Overview

Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

Supported Decision-Making: U.S. Status and Trends

Author(s)

Tina M. Campanella is CEO of Quality Trust for Individuals with Disabilities, Washington, DC. She may be reached at tcampanella@dcqualitytrust.org.

Morgan K. Whitlatch is Legal Director of Quality Trust for Individuals with Disabilities. She may be reached at mwhitlatch@dcqualitytrust.org.

The photo across the top of the first page of the article “Supported Decision-Making: U.S. Status and Trends” shows a man with Down syndrome sitting at a table next to a woman who is assisting him with a task. They are both smiling and looking at each other, and in front of them on the table is an open notebook. The woman is holding a pencil as they talk.

Supported Decision-Making (SDM) is emerging nationally as a recognized and preferred way to support people with disabilities and older adults in making their own decisions and determining their path in life. While there is no singular definition or model, SDM generally occurs when people work with friends, family, professionals, and others they trust to help them understand the situations and choices they face, so that they can make their own decisions (Dinerstein, 2012; Quality Trust for Individuals with Disabilities et al., 2014). SDM has been recognized by scholars as having strong potential for promoting self-determination and favorable outcomes in the lives of people with disabilities and older adults, and studies are underway to verify such outcomes (Blanck & Martinis, 2015).

“I don’t need a guardian. I just need a little help”

– Jenny Hatch, Virginia resident (Martinis, n.d.)

Many see the United Nations Convention on the Rights of Persons with Disabilities (CRPD) as the impetus of current reform efforts advancing SDM (Dinerstein, 2012). Article 12 of the CRPD requires signatory nations to “recognize that persons with disabilities enjoy legal capacity on an equal basis to others in all aspects of life” and “take appropriate measures to provide access by a person with disabilities to the support they require in exercising their legal capacity” (United Nations, 2006). As the CRPD Committee explained, the term “SDM” describes one of the ways a person may be assisted in exercising legal capacity (de Bhailis & Flynn, 2017).

“First get to know me before you get to judge me.”

– Ryan King, DC resident (Quality Trust for Individuals with Disabilities, 2014)

While the U.S. is not among the many countries that ratified the CRPD, SDM has been recognized and endorsed by the U.S. Department of Health and Human Services, Administration for Community Living (ACL), which funded the National Resource Center for Supported Decision-Making (NRC-SDM) beginning in 2014. Since that time, there has been a marked increase in recognition of SDM by U.S. state courts, legislatures, and policymakers, as well as in legal literature and advocacy discourse. For example:

  • State courts have formally recognized and protected a person’s right to use SDM instead of being subjected to permanent guardianship in New York, Virginia, Massachusetts, Washington DC, Florida, Indiana, Kentucky, Maine, Minnesota, Nevada, and Vermont.
  • State legislation has recognized SDM in legal agreements (Texas, Delaware, Wisconsin, DC, Missouri, Alaska, North Dakota, Indiana, and Nevada), special education (DC and Texas), and areas of medical decision-making (Maryland, Delaware, Kansas, Ohio, North Dakota, and Washington). Missouri and Maine statutes specifically state that SDM must be ruled out prior to the appointment of a guardian. As of May 2019, at least 14 states had pending SDM-related bills in their legislatures.
  • SDM pilot projects have occurred or are underway in California, Georgia, Indiana, Kentucky, Massachusetts, Maine, New York, North Carolina, South Carolina, Texas, and Vermont, among others.
  • The NRC-SDM has administered grants for state-based projects to increase knowledge of and access to SDM by older adults and people with disabilities across the life course. Grantees included collaborations in Delaware, DC, Florida, Georgia, Indiana, Maine, Minnesota, Mississippi, North Carolina, Nevada, New York, Oregon, South Carolina, Tennessee, and Wisconsin (Whitlatch, 2019).

    “[Supported Decision-Making has] been a goal of mine for four years, and it’s super awesome that now it’s official. I won’t have to ask permission for things anymore and will use my best judgment in making decisions with the help of my supporters.”

    – Joshua Strong, Maine resident (Disability Rights Maine, 2018)

    SDM also is recognized and encouraged by influential public and private organizations and agencies:

    • The National Guardianship Association (2016) has stated that SDM should be attempted, whenever possible, before guardianship is sought and after it is ordered.
    • The American Bar Association Commission on Law and Aging (2018) has developed the PRACTICAL Tool to help attorneys identify and implement less-restrictive decision-making options, including SDM.
    • The Arc of the United States and the American Association on Intellectual and Developmental Disabilities (2016) have issued a joint position statement promoting the use of less-restrictive options for decision-making support, including SDM.
    • The Uniform Law Commission (2017) has approved revisions to the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act (UGCOPAA). This model law formally recognizes SDM and requires its consideration by courts as a less-restrictive alternative to guardianship. As of May 2019, two states, Maine and Washington, passed versions of the UGCOPAA that included references to SDM.
    • The House of Delegates of the American Bar Association (2017) has approved ABA Resolution 113 urging the amendment of state guardianship statutes to require that SDM “be identified and fully considered as a less restrictive alternative before guardianship is imposed” and be considered as “grounds for termination of a guardianship and restoration of rights” (p. 95).
    • Other federal agencies and advisory boards – including the U.S. Department of Education’s Office of Special Education and Rehabilitative Services, the U.S. Social Security Advisory Board, and the U.S. Senate Special Committee on Aging – have specifically recognized SDM as an alternative to adult guardianship and substitute decision-making arrangements (U.S. Department of Education, 2017; Social Security Advisory Board, 2016; U.S. Senate Special Committee on Aging, 2018).
    • The National Council on Disability (2018, 2019) has expressly linked SDM to the goals of U.S. laws and federal policy impacting people with disabilities, including the Americans with Disabilities Act, the Rehabilitation Act, the Individuals with Disabilities Education Act, the Developmental Disabilities Assistance and Bill of Rights Act, and the Medicaid and Home and Community Based Services regulations.

    “This is a good opportunity for people like me. They get more choices and [are] able to make more decisions on their own to help them spread their wings and see what they want to do and open the door to new possibilities. It’s endless.”

    – Jamie Beck, Indiana resident (Odendahl, 2018)

    While there has been significant progress in advancing SDM in the U.S. over the last five years, more work is needed to ensure that SDM is firmly embedded within the ethos and practice of supporting people with disabilities across the lifespan. Future demonstration projects should focus on people with significant disabilities, explore ways to support people who have no one to act as a supporter, and expand the use of practical strategies that promote SDM “on the ground.” Continuing education on SDM for educational, medical, and financial professionals, legal practitioners, and the judiciary also will be required to support continued progress toward reaching the goal of advancing everyone’s right to make choices.

    References

    • American Bar Association, Commission on Law and Aging. (2018). PRACTICAL Tool. Retrieved from https://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice/practical_tool/.

    • American Bar Association, House of Delegates. (2017, July). ABA urges supported decision-making as a less restrictive alternative to guardianship. Bifocal, 38(6), 95.

    • Blanck, P., & Martinis, J. G. (2015). “The right to make choices”: The national resource center for SDM. Inclusion, 3(1), 24–33. Retrieved from https://doi.org/10.1352/2326-6988-3.1.24

    • de Bhailis, C., & Flynn, E. (2017). Recognising legal capacity: Commentary and analysis of Article 12 CRPD. International Journal of Law in Context, 13(1), 6021. https://doi.org/https://doi.org/10.1017/S174455231600046X

    • Dinerstein, R. (2012). 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(2), 8–12. Retrieved from https://digitalcommons.wcl.american.edu/hrbrief/vol19/iss2/2/

    • Disability Rights Maine. (2018, June 13). Press release: Guardianship terminated in favor of supported decision-making for the first time in Maine. Retrieved from https://drme.org/news/2018/guardianship-terminated-in-favor-of-sdm-1st-time-in-maine

    • Martinis, J. (n.d.). From justice for Jenny to justice for all: EVERYONE has the right to make choices. Retrieved from http://supporteddecisionmaking.org/blogs/jonathan-martinis/justice-jenny-justice-all-everyone-has-right-make-choices

    • National Council on Disability. (2018). Beyond guardianship: Towards alternatives that promote greater self-determination for people with disabilities. Retrieved from https://ncd.gov/publications/2018/beyond-guardianship-toward-alternatives

    • National Council on Disability. (2019). Turning rights into reality: How guardianship and alternatives impact the autonomy of people with intellectual and developmental disabilities. Retrieved from https://ncd.gov/publications/2019/turning-rights-into-reality

    • National Guardianship Association. (2016). Position statement on guardianship, surrogate decision-making, and supported decision-making. Retrieved from https://www.guardianship.org/wp-content/uploads/2018/09/SupportedDecision _Making_PositionStatement.pdf

    • Odendahl, M. (2018, June 12). Indiana woman makes judicial history by seeking supported decision making agreement. The Indiana Lawyer. Retrieved from https://www.theindianalawyer.com/articles/47278-indiana-woman-makes-judicial-history-by-seeking-supported-decision-making-agreement

    • Quality Trust for Individuals with Disabilities. (2014). Ryan King’s quest. Retrieved from http://supporteddecisionmaking.org/impact-stories/ryan-king-updated

    • Quality Trust for Individuals with Disabilities, The Council on Quality and Leadership, & Burton Blatt Institute. (2014). Supported decision-making: An agenda for action. Retrieved from http://jennyhatchjusticeproject.org/node/264

    • Social Security Advisory Board. (2016). Representative payees: A call to action. Retrieved from https://www.ssab.gov/Details-Page/ArticleID/899/Representative-Payees-A-Call-to-Action-March-2016

    • The Arc of the United States and the American Association on Intellectual and Developmental Disabilities. (2016). Joint position statement on autonomy, decision-making supports, and guardianship. Retrieved from https://www.thearc.org/who-we-are/position-statements/rights/Autonomy-Decision-Making-Supports-and-Guardianship

    • Uniform Law Commission. (2017). Uniform guardianship, conservatorship, and other protective arrangements act. Retrieved from https://www.uniformlaws.org/committees/community-home?CommunityKey=2eba8654-8871-4905-ad38-aabbd573911c

    • United Nations. (2006). Convention on the rights of persons with disabilities. Treaty Series, 2515, Art.12.

    • U.S. Department of Education, Office of Secondary Education and Rehabilitative Services. (2017). A transition guide to postsecondary education and employment for students and youth with disabilities. Retrieved from https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-may-2017.pdf

    • U.S. Senate Special Committee on Aging. (2018). Ensuring trust: Strengthening efforts to overhaul the guardianship process and protect older adults. Retrieved from https://www.aging.senate.gov/imo/media/doc/Guardianship_Report_2018_gloss_compress.pdf

    • Whitlatch, M. K. (2019). Supported decision-making: Update on U.S. trends (PowerPoint). Retrieved from http://www.supporteddecisionmaking.org/sites/default/files/NRC-SDM-Presentation-US-Trends-190517.pdf

    Note

    Note: This article is supported, in part, through Cooperative Agreement #90DM0001 from the Administration for Community Living (ACL), U.S. Department of Health and Human Services, Washington, D.C. Points of view or opinions do not necessarily represent official ACL policy.