Supported decision making (SDM) is one alternative to guardianship. With SDM, individuals retain their right to make decisions for themselves, with the support of trusted friends and/or family members they choose.
SDM involves tools that help individuals identify the type or types of help they need and how to go about getting that help and recognizes that different people need different kinds of help. For example, some people may need support making financial or health care decisions, whereas others may need help deciding on housing or transportation. Some people may need help with many types of decisions, and others may need help with only one or two. Some people need one-on-one support and discussion about the issue at hand but a team approach may work best for others. The SDM model can be tailored to help people find solutions for their specific needs.
SDM is person-centered – this means SDM solutions are based on the wants and needs of the individual receiving support. SDM keeps control in the hands of the individual providing customized assistance in specific ways and in specific situations that are useful to the individual.
The National Resource Center for Supported Decision Making
In 2014, ACL funded the creation and first five years of operation of the National Resource Center for Supported Decision Making. This effort was a collaboration with the Quality Trust for Individuals with Disabilities and their partners, the Burton Blatt Institute of Syracuse University, The Kansas University Life Span Institute, The American Bar Association Commission on Law and Aging, the Autistic Self Advocacy Network, Family Voices, and Parent to Parent USA.
During the five years of ACL funding, the SDM Resource Center:
- Documented and disseminated information about successful supported decision-making practices;
- Conducted research to fill data and information gaps;
- Developed training materials and provided technical assistance to ACL networks on SDM issues, including youth transition;
- Delivered at least 494 in‐person and virtual presentations on SDM, reaching older adults, people with disabilities, parents and families, teachers, case managers, attorneys, judges, vocational rehabilitation specialists, pediatricians, gerontologists, abuse and neglect investigators, direct support professionals, social security specialists, Medicaid administrators and school administrators.
- Developed a strategy to measure and demonstrate the impact of supported decision-making on the lives of people with intellectual and developmental disabilities and older Americans;
- Administered a small grants demonstration program that funded 16 projects in 14 states; and operated a clearinghouse of existing materials and resources, academic work and practices, success stories, and newly-developed research and training materials, which remains available to the general public.
Between October 2019 and September 2020, ACL awarded three new grants totaling $225,000 to support a year of planning for future state-based collaborative projects to make progress in strategies and to facilitate decision supports for all adults. These grants were awarded to the following:
- Kansas University Center on Developmental Disabilities (a UCEDD) with partners including the Kansas Association of Area Agencies on Aging and Disabilities, older adults, people with intellectual and developmental disabilities, families, guardians, judges, legislators, and professionals;
- Indiana Disability Rights and the Indiana Institute on Disability and Community (a UCEDD), with many partners* including people with disabilities, professional guardians, and service providers; and
- University of Missouri on behalf of UMKC (UCEDD) with partners including the Missouri Department of Health and Senior Services, Missouri Developmental Disabilities Council, and Missouri Protection and Advocacy.
These planning grants supported state coalitions to develop action plans for advancing strategies that will ensure self-determination of older adults and people with intellectual and developmental disabilities through the use of a full range of decisional supports. The plans were developed with consensus from inclusive representational groups of disability and aging communities, and other key stakeholders.
Two of these grantees received one-year no-cost extensions which allowed them to extend their activities to September 2021. The projects will use the no-cost extension period to gain feedback on their plans from stakeholders.
For More Information
For more information about supported decision making, visit the National Resource Center for Supported Decision Making webpage.
*Additional partners were Working Interdisciplinary Networks of Guardianship Stakeholders (WINGS), the Indiana Association of Area Agencies on Aging Older Adults, Indiana Adult Guardianship Office, the Indiana State Bar Association, the Governor’s Council for People with Disabilities People, Indiana Legal Services, the Indiana Chapter of AARP, Family Voices of Indiana, the Indiana Division of Aging, the Indiana Division of Disability and Rehabilitation Services, Department of Education, Indiana Adult Protective Services, and Indiana Adult Guardianship Services.