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:
“[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:
“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.
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: 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.