI data can provide indicia of the possible impact of 

guardianship in the lives of people with ID/DD. For 

example, the NASDDDS/HSRI/UMKC Report 

NCI data, however, does not 

always provide a complete picture 

of guardianship ... [E]ach state 

participating in the NCI initiative 

decides what population of people 

with ID/DD it surveys, and most do 

not survey all people with ID/DD in 

the state.
46 National Council on Disability

analyzed outcomes for people with ID/DD with and

without guardians, based on the most recent 2017-

18 NCI data. The report found that NCI respondents 

without guardians are less likely to live in their own 

homes or apartments, be included in the community, 

have their rights respected, have community jobs or 

service plans with that goal, be supported to 

communicate with friends, go on dates or marry, and 

be involved in making 

choices about their own lives 

(e.g., where and with whom 

to live, who their support 

staff or case managers are, 

what their schedule looks 

like, what to do during their 

free time or during the day, 

and what to buy with 

spending money. 89

NCI data also can be used to explore whether or 

not people with ID/DD who have guardians are more 

or less likely to live in restrictive environments than 

those who do not. Scholars have disagreed as to 

whether people with guardians are predisposed or 

disproportionately subject to institutionalization. 

Some argue that they are,90 pointing to studies done 

of residential decisions made by a sample of state 

public guardianship programs.91 Others disagree,92

citing studies indicating that guardianship may 

delay institutionalization, although ultimately not 

prevent it. NCI data indicates that the answer to 

this question may be more nuanced for people 

with ID/DD. In the NASDDDS/HSRI/UMKC Report, 

the most recent 2017-18 NCI data indicated that 

NCI respondents in guardianship were significantly 

more likely to live in group residential facilities and 

less likely to live in their own home/apartment.93 

However, that report also 

found that respondents in 

guardianship were not 

more or less likely to live in 

an ICF/IDD, nursing facility, 

or other institutional setting 

than those who were not 

under guardianship.94 --

which is contrary what 

NCD found within older 2015-16 NCI data (see 

Table 6 of Appendix C).

Ultimately, any NCI data correlation between 

guardianship and institutionalization does not get to 

the core question of whether it is guardianship itself 

that led to the person living in a more restrictive 

residential environment. The answer is more 

complicated than that and likely dependent on other 

factors such as whether a state’s service delivery 

systems or supports appropriately promotes 

community living for people with disabilities.

[A]ny NCI data correlation 

between guardianship and 

institutionalization does not get to 

the core question of whether it is 

guardianship itself that led to the 

person living in a more restrictive 

residential environment.
National Council on Disability 47

Chapter 5: Guardianship & People with ID/DD: A Story 

from the Nation’s Capital

Introduction 

ho is filing guardianship petitions 

over people with ID/DD? Are 

suspicions of a “school-toguardianship” pipeline for people with ID/DD 

borne out in actual guardianship data? Do people 

with ID/DD in guardianship ever seek to have their 

rights restored? Data-supported answers to these 

and other more granular questions impacting 

people with ID/DD are not available for the United 

States as a whole. Therefore, this project turned to 

the local level by undertaking an in-depth 

examination and analysis of the experience of 

people with ID/DD who live in Washington, DC. 

The District of Columbia is a prime place for 

such an examination. The treatment of the 

decision-making rights of DC citizens with ID/DD 

has recently been highlighted on the national 

stage. During recent U.S. Supreme Court justice 

confirmation hearings, repeated references were 

made to a 2007 U.S. Circuit Court for the District 

of Columbia decision, Doe ex rel. Tarlow.

95 This 

court decision was condemned by several 

disability rights organizations96 for not respecting 

the wishes of all of DC’s citizens with ID/DD with 

respect to their own medical care. In addition, this 

case highlights the way in which the DC 

government used to consent to elective surgeries, 

including abortions, for certain DC citizens with 

ID/DD without attempting to ascertain their 

wishes. Since that time, DC laws and 

governmental practice impacting the decisionmaking rights of people with ID/DD improved in 

significant ways. However, that concerning history 

remains in the minds of many local advocates and 

DC residents with ID/DD. As one DC advocate 

with ID/DD said with respect to the Doe decision: 

“Nothing about us without us.”97 

In addition, from a data gathering standpoint, 

identifying and tabulating guardianship cases that 

specifically involve people with ID/DD, rather than 

other disabilities, is easier in DC than in other 

larger jurisdictions, because DC has only one court 

branch with authority over guardianship matters. 

DC also has a computerized system, with court 

filings and other information publicly available for 

review. In addition, the DC Department on 

Disabilities Services is legislatively required to 

gather information on decision-making supports 

used by the people with intellectual disabilities98

that it serves. DC also has recently undergone 

promising legislative and policy reform, designed 

both to bolster due process rights for people 

facing or in guardianship and to promote 

alternatives to guardianship for adults with 

disabilities in special education and beyond. This 

presented an opportunity to find out whether 

these reforms have yet resulted in meaningful

W
48 National Council on Disability

outcomes for residents with ID/DD in the nation’s 

capital, and, if so, whether DC’s local approach can 

inform federal-level policy recommendations and 

serve as a model to other states.

 

Why NCD picked DC for an in-depth 

examination of guardianship 

• DC has only one court branch with authority over 

guardianship matters, making it easier to identify 

and tabulate cases that specifically involve people 

with ID/DD. 

• DC has a computerized system with court filings 

and other information publicly available for 

review. 

• The DC Department on Disabilities Services is 

required to gather information on decision-making 

supports used by the people with ID that it 

serves. 

• DC recently underwent promising reform 

designed to bolster due process rights for people 

facing or in guardianship and to promote 

alternatives to guardianship.

Key DC Legislative and Policy Reform 

Legislative Reforms for Adult

Guardianship Proceedings

In its guardianship law, DC has several longstanding safeguards and due process protections. 

For example, people facing or in guardianship have 

an established right to 

counsel, both in the initial 

and post-appointment court 

proceedings, such as 

restoration cases.99 Even if 

a person is found by the 

court to be “incapacitated,” a guardian may not be 

appointed unless it is “necessary as a means for 

providing continuing care and supervision of the 

person,” which allows for court consideration of 

less-restrictive alternatives to guardianship. The 

law also states that incapacity must not be inferred 

from the fact that a person has an intellectual 

disability.100 The law further provides for scopelimited and time-limited guardianships and requires 

the court to “exercise [its] authority ... so as to 

encourage the development of maximum selfreliance and independence of the incapacitated 

person.”101 When the court appoints a guardian, it 

must be “the type of guardianship that is least 

restrictive to the incapacitated individual in 

duration and scope, taking into account the 

[person’s] current mental and adaptive limitations, 

the [person’s] ability to improve his or her 

condition, or other conditions warranting the 

appointment.”102 General and limited guardians are 

generally required to make decisions for the 

person using the substituted judgment standard103

and to include the person “in the decision-making 

process to the maximum extent of the [person’s] 

ability” and “encourage the [person] to act on his 

or her own behalf whenever he or she is able to do 

so, and to develop or regain capacity to make 

decisions in those areas in which he or she is in 

need of decision-making assistance, to the 

maximum extent possible.”104

However, local 

disability rights advocates 

have raised concerns 

regarding how the due 

process protections within 

the DC guardianship law 

have been translated in practice for residents with 

disabilities.105 Related advocacy led to the DC 

Guardianship Amendment Act of 2014,106 which 

went into effect in March 2015. In addition to 

other reforms, it bolstered the due process rights 

The [DC] law also states that 

incapacity must not be inferred 

from the fact that a person has an 

intellectual disability.
National Council on Disability 49

of people in guardianship proceedings in two main 

ways. First, the Act requires attorneys who 

represent people in or facing guardianship to 

zealously advocate for their client’s expressed

wishes. If the person is completely incapable of 

expressing such wishes concerning guardianship, 

then the attorney must advocate for a result that is 

least restrictive of the person’s liberty and 

consistent with the person’s interests as 

determined by a guardian ad litem.107 This 

amendment was designed to counteract a 2010 

DC Court of Appeals decision, In re 

Martel,108 which held that the original guardianship 

statute’s wording allowed an attorney to meet his 

or her obligation by advocating for what a guardian 

ad litem determined was in the person’s 

“legitimate interests,” even if the client disagreed. 

Second, the Act mandated 

periodic court review of 

guardianships established 

after January 1, 2015, to 

determine whether the 

guardianship continue to be 

the least restrictive option 

or whether it should instead be modified or 

terminated.109 The reviews occur every three 

years, after an investigation and report by a case 

reviewer, who is a social worker assigned through 

DC’s Guardianship Assistance Program. That 

investigation must include an updated medical or 

psychological information about the current 

capacity of the person in guardianship, as well as 

the person’s expressed preferences about the 

scope and duration of the guardianship and their 

opinion of the guardian. The law also requires a 

court hearing to be held if the person in 

guardianship requests one or if the case reviewer 

recommends the guardianship be modified or 

terminated or the guardian be removed. 

DC WINGS Complaint Process and 

Trainings on Alternatives to 

Guardianship

In 2015 and 2016, as a result of the efforts of the 

DC Working Interdisciplinary Network of Guardianship 

Stakeholders (WINGS) initiative,110 led by the DC 

Courts, other steps were taken to improve the 

guardianship system in DC. In addition to its efforts to 

improve public education on guardianship through the 

court website, brochures, and videos, DC WINGS 

developed a new complaint process, by which anyone 

can raise concerns about guardians and conservators 

that are appointed with the court. When such a 

complaint is submitted, the Court may take several 

actions, including appointing a 

social worker to investigate 

the case, referring the case 

for mediation, holding a 

hearing, or referring the 

complaint to a law 

enforcement agency,111

among others. 

In the fall of 2015, DC WINGS also provided 

training to attorneys and other legal stakeholders to 

reinforce that guardianship was the option of last 

resort, ensure alternatives to guardianship were 

understood, and improve understanding of capacity 

assessments. The trainings included discussion of the 

full range of decision-making options then available in 

DC, including SDM, advance directives, powers of 

attorney, representative payees, and substitute health 

care decision-makers under DC Code 21-2210 (“21-

2210 Medical Decision-Makers”), among others. 

DC WINGS developed a new 

complaint process, by which 

anyone can raise concerns about 

guardians and conservators that 

are appointed with the court.
50 National Council on Disability

DC Special Education Reforms to 

Promote Alternatives to Guardianship

In DC, while general education students 

typically graduate from high school by the age of 

18, students in special education have the right to 

remain in school until the end of the semester in 

which they turn 22 years old.112 Under DC law, 

when students turn 18, their parents’ rights under 

the Individuals with Disabilities Education Act 

(IDEA) automatically transfer to the student, unless 

a court has found that the adult student is 

incompetent.113 This process is referred to as the 

“transfer of rights,” and it 

frequently triggers 

discussions about 

guardianship. As one DC 

disability rights advocate 

said: “In my experience 

working with transition-age 

students with ID/DD, I have 

seen a bias by schools and 

support teams to use the transfer-of-rights process 

to push parents towards going to court to get 

guardianship over their adult child, rather than first 

exploring less-restrictive decision-making options, 

like powers of attorney and supported decisionmaking. Because of this institutional bias within 

[the] disability service delivery system, we have 

had to expend much effort and energy on 

counseling and supporting families to understand 

that guardianship is not the only option available.” 

In 2012, a coalition of DC disability rights 

advocates issued a call of action against the 

Transfer of Rights Guidelines of the DC Public 

Schools (DCPS).114 These March 2010 guidelines 

failed to inform parents and students about lessrestrictive alternatives to guardianship, such as 

educational powers of attorney or SDM, instead 

presenting the issue as a dichotomous choice 

between the students exercising their IDEA rights 

completely by themselves or their parents seeking 

guardianship if they wanted to remain involved in 

educational planning.115 In addition, DCPS was 

taking the position at some administrative hearings 

that students in special education could not 

delegate their IDEA rights to their parents or 

caregivers through the use of educational powers 

of attorney, despite the fact that District law 

expressly allowed parents 

to delegate rights and 

responsibilities for all 

school-related matters 

when their child was a 

minor.116 As a result of 

this community advocacy 

effort, in August 2013, 

DCPS amended its 

Transfer of Rights Guidelines117 to expressly 

recognize SDM and, also developed a standardized 

form118 by which such arrangements by adult 

students in special education can be documented. 

In addition, DCPS began an initiative to introduce 

SDM, beginning in pre-kindergarten, to teach 

“students how to build networks of support early 

to ensure that [they] are familiar with the process 

and utilize it in day-to-day activities.”119 

Alternatives to guardianship for adult special 

education students were also included in 

comprehensive special education reform legislation 

that was passed by the DC legislature in late 2014. 

The DC Special Education Student Rights Act of 

2014,120 which went into effect in March 2015, 

DCPS began an initiative to 

introduce SDM, beginning in prekindergarten, to teach “students 

how to build networks of support 

early to ensure that [they] are 

familiar with the process and 

utilize it in day-to-day activities.”
National Council on Disability 51

affirmed that students who have reached the age of 

18 have the right to receive support from another 

adult to aid them in their decision-making.121 In so 

doing, it extended DCPS’ formal recognition of SDM 

to all schools in DC, including public charter schools. 

The Act also affirmed the right of adult students in 

special education to execute educational powers of 

attorney122 and required the DC Office of the State 

Superintendent of Education (OSSE) to create a new 

alternative to guardianship for students who were 

unable to make educational decisions—even with 

support—or to knowingly and voluntarily execute a 

power of attorney.123 This new alternative became 

known as an Educational Representative. The Act 

also required parents be notified of the transfer-ofrights, as well as all these alternatives to 

guardianship, no less than one year before the 

student turned 18 years old.124

In July 2016, OSSE implemented regulations 

for this Act125 and issued a model SDM form that 

can be used by all schools, whether they are 

connected to DCPS or not.126 Among other things, 

the regulations describe how the Educational 

Representative process works. An Educational

Representative is someone, usually a parent, 

appointed by OSSE to make educational decisions 

for an adult student who is unable to make those 

decisions, even with support, and it does not 

require court involvement. A parent or other 

interested adult may submit to OSSE the request 

for appointment, along with two signed 

professional certifications of the student’s 

incapacity to make educational decisions. If all its 

rules are met, OSSE will then appoint the 

Educational Representative and provide notice of 

the appointment to the parents, student, and 

school. The notice describes the steps that the 

student may take to challenge the appointment; 

and the school is required to give a copy of the 

notice and explain it to the student. If the student 

objects, then the certifications are invalidated, and 

all educational rights transfer back to the 

student.127 

However, respondents that were interviewed 

raised questions about whether information about 

the full continuum of decision-making support are 

really making its way from schools to students and 

families. For example, one parent reported that, 

coordinators at public charter schools and DCPS 

do not have a full understanding of the impact of 

guardianship or the availability of alternatives such 

as powers of attorney and SDM: “Maybe a handful 

out of the 200 or so that are out there [do] . . . We 

really do need to get [them] . . . much, much more 

comfortable in explaining the difference or at least 

pointing parents in the right direction [when 

students are] 15, 16 . . . in their IEP [meetings]. I 

think they really need to ramp up the trainings .I 

know it’s a very low-priority level, unfortunately, 

but I think that they are the ones who are going to 

open the door of understanding to the parents.”

Reforms Recognizing Supported 

Decision-Making Across the Life Span 

On September 21, 2015, the Chairman of the 

DC Council, at the request of the DC Mayor, 

introduced Bill 21-0385, the Citizens with 

Intellectual Disabilities Civil Rights Restoration Act 

of 2015. This bill, among other things, proposed to 

formally recognize SDM across the life span 

through the codification of a SDM agreement form 

and was drafted under the leadership of the DC 

Department on Disability Services. Although it did 
52 National Council on Disability

not pass the DC Council that legislative session, 

the introduction of Bill 21-0385 started a broader 

dialogue about SDM that made lawmakers, 

governmental agencies, and the public more 

familiar with the concept and how it could be 

operationalized in DC. The legislation was 

reintroduced on March 3, 

2017, in a modified form, 

as Bill 22-0154, now known 

as the “Disability Services 

Reform Amendment Act of 

2018.” It passed the DC 

Council on February 28, 2018, and became law 

effective May 5, 2018, making DC the fourth 

jurisdiction in the United States to codify SDM 

agreements.128

This law change was preceded in October 

2016 by the first DC case to terminate a 

guardianship in favor of SDM.129 The case involved 

Ryan King, a person with ID/DD whose victory was 

showcased in the 2018 NCD report and shown a 

spotlight on SDM locally and nationally. In addition, 

DC’s 2016 Olmstead Plan—which is a way for 

states to document their plans to provide services 

to people with disabilities in the inclusive and 

integrated settings, pursuant to the Americans 

with Disabilities Act (ADA)—recognized that: 

“Guardianship is often seen as the only option for 

parents of children with disabilities rather than selfdetermination and supported decision-making.” To 

combat this, it included governmental action steps 

that required the 

development and 

implementation of longterm care competency 

criteria, standards, policies, 

and protocols on the 

“consistent use of person-centered approaches to 

service and planning, including using principles of 

supported decision-making.”130

By the Numbers: Guardianship and 

DC Residents with ID/DD 

Data Collection Initiative at the DC 

Probate Branch

Using publicly available information from the DC 

Probate Branch, this project gathered key data points 

for the over 1,500 new guardianship cases opened 

over the course of 2015-17 and identified the subset 

of cases where the alleged disability was ID/DD. 

There are several trends that are worth highlighting. 

This law change was preceded in 

October 2016 by the first DC case 

to terminate a guardianship in 

favor of SDM.
National Council on Disability 53

The number of new guardianship petitions for 

people with ID/DD, as well 

as their percentage 

compared to overall 

guardianship petitions filed, 

has generally decreased over 

the course of the three-year 

period. While there are many 

reasons why this is the case, 

the timing of the decrease 

coincides with the public 

dialogue surrounding the 

SDM bill that was first 

introduced in the DC 

legislature in 2015, as well as the DC WINGS 

trainings on alternatives to guardianship. 

Most of the petitions were filed by family members. 

Others were submitted by government agencies, 

including Adult Protective 

Services (APS), the 

Department on Disability 

Services, and Child and 

Family Services. In a handful 

of cases, the person’s own 

attorney or guardian ad litem 

from another matter, such 

as an eviction proceeding, 

filed the petition. The overall

percentage of family 

guardianship petition filings 

increased over the threeyear period, which speaks to a need for targeted 

outreach to that population to ensure they are fully 

aware of less-restrictive options.

0

200

400

600

2015 2016 2017

Number of Guardianship 

Petitions

Overall Guardianship Petitions

People with other disabilities

People with ID/DD

0

5

10

15

20

2015 2016 2017

% New ID/DD Guardianship 

Cases

% of New ID/DD Cases

The number of new guardianship 

petitions for people with ID/DD, as 

well as their percentage compared 

to overall guardianship petitions 

filed, has generally decreased ... 

[T]he timing of the decrease 

coincides with the public dialogue 

surrounding the SDM bill ... as 

well as the DC WINGS trainings 

on alternatives to guardianship. 
54 National Council on Disability

Guardianship Petitioners for ID/DD Cases

The majority of ID/DD 

guardianship petitions are 

for transition-age adults, 

indicating that there is 

indeed some form of 

pipeline to guardianship for 

that population in DC. 

While the number of cases 

for that age group has dropped since 2015, their 

percentage of the overall number of guardianship

petitions involving people 

with ID/DD has steadily 

increased. This is a 

troubling finding, as it 

suggests that the special 

education reforms to 

promote alternatives to 

guardianship may not yet 

be having an impact on the ground for youth with 

ID/DD. 

2015

Family Members (50%)

Government (42%)

Hospitals (4%)

Other (4%)

2016

Family Members (67%)

Government (18%)

Hospitals (6%)

Other (8%)

2017

Family Members (61%)

Government (31%)

Hospitals (6%)

Other (2%)

The majority of ID/DD 

guardianship petitions are for 

transition-age adults, indicating 

that there is indeed some form of 

pipeline to guardianship for that 

population in DC.
National Council on Disability 55

These data-driven concerns regarding ineffective 

implementation of promising special education agency 

policy and procedures are consistent with what the 

project learned from interviews with personnel at 

DCPS and OSSE. Currently, these agencies reportedly 

do not comprehensively track the use of alternatives 

to guardianship, such as SDM, educational powers of 

attorney, or educational representatives, by adult 

students in special education. Although several of their 

trainings incorporate the concept of SDM, there 

reportedly have been no standalone trainings on that 

topic presented by these agencies, other than those 

periodically offered by local disability rights 

organizations. 

0

5

10

15

20

25

30

35

40

2015 2016 2017

Number of ID/DD Guardianship Cases by Age

22 or younger 23-54 55-64 65 or older

0

10

20

30

40

50

2015 2016 2017

Percentage of ID/DD Guardianship Cases By Age

22 or younger 23 - 54 55-64 65 or older
56 National Council on Disability

Most of the people with ID/DD who faced 

guardianship petitions were placed under 

guardianship by the court. The percentage did 

decrease somewhat from 2015-16, which may be 

attributed, in part, to the court education efforts to 

attorneys and legal professionals on the availability of 

alternatives to guardianship. However, the 

percentage increased slightly in 2017, which 

underlines the need for continued training efforts by 

the court.

When the petitions were granted, most of the 

individuals with ID/DD were placed under permanent 

general guardianship, the most restrictive form. This 

data raises questions about whether courts are using 

guardianship as the last resort and whether they are 

consistently appointing the type of guardianship that 

is least restrictive in duration and scope to meet the 

person’s needs. It may also indicate persistence in 

stereotypes about people with ID/DD and their ability 

to be independent with supports, which could lead 

courts to weigh heavily toward full guardianship 

instead of alternatives.

82

84

86

88

90

92

94

96

2015 (93%) 2016 (88%) 2017 (90%)

Percentage of Guardianship Petitions in ID/DD Cases Granted (in 

whole or in part)

Percentage of Guardianship Petitions in ID/DD Cases Granted (in whole or in part)
National Council on Disability 57

The review also indicated that the people with 

ID/DD in the data set did not seek to have their 

guardianships reviewed, either through a petition 

post-appointment for restoration of rights or 

through the new court 

guardianship/conservatorship complaint process. 

There was not a single 

complaint filed in these 

cases. There were only 

three petitions postappointment requesting 

restoration of rights, and 

none of them were filed by 

the person under 

guardianship. However, all 

three were successful and 

the individual’s rights were restored. More 

education on these due process options for people 

with ID/DD and their support networks is likely 

needed, particularly with respect to the complaint 

process, which has only been in existence for a 

few years. Careful these consideration should also 

be given to ensure that tools are sufficiently 

accessible to and navigable by people with ID/DD. 

Pursuant to the DC Guardianship Amendment 

Act, the first year of court triennial case reviews 

began in 2018. For this project’s data set, 21 such 

reviews occurred for people with ID/DD through 

the Guardianship 

Assistance Program. Only 

two of the individuals 

involved were appointed an 

attorney to help them 

navigate the process, and 

none of the reviews 

resulted in restoration of 

rights. While a periodic 

review of the continued 

necessity of guardianship is a promising DC 

reform, more time and analysis are needed to 

determine whether it will have a concrete impact 

on people with ID/DD under guardianship and 

whether it will result in any restoration of rights for

them. 

Type of Guardianship Granted in ID/DD Cases

2015

Permanent General Guardianship

(87%)

Limited Permanent Guardianship

(13%)

Temporary Guardianship (0%)

2016

Permanent General Guardianship

(84%)

Permanent Limited Guardianship

(7%)

Temporary Guardianship (7%)

2017

Permanent General Guardianship

(90%)

Permanent Limited Guardianship

(7%)

Temporary Guardianship (2%)

While a periodic review of the 

continued necessity of 

guardianship is a promising DC 

reform, more time and analysis 

are needed to determine ... 

whether it will result in any 

restoration of rights...
58 National Council on Disability

Data from the DC Department on 

Disability Services on Guardianship 

and Alternatives 

Under DC Law 17-249, the “Health-Care 

Decisions for Persons with Developmental 

Disabilities Amendment Act of 2008,” the 

Department on Disability Services (DDS) is required 

to submit to the Council of the District of Columbia 

(DC Council) an annual report and plan assessing the 

current and potential health care decision-making 

needs for all people served by DDS,131 which 

includes DC residents with intellectual disabilities. 

0

10

20

30

40

50

FY 2013 FY 2014 FY 2015 FY 2016 FY 2017 FY 2018

Type of Decision-Making Support Used By People with Intellectual 

Disabilities Served by DC DDS (Percentages)

Independent Decisions Supported Decision-Making

Durable Power of Attorney 21-2210 Medical Decision-Maker

Limited Medical Guardian or DC Equivalent General Guardian or DC Equivalent

Other (Presumed Capacity/Under Review)

Overall Annual Average Percentages for the Type of 

Decision-Making Support Used by People with 

Intellectual Disabilities Served by DC DDS (FY 2013 to 2018)

Independent Decisions (14.4%) Supported Decision-Making (3.8%)

Durable Power of Attorney (0.3%) 21-2210 Medical Decision-Maker (37.5%)

Limited Medical Guardian or DC Equivalent (15.0%) General Guardian or DC Equivalent (15.8%)

Other (Presumed Capacity/Under Review) (13.3%)
National Council on Disability 59

This report includes data on the type of decisionmaking support used, including SDM, Durable Power 

of Attorney, 21-2210 Medical Decision-Maker, 

Limited Medical Guardian, and General Guardian. 

DDS has described the data as a “snapshot,” “an 

approximation, because the numbers fluctuate from 

day to day as individual needs continue to change.” 

However, the data tells an interesting story about the 

type of decision-making support that is being legally 

recognized as used by this population. 

While the number of people with intellectual 

disabilities identified as using SDM has increased 

over the past five years (from 75 to 111), it has 

consistently remained the 

second least-used decisionmaking support with the 

DDS intellectual disability 

system. With the May 2018 

statutory recognition of SDM 

across the lifespan, this 

statistic may change in the future.

As the data shows, the most common form of 

decision-making support used by people with 

intellectual disabilities served by DDS is a 21-2210 

Medical Decision-Maker (MDM). In DC, when a 

person does not have a durable power of attorney for 

health care and has been certified to lack the mental 

capacity to make health care decisions by both a 

qualified medical doctor and a psychiatrist or 

psychologist, the law turns to a prioritized list of 

individuals to make those decisions for the person 

under DC Code 21-2210 of the DC Health Care 

Decisions Act. For the purpose of DDS’ statistics, 

these 22-2210 MDMs are generally family members 

or friends who have not been appointed as the legal 

guardian by the court. The advantage of this law is 

that it allows the person to receive the health care he 

or she needs without having to go to court and risk 

having all his or her other non-medical-related 

decision-making rights taken away in a guardianship 

proceeding. The downside is that the law requires 

non-judicial certifications of the person’s incapacity to 

make health care decisions and does not provide a 

clear way for the person to challenge the 21-2210 

(MDM) designation.132 In its most recent report, DDS 

states: “those listed as having a §21-2210 SDM may 

make many of their own decisions, with or without 

support, and may simply rely on the designated § 21-

2210 SDM in certain situations.” 

According to this data, 

the least common form of 

decision-making support 

used by people with 

intellectual disabilities served 

by DDS is durable powers of 

attorney, with consistently 

less than 1 percent of the people served having one 

that DDS knows about. Durable powers of attorney, 

unlike 21-2210 MDMs, are a way a person can 

voluntarily designate someone to act for them in the 

event they are unable to make decisions themselves, 

and thus are a less-restrictive option. The high 

percentage of people who were identified as having 

21-2210 MDMs (who, in DDS’ system, are usually 

family members), as compared to the extremely low 

number with identified powers of attorney, raises 

concerns that DDS may be over-relying on a more 

restrictive tool than necessary to support the people 

it serves. Some of these individuals may be able to 

voluntarily execute a power of attorney instead, but 

have not been offered a meaningful opportunity to 

do so.

[T]he most common form of 

decision-making support used by 

people with intellectual disabilities 

served by DDS is a 21-2210 

Medical Decision-Maker (MDM).
60 National Council on Disability

Unlike the DC Probate Court data review for 

people with ID/DD, DDS data indicates that 

where there is guardianship, it is roughly as 

likely to be limited as it is to be general. This 

may be a result of DDS’ 

stated commitment to 

“the use of lesser 

restrictive types of 

decision-making supports 

whenever possible.”133 It 

is interesting to note that 

over time, general 

guardianship for people 

served by DDS is 

becoming more common.

Lessons Learned from the DC 

Experience 

As indicated throughout this report, reliable 

national data on guardianship is scarce, let alone data 

specific to particular 

populations, such as 

individuals with ID/DD. This 

“deep dive” analysis of 

guardianship’s impact on 

people with ID/DD within the 

District of Columbia provides 

rare data about what the 

number and types of 

guardianships are, whether 

guardianship disproportionately involves young

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

FY 2013 FY 2014 FY 2015 FY 2016 FY 2017 FY 2018

Percentage of General versus Limited Guardianships for People 

with Intellectual Disabilities Served by DDS

Limited Medical Guardian or DC Equivalent General Guardian or DC Equivalent

While DC has been a national 

leader in reforming guardianship 

and promoting less restrictive 

alternatives ... data demonstrates 

that there is still a need for further 

initiatives designed to implement 

these changes...
National Council on Disability 61

adults, whether people with ID/DD are using tools to 

restore their rights, and whether recent legislative 

and policy reforms have yet had a significant impact. 

While DC has been a national leader in reforming 

guardianship and promoting less restrictive 

alternatives, the previous data demonstrates that 

there is still a need for further initiatives designed to 

implement these changes in a way that will 

significantly advance the decision-making rights of 

people with ID/DD. For example, data shows 

evidence of a continued pipeline to guardianship for 

young adults with ID/DD, despite the special 

education reforms designed to promote recognition 

of alternatives for that population.

 

Lessons for other states 

Lessons other states can learn from the DC experience include: 

• SDM can and should be recognized as an alternative to guardianship for transition-age youth, including those 

with ID/DD, in special education. While it is helpful to have a legislative mandate, state law change is not 

required for implementation of SDM in schools. Existing Family Educational Rights and Privacy Act (FERPA) 

forms can be modified to document SDM arrangements and ensure parents and caregivers, in their capacity 

as supporters, receive access to the student's educational information and continue to be invited to IEP 

team meetings. 

• SDM can and should be introduced early in the educational process, ideally beginning in pre-kindergarten. 

This is particularly true with respect to the development of general decision-making and self-advocacy skills, 

which are required for effective SDM later in life. Conversations and skill-building efforts relating to decisionmaking should therefore begin early, well before the student’s eighteenth birthday, in order to maximize the 

chances that less-restrictive alternatives to guardianship will be used. 

• Educational agencies and schools must recognize the right of adult students in special education to 

knowingly and voluntarily execute powers of attorney under state law that designate an agent to exercise 

their IDEA rights. To do otherwise denies adult students with disabilities an important civil right simply 

because they receive special education services, which is discrimination based on disability in violation of 

Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act. 

• Given the link between self-determination and community integration, states should include benchmarks 

related to SDM in their Olmstead plans. These official documents are ways states document their 

commitment to and plans for providing services to people with disabilities in the inclusive and integrated 

settings, pursuant to the ADA.

• To minimize the chance that they are overused or misused, any non-judicial alternatives to guardianship that 

are triggered by some form of certification of a person's incapacity—such as the DC Health Care Decisions 

Act or the DC Educational Representative process—must: (a) first require the express ruling out of the 

availability of alternative voluntary options, such as durable powers of attorney for health care or educational 

powers of attorney; and (b) be easily

• SDM can and should be recognized as an alternative to guardianship for transition-age youth, including those 

with ID/DD, in special education. While it is helpful to have a legislative mandate, state law change is not 

required for implementation of SDM in schools. Existing Family Educational Rights and Privacy Act (FERPA) 

forms can be modified to document SDM arrangements and ensure parents and caregivers, in their capacity 

as supporters, receive access to the student's educational information and continue to be invited to IEP 

team meetings.
62 National Council on Disability

• SDM can and should be introduced early in the educational process, ideally beginning in pre-kindergarten. 

This is particularly true with respect to the development of general decision-making and self-advocacy skills, 

which are required for effective SDM later in life. Conversations and skill-building efforts relating to decisionmaking should therefore begin early, well before the student’s eighteenth birthday, in order to maximize the 

chances that less-restrictive alternatives to guardianship will be used. 

• Educational agencies and schools must recognize the right of adult students in special education to 

knowingly and voluntarily execute powers of attorney under state law that designate an agent to exercise 

their IDEA rights. To do otherwise denies adult students with disabilities an important civil right simply 

because they receive special education services, which is discrimination based on disability in violation of 

Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act. 

• Given the link between self-determination and community integration, states should include benchmarks 

related to SDM in their Olmstead plans. These official documents are ways states document their 

commitment to and plans for providing services to people with disabilities in the inclusive and integrated 

settings, pursuant to the ADA.

• To minimize the chance that they are overused or misused, any non-judicial alternatives to guardianship that 

are triggered by some form of certification of a person's incapacity—such as the DC Health Care Decisions 

Act or the DC Educational Representative process—must: (a) first require the express ruling out of the 

availability of alternative voluntary options, such as durable powers of attorney for health care or educational 

powers of attorney; and (b) be easily challengeable by the person with the alleged disability.

• While state law, regulation, and policy changes to advance alternatives to guardianship are needed, more is 

required to ensure full implementation for people with ID/DD on the ground. This includes intense and 

frequent education of people with ID/DD, their families, state agencies, school personnel, judicial and court 

officers, attorneys, health care professionals, and financial institutions.

• When promising procedures and policies to promote alternatives to guardianship are introduced in schools, 

educational oversight agencies must develop tracking mechanisms, so that they can trend the way in which 

IDEA decision-making rights are exercised by and/or for adult students with disabilities—e.g., through SDM, 

powers of attorney, educational representatives, or Guardianship—so that the impact of these reforms can 

be concretely assessed and monitored. 

• Probate court resource centers that provide prose assistance to people seeking guardianship should also 

proactively provide information about less-restrictive alternatives that are also available under state law, such 

as SDM, powers of attorney, representative payees, and substitute or surrogate health care decisionmakers. 

• State laws should not only ensure that there is an unconditional right to counsel for people in initial and postappointment guardianship proceedings, but also that counsel is expressly required to zealously advocate for 

their clients' expressed wishes.

• DC's law promoting limited guardianship is not significantly impacting the scope of an appointed guardian's 

authority over people with ID/DD, which has tended to be general or plenary in nature, based on recent data. 

Judicial education to ensure limited guardianships are a viable option for people with ID/DD is needed.

• Although it is too early to meaningfully assess its impact in DC, instituting periodic court reviews of whether 

a guardianship continues to be the least-restrictive option for a person is a promising DC reform. DC Courts 

should ensure this review process remains fully funded and should continue to move towards expanding it 

to more people whose guardian was appointed before 2015. Establishing such review processes should be 

considered in other states.
National Council on Disability 63

The DC Superior Court Probate Branch offers 

regular orientations to family members on what 

the legal responsibilities of guardians are. It and 

other state courts should also train family 

member and professional guardians on using 

SDM within a court-appointed guardianship to 

increase self-determination, as well as train 

people who have guardians about ways they can 

access the new complaint process and initiate 

restoration of rights proceedings.

As one community advocate in DC said, “DC 

is at the forefront of a lot of important legal 

reforms designed to promote recognition of the 

decision-making rights of people with ID/DD. Yet, 

I still regularly get calls from parents and other 

family members who say they were told to get 

guardianship and are not aware of the many lessrestrictive options that are available in DC. For 

these promising reforms to have an impact, a 

culture shift still needs to happen—at the family 

level, at the school level, at the judicial level, at 

the governmental agency level—that recognizes 

guardianship is not the only game in town for DC 

residents with ID/DD.”
64 National Council on Disability

Journey to Greater Decision-Making 

Freedom 

Donna and Ricardo have come a long way 

since Forest Haven, and have other powerful 

stories to share about how their lives have 

impacted their decision-making.

Finances

When Donna and Ricardo lived at Forest 

Haven, they worked at a local fast-food restaurant, 

but were not allowed to cash their own paychecks.

Ricardo described a moment when they decided to 

take charge of their own money: “The rehab 

counselor would pick [us] up and drive us in the 

snow, but then he would leave, and he wouldn’t 

pick us up . . . We had to walk back [in a blizzard]. 

And that's when Donna said, ‘Well, you know 

what, since we did all this work, why don’t we just 

keep this check?’” Donna recalled they later had to 

Beyond DC Institutionalization: Donna and Ricardo’s Story 

A Powerful Love Story

Donna and Ricardo Thornton have a unique love 

story: They met at Forest Haven, an institution for DC 

residents with ID/DD. When the institution was 

shuttered in 1991 by a court order, Donna and 

Ricardo embarked on a journey together toward selfdetermination.134 Their story is one that is marked by 

significant progress and achievements, made more 

remarkable by the obstacles they faced. They were 

told that they could not get married while they were 

considered wards of the District, but they did just that 

in 1994.135 Shortly thereafter, they had a son named 

Ricky and raised him themselves, despite the 

common state practice at that time of rssemoving 

children born to married individuals with ID/DD.136

They have become powerful activists by serving as 

leaders of Project ACTION! —a DC-based selfadvocacy organization— by giving presentations 

around the country and testifying before the U.S. 

Senate.137 Their story has been featured in the 

Washington Post, on 60 Minutes, and in a 2003 

movie starring Kirstie Alley and Delroy Lindo.138
National Council on Disability 65

stand up to the institution’s staff. “When we got 

back to the cabin, they told us, ‘You weren’t 

supposed to cash that check.’ And I told them, 

‘This is our check and we spent [it].’” Donna and 

Ricardo got no “allowance” for that week.

After leaving Forest Haven, Donna and Ricardo 

were placed in separate group homes, where they 

had completely different experiences with financial 

freedom. Donna was taught how to open and 

manage a bank account. “When I first went into a 

group home, this lady counselor asked me if I 

wanted to learn how to open my own bank account 

. . . And when she taught me how to do this, I was 

so happy . . . Ever since then I know how to budget 

and save my money.” Ricardo, on the other hand, 

could only watch as Donna gained more financial 

independence. “[S]he had her . . . checkbook, so 

she was able to manage her money . . . I was 

watching her and thinking, ‘Someday I’m gonna do 

that.’” One day he decided to realize that dream by 

opening a bank account on his own and depositing 

his paycheck. However, his group home provider 

was not happy with his decision. “I got into trouble 

. . . [because] I didn’t ask them to open [it] . . . [I 

was told] ‘Next time you have to come to me so I 

can assist you so you know what you’re doing.’” 

Since that time, Donna and Ricardo have lived 

together for years in their home and both regularly 

manage their paychecks. Ricardo described his 

economic empowerment: “Now I put [my money] 

in my account and check my statement and how 

much I’m saving and how much I’m spending. [I]t’s 

just being able to have that freedom . . . You can 

manage your own money and not let people spend 

your money or tell you how to spend your money. 

It’s a good feeling—like I finally now can make 

decisions.”

Health Care and Domestic Life

Ricardo recalls that Forest Haven made some 

efforts to connect its residents with counselors and 

jobs outside the facility. However, he does not 

believe Forest Haven prioritized education that 

focused on independence and decision-making 

outside the institution. He sees the lack of 

education as significantly impacting not only 

residents’ human rights, but their physical health. 

For example, there was no formalized sex 

education. Ricardo recalls: “It was prohibited to talk 

about it, because if you did it and got caught, you’d 

get locked up . . . maybe three to four days . . . . If 

they would have had more education early, 

[sexually transmitted disease] could have been 

prevented.” 

When Donna and Ricardo were living on their 

own and expecting the birth of their son, they had 

to deal with assumptions about their inability to

make health care decisions. For example, a medical 

provider did not believe Donna could make a 

difficult decision about whether to have an 

amniocentesis. Donna recalls: “[A nurse said], 

‘They’re from institutions, they have no clue of 

what we’re talking about.’ ... I kept trying to tell 

her, ‘If you just teach us and show us, we can learn 

this.’” Ricardo said, “I was so proud of [Donna] 

that she was able to make that decision. Donna 

went through a period where she was hoping that 

someone would . . . make that decision for her, but 

she did it.”

Now, Donna and Ricardo more confidently 

make their own decisions with the support from 
66 National Council on Disability

people they trust. They are in the process of 

executing advance planning documents, including 

advance directives and durable health care powers 

of attorney. These tools are important to them 

because, as Ricardo said, “If something were to 

happen to us, and we’re not able to make . . . 

decisions on our own at that time, hopefully [our 

agents] will be able to make the decision for us. 

We put our trust in it, knowing that we’re going to 

be all right.” Donna and Ricardo both feel that it is 

important for people with ID/DD to surround 

themselves with good supporters who will treat 

them with respect. “Just remember that we are all 

on one team, and I would love to have respect. 

Work with me and know that I’m not perfect, but 

I’m willing to make a difference.”
National Council on Disability 67

Chapter 6: Other Stakeholder Experiences with the 

Guardianship System and Alternatives

Guardianship had a serious and detrimental 

impact on Tosha’s life. She ended up in a 

segregated, sheltered workshop where she was 

paid subminimum wage for a job that underutilized her abilities. Her job was to take a bag

filled with birdseed from the hand of a peer, rotate 

her body, and then drop the bag in a bin. Also, 

immediately after the guardianship was granted, 

she was moved into a group home with very 

restrictive rules. “I did not like all the rules that the 

group home and my guardian made me follow,” 

said Tosha. “I had no freedom and wasn’t allowed

to make decisions for myself.”

Disability Rights Texas learned about Tosha 

when they met her during their routine monitoring 

of sheltered workshops that paid subminimum 

wage. Their attorney informed her of her right to 

seek restoration from guardianship, and she asked 

for representation in this effort. 

According to Disability Rights Texas, Tosha’s 

guardian and the group home put up many 

obstacles to keep her attorney from successfully 

restoring her from being under guardianship, such 

as putting more restrictions on her life and moving 

Rights Taken, Rights Restored: Tosha’s Story from Texas 

Tosha Woodward has a developmental disability, 

and up until she was in her 30s, she was gainfully 

employed, living as a contributing member of society 

with no need for guardianship.

Unfortunately, her father was mistakenly told that 

he needed to file for guardianship for her to live in a 

group home. This is a common issue for families. 

Tosha did not want the guardianship, and during the 

initial hearing, many of her due process rights were 

violated. For instance, her court-appointed attorney did 

not arrange for Tosha to participate in the hearing and 

signed an agreed order that removed all her legal rights 

including the right to vote, to choose where she lived, 

and even to work where she wanted.
68 National Council on Disability

her outside of the jurisdiction of the court. And 

then sadly, her guardian died, which made for a 

more complex and lengthier process to finally 

achieve restoration for Tosha. 

When Disability Rights Texas was finally 

successful at getting Tosha’s rights restored, she 

cried in relief, “I am so happy to have my freedom 

back. I get to make my own decisions again about 

where I work and live.” She is now working again 

in the community making a fair wage at a job she 

enjoys.

Tosha’s story illustrates the concerns NCD 

raised in its 2018 report with respect to the 

implementation of guardianship regimes, including 

barriers to due process in initial guardianship 

proceedings, lack of zealous representation by 

some court-appointed 

attorneys, the expansive 

loss of rights, and barriers to 

pursuing restoration. But it 

goes further than that by 

highlighting the restrictive 

impact guardianship can have on people with 

ID/DD, depending on the actions of the more 

restrictive living and working environment, with

guardian. In Tosha’s case, she was moved to a

hardly a clear way out. It also illustrates how 

difficult it is for people with ID/DD to get 

information about their rights, whether from the 

guardian, the courts, the group home system, and 

in Tosha’s case, a sheltered workplace that didn’t 

provide any information to her. If the Texas 

protection and advocacy system hadn’t run across 

Tosha during a routine monitoring, would she have 

been able to get her rights restored? 

In Their Own Words: Other Lessons 

Learned from Stakeholders 

NCD gathered stories about experiences with 

guardianship and alternatives and their perceived 

impact on people with ID/DD through a variety of 

methods, including online story collection, a focus 

group, and one-on-one interviews. This resulted in 

input from people with ID/DD, family members, 

and other stakeholders, including special education 

advocates, state employees, guardians, or 

administrators of guardianship programs, and staff 

who provide transition services to youth with 

ID/DD. Qualitative information was collected from 

more than 80 respondents from 19 states and the 

District of Columbia. NCD identified several 

themes within these stakeholder stories that shed 

light on the perceived 

impact—both positive and 

negative—that guardianship 

and alternatives have on 

people with ID/DD. These 

themes are consistent with 

many of the findings and recommendations in this 

report, which seeks to balance the importance of 

promoting the self-determination for people with 

ID/DD with the recognition of the existing state 

legal systems designed to provide safeguards for 

this population. 

Reasons Adults with ID/DD Become 

Subject to Guardianship 

When asked when an adult with ID/DD gets 

put under guardianship or conservatorship, most 

respondents identified 18 as being the magic age 

at which such legal intervention is or should be 

sought. 

Qualitative information was 

collected from more than 80 

respondents from 19 states and 

the District of Columbia.
National Council on Disability 69

 One guardian stated: “[G]uardianship 

should be in place by their eighteenth 

birthday. Otherwise, it is impossible to be 

included in their medical care or finances.”

 A family member agreed: “At or by the 

age of 18, since that is when medical 

providers no longer include the parents in 

conversations about medical care. It is also 

when SSI begins and management of this 

as well as waiver supports starts.”

 A family member responded: “When 

[people with ID/DD] turn 18, unfortunately, 

parents are led to believe it is needed in 

order to maintain involvement in their 

child’s life or to get access to services.” 

 Another family member indicated 

guardianship referrals for people with 

ID/DD happen “[o]ften at or around 18, 

upon the advice of doctors, teachers, and 

others.” 

As indicated in Chapter 2, the educational 

system was frequently seen as the reason behind 

such referrals, but there were other reasons cited 

as well. Many respondents included the medical 

profession as a common source of guardianship 

referrals. For example:

 A disability rights attorney reported: 

“Medical providers also push for 

guardianship when the person presents 

for care and the provider believes they are 

not competent to consent to medical 

treatment.” 

 A respondent with ID/DD stated: “Doctors 

who don't know you will make a decision 

that you are incompetent.” 

 A family member reported that some 

providers may exclude supporters unless 

they have guardianship: “There has been 

involvement with a misinformed medical 

provider and says [guardianship] is 

required in order for individuals who 

support the person to be involved or 

support the individual with the issue.”

 A family member described her 

experience: “Doctors thought there were 

a fifty percent chance he would come out 

of the coma and a five percent chance he 

would be able to live independently. 

[Based on that,] I thought we needed the 

conservatorship in order to conduct 

business on his behalf, but as I stated 

before, it was not needed. We even 

refinanced our mortgage without it—I 

explained it to the bankers/realtor, but they 

said he could sign for it.” 

Another referral source, according to 

respondents, comes from attorneys and judges. 

 One family member said: “Schools and 

attorneys tell parents that they need to get 

Guardianship to protect their handicapped 

son [or] daughter when they turn 18 (or 

21). I feel this is misleading! guardianship 

strips a person of their rights . . . 

[E]ssentially they become a piece of 

property.”

 Another parent recalled her experience

with an attorney: “My divorce attorney 

told me about power of attorney as an 

option, but when he met my son, he was 

unsure if my son understood what giving 
70 National Council on Disability

someone POA meant . . . I [now] have 

medical power of attorney for my son.”

 An additional family member reported that 

an attorney recommended guardianship 

for her nephew with ID/DD because it 

would make it “easier” for them to set up 

a trust for him.

 An attorney described an interaction she 

once had with a judge: "I think of a 

conversation with a judge 15 years ago 

about a person with Down syndrome. The 

judge told me that of course anyone with 

Down [syndrome] should have a guardian 

by virtue of the diagnosis. We have come 

a ways, but there is 

so much farther to 

go."

Based on several 

respondents, one of the 

reasons people obtain guardianship is because of 

what they fear may happen without it—fear of 

being taken advantage of, fear of dangerous 

choices, and fear that supporters will be cut out of 

the decision-making process. For example:

 One parent said: “Parents fear their child will 

be taken advantage of and that their own 

advocacy will not be heard. Parents do not 

think their children will grow and develop 

beyond what they have accomplished by the 

time they are 18 and fear they will never be 

able to make important decisions and need 

to be protected.”

 Another parent described the difficult 

choice she faced: “Guardianship was 

difficult to get for our son. Some 

people said, ‘He looks normal. Why 

do you want it?’ . . . Left on his own, 

someone could take advantage of 

him and take his money. Before we 

had guardianship, our son thought he 

was spending one-hundred dollars to 

take a class, but he was actually 

charged one-thousand. It took my 

husband and me two months to get 

the money back.” 

 According to another respondent, a parent 

seeks guardianship when he or she “fears 

that they will be shut out of helping to 

make decisions for a family member who 

does not communicate in traditional ways 

or quickly enough during 

medical or financial 

discussions.”

One family member who is 

a standby partial guardian of 

a sibling with ID/DD said people turn to 

guardianship because of “Fear. And it’s not 

an irrational fear. Our adult service system 

has a long way to go to [prove] that it can 

properly care for people with IDD. Our 

communities have a long way to go to fully 

accept and care for all community members 

in an inclusive way.”

Perspectives on the Impact of 

Guardianship on People with ID/DD 

When answering whether they thought 

guardianship or conservatorship influences or 

changes the way people with ID/DD are treated, 

most respondents answered in the affirmative, 

although many of the responses focused on 

whether the guardian was skilled and 

knowledgeable (or not), highlighting how individual 

[O]ne of the reasons people obtain 

guardianship is because of what 

they fear may happen without it ...
National Council on Disability 71

experiences within a system may vary 

considerably. Some respondents pointed to 

perceived positive changes for people with 

guardians. For example:

 A family member stated: “Others know 

the adult with ID/DD has an advocate and, 

in our case, a very active and involved 

advocate. They know they cannot take 

advantage of him and, more importantly, 

know it is OK to be helpful without fearing 

they may be asked for considerably more 

help.” 

 A case manager reported: “Ones without 

guardians are way too easy to exploit, abuse 

and/or neglect.” 

 A family member guardian said: “Those 

individuals [in guardianship] may be viewed 

as safer because there is a team of people 

keeping watch over their best interests.”

 Some participants, mostly family member 

guardians, described what they felt to be the 

beneficial aspects of guardianship. For 

example: 

 A parent of a person under guardianship 

stated: “We feel we can be proactive rather 

than reacting [to] a problem. Having

guardianship makes it easier to speak and 

make [decisions] with professional[s] —

medical and governmental—about our son.” 

 Another parent and guardian agreed: “My 

son has medical as well as cognitive issues. 

It was imperative that his health and wellbeing would be overseen by us, his parents 

who have his best interests at heart. Having 

guardianship has meant that we can make 

medical decisions and program decisions 

that benefit him, as no one else knows him 

as well as we do. He is incapable of 

understanding these things and he needs 

protection, which we can supply as his 

guardian.” 

Others saw benefits when guardianship is 

used with SDM to encourage the development of 

decision-making skills and self-determination.

 One disability rights attorney recalled her 

experience with a client who was placed 

in guardianship: “My client, who has an 

intellectual disability, was found wandering 

the streets at the age of 19 after her father 

died. Having completed high school, she 

was no longer receiving services and was 

unable to care for herself. She was placed 

in a nursing home and put under 

guardianship. Her guardian was an 

incredible advocate for her. He got her 

connected with services, which truly 

allowed her to grow. Eventually, she 

completed a training program and began 

full-time employment with benefits. Her 

guardian recognized the growth in skills 

and independence that had happened and 

worked with me to assist my client in 

terminating her guardianship in favor of 

supported decision-making. Now my client 

makes all decisions.” 

 Another parent and guardian 

described how they incorporate SDM 

in the guardianship: “[W]e strongly 

support our daughter in self-direction, 

on her own, as much as possible . . . 
72 National Council on Disability

She is a recipient of our state's DD 

waiver program . . . It supports 

therapies, direct support services 

such as transportation, and 

community or homemaker direct 

support. This helps her with 

supported decision-making to have an 

improved quality of life in the 

community.” 

Many stakeholders who responded to this 

question saw a negative change in the way society 

treats people with ID/DD after a guardian is 

appointed. For example: 

 A family member stated: “In my 

experience, the person [under 

guardianship] is then seen as having 

nothing to contribute to decisions about 

any aspect of their life. Instead of 

presuming competence people begin to 

presume inability and lack of intelligence.” 

 Another family member agreed: “They are 

viewed as people who need to be 

protected, who do not have preferences, 

stresses, interests, desires . . . and will 

likely never achieve independence or full 

active lives in the community.” 

 A person with ID/DD who does not have a 

guardian stated: “I’ve seen people not be 

treated like humans—like they’re just a 

disability.”

 A family member guardian stated: “They 

talk to me, not him—it’s like he is not 

there beside me.” 

 A social worker said: “They may be looked 

down upon as being unable to care for 

themselves or meet their own needs.” 

 A family member from Kentucky pointed 

to “lower expectations, less opportunities, 

seen as less valuable.” 

Some respondents noted that guardianship is 

sometimes used as a tool for control. As one 

attorney explained: “In [my state], providers are 

not prohibited from becoming guardian over those 

who use their services. Sometimes this has been 

done ‘benevolently,’ other times it has been done 

manipulatively to prevent the person from leaving

services or changing service providers.” 

Some respondents mentioned due process 

concerns, specifically how easy it is to obtain 

guardianship over a person with ID/DD and how 

difficult it can be to terminate:

 One family member of a person with 

ID/DD stated: “I am aware of a handful of 

individuals who would like to have their 

rights restored and their efforts are stalled 

by a lack of legal support to execute the 

proper documents. The[y] are unaware of 

the process. Those served by service 

providers without family have no 

resources to terminate guardianship, 

despite having an interested party 

attempting to make it happen.” 

 One professional described not knowing 

what to do when a person she supported 

wanted to fire his guardian: “I felt that I 

don’t really know what to do, because 

there was always talk about getting 

guardianship. There was never talk about . 

. . reinstating rights. [Guardianship is seen 

as] the one-way ticket... There wasn’t an 
National Council on Disability 73

idea: How do we reverse this?”

Other respondents described people with 

ID/DD experiencing a regression of their decisionmaking abilities while under guardianship:

 One family member stated: “[My family 

member under guardianship] has 

overcome many obstacles and her 

potential is unknown, but one thing she is 

not, is incompetent. Nobody cares. She is 

regressing. She is learning to be helpless 

and does not want to live this way. 

Watching what is happening to her 

reminds me of experiments I have read 

about like the Stanford Prison experiment, 

and how over time you become the 

person you are made to be.” 

 A sibling of a person under guardianship 

stated: “My brother has a severe intellectual 

disability and autism. He's primarily 

nonverbal and is dependent on others for 

many of his daily life activities . . . I think the 

lowered expectations associated with my 

brother being under guardianship have 

caused him to lose the progress on skills 

and independence that he was making 

towards the end of high school. In many 

ways, he has regressed and become more 

dependent on others. It's very frustrating 

both as his sister and as a researcher to see 

this happen and be limited in intervening.”

 Some respondents pointed to both positive 

and negative consequences. For example:

 One family member stated: “I hate to say 

this, but in general, I feel that it makes 

people treat disabled people like they are 

children incapable of doing anything by 

themselves. In extreme cases like my 

cousin, [however, guardianship] is absolutely 

vital.” 

 Another family member in a different state 

agreed: “It can be associated with 

lowered expectations for individuals with 

ID/DD, but also the perception of more 

oversight and regulations as it is not the 

person with ID/DD making most 

decisions.” 

 An administrator of guardianship 

explained: “We have witnessed both 

positive and negative changes: As 

decision-makers for individuals supported 

in guardianship, agencies are hard pressed 

to go against the wishes of the guardian, 

especially if we disagree with plans for the 

individual. I am concerned that 

sometimes, treating physicians and other 

professionals may not embrace the 

person, instead there may be a focus on 

the guardian/decision-maker.”

Perceptions on the Impact of 

Alternatives to Guardianship on 

People with ID/DD 

Many respondents described how they use 

alternatives to guardianship, such as powers of 

attorney or SDM, and the benefits of using these 

options. 

 One mother described her son’s 

experience: “supported decision making 

has given my son a very good experience 

of forming the life that he wants while we 

ensure his safety and locate a great 

network of support. People with 

intellectual disabilities should be able to 
74 National Council on Disability

create a life that they enjoy filled with their 

desires.” 

 A respondent explained how her family 

member has become more confident since 

guardianship was terminated: “I continue to 

be the representative payee, and I am 

considering terminating that role in light of 

what I now know about supported decisionmaking. I know that my family member will 

continue to need help handling interactions 

with Social Security, Medicare, et cetera, but 

I would like to return the right to decide how 

his SSD is spent [on] him. He is already 

more confident and assertive since the 

conservatorship termination, and I expect 

him to continue to grow as he takes 

ownership of his decisions with my 

support.” 

 When it comes to people with ID/DD, some 

recommended considering and using a 

combination of alternatives. For example, a 

respondent reported: “My sibling has a 

power of attorney to assist her with her 

medical, financial, and legal needs. In 

addition, [she] has a representative payee to 

assist [her] with managing her Social 

Security benefits. In addition, my sibling has 

a formal circle of support to assist her with 

helping to address the things that are 

important to her: her business, her 

employment, finding/hiring direct support 

workers, managing her supports, and living a 

good quality of life.”

Others cautioned against overzealously 

promoting alternatives to the point where 

guardianship became a “dirty word.” For example:

 A lawyer and family member agreed with 

the exploration of alternatives, while 

recognizing that guardianship may remain a 

valid option in certain cases: “As long as the 

concept of using the least restrictive 

alternative/intervention appropriate for that 

person is used, I have seen these 

alternatives to guardianship be successful. 

However, guardianship should not be turned 

into a dirty word. My brother needs a 

guardian for his own safety and welfare, but, 

of course, that does not remove the 

obligations in [Massachusetts] of the 

guardian to take into account his express 

desires and to only exert the amount of 

authority necessary.”

 One parent expressed concern that people 

were too often being discouraged from 

getting guardianship and described an “antiguardianship movement” that could be 

perceived as an “attack on families” of 

people with ID/DD.

Importance of Self-Determination for 

People with ID/DD 

Another common theme expressed by some 

self-advocates, family members, and professionals 

is that promoting self-determination can have a 

host of positive benefits for people with ID/DD. 

 As one self-advocate explained, “My belief 

is that a person with a disability can get 

confidence with making decisions from their 

family members, when they figure out what 

they need. My belief is that they get support 

from their family members and, later on . . . 

they pretty much got a skill to make 

decisions and that is like adaptability.”
National Council on Disability 75

 A parent of a person with ID/DD also 

described the confidence that can come 

with decision-making: "In my opinion, the 

key is teaching [my daughter with cerebral 

palsy] decision-making skills and helping 

her feel confident enough to express her 

opinions and decisions. However, I knew 

very early that my daughter was very 

capable of making her own decisions, 

regardless of what others thought.”

 An attorney recounted the experience of 

her client whose guardianship was 

terminated: “My client had her 

guardianship terminated in favor of using 

supported decision-making. This 

arrangement has allowed her to exercise 

self-determination and independence. One 

of the first things she did was sign up for 

her benefits at work. It means so much to 

my client to be able to make her own 

decisions and have control over her life.”

 A parent expressed how important it was 

to involve people with ID/DD in decisions 

about health care. “More than 20 years ago 

when my daughter was a teen, her doctor 

recommended that she have surgery to 

restructure her hip socket, which would 

help prevent arthritis and other painful 

conditions. I sought a second opinion, 

which validated the recommendation. My 

daughter had the surgery, which was very 

painful, required a body cast and a fairly 

long recovery period. I made this decision 

for her, but she suffered. I decided then 

that I would never do that again, without 

her understanding and agreement, except 

in dire circumstances. Since that time, we 

have always discussed her health care and 

made decisions together.”

Societal Biases Impacting the 

Decision-Making of People with ID/DD 

Several respondents also described the 

negative assumptions people with ID/DD have 

faced regarding their ability to make their own 

decisions or the need by others to control their 

decisions. 

 A person with ID/DD described the 

reactions he received after he purchased a 

house: “When I got the house . . . a lot of 

the people were shocked . . . [T]hey didn't 

think I deserve to have anything that they 

have because of my disability . . . But for 

the first two years I didn't think [the house 

was] mine . . . I thought somebody is going 

to come to me and tell me ‘Get your 

retarded butt out of my house, it’s not 

yours.’ . And I was paying the mortgage 

and everything but because for so many 

years I was told what I couldn't have, what 

I couldn't do, I didn't believe the house was 

mine. And then when I realized the house 

was mine, I cried.”

 A parent explained: “Often people with 

visible [ID/DD] are assumed to be less than 

whole and not capable of knowing what 

they want or what they're doing. For 

instance, a waiter will often address the 

companion of the person with [ID/DD] 

when taking an order in a restaurant, rather 

than asking the person directly.” 

 A self-advocate agreed: “[W]hen you have 

a disability, everybody sees themselves a 
76 National Council on Disability

bit above you and they see themselves a bit 

above me, because, even [in] my personal 

life, I have very close people who wanted to 

control me . [T]hen they disrespect you, but 

they think they [are] doing something for you. 

[B]ut sometimes, people they want to control 

you.”

The Power of Communication in All 

Forms for People with ID/DD 

Communication is a vital part of decisionmaking, and some of the assumptions made about 

people with ID/DD may spring from their nontraditional method of communication. 

 As stated by a parent of an adult child with 

ID/DD, “[P]eople with [ID/DD] who don't 

use words to communicate or whose 

language is hard for others to understand, 

are assumed to be less than capable of 

having their own opinions. Not true . . . 

[W]e need to understand how the 

individual with [ID/DD] communicates, and 

share that information, so that the voice of 

the person with [ID/DD] will be heard.” 

 Another family member agreed: “Most 

people who have trouble with traditional 

communication because of the pace or 

complexity of the interaction are perceived 

as someone who needs help to make 

decisions.”

 A self-advocate told a story about how a 

person who did not communicate through 

words was treated: “[S]omebody that I 

knew long time ago... he was throwing a 

fit and was making noises and [the 

provider] thought that he was acting up . . 

. [T]hey got mad at him and got ready to 

write him up. [R]ather than enforcement, 

he is very intelligent. He should’ve been 

able to [be supported to] communicate like 

[with] a notepad or a keyboard.”

When supporters and others learn how to 

effectively communicate, it can unlock the 

person’s decision-making ability. A self-advocate in 

DC recalled her experience of learning how to 

creatively communicate with a peer who did not 

communicate verbally: “When I was in school 

riding the school bus, I ran into this pretty young 

girl . . . I asked the bus driver who [she was] . . . 

He said she can't walk or talk, and I said . . . ‘Not 

now, but she will.’ and by the end of that school 

year . . . me and her came up with a way of 

talking. She talks [with] her eyes [by blinking] . . . 

It's just a different form or way of talking.” 

The Impact of a Lack of Opportunity 

to Make Decisions on People with 

ID/DD 

Multiple respondents discussed how a lack of 

education on decision-making negatively impacts 

people with ID/DD. For example:

 One parent of an adult child described her 

feeling that people with ID/DD are not 

always encouraged or asked to weigh in 

on their own decisions or encouraged to 

advocate for themselves: “[M]any people] 

with [ID/DD] are not taught to make their 

own decisions or given the go-ahead to do 

so. We need to teach all children, including 

those with [ID/DD], about decision-making 

and the give and take that's sometimes 

involved. They need to learn to choose in 
National Council on Disability 77

small ways whenever possible.” 

 A self-advocate who regularly gives 

following story: “One year we was asking 

people what they wanted out of life and 

this one man, I 

think he was in his 

fifties, he started 

crying, and we was 

asking him why, 

and he said that 

that was the first 

time anybody ever 

asked him what he 

wanted, and he 

grew up in the 

system and nobody 

cared about what 

he wanted.”

 Another self-advocate with ID/DD, on the 

other hand, recalled the advice she 

received that not everyone does: “My 

mother always told me to speak up so that 

I won’t be left behind.”

Many respondents tied the lack of education 

on and opportunity for decision-making to the 

effects of living in a more 

restrictive community 

setting such as a group 

home. Several selfadvocates described how 

such a living situation 

shaped their perspectives 

on decision-making and 

self-determination. One 

person with ID/DD 

wondered how people 

would learn from their 

mistakes if they are not 

allowed to make any: “I feel like a group home is 

another small institution. [I]f somebody keeps 

telling you [not to] do something, how are you 

going to learn from something?”

“One year we was asking people 

what they wanted out of life and 

this one man, I think he was in his 

fifties, he started crying, and we 

was asking him why, and he said 

that that was the first time 

anybody ever asked him what he 

wanted, and he grew up in the 

system and nobody cared about 

what he wanted.”
78 National Council on Disability
National Council on Disability 79

Chapter 7: Findings and Recommendations

s a supplement to the corresponding 

section in the 2018 NCD report, below 

are additional findings and federal level 

recommendations designed to improve the 

experience of people with ID/DD in systems of 

guardianship and in the implementation of lessrestrictive alternatives.

Key Findings and and Recommendations, continued

Finding 1: The lack of data on existing guardianships and newly filed guardianship includes 

information on the specific nature of the person’s disability, thus making it difficult to have reliable 

state and national information on how guardianship systems impact people with ID/DD and 

whether that population is likely to be in limited or full guardianship than people with other 

disabilities.

Recommendations:

• The Social Security Administration has data based on disability-related eligibility Listings. 

Therefore, it should not only conduct data on whether individuals it serves are subject to 

guardianship, but trend it against the type of disability. 

• Offer states incentives and technical assistance with developing electronic filing and 

reporting systems that collect basic information about guardianships, including the alleged 

disability of the person served—as well as their age—among the other information 

recommended in the 2018 NCD report. 

• The National Core Indicators (NCI) website should also specify, on a state-by-state basis, 

precisely to what population of people with ID/DD the state is administering its survey, so 

that one can assess whether the data collected is truly representative of the full population 

of people with ID/DD in that state.

Finding 2: People with ID/DD currently are at higher risk for guardianship because of the schoolto-guardianship pipeline.

Recommendations:

• The U.S. Department of Education OSERS renewed its previously archived 2017 “Transition 

Guide to Postsecondary Education and Employment for Students and Youth with 

Disabilities,” which recognized the serious implications of guardianship and encouraged 

A
80 National Council on Disability

Key Findings and and Recommendations, continued

schools to recognize SDM and other less restrictive decision-making support for adults in 

special education. OSERS should do more to promote implementation of this guide at the 

state and local level, including requiring State Educational Agencies to:

o Ensure robust and repeated trainings of educational professionals at the agency and 

school level on options for supporting the decision-making of adult students with 

disabilities, including people with ID/DD, that are less-restrictive than guardianship.

o Create a modified FERPA form for the transition process that documents SDM 

arrangements that ensure parents and caregivers can support transition-age youth in 

making educational decisions after rights transfer to them.

o Ensure local school systems do not unlawfully discriminate against adult students with 

disabilities who wish to exercise their civil right to execute a power of attorney under 

state law. 

o Develop tracking mechanisms to determine how decision-making rights are exercised 

by and/or for adult students in special education to assess and monitor the use of 

guardianship and alternatives by transition-age youth.

• OSEP should instruct its Parent Training and Information Centers to prioritize and provide 

meaningful training on school-to-adult transition and alternatives to guardianship.

• The Department of Education should issue a “Dear Colleague” letter to all teacher education 

programs and vocational rehabilitation agencies urging them to cover the full range of 

decision-making options in their transition programming and instruction of accommodations 

for people with ID/DD.

• The Department of Education should issue regulations and/or guidance clarifying the 

requirements for states that, pursuant to their own state law, create an educational 

representative appointment option for adult students who cannot provide informed consent 

for their special education services, pursuant to IDEA (30 U.S.C. § 1415(m)(2)) and its 

regulations (34 C.F.R. § 300.520(b)). When such appointment is triggered by a parent’s 

request or an alleged certification of incapacity, states must require that: (1) less-restrictive 

options, such as educational powers of attorney or other voluntary delegation by the student 

are exhausted first; and (b) such appointments are easily challengeable by the students 

involved through, for example, a mere objection rather than by a due process hearing before 

an administrative law judge.
National Council on Disability 81

Key Findings and and Recommendations, continued

Finding 3: A minority of states have guardianship provisions that are applicable solely to people 

with ID/DD, as opposed to other alleged disabilities. While some of these statutes incorporate 

additional procedural safeguards, there is not demonstrable proof that they are advancing the due 

process and substantive rights of people with ID/DD in practice and, in treating people with ID/DD 

uniquely, may be promoting unfavorable stereotypes about the inherent capacity or incapacity of 

this population. In addition, these statutes could represent an ADA violation for discriminating 

against people with different disabilities.

Recommendations:

• The U.S. Department of Justice should take the position that the degree of due process in a 

guardianship matter under state law or practice should not be different for people with ID/DD 

simply because of their diagnosis, and states that have such statutes or practices are 

engaging in discrimination under the ADA. 

• The state adult guardianship court improvement program that NCD recommends be created 

and funded in the 2018 NCD report should require that guardianship be used as a matter of 

last resort and that the person’s functional abilities be assessed on an individualized basis 

rather than on the basis of the person having an ID/DD, consistent with the Uniform 

Guardianship, Conservatorship & Other Protective Arrangements Act.

Finding 4: While more states should advance alternatives to guardianship in their state laws, 

regulations, and policies, more is required to ensure that these changes are fully implemented on 

the ground, creating a cultural shift at the judicial, governmental agency, and business levels that 

significantly recognizes and advances the decision-making rights of people with ID/DD.

Recommendations:

• DOJ should issue guidance to states on their legal obligations pursuant to the ADA in the 

context of ensuring that guardianship should be a last resort that is imposed only after lessrestrictive alternatives have been determined to be inappropriate or ineffective. This 

guidance should include requirements that states consider including benchmarks related to 

SDM in their Olmstead Plans.

• The state adult guardianship court improvement program referenced above should require 

states to:

o Not fund probate court resource centers that only provide pro se assistance to people 

seeking guardianship. Those resource centers should also provide people with 

information about less-restrictive alternatives under state law, such as SDM, powers of 
82 National Council on Disability

Key Findings and and Recommendations, continued

attorney, representative payees, and substitute or surrogate health care decisionmakers. 

o Ensure that there is an unconditional right to counsel for people in initial and postappointment guardianship proceedings and that counsel is expressly required to 

zealously advocate for their clients' expressed wishes.

o Provide judicial and attorney trainings on the availability of less-restrictive options for 

decision-making support under state law. 

• The DOJ should issue guidance to states on how to minimize the risk of overuse or misuse 

of involuntary, non-judicial alternatives to guardianship, such as those in educational or health 

matters, which raise due process concerns. States should legally require ruling out voluntary 

options—such as SDM and powers of attorney—before such involuntary options can be 

used. Those involuntary options should also be easily challenged by the person. 

• The U.S. Department of Health and Human Services should explore ways to facilitate 

decision-making support for people with ID/DD, particularly for those who may not have a 

large network of trusted family members and friends. This should include providing funding 

to support:

o Community services such as health advocate programs, in which a supporter attends 

medical appointments, assists the supported person with understanding and making 

major medical decisions, and acts as a facilitator between the supported person and his 

or her doctor.

o Financial case management services, including regular meetings with supported 

individuals to discuss budgeting, establishing direct debit and deposits, and assisting in 

the management and recertification of public benefits. 

o Educational advocate services to help adult students with ID/DD understand and make 

educational decisions. Examples of this type of support could include attending IEP 

meetings, assisting with transition planning, and facilitating communication between 

the supported person and education officials.

Finding 5: Despite the existence of restoration of rights procedures in many state laws, many 

people with ID/DD and their families are unaware of those options, let alone the broad array of 

less-restrictive options. People with ID/DD may therefore remain in guardianships that are 

overbroad or undue for most of their lives.
National Council on Disability 83

Key Findings and and Recommendations, continued

Recommendations:

• The state adult guardianship court improvement program referenced above should require 

states to:

o Regularly notify people in guardianships, their guardians, and other interested parties in 

their life that guardianship need not be permanent and that there are concrete ways to 

pursue restoration of rights. 

o Periodically review guardianships to determine whether they remain the least 

restrictive option or should be modified or terminated.

o Train family and professional guardians on using SDM within a court-appointed 

guardianship to increase self-determination and the potential for restoration of rights.

o Train people in guardianship on ways in which they can complain about their guardian 

and initiate restoration of rights proceedings.

Finding 6: There is a dearth of reliable data on the number of adult abuse, neglect, or exploitation 

cases in which the perpetrator is the court-appointed guardian or other substitute decision-maker 

of the victim. According to the National Adult Maltreatment Reporting System (NAMRS), eighteen 

states do not collect any perpetrator information.139 Of the states that do track general perpetrator 

information, the vast majority do not collect specific information regarding a perpetrator’s role as 

the court-appointed guardian or other substitute decision-maker.140 Although the NAMRS requests 

data from states about the perpetrators’ role as the victims’ court-appointed guardian or other 

substitute decision-maker, in 2017 only four states submitted data for the start of the 

investigation. No state has ever submitted data to NAMRS for the end of the investigation.141

Recommendations:

• States should continue to be encouraged through the NAMRS and other mechanisms to 

collect, track, and report the number of cases in which perpetrators are the victims’ courtappointed guardian or other substitute decision-maker.

• The state adult guardianship court improvement program referenced above should require 

that state courts review the annual reports of guardians for signs of unusual or deficient 

accounting and signs of abuse and neglect.
84 National Council on Disability
National Council on Disability 85

Appendix A: Analysis of ID/DD Specific 

Guardianship/Conservatorship Statutory Provisions

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

Alabama

Ala. Code § 12-13-21 

et seq.

 Defines “developmentally disabled” person as a person “whose 

impairment of general intellectual functioning or adaptive behavior meets 

the following criteria: (1) It has continued since its origination or can be 

expected to continue indefinitely; (2) it constitutes a substantial burden to 

the impaired person’s ability to “perform normally in society”; (3) it is 

attributed to one or more of the following: “including intellectual disability, 

cerebral palsy, epilepsy, autism, a condition found to be ‘closely related’ to 

intellectual disability because it ‘produces a similar impairment’” or 

requires similar treatment or services, or dyslexia related to these 

conditions. 

 “Perform normally in society” is not defined by the statute, and the 

language used in the statute to refer to specific disabilities is outdated.

 Guardianship for a developmentally disabled person shall be used “only as 

is necessary to promote and protect the well-being of the person, including 

protection from neglect, exploitation, and abuse; shall be designed to 

encourage the development of maximum self-reliance and independence 

in the person; and shall be ordered only to the extent necessitated by the 

person’s actual mental and adaptive limitations.”

 The court may appoint as guardian for a developmentally disabled person 

“any suitable person or agency, public or private, including a private 

association or nonprofit corporation capable of conducting an active 

guardianship program for a developmentally disabled person.” The court 

cannot appoint the Department of Mental Health as guardian or any other 

agency that directly provides services to the person with ID/DD. 

 A petition for the appointment of a guardian may be filed by “an interested 

person or entity,” or “by the individual.” “Interested person or entity” 

means an adult relative or friend, an official or private agency, corporation, 
86 National Council on Disability

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

or association “concerned with the person’s welfare,” or any other person 

the court found suitable. 

 While it does not specifically cross-reference the standard Alabama 

guardianship statute, this provision does not set forth separate and specific 

procedures for the appointment of a guardian. The impact of the two 

provisions above on guardianship for persons with ID/DD is not evident 

from the text. 

Arizona

Ariz. Rev. Stat. § 36-

564 et seq.

 Appointed under and governed by the same procedures, with clarification 

that guardianship and conservatorship “shall be utilized only as necessary 

to promote the well-being of the individual . . . and shall be ordered only to 

the extent necessitated by the individual’s actual mental, physical and 

adaptive limitations.”

 Department of Economic Security may request the appointment of a 

guardian if it feels a guardian would be in the person’s best interest. When 

no one is available to act as the guardian, the Department must notify the 

public fiduciary in the county where the person receives services of “the 

need for a guardian.” 

California

Cal. Health & Safety 

Code Div.1, Pt. 1, Ch. 

2, Art. 7.5, §§416 to 

416.23

 Governed by the same procedures, with main exceptions listed below.

 Provides that the court may appoint the Director Developmental 

Disabilities as guardian or conservator of the person and estate, stating 

that the typical order of preferences for that appointment do not apply. 

 Sets forth unique requirements for the Director, such (a) payment of a 

single official bond, rather than bonds per individual; (b) responsibilities to 

maintain close contact with the person, no matter where they live in the 

state; “act as a wise parent would act in caring for his developmentally 

disabled child”; and “permit and encourage maximum self-reliance” on the 

part of the person; (c) provide at least an annual review in writing of the 

physical, mental, and social condition of the person. The Director may 

receive reasonable fees for such services. 

 Provides additional requirement that regional centers provide the court 

with a “complete evaluation” of the person, including “current diagnosis of 

his physical condition prepared under the direction of a licensed medical 

practitioner and a report of his current mental condition and social 
National Council on Disability 87

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

adjustment prepared by a licensed and qualified social worker or 

psychologist.” 

 Requires the court to appoint an attorney to represent the person if he or 

she does not have attorney, with the person paying the cost if able. In nonID/DD cases, appointment of an attorney for the person is at the court’s 

discretion, unless the person requests one. 

 Allows for exceptions to person’s attendance at the hearing that is similar 

to those in non-ID/DD cases. 

 Requires that when a person will not be present at the hearing, that the 

psychologist or social worker who evaluated the person visit and “be 

prepared to testify as to his or her present condition.” However, the 

psychologist or social worker in question is required to consult the person 

to determine the person’s opinion concerning the appointment” and must 

be prepared to testify as to the “person’s opinion, if any.” In non-ID/DD 

cases, a court investigator is required to interview the person, petitioner(s), 

and proposed conservator(s), spouses/domestic partners, and certain 

relatives; make investigative findings; and submit a report to the court. 

 No costs or fees may be charged or received by the county clerk for any 

official services performed, including the filing of the conservatorship or 

guardianship petition.

Connecticut

Conn. Gen. State 

Ann. 45a 802h §§-669 

to -693

 Intellectual disability diagnosis is part of standard for appointment of a 

guardian, but the person must also be found to be unable to meet 

essential requirements of physical health and safety and unable to make 

informed decisions about matters related to their care. 

 There is a stronger requirement for counsel for the person “Unless the 

respondent is represented by counsel, the court shall immediately appoint 

counsel for the respondent” paid through the state if the person is 

indigent. The non-ID/DD statute allows a person to knowingly waive 

counsel. 

 The person will be present at the hearing, except that “the court may 

exclude the respondent from such portions of the hearing at which 

testimony is given which the court determines would be seriously 

detrimental to his or her emotional or mental condition.”
88 National Council on Disability

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

 The statute uses a “clear and convincing evidence” standard of proof. 

 Neither plenary nor limited guardians can: (1) admit the person to a mental 

institution, except under specific provisions of law at 17a; (b) admit the 

person to any “training school or other facility provided for the care and 

training of persons with intellectual disability” if there is a conflict between 

the guardian and the protected person, or their next of kin; (c) sterilize the 

person, perform “psychosurgery” on the person, terminate the protected 

person’s parental rights, prohibit the person’s marriage, or consent on the 

person’s behalf to the removal of an organ, except under specific 

provisions of law at 17a and 45a; (d) consent to any experimental medical 

procedure, except under specific circumstances in which the procedure is 

necessary to preserve the person’s life or endorsed by a court, an 

institutional review board, or the person’s physician. 

 If the person is eligible for Department of Disability Services (DDS) s, a 

written report or testimony must be provided from a DDS assessment 

team on the severity of the ID/DD and the specific areas, if any, where 

supervision and protection of a guardian is needed. 

 The court is required to review each guardianship at least every three years 

and shall either continue, modify, or terminate the order of guardianship. 

Written reports on the condition of guardianship are required on the 

person’s condition, with less mandated reports for people within the 

severe or profound range of intellectual disability. The person has a right to 

counsel.

Florida

Fla. Stat. Ann. §§ 

393.12, 744.3085

 Guardian advocates are only appointed for individuals with developmental 

disabilities. The court considers them a “less restrictive form of 

guardianship,” even though the guardian advocates have the same 

powers, duties, and responsibilities required of a guardian under chapter 

744.” 

 Guardian advocate may be appointed, without an adjudication of 

incapacity, if the person lacks some, but not all, decision-making capacity 

to take care of person or property or if the person voluntarily petitioned for 

appointment. The guardian advocate is qualified to act as a guardian with 

the same powers, duties, and responsibilities. 
National Council on Disability 89

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

 Restoration of rights procedures are detailed under this subsection, but 

appear substantially similar to those in other guardianship statutes. 

Hawaii

Haw. Rev. Stat. Ann. 

§§ 333F-11

 Director of health may be appointed guardian of a person with an 

intellectual or developmental disability if: (a) there is no other suitable 

guardian; (b) the person is expected to need treatment in a residential 

facility; (c) the person was found “incapacitated” as defined in the 

guardianship statute; (d) the person is intellectually or developmentally 

disabled. 

Idaho

Idaho Code Ann § 66-

404 et seq.

 Determination of the presence of a developmental disability is part of the 

required findings for appointment of a guardian, but so is the person’s 

“ability to meet essential requirements of physical health or safety and 

manage financial resources.” Additionally, , “developmental disability” is 

defined in such a way that substantial adaptive functioning services and a 

continuing need for services are part of the definition. 

 Institutional commitment proceedings and guardianship appointment 

procedures are part of the same series of statutes entitled “Treatment and 

Care of the Developmentally Disabled.” 

 Legislative intent that “the citizens of Idaho who have developmental 

disabilities are entitled to be diagnosed, cared for, and treated in a manner 

consistent with their legal rights in a manner no more restrictive than for 

their protection and the protection of society, for a period no longer than 

reasonably necessary for diagnosis, care, treatment and protection, and to 

remain at liberty or be cared for privately except when necessary for their 

protection or the protection of society.”

 Evaluation committee must be appointed to evaluate the individual’s needs 

for a guardian and the appropriateness of the potential guardianship. The 

committee is made up of persons associated with the Idaho Department 

of Health and Welfare’s Bureau of Developmental Disabilities Services. In 

its report, the committee should state what specific skills the person has 

and suggest ways to limit the guardian, among other things. 

Iowa

Iowa Code §§ 222.34 

et seq.

 Statutory provision states, “if a guardianship is proposed for a person with 

an intellectual disability, guardianship proceedings shall be initiated and 
90 National Council on Disability

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

conducted” pursuant to Iowa’s standard guardianship statute (Iowa Code 

§ 222.34). 

 However, “[i]f the court appoints a guardian based upon mental incapacity 

of the proposed ward because the proposed ward is a person with 

an intellectual disability . . . the court shall make a separate determination 

as to the ward’s competency to vote. The court shall find a ward 

incompetent to vote only upon determining that the person lacks sufficient 

mental capacity to comprehend and exercise the right to vote” (Iowa Code 

§ 633.556(1)).

Kentucky

Ky. Rev. Stat. Ann 33 

§§ 387.550 to .880

 Kentucky’s “Guardianship and Conservatorship for Disabled Persons” 

refers to those who may be appointed a guardian as “having a legal 

disability.” The definition of “developmental disability” from the state’s 

general definitions of “disability” in this statute and uses the federal 

definition to define the former. However, nowhere else in the statute is 

the term “developmental disability” used, so it is not statutorily clear how 

this may impact people with ID/DD. Concerns may be raised that a person 

with a developmental disability could be presumed to need a guardian. 

 The Kentucky statute otherwise appears to pertain to all people with 

disabilities (who do not fall into some other category, such as minors or 

people under the jurisdiction of Veterans Affairs), rather than specifically 

people with ID/DD. 

Michigan

Mich. Comp Laws 

Ch. 4 330.1600 et 

seq.

 Guardianship of adults with ID/DD can only be appointed under this 

chapter. 

 Petition must be accompanied by a report that contains (1) a description of 

the person's developmental disability, (b) current evaluations of the 

person's mental, physical, social, and educational condition, adaptive 

behavior, and social skills, (c) an opinion whether guardianship is needed, 

the type and scope of the guardianship, and the reasons for the 

guardianship, (d) a recommendation concerning appropriate rehabilitation 

and living arrangements, (e) the signatures of those who performed the 

evaluations, one being a physician or psychologist who is competent in 

evaluating persons with developmental disabilities, and (f) a list of the 

person's medications.
National Council on Disability 91

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

 Appointment requires specific court findings on the record regarding the 

nature and extent of the person's impairment, the person's capacity to 

care for himself, the person's ability to manage his financial affairs, and the 

appropriateness of the proposed living arrangement. 

 To appoint a guardian there must be a finding on the extent of the person’s 

ability to make and communicate “responsible decisions concerning his or 

her person.” It is not clear from the context what a “responsible decision” 

would be. 

 Any limited guardianship established for developmentally disabled persons 

must be substantially and specifically limited in scope only to the extent 

necessitated by the individual's actual mental and adaptive limitations.

 The probate court needs only give "due consideration" to the individual’s 

preference regarding the person to be appointed guardian, rather than 

being required to appoint that designee unless he or she is unsuitable or 

unwilling to serve as guardian.

Minnesota

Minn. Stat. 

§§.252a.01-252a.21.

 Allows for the Commissioner of Human Services to be named as public 

guardian for an individual with a developmental disability if no other person 

is willing to become the person's guardian. 

 Whether the individual has a defined developmental disability is relevant to 

the proceedings. 

 For people subject to ID/DD guardianship, an annual review of physical, 

mental, and social adjustment and progress is required. 

 If the Commissioner determines the person no longer needs public 

guardianship, the commissioner or local agency shall petition the court to 

restore capacity and modify the court's previous order. 

 The person has certain rights including the right to petition the court for 

termination or modification of the guardianship and to be represented by 

an attorney in any proceeding.

 As public guardian, the commissioner is required to take actions and make 

decisions on behalf of the person that encourages and allows the 

maximum level of independent functioning in a manner least restrictive to 

personal freedom “consistent with the need for supervision and 

protection” and permit and encourage maximum self-reliance and input by 
92 National Council on Disability

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

the person’s nearest relative.

New York

NY Surr. Ct. Pro. Act 

Law §§ 1750-1761

 Appointments are driven by diagnosis (intellectual disability and 

developmental disability) rather than function, relying on a finding by health 

care professionals of the presence of certain developmental disabilities.

 A hearing on the guardianship petition is not required in all cases. For 

guardianship brought by parents, or another person with the consent of 

the parents, the court may dispense with the hearing. 

 Where there is a hearing, the person’s presence may be more easily 

dispensed (if “likely to result in physical harm,” or the person is “medically 

incapable” of attendance, or there are “such other circumstances which 

the court finds would not be in the best interest” of the person). 

 The burden of proof is lower—unlike the non-ID/DD statute (clear and 

convincing evidence of three-prong criteria) —and there is no indication of 

the burden of proof; and as a civil proceeding, it is presumptively 

preponderance of the evidence.

 There is no clear right to counsel.

 There is no clear right to cross-examine.

 There is no requirement for court findings after a hearing.

 There are no provisions for considerations to be taken by the court as to 

the eligibility and qualification of the guardian to be appointed.

 Upon determination of diagnosis and “best interest” finding, no less 

restrictive alternatives are required to be considered.

 Guardianship cannot be limited.

 It only requires annual financial reports by a guardian of property.

 Guardianship presumptively continues for the life of the person and can be 

modified to protect the person’s “financial situation and/or his or her 

personal interests” without a hearing. 

 The decisions of a guardian are based on “best interest.” 

 The guardian can make “any and all health care decisions” for the person 

with a disability—including those decisions which are typically prohibited 

by other states unless the person or next of kin directly consents—or is 

limited to only being authorized under very specific circumstances (such as 

withholding of life-saving care). 
National Council on Disability 93

State Main Distinctions Compared to

Non-ID/DD Guardianship Provisions

South Dakota

S.D. Cod. Laws 27B3-1 to 3-52 & 29A-5-

110

 Allows state institutions for people with developmental disabilities to file a 

guardianship petition if an individual they are serving cannot consent to 

being institutionalized. 

 An employee of the institution can be appointed as guardian “if the court 

finds the appointment is in the best interest of the minor or protected 

person.”
94 National Council on Disability
National Council on Disability 95

Appendix B: Table of Analysis of NCI Data for States & 

Guardianship for People with ID/DD

Source of Data: National Core Indicators, Chart Generator 2014-15, National Association of State 

Directors of Developmental Disabilities Services and Human Services Research Institute. Retrieved from 

the National Core Indicators website (http://www.nationalcoreindicators.org/charts/) on October 31, 2018 (for 

2008 to 2015 data) and January 18, 2018 (for 2015 to 2016 data) 

Key: G = Limited Guardianship, Full Guardianship, or Has a Guardian but unable to distinguish level; F = 

Full Guardianship; DK = Don’t Know; N/A = Chart not available; Total Resp. = Total Respondents

State 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Resp.

(2008-

16)

Annual

Mean

AL 27% G

26% F

0% DK

23% G

20% F

1% DK

20% G

18% F

1% DK

40% G

39% F

0% DK

23% G

22% F

0% DK

25% G

23% F

1% DK

N/A 22% G

19% F

1% DK

3031 26% G

24% F

1% DK

AR 42% G

33% F

0% DK

54% G

35% F

0% DK

54% G

31% F

1% DK

60% G

43% F

0% DK

60% G

45% F

0% DK

62% G

45% F

1% DK

60% G

43% F

1% DK

63% G

44% F

1% DK

3067 57% G

40% F

1% DK

AZ N/A N/A N/A 54% G

51% F

2% DK

N/A 56% G

55% F

3% DK

N/A 59% G

53% F

1% DK

1333 56% G

53% F

2% DK

CA N/A 16% G

7% F

5% DK

N/A 25% G

12% F

21% DK

N/A N/A 31% G

11% F

7% DK

N/A 25304 24% G

10% F

11% DK

CO N/A N/A N/A N/A N/A 43% G

39% F

0% DK

46% G

46% F

0% DK

47% G

41% F

0% DK

1217 45% G

42% F

0% DK

CT 78% G

64% F

0% DK

N/A N/A 80% G

67% F

0% DK

77% G

67% F

0% DK

79% G

69% F

1% DK

79% G

72% F

0% DK

83% G

75% F

1% DK

2385 79% G

69% F

0% DK

DE 29% G

24% F

6% DK

N/A N/A N/A N/A N/A 14% G

9% F

3% DK

24% G

11% F

3% DK

1060 22% G

15% F

4% DK
96 National Council on Disability

State 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Resp.

(2008-

16)

Annual

Mean

DC N/A 42% G

14% F

7% DK

N/A N/A N/A 37% G

14% F

10% DK

33% G

14% F

36% DK

54% G

17% F

11% DK

1222 42% G

15% F

16% DK

FL N/A N/A 25% G

20% F

1% DK

27% G

19% F

1% DK

28% G

21% F

1% DK

28% G

20% F

1% DK

29% G

19% F

1% DK

30% G

20% F

1% DK

7381 28% G

20% F

1% DK

GA 11% G

9% F

1% DK

14% G

11% F

2% DK

14% G

11% F

1% DK

17% G

14% F

0% DK

17% G

15% F

0% DK

17% G

14% F

0% DK

12% G

11% F

1% DK

16% G

15% F

0% DK

3886 15% G

13% F

1% DK

HI N/A N/A N/A 76% G

75% F

1% DK

77% G

76% F

1% DK

70% G

67% F

1% DK

70% G

67% F

1% DK

66% G

64% F

0% DK

2045 72% G

70% F

1% DK

IL 74% G

70% F

1% DK

65% G

59% F

1% DK

65% G

61% F

2% DK

65% G

62% F

2% DK

64% G

60% F

1% DK

62% G

57% F

1% DK

64% G

62% F

0% DK

71% G

68% F

0% DK

2950 66% G

62% F

1% DK

IN 34% G

29% F

0% DK

N/A N/A N/A 51% G

47% F

0% DK

57% G

53% F

1% DK

48% G

41% F

1% DK

52% G

47% F

1% DK

3039 48% G

43% F

1% DK

KS N/A N/A N/A N/A N/A 66% G

62% F

0% DK

66% G

63% F

2% DK

66% G

64% F

1% DK

1170 66% G

63% F

1% DK

KY 75% G

73% F

0% DK

75% G

74% F

0% DK

67% G

65% F

0% DK

63% G

62% F

1% DK

60% G

57% F

1% DK

63% G

60% F

0% DK

59% G

57% F

0% DK

64% G

62% F

0% DK

3581 66% G

64% F

0% DK

LA 16% G

13% F

4% DK

19% G

16% F

3% DK

23% G

19% F

3% DK

17% G

16% F

2% DK

14% G

12% F

2% DK

7% G

6% F

0% DK

8% G

8% F

1% DK

13% G

8% F

2% DK

3336 15% G

12% F

2% DK

MA 57% G

50% F

1% DK

N/A N/A 66% G

58% F

0% DK

N/A 58% G

54% F

0% DK

N/A 60% G

56% F

0% DK

2063 60% G

54% F

0% DK

MD N/A N/A N/A N/A 16% G

14% F

2% DK

16% G

13% F

4% DK

N/A N/A 745 16% G

14% F

3% DK

ME N/A 77% G

74% F

0% DK

77% G

74% F

0% DK

82% G

78% F

0% DK

46% G

21% F

0% DK

72% G

67% F

1% DK

78% G

74% F

0% DK

77% G

71% F

0% DK

2812 73% G

66% F

0% DK

MI N/A N/A N/A 72% G

51% F

0% DK

N/A N/A 73% G

56% F

0% DK

75% G

54% F

0% DK

1255 73% G

54% F

0% DK
National Council on Disability 97

State 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Resp.

(2008-

16)

Annual

Mean

MN N/A N/A N/A N/A N/A 87% G

87% F

1% DK

52% G

42% F

28% DK

54% G

0% F

29% DK

1239 64% G

43% F

19% DK

MO 82% G

78% F

0% DK

87% G

85% F

0% DK

83% G

80% F

1% DK

83% G

82% F

0% DK

84% G

82% F

1% DK

83% G

80% F

0% DK

85% G

84% F

0% DK

80% G

76% F

0% DK

3656 83% G

81% F

0% DK

MS N/A N/A N/A N/A 16% G

14% F

13% DK

N/A N/A 20% G

4% F

0% DK

805 18% G

9% F

7% DK

NC 63% G

56% F

1% DK

60% G

54% F

1% DK

64% G

56% F

1% DK

66% G

58% F

1% DK

71% G

64% F

0% DK

73% G

66% F

1% DK

68% G

61% F

1% DK

69% G

58% F

0% DK

6794 67% G

59% F

1% DK

NH N/A N/A 78% G

75% F

0% DK

N/A 72% G

69% F

0% DK

N/A 73% G

70% F

0% DK

N/A 1213 74% G

71% F

0% DK

NJ 70% G

64% F

4% DK

68% G

58% F

3% DK

N/A 65% G

51% F

2% DK

63% G

56% F

3% DK

70% G

63% F

1% DK

73% G

67% F

1% DK

N/A 2580 68% G

60% F

2% DK

NV N/A N/A N/A N/A N/A N/A N/A 33% G

29% F

0% DK

400 33% G

29% F

0% DK

NY 31% G

28% F

12% DK

29% G

26% F

11% DK

29% G

27% F

11% DK

33% G

29% F

10% DK

35% G

30% F

10% DK

36% G

33% F

6% DK

30% G

25% F

10% DK

35% G

26% F

6% DK

7548 32% G

28% F

10% DK

OH 41% G

28% F

2% DK

42% G

29% F

0% DK

49% G

37% F

1% DK

51% G

39% F

1% DK

50% G

35% F

0% DK

46% G

31% F

0% DK

34% G

25% F

0% DK

49% G

30% F

1% DK

3775 45% G

32% F

1% DK

OK 62% G

52% F

0% DK

61% G

49% F

0% DK

61% G

49% F

0% DK

N/A N/A 67% G

61% F

0% DK

58% G

53% F

0% DK

68% G

63% F

0% DK

2995 63% G

55% F

0% DK

OR N/A N/A N/A N/A 16% G

15% F

1% DK

N/A N/A N/A 396 16% G

15% F

1% DK

PA 12% G

10% F

8% DK

13% G

11% F

8% DK

14% G

13% F

7% DK

13% G

12% F

7% DK

13% G

11% F

7% DK

13% G

12% F

9% DK

14% G

12% F

8% DK

18% G

13% F

6% DK

8571 14% G

12% F

8% DK

RI N/A N/A N/A N/A N/A N/A N/A 26% G

22% F

5% DK

394 26% G

22% F

5% DK
98 National Council on Disability

State 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Resp.

(2008-

16)

Annual

Mean

SC 7% G

7% F

10% DK

N/A N/A 9% G

8% F

4% DK

8% G

6% F

13% DK

11% G

8% F

13% DK

9% G

7% F

10% DK

N/A 1942 9% G

7% F

10% DK

SD 52% G

49% F

0% DK

N/A N/A N/A N/A N/A 52% G

49% F

0% DK

68% G

64% F

0% DK

702 57% G

54% F

0% DK

TN N/A N/A N/A N/A N/A 56% G

44% F

1% DK

58% G

47% F

1% DK

60% G

43% F

1% DK

1308 58% G

45% F

1% DK

TX 37% G

34% F

1% DK

35% G

30% F

1% DK

N/A N/A 39% G

37% F

2% DK

N/A 49% G

43% F

3% DK

N/A 5608 40% G

36% F

7% DK

UT N/A N/A N/A N/A 47% G

37% F

0% DK

46% G

31% F

1% DK

44% G

31% F

2% DK

55% G

36% F

0% DK

1639 48% G

34% F

1% DK

VA N/A N/A N/A N/A 33% G

30% F

1% DK

38% G

34% F

1% DK

38% G

31% F

6% DK

39% G

30% F

2% DK

3094 37% G

31% F

3% DK

VT N/A N/A N/A N/A N/A N/A 75% G

71% F

0% DK

77% G

70% F

0% DK

653 76% G

71% F

0% DK

WA N/A 51% G

43% F

1% DK

N/A 47% G

43% F

1% DK

N/A N/A N/A 52% G

49% F

0% DK

1519 50% G

45% F

1% DK

WI N/A N/A N/A N/A 84% G

83% F

1% DK

N/A N/A 48% G

14% F

48% DK

758 66% G

49% F

25% DK

WY 59% G

59% F

0% DK

69% LF

66% F

0% DK

N/A N/A N/A N/A N/A 66% G

62% F

0% DK

1117 66% G

62% F

0% DK

Average

(state)

46% G

41% F

2% DK

47% G

40% F

2% DK

48% G

42% F

2% DK

51% G

44% F

3% DK

45% G

39% F

2% DK

50% G

43% F

2% DK

49% G

42% F

4% DK

52% G

41% F

3% DK

131588 49% G

42% F

3% DK
National Council on Disability 99

Appendix C: Additional Tables of Analysis of NCI Data 

for Guardianship and People with ID/DD

Source of Data: National Core Indicators, Chart Generator 2014-15, National Association of State 

Directors of Developmental Disabilities Services and Human Services Research Institute. Retrieved from 

the National Core Indicators website (http://www.nationalcoreindicators.org/charts/) on October 31, 2018 (for 

2008 to 2015 data) and January 18, 2018 (for 2015 to 2016 data) 

Key: Y = Limited Guardianship, Full Guardianship, or Has a Guardian but unable to distinguish level; F = 

Full Guardianship; DK = Don’t Know; N/A = Chart not available; Total Resp. = Total Respondents

Table 1: Age & Guardianship Status 

Age 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respond.

Annual

Average

18-34 45% Y

52% N

3% DK

46% Y

52% N

2% DK

51% Y 

48% N

2% DK

52% Y

46% N

2% DK

47% Y 

50% N

3% DK

51% Y

47% N

2% DK

52% Y

48% N

4% DK

54% Y

42% N

4% DK

See Note

403655 50% Y

48% N

3% DK

35-54 45% Y

53% N

2% DK

45% Y

53% N

2% DK

47% Y

50% N

2% DK

52% Y

46% N

2% DK

43% Y

54% N

2% DK

49% Y

49% N

2% DK

48% Y

48% N

4% DK

51% Y

46% N

3% DK

10708 48% Y

50% N

2% DK

55-74 44% Y

54% N

3% DK

48% Y

51% N

2% DK

49% Y 

49% N

2% DK

55% Y 

44% N

1% DK

44% Y

55% N

1% DK

49% Y

49% N

1% DK

47% Y

48% N

4% DK

49% Y

47% N

3% DK

24363 48% Y

50% N

2% DK

75 + 30% Y

65% N

6% DK

13% Y

79% N

9% DK

15% Y 

78% N

7% DK

35% Y

60% N

5% DK

8% Y

87% N

5% DK

22% Y

76% N

2% DK

28% Y

68% N

1% DK

44% Y

52% N

3% DK

785 24% Y

71% N

5% DK

Note: 18-22: 58% Y, 38% N, 5% DK (Total Respondents: 1178)

23-34: 53% Y, 43% N, 4% DK (Total Respondents: 5110)

Table 2: Gender & Guardianship Status 

Gender 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respond.

Annual

Average

Male 44% Y

53% N

3% DK

46% Y

52% N

2% DK

49% Y

50% N

2% DK

53% Y

46% N

2% DK

44% Y

53% N

2% DK

50% Y

48% N

2% DK

50% Y

49% N

2% DK

51% Y

45% N

4% DK

65088 48% Y

50% N

2% DK
100 National Council on Disability

Gender 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respond.

Annual

Average

Female 46% Y

51% N

2% DK

47% Y

51% N

2% DK

48% Y

50% N

2% DK

54% Y

45% N

2% DK

54% Y

45% N

2% DK

45% Y

52% N

5% DK

49% Y

47% N

4% DK

51% Y

45% N

3% DK

48657 49% Y

48% N

2% DK

Table 3: Race/Ethnicity & Guardianship Status 

Race/

Ethnicity

2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respond

Annual 

Average

American 

Indian or 

Alaska Native

N/A 47% Y

51% N

2% DK

54% Y

41% N

5% DK

71% Y

29% N

0% DK

N/A 83% Y

19% N

5% DK

N/A 69% Y

31% N

0% DK

2128 65% Y

34% N

3% DK

Asian 52% Y

35% N

13% DK

0% Y

100% N

0% DK

N/A 57% Y

35% N

8% DK

80% Y

21% N

0% DK

71% Y

29% N

1% DK

56% Y

41% N

4% DK

56% Y

44% N

1% DK

1686 53% Y

44% N

4% DK

Black/

African 

American

38% Y

59% N

3% DK

39% Y

57% N

3% DK

36% Y

61% N

3% DK

44% Y

54% N

2% DK

35% Y

62% N

3% DK

40% Y

57% N

4% DK

38% Y

58% N

4% DK

41% Y

54% N

4% DK

20815 39% Y

58% N

3% DK

Pacific Islander N/A N/A N/A 73% Y

26% N

1% DK

72% Y

28% N

0% DK

61% Y

37% N

1% DK

66% Y

33% N

1% DK

63% Y

38% N

0% DK

385 67% Y

32% N

1% DK

White 48% Y

50% N

2% DK

50% Y

48% N

2% DK

51% Y

48% N

2% DK

55% Y

43% N

2% DK

48% Y

51% N

2% DK

52% Y

46% N

1% DK

51% Y

45% N

4% DK

54% Y

43% N

3% DK

80067 51% Y

46% N

2% DK

Hispanic/Latino 45% Y

51% N

5% DK

23% Y

70% N

7% DK

34% Y

57% N

9% DK

47% Y

48% N

5% DK

49% Y

47% N

5% DK

47% Y

50% N

3% DK

42% Y

54% N

4% DK

39% Y

58% N

3% DK

6704 41% Y

54% N

5% DK

Other 51% Y

43% N

10% DK

11% Y

80% N

9% DK

24% Y

63% N

14% DK

39% Y

51% N

10% DK

28% Y

64% N

8% DK

48% Y

48% N

3% DK

33% Y

63% N

4% DK

43% Y

57% N

0% DK

3847 35% Y

59% N

7% DK

Two or More 

Races

N/A N/A N/A 76% Y

23% N

1% DK

68% Y

32% N

0% DK

61% Y

37% N

2% DK

35% Y

62% N

3% DK

69% Y

30% N

0% DK 

290 62% Y

37% N

1% DK

Table 5: Type of Residence & Guardianship Status 

Type of Residence 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respondents

Annual 

Average

Specialized 

Institutional Facility 

for Persons with 

ID/DD

69% Y

27% N

4% DK

64% Y

32% N

3% DK

76% Y

22% N

2% DK

72% Y

24% N

4% DK

71% Y

27% N

2% DK

71% Y

27% N

2% DK

N/A 

(see 

below)

N/A 

(see 

below)

5335 71% Y

27% N

3% DK
National Council on Disability 101

Type of Residence 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 Total 

Respondents

Annual 

Average

Nursing Facility 24% Y

73% N

3% DK

28% Y

64% N

8% DK

26% Y

59% N

15% DK

34% Y

60% N

6% DK

20% Y

81% N

0% DK

38% Y

55% N

7% DK

N/A (see 

below)

N/A (see 

below)

210 (PA, VA) 28% Y

65% N

7% DK

Institutional Setting 

(ICF/ID, nursing 

home, or other 

institutional setting)

N/A 

(see 

above)

N/A

(see 

above)

N/A

(see 

above)

N/A

(see 

above) 

N/A

(see 

above)

N/A

(see 

above)

62% Y

33% N

6% DK

64% Y

25% N

11%DK

2892 63% Y

29% N

9% DK

Group Home* 51% Y

46% N

3% DK

50% Y

48% N

2% DK

54% Y

45% N

2% K

60% Y

39% N

1% DK

49% Y

49% N

2% DK

54% Y

45% N

2% DK

57% Y

40% N

3% DK

58% Y

39% N

3% DK

31807 54% Y

44% N

2% DK

Agency-Operated 

Apartment Type 

Setting

37% Y

62% N

1% DK

47% Y

52% N

2% DK

40% Y

57% N

2% DK

52% Y

46% N

2% DK

37% Y

59% N

4% DK

51% Y

48% N

1% DK

N/A N/A 3804 44% Y

54% N

2% DK

Independent 

Home/Apartment**

22% Y

77% N

1% DK

28% Y

71% N

1% DK

29% Y

70% N

1% DK

31% Y

68% N

1% DK

25% Y

74% N

1% DK

28% Y

71% N

1% DK

28% Y

69% N

4% DK

34% Y

64% N

2% DK

16949 28% Y

71% N

2% DK

Parent/Relative’s 

Home

41% Y

56% N

3% DK

33% Y

64% N

3% DK

46% Y

52% N

2% DK

49% Y

50% N

2% DK

46% Y

52% N

2% DK

48% Y

50% N

3% DK

49% Y

47% N

4% DK

54% Y

43% N

4% DK

39914 46% Y

52% N

2% DK

Foster Care/Host 

Home

48% Y

49% N

3% DK

46% Y

51% N

3% DK

55% Y

44% N

2% DK

55% Y

43% N

2% DK

53% Y

46% N

0% DK

61% Y

39% N

0% DK

54% Y

44% N

2% DK

57% Y

40% N

3% DK

5818 54% Y

45% N

2% DK

Other 40% Y

55% N

4% DK

52% Y

43% N

6% DK

58% Y

40% N

2% DK

49% Y

45% N

6% DK

36% Y

59% N

5% DK

50% Y

46% N

4% DK

20% Y

66% N

15%DK

N/A 2461 44% Y

51% N

6% DK

* Referred to as a “Community-based residence/group home” in 2014-15 and “Group residential setting (group home)” in 2015-16.

** Referred to as “own home or apartment” in 2015-16.
102 National Council on Disability
National Council on Disability 103

Endnotes

1 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. 2 Unif. Guardianship and Protective Proceedings Act § 102 (Nat’l Conference of Comm’rs on Unif. State Laws 1997). 3 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%20Prote

ctive%20Arrangements%20Act. 4 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 February 11, 

2019, www.ncd.gov/publications/2005/12152005. 5 American Association on Intellectual and Developmental Disabilities, “Definition of Intellectual Disability,” accessed 

January 11, 2018, https://aaidd.org/intellectual-disability/definition. 6 Rosa’s Law, Pub. L. No 111-256, 124 Stat. 2643, October 5, 2010, accessed November 27, 2018, 

http://www.gpo.gov/fdsys/pkg/PLAW-111publ256/html/PLAW-111publ256.htm; U.S. President Barack Obama, 

Remarks by the President at the Signing of the 21st Century Communications and Video Accessibility Act of 2010, 

October 8, 2010, (including Presidential remarks on “Rosa’s Law”), accessed November 27, 2018, 

http://www.whitehouse.gov/the-press-office/2010/10/08/remarks-president-signing-21st-century-communicationsand-video-accessib. 7 42 U.S.C. § 15002(8).

8 Etienne Benson, “Intelligent Intelligence Testing: Psychologists Are Broadening the Concept of Intelligence and 

How to Test It,” American Psychological Association 34, no. 2 (2003): 48. 9 Margaret Semrud-Clikeman, “Research in Brain Function and Learning: The Importance of Matching Instruction to a 

Child's Maturity Level,” American Psychological Association, accessed February 11, 2019, 

https://www.apa.org/education/k12/brain-function.aspx. 10 National Council on Disability, Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 

for People with Disabilities (March 22, 2018), 27-36, accessed February 11, 2019, 

https://www.ncd.gov/publications/2018/beyond-guardianship-toward-alternatives. 11 Ibid. 12 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.

13 In re Orshansky, 804 A.2d 1077 (D.C. 2002). 14 In the Matter of M.R., 638 A.2d 1274, 1282 (N.J. 1994). 15 Kristen Booth Glen. "Supported Decision-Making and the Human Right of Legal Capacity." Inclusion 3, no. 1 (2015): 

2-16.

16 Tina M.Campanella, “Supported Decision-Making in Practice,” Inclusion 3, no. 1 (2015): 35-39. 17 Rebecca Bailey, Paul Wilner, and Simon Dymond, “A Visual Aid to Decision-Making for People with Intellectual 

Disabilities,” Research in Developmental Disabilities 32, no. 1 (2011): 37-46; Guilt Lotan and CaroLyn Ells, “Adults 

With Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for 

Professional—Client Practice,” Intellectual and Developmental Disabilities 48, no. 2 (2010): 112-25; R. Saaltink et al., 

“Protection, Participation and Protection through Participation: Young People with Intellectual Disabilities and 

Decision Making in the Family Context,” Journal of Intellectual Disability Research 56, No. 11 (2012): 1076-86. 18 Nina A. Kohn, Jeremy A. Blumenthal, and Amy T. Campbell. "Supported Decision-Making: A Viable Alternative to 

Guardianship?," Penn State Law Review 117, no. 4 (2013): 1111-1157. 19 The Arc for People with Intellectual and Developmental Disabilities, Autonomy, Decision-Making Supports, and 

Guardianship, accessed February 11, 2019, https://www.thearc.org/sslpage.aspx?pid=2351. 20 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. 21 Marsha Katz, “Alternatives to Guardianship,” Rural Institute for Inclusive Communities 5 (2008): 1-4. 22 Erin M. Payne-Christiansen and Patricia L. Sitlington, “Guardianship: Its Role in the Transition Process for Students 

 
104 National Council on Disability

with Developmental Disabilities,” Education and Training in Developmental Disabilities 43, no. 1 (2008): 7. 23 National Council on Disability, Beyond Guardianship, pages 119-37. 24 Kohn, "Supported Decision-Making: A Viable Alternative to Guardianship?,” 1111 – 1157, 1117; Gary L. Stein, 

“Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities,” U.S. Dept. of 

Health and Human Services, Office of the Assistant Secretary for Evaluation and Planning (October 2007), accessed 

February 11, 2019, https://aspe.hhs.gov/basic-report/advance-directives-and-advance-care-planning-peopleintellectual-and-physical-disabilities; 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.(stating that “many older adults with [intellectual disabilities] are capable and, 

with adequate and timely counseling, desirous of executing a proxy directive when a close family member or friend 

is available to serve in the surrogate role,” and noting that less capacity may be needed to appoint a surrogate 

decision-maker than to make the ultimate health care decision the surrogate is appointed to make). 25 Paul S. Appelbaum, Carol Mason Spicer, and Frank R. Valliere, “Informing Social Security’s Process for Financial 

Capability Determination,” The National Academies Press, accessed February 11, 2019, 

https://www.ncbi.nlm.nih.gov/books/NBK367675/. 26 Ibid. 27 Social Security Administration, Representative Payees: A Call to Action, 2016, accessed February 11, 2019, 

https://www.ssab.gov/Portals/0/OUR_WORK/REPORTS/Rep_Payees_Call_to_Action_Brief_2016.pdf. 28 National Resource Center for Supported Decision-Making, In Your State, accessed January 11, 2018, http 

://www.supporteddecisionmaking.org/states. 29 National Council on Disability, Beyond Guardianship, pages 53, 63-64. 30 Ibid., 90-92. 31 National Resource Center for Supported Decision-Making website, accessed February 11, 2010, 

www.supporteddecisions.org. 32 Kristin Booth Glen, “Piloting Personhood: Reflections from the First Year of a Supported Decision-Making Project,” 

Cardozo Law Review 39, no. 2 (2017): 495. 33 Disability Rights Maine, Supported Decision-Making, Support My Decision, accessed February 11, 2019, 

www.Supportmydecision.org. 

34 Center for Public Representation, “Legal Capacity: supported Decision Making,” accessed February 11, 2019, 

https://centerforpublicrep.org/initiative/supported-decision-making/. 35 Grace Raso and Nicole Newnham (producers) with Bread & Butter Films, “Supported Decision-Making: Gabby’s 

Story,” accessed February 11, 2019., https://www.youtube.com/watch?time_continue=1&v=UInXHR1YHMg. 36 "National Disability Rights Network, "Supported Decision Making and Health Care," accessed on May 30th, 2019. 

https://www.ndrn.org/resource/supported-decision-making-and-health-care/. 37 Mark Kantrowitz, “Age of Majority,” Savings for College, August 29, 2018, accessed February 11, 2019, 

https://www.savingforcollege.com/article/age-of-majority (indicating that exceptions to 18 being the age of majority 

included Alabama (19), Mississippi (21), and Puerto Rico (21)). 38 Individuals with Disabilities Education Act, 20 U.S.C. § 1415(m)(1) (2012); 34 C.F.R. § 300.530(a) (2015). 39 Office of Special Education Programs, IDEA Part B Existing for School Year 2013-2014, accessed February 11, 

2019, https://www2.ed.gov/programs/osepidea/618-data/collection-documentation/data-documentation-files/partb/exiting/idea-partb-exiting-2013.doc. 40 Arlene S. Kanter, “Guardianship for Young Adults with Disabilities as a Violation of the Purpose of the Individuals 

with Disabilities Education Improvement Act,” Journal of International Aging Law and Policy 8 (2015): 5. 41 Arlene Kanter, Julie Causton and Carrie E. Rood, “Presumption of Incompetence: The Systematic Assignment of 

Guardianship within the Transition Process,” Research and Practice for Persons with Severe Disabilities 39, no. 4

(2015): 323; Kanter, “Guardianship for Young Adults with Disabilities as a Violation of the Purpose of the Individuals 

with Disabilities Education Improvement Act,” Journal of International Law & Aging Policy 8 (2015): 52; Pam 

Lindsey, Barbara Guy, Michael L. Wehmeyer, and James Martin. “Age of Majority and Mental Retardation: A 

Position Statement of the Division on Mental Retardation and Developmental Disabilities,” Education and Training in 

Mental Retardation and Developmental Disabilities 36, no. 1 (2001): 13. 42 30 U.S.C. § 1415(m)(2); 34 C.F.R. § 300.520(b) (“A State must establish procedures for appointing the parent of a 

child with a disability, or, if the parent is not available, another appropriate individual to represent the educational 

interests of the child through the period of the child’s eligibility under Part B of the Act if, under State law, a child 

who has reached the age of majority, but has not been determined to be incompetent, can be determined not to 

have the ability to provide informed consent with respect to the child’s educational program”). 43 Kanter, “Presumption of Incompetence,” 321-22; Jonathan G. Martinis, "Supported Decision-Making: Protecting 

Rights, Ensuring Choices," Bifocal 36, no. 5 (2015): 107-110. 44 These states included Florida, Indiana, Louisiana, Nevada, Virginia, and Washington. Quality Trust for Individuals 

with Disabilities, Memorandum on Transfer of Parental Rights at Age of Majority, May 23, 2012, on file with authors.
National Council on Disability 105

45 Md. Education Code Ann. § 8-412.1(a). 46 Matt J. Jameson, Tim Riesen, Shamby Polychronis, Barbara Trader, Susan Mizner, Jonathan Martinis, and Dohn 

Hoyle. "Guardianship and the Potential of supported Decision Making With Individuals with Disabilities," Research 

and Practice for Persons with Severe Disabilities 40, no. 1 (2015): 36-51. 47 Payne-Christiansen, “Guardianship: Its Role in the Transition Process for Students with Developmental 

Disabilities,” 7.

48 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; Karrie A. Shogren and Michael L. Wehmeyer, “A Framework for 

Research and Intervention Design in Supported Decision-Making,” Inclusion 3, no. 1 (2015): 17-23. 49 Kanter, “Guardianship for Young Adults with Disabilities as a Violation of the Purpose of the Individuals with 

Disabilities Education Improvement Act,” 5. 50 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): 245-255. 51 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; Jennifer Moye and Aanand Naik, “Preserving Rights for Individuals Facing 

Guardianship,” Journal of the American Medical Association 305, no. 9 (2011): 937. 52 Jennifer Moye and Aanand D Naik. “Preserving Rights for Individuals Facing Guardianship” JAMA vol. 305,9 

(2011): 936-7. 53 National Council on Disability, Beyond Guardianship, pages 59 – 60, 139. 54 Olmstead v. L.C. ex rel Zimring, 527 U.S. 581, 581-82, 607 (1999). 55 Margaret “Jenny” Hatch, Samantha Alexandra 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): 65–74; 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. 56 Kanter, “Presumption of Incompetence,” 322. 57 20 U.S.C. § 1401(34); 34 C.F.R. § 300.320(b)(2015). 58 Kanter, “Presumption of Incompetence,” 321-22; Martinis, "Supported Decision-Making: Protecting Rights, 

Ensuring Choices," 225. 59 Kanter, “Presumption of Incompetence,” 321-22. 60 Payne-Christiansen “Guardianship: Its Role in the Transition Process for Students with Developmental 

Disabilities.” 10.

61 42 U.S.C. § 15001(b). 62 Rehabilitation Act of 1973, 29 U.S.C. §701 et. seq. (2014). 63 34 CFR 361.22. 64 29 U.S.C. § 3101, P.L. 113-128. 65 Rehabilitation Act of 1973 (as amended in 2014), 721(a)(15)(D)(iii)); see also Jonathan G. 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 (2015): 221-227. 66 Karrie A. Shogren, Michael L. Wehmeyer, Susan B. Palmer, Graham G. Rifenbark, and Todd D. Little, 

“Relationships Between Self-Determination and Postschool Outcomes for Youth with Disabilities. The Journal of 

Special Education 48, no. 4 (2015): 256-267; Laurie E. Powers, Sarah Geenen, Jennifer Powers, Summer PommierSatya, Alison Turner, Lawrence D. Dalton, et al. (2012). “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); Michael Wehmeyer and Michelle Schwartz, “SelfDetermination and Positive Adult Outcomes: A Follow-up Study of Youth with Mental Retardation or Learning 

Disabilities, Exceptional Children, 63, no. 2 (1997): 245-255; Michael Wehmeyer and Susan Palmer, “Adult 

Outcomes for Students with Cognitive Disabilities Three-Years After High School: The Impact of SelfDetermination.” Education and Training in Developmental Disabilities 38, no. 2 (2003): 131-144. 67 Elizabeth Pell and Virginia Mulkern, “Supported Decision-Making Pilot: Pilot Program Evaluation Year 2 Report,” 

Human Services Research Institute, accessed January 11, 2018, http://supporteddecisions.org/wpcontent/uploads/2016/11/Evaluation-Year-2-Report_HSRI-2016_FINAL-2-1.pdf. 68 Bradley et al., “National Core Indicators Data Brief,” 5. 69 John B. King, Jr., Sue Swenson, Janet L. LaBreck, Ruth E. Ryder, “A Transition Guide To Postsecondary Education 

And Employment For Students And Youth With Disabilities,” Office of Special Education and Rehabilitative Services 

United States Department Of Education, January 2017, accessed February 11, 2019, 

https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2017.pdf. 70 Ibid.
106 National Council on Disability

71 Glen, “Supported Decision-Making and the Human Right of Legal Capacity,” 3; Kanter, “Guardianship for Young 

Adults with Disabilities as a Violation of the Purpose of the Individuals with Disabilities Education Improvement Act,” 

18-21. 72 Neal v. Neal, 584 N.W.2d 654 (Mich. Ct. App.1998) (holding that the guardianship statute for people without 

developmental disabilities did not contain the “more stringent” safeguards found in the guardianship statute with 

developmental disabilities).

73 Florida Developmental Disabilities Council and Guardian Trust, “Restoration of Capacity Study and Work Group 

Report,” February 28, 2014, accessed February 11, 2019, 

http://www.guardianship.org/IRL/Resources/Handouts/Charting%20a%20New%20Course_Restoration%20Report.p

df. 74 Jason Stevenson, “Disability Law Center, ACLU Reach Settlement to Strengthen Legal Representation for 

Guardianship Hearings in Utah,” The Independent, December 19, 2018, accessed February 11, 2019, 

http://suindependent.com/disability-law-center-aclu-reach-settlement-strengthen-legal-representation-guardianshiphearings-utah/. 75 Dennis Romboy, “ACLU Sues Utah Over Disabled People's Right To A Lawyer In Guardianship Cases,” Deseret 

News, July 7, 2017, accessed February 11, 2019, https://www.deseretnews.com/article/865684409/ACLU-suesUtah-over-disabled-peoples-right-to-a-lawyer-in-guardianship-cases.html. 76 Utah Code Ann. § 75-5-303 (2018). 77 Stevenson, “Disability Law Center, ACLU reach settlement to strengthen legal representation for guardianship 

hearings in Utah.” The Independent, December 19, 2018. 78 Karen Andreasian et al., “Revisiting S.C.P.A. 17-A: Guardianship for People with Intellectual and Developmental 

Disabilities,” CUNY Law Review 18, no. 287 (2015): 335. 79 Olmstead Development and Implementation Cabinet, “Report and Recommendations of the Olmstead Cabinet: A 

Comprehensive Plan for Serving New Yorkers with Disabilities in the Most Integrated Setting,” October 2013, 

accessed February 11, 2019,

http://www.governor.ny.gov/sites/governor.ny.gov/files/archive/assets/documents/olmstead-cabinetreport101013.pdf. 80 ABA Commission on Law and Aging, “Guardian Health Care Decision-Making Authority and Statutory 

Restrictions,” April 11, 2014, accessed on February 11, 2019, 

https://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_HealthCareDecisionMakingAuthorityo

fGuardiansChart.pdf. 81 Unif. Guardianship and Protective Proceedings Act § 102 (Nat’l Conference of Comm’rs on Unif. State Laws 1997). 82 National Council on Disability, Beyond Guardianship, 71-73. 83 Erica Wood, “Guardian Accountability: Key Questions and Promising Practices,” Comparative Perspectives on 

Adult Guardianship, ed. Kimberly Dayton (2014) pp. 313-327. 84 Brenda K. Uekert and Richard Y. Shouffler, “Caseload Highlights: The Need for Improved Guardianship Data,” 

Court Statistics Project 15, no. 2 (2008). 85 Bradley et al., “National Core Indicators Data Brief.” 86 Ibid at 4.

87 National Core Indicators, “NCI Adult Family Survey State Outcomes: Alaska Report, 2015-16 Data, 7 (Graph 10), 

accessed May 9, 2019, https://www.nationalcore indicators.org/ upload/statereports/Alaska_AFS_Report_2015.pdf.0. 88 H.R. 336, 30th Leg., 2nd Reg. Sess. (Alaska 2017) (signed into law as Chapter 108 SLA 18, effective December 26, 

2018)

89 Bradley et al., “National Core Indicators Data Brief,” 5-6. See also Elizabeth Pell and Virginia Mulkhern, 

“Supported Decision Making Pilot: A Collaborative Report, Pilot Evaluation Year 1 Report,” Center for Public 

Representation, November 30, 2015, accessed February 11, 2019, http://supporteddecisions.org/wpcontent/uploads/2015/04/SDM-Evaluation-Report-Year-1_HSRI-2015.pdf. 90 Hatch et. al., “Unjustified Isolation Is Discrimination: The Olmstead Case against Overbroad and Undue 

Organizational and Public Guardianship," 65-74. 91 Pamela B. Teaster, et al., "Public Guardianship After 25 Years: In the Best Interest of Incapacitated People? 

National Study of Public Guardianship Phase II Report,” ABA Commission on Law and Aging (2007), accessed 

February 11, 2019, 

https://www.americanbar.org/content/dam/aba/administrative/law_aging/PublicGuardianshipAfter25YearsIntheBestIn

terestofIncapacitatedPeople.pdf. 92 Naomi Karp and Erica Wood, Choosing Home for Someone Else: Guardian Decisions on Long-Term Services and 

Supports, 1, August 2013, accessed February 11, 2019, 
National Council on Disability 107

http://www.aarp.org/content/dam/aarp/research/public_policy_

institute/cons_prot/2013/guardian-decisions-on-ltss-report-AARP-ppi-cons-prot.pdf. 93 Bradley et al., “National Core Indicators Data Brief,” 5. 94 Ibid. at 5.

95 489 F.3d 376 (D.C. Cir. 2007).

96 “Kavanaugh Letter,” The Association of University Centers on Disabilities, August 20, 2018, accessed February 

11, 2019, https://www.aucd.org/docs/policy/kavanaugh_letter_2018_0820_full_senate.pdf. 97 “Confirming Judge Kavanaugh Will Jeopardize Civil Rights for People with Disabilities,” The Association of 

University Centers on Disabilities, August 28, 2018, accessed February 11, 2019, 

https://www.aucd.org/template/news.cfm?news_id=13683&id=17. 98 Please note that, despite its name, the DC Department on Disabilities Services Developmental Disabilities 

Administration only serves people with intellectual disabilities. It does not serve people with developmental 

disabilities that do not also have an intellectual disability.

99 D.C. Code §§ 21-2041(d); 21-2049(b); 21-2049(c). 100 D.C. Code § 21-2002(d). 101 D.C. Code § 21-2044(a). 102 D.C. Code § 21-2044(a). 103 D.C. Code § 21-2047(a)(6). 104 D.C. Code § 21-2047(a)(7) & (8). 105 Quality Trust for Individuals with Disabilities, “Protecting the Right to Make Choices,” National Resource Center 

for Supported Decision-Making, accessed December 4, 2018, http://www.supporteddecisionmaking.org/impactstories/protecting-right-make-choices; University Legal Services, “Time for Change: A Call to Reform the District of 

Columbia’s Guardianship System,” March 10, 2014, accessed February 11, 2019, http://www.ulsdc.org/Time%20for%20Change.pdf. 106 D.C. Act 20-552 (2014). 107 D.C. Code § 20-2033(b). 108 In re Martel, slip op. No. 09-PR-281 (D.C. 2010). 109 D.C. Code § 21-2045.01. 110 Aisha Ivey-Nixon, “District of Columbia Working Interdisciplinary Network of Guardianship Stakeholders Final 

Report,” April 15. 2016, accessed February 11, 2019, 

http://naela.informz.net/NAELA/data/images/PDFs/2015%20DC%20WINGS%20final%20report%20without%20app

endices.pdf. 111 D.C. Courts, “Making a Complaint in an Adult Guardianship Proceeding,” accessed February 11, 2019, 

https://www.dccourts.gov/sites/default/files/Making-a-Complaint-in-an-Adult-Guardianship-Proceeding_0.pdf. 112 D.C. Mun. Regs. tit. 5, § E3002(b) (2018). 113 D.C. Mun. Regs. tit. 5, § E3023.1 (2016). 114 “Supporting Decision-Making for Students with Disabilities in DC,” National Resource Center for Supported 

Decision-Making, accessed February 11, 2019, http://www.supporteddecisionmaking.org/impact-stories/supportingdecision-making-students-disabilities-dc. 115 Morgan K. Whitlatch, “Moving Supported Decision-Making into Policy and Practice,” National Resource Center for 

Supported Decision-Making, accessed January 11, 2018, 

http://www.supporteddecisionmaking.org/sites/default/files/event_files//052516-ppt-2.pdf. 116 “Supporting Decision-Making for Students with Disabilities in DC.” National Resource Center for Supported 

Decision-Making. 117 D.C. Public Schools, Transfer of Rights Guidelines, August, 15, 2013, accessed February 11, 2019, 

http://transitioncentral.files.wordpress.com/2011/12/transfer-of-rights-guidelines.pdf. 118 D.C. Public Schools, Supported Decision-Making Form, accessed February 11, 2019, 

http://www.supporteddecisionmaking.org/sites/default/files/dcps_supported_decision_making_form_0.pdf. 119 Pamela R. Downing-Hosten, “Planning for Transition by Creating a Supported Decision-Making Network,” 

Supported Decision Making, accessed February 11, 2019, 

http://www.supporteddecisionmaking.org/sites/default/files/event_files/041615_ppt_handouts.pdf. 120 B. 20-0723, 20th Council Period, Reg. Sess. (D.C. 2015) (effective March 10, 2015). 121 D.C. Code § 38-2571.04(b). 122 D.C. Code § 38-2571.04(a)(3). 123 D.C. Code § 38-2571.04(a)(2).
108 National Council on Disability

124 D.C. Code § 38-2571.04(c). 125 D.C. Office of the State Superintendent of Educatio, Notice of Final Transfer of Rights Rulemaking, accessed on 

February 11, 2019, 

https://osse.dc.gov/sites/default/files/dc/sites/osse/page_content/attachments/Notice%20of%20Final%20Transfer%

20of%20Rights%20Rulemaking.pdf. 126 D.C. Office Of The State Superintendent Of Education, Education Decision-Making & Transfer of Rights: Special 

Education Decision-Making for Students Age 18 and Older, accessed February 11, 2019, 

https://osse.dc.gov/service/education-decision-making. 127 D.C. Mun. Regs. tit. 5-E, §§ 3035.3 – 3035.15. 128 Disability Services Reform Amendment Act Of 2018, D.C Law 22-93, D.C. Act 22-277. 129 National Resource Center for Supported Decision-Making, “Freedom for Ryan King,” December 12, 2016, 

accessed February 11, 2019, http://www.supporteddecisionmaking.org/node/427. 130 2016 Olmstead Plan and Appendices, D.C. Office of Disability Rights, accessed February 11, 2019, 

https://odr.dc.gov/page/016-olmstead-plan-and-appendices. 131 D.C. Code § 7-1305.07a. 132 D.C. Code § 21-2210. 133 D.C. Department on Disability Services, Annual Report for Fiscal Year 2018 and Plan for Fiscal Year 2019 to the 

Council of the District of Columbia on Substitute Decision-Makers and Psychotropic Medication for People with 

Developmental Disabilities,” November 1, 2018, accessed on February 11, 2019, 

http://lims.dccouncil.us/Download/41243/RC22-0228-Introduction.pdf. 134 Katherine Boo, “Forest Haven Is Gone, But the Agony Remains,” The Washington Post, March 14, 1999, 

accessed on February 11, 2019, https://www.washingtonpost.com/archive/politics/1999/03/14/forest-haven-is-gonebut-the-agony-remains/c2e3340a-08c6-4745-abdb-badb334648eb/?utm_term=.e49e2c855aed. 135 Patrice Gaines-Carter, “Life at Forest Haven Leads Couple to the Altar,” The Washington Post, July 5, 1984, 

accessed February 11, 2019, https://www.washingtonpost.com/archive/local/1984/07/05/life-at-forest-haven-leadscouple-to-the-altar/7a406614-3956-4aa1-8831-5bf4acb5682d/?utm_term=.2a7f40712834. 136 “Tiny Boy Is Born To Retarded Couple Seen on '60 Minutes,’” Washington Post, July 5, 1984, accessed February 

11, 2019, https://www.washingtonpost.com/archive/local/1986/12/08/tiny-boy-is-born-to-retarded-couple-seen-on-60-

minutes/de56b320-66d9-44b2-98d8-36a51ef9326c/?utm_term=.0130fdb3081e. 137 “Statement of Ricardo Thornton, Sr. Before the U.S. Senate, Committee on Health, Education, Labor and 

Pensions, Regarding Olmstead Enforcement Update: Using the ADA to Promote Community Integration” June 21, 

2012, accessed February 11, 2019, https://www.help.senate.gov/imo/media/doc/Thornton1.pdf. 138 Graeme Clifford and Paris Qualles, “Profoundly Normal,” 2003, https://www.imdb.com/title/tt0344236/. 139 Aurelien, G., Beatrice, M., Cannizzo, J., Capehart, A., Gassoumis, Z., Ph.D., Greene, M. (2018). National Adult 

Maltreatment Reporting System (NAMRS) FFY2017 Report 3: Case Component: 12. Administration of Community 

Living, U.S. Department of Health and Human Services, September 27, 2018, accessed February 11, 2019, 

https://acl.gov/sites/default/files/programs/2018-11/NAMRSFY17Case%20Component.pdf. 140 Ibid., 15. 141 Ibid., 66; see also Acker, D., Aurelien, G., Beatrice, M., Capehart, A., Gassoumis, Z., Ph.D., Gervais-Voss, P., 

Greene, M., Phillippi, M. (2018). NAMRS FFY2016 Report 3: Case Component: 60, Administration for Community 

Living, U.S. Department of Health and Human Services, July 23, 2018, accessed February 11, 2019, 

https://acl.gov/sites/default/files/programs/2018-07/NAMRSFY16CaseComponent-Final.pdf.
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