Supported Decision-Making By Disabled Persons: Promoting Self-Determination and Universal Access

By Center for Public Representation (“CPR”)

The notion that, as human beings, we can make the decisions that allow us to chart the course of our own lives is a critical part of how we see ourselves and move through the world. Nonetheless, people with disabilities are often placed in overly broad and restrictive court-ordered guardianships that severely limit their personal autonomy and decision-making.

       Adults subject to guardianship (estimated at more than 1.3 million nationwide)[i]  frequently have little to no rights to make their own decisions about deeply personal issues, including health care,  finances, marriage, and raising a family, as well as where they live and with whom they associate. As a United States Congressional Committee found, guardianship is “the most severe form of civil deprivation which can be imposed on a citizen of the United States,” and that the “typical ward has fewer rights than the typical convicted felon.”[ii]

“Not having a say in decisions would feel “like I don’t have a voice . . . like . . . I have these invisible shackles around my neck.”

- Josué “Omar” Torres, a young man with a developmental disability who shared his story during a training organized by Conexiones Latinx-MA and CPR 

A wide array of options, other than guardianship, can provide support with decision-making without ceding choice. Healthcare proxies, advanced directives, powers of attorney, or money management strategies can help adults with disabilities – to retain their legal rights. Over the last fifteen years, another option, Supported Decision-Making (SDM), has been gaining traction in the United States.[iii] SDM recognizes the right of people with disabilities to work with chosen supporters to make their own life decisions.[iv] Decades of research have shown that people with disabilities who have greater control over their lives have better life outcomes, are more integrated into their communities, are healthier, and are more able to resist and avoid abuse.[v]

From CPR’s deep experience with SDM initiatives,[vi] we know that shifting the tide away from overbroad and unnecessary guardianships cannot be accomplished without robust community education and buy-in. Yet, too frequently, communities supporting people with disabilities are not given the information that they need to understand that less-restrictive options are available and might be more appropriate before they get to the courthouse door. As education about and use of SDM expands, outreach strategies must  be intentionally designed to effectively reach underserved and underrepresented communities.

With this goal in mind, and in collaboration with key partners, CPR has implemented state[vii] and national[viii] initiatives designed to increase access to SDM in marginalized communities. We have encouraged organizations to consider the lessons we learned, including the importance of:

• Building mutually beneficial relationships with cultural brokers --Identify and meaningfully connect with community leaders in impacted communities to learn whether outreach, education and training about SDM is welcome, relevant, and timely. If it is, follow their lead on how best to design, structure, and deliver educational opportunities. To ensure that the relationships are mutually beneficial beyond the scope of these trainings, CPR amplifies the partners’ work internally and externally and provides legal information and referrals on a variety of topics, as requested.[ix]

• Assessing internal limitations and being self-aware and humble -- In new projects it has undertaken, CPR uses an assessment tool to evaluate the initiative’s impact on people with disabilities within underserved communities, identifies the factors that create barriers, and outlines a plan for impacted groups and community leaders to inform the work.[x]

• Respecting intersectionality and recognizing that one size does not fit all -- Other dimensions of a person’s life like “ethnicity, social class, gender, family life stages and language proficiency”[xi] can impact their access, experience, and response to the guardianship system and less-restrictive options.

• Acknowledging Western legal and societal constructs -- Adult guardianship in the United States has its roots in Western law dating back to the ancient Greeks.[xii] Some communities may not be familiar with such laws or common legal tenets. For example, CPR has learned that families in some cultural communities may not fully appreciate what legal adulthood means in Massachusetts – i.e., when children with disabilities turn 18, their parents no longer have the right to make their decisions.  For certain cultural communities, focusing on SDM as a way to exercise one’s “own rights” and “access independence” may not resonate.  Messaging that SDM is a tool for interdependence and support outside legal court systems may be more persuasive.[xiii]

•  Being flexible in structuring education events -- In CPR’s recent SDM training project in Massachusetts, the format of the trainings varied widely across cultural communities. Different formats, such as the use of lengthy Q & A, social media, or hybrid events, might work better in some cultures.

•  Recognizing that language matters -- Solicit recommendations from community leaders about the quality and effectiveness of interpreters’ services.  Remember that presenting in English with simultaneous interpretation is not as accessible as presenting in the audience’s preferred language.[xiv]

•  Amplifying the voices of people with lived experience -- People with lived experience and community leaders should drive the development of any training initiative and deliver the message in their own words. CPR recognizes people with disabilities and their family members as the true and most persuasive experts by incorporating their insights into the curricula, presenting alongside them in trainings, and compensating them for their time.[xv]
  

“I really like Leonard’s perspective. It made me think of my daughter and how she would like to be treated and supported.”

--Attendee of a presentation offered by CPR and Parent/Professional Advocacy League (PPAL) in which Leonard Stevens, who has both IDD and a mental health disability, shared his experience using SDM.

About the Center for Public Representation

 CPR is a 2024 grantee of the Barbara McDowell Foundation. The grant supported  work on a class action lawsuit filed in January 2024 on behalf of Medicaid-eligible children in Georgia who are being deprived of mental health services they need to treat their conditions and remain at home with their families.

 For almost five decades, CPR has fought to advance and enforce the rights of people with disabilities using diverse legal strategies, systemic reform initiatives, and policy advocacy. CPR is a national and international leader in advancing Supported Decision-Making through training and technical assistance, as well as pilot programs in Massachusetts and Georgia.

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[i] Nat’l Ctr. for State Cts., Brief No. 7: Data Quality Undermines Accountability in Conservatorship Cases, at 5 (2018).

[ii] U.S. House of Representatives Select Committee on Aging, Abuses in Guardianship of the Elderly and Inform: A National Disgrace, H.R. Rpt. 100-639, at 1, 4 (Sept. 25, 1987).

[iii] See Angela Rapp Kennedy, Carli Friedman, & Morgan Whitlatch, Supported Decision-Making: An Update on Trends in the United States, The Council on Quality & Leadership Capstone Newsletter (Nov. 21, 2024), CPR, U.S. Supported Decision-Making Laws (last visited February 21, 2025); U.S. Dept. Of Health & Human Serv., Final Rule: Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance, 89 Fed. Reg. 40,066, at 40,082, 40,089-090, 40,097, 40,098-099, and 40, 0110 (effective July 8, 2024) (framing SDM as a reasonable modification for people with disabilities with the regulation’s preamble).

[iv] See Unif. Guardianship, Conservatorship, & Other Protective Arrangements Act, § 102(31) (2017) (defining SDM as “assistance from one or more persons of an individual’s choosing in understanding the nature and consequences of potential personal and financial decisions, which enables the individual to make the decisions, and in communicating a decision once made if consistent with the individuals wishes”).

[v] See National Council on Disability, Beyond Guardianship: Towards Alternatives That Promote Greater Self-Determination (2018), 132 and n. 332 (citing research studies on the impact of self-determination on people with intellectual and developmental disabilities).

[vi] See CPR, Supported Decision-Making website, https://supporteddecisions.org (last visited February 21, 2025); Cathy Costanzo, Anna Krieger, & Kristen Booth Glen, Supported Decision-Making: Lessons from Pilot Projects, 72 Syracuse L. Rev. 99 (2022); CPR, Legal Capacity: Supported Decision-Making (last visited February 21, 2025).

[vii] See CPR, Final Report: Addressing Diversity, Equity, Inclusion: A Project to Advance Supported Decision-Making Through Community Partnerships (July 31, 2024); CPR, SDM: Promoting Universal Access, last visited February 21, 2025).

[viii] See Center on Youth Voice, Youth Choice, Empowering Youth to Advance Alternatives to Guardianship, (website of national resource center that advances alternatives to guardianship for youth with intellectual and developmental disabilities; CPR provides technical assistance of 11 state teams across the country).

[ix] CPR, Final Report, supra note 7, at 6.  

[x] Id. at 3.

[xi] Yali Pang, Parthenia Dinora & Dana Yarbough, The Gap Between Theory and Practice: Using Cultural Brokering to Serve Culturally Diverse Families of Children with Disabilities, Disability & Society, at 4 (2019).

[xii] See NCD, supra note 5, at 54.

[xiii] See CPR Final Report, supra note 7, at 7.

[xiv] Id. at 12.

[xv] Id.at 11.