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

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).

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).

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).

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.

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.