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October 2022 Disability Task Force Meeting: Supported Decision Making, An Alternative to Guardianship

On October 20th the DTF met and a panel of experts discussed Supported Decision Making (SDM), an alternative to guardianship, and addressed what it means for organizations and families.

Panel members included:

Michael J. Kendrick, PhD, The Center for Public Representation

Maura Sullivan, The ARC of Massachusetts

Craig Kinney, Self-advocate

Sandra Kinney, Parent

After panel presentations, there was a Q&A and discussion with DTF members.

  • Michael Kendrick PhD, Center for Public Representation talked about the important efforts to let people know about supported decision making, and legislation supporting this option which protects basic freedoms for adults with disabilities. There are now 20 states that have supported decision making options in place, along with other countries that have adopted supported decision making options. Guardianship removes decision making rights of individuals which limits their choices and life opportunities. Supported decision making allows adults to maintain their rights while providing assistance and support needed to make decisions in areas such as finances, health care and education by appointing trusted adults to help them in each area. Dr. Kendrick referenced a video about supported decision making that includes interviews with transition-aged youth who are using SDM. (See video here) Experience in other states and countries demonstrates the success of supported decision making for individuals who choose this option.
  • Maura Sullivan, from the ARC of Massachusetts talked specifically about supported decision making legislation in Massachusetts, S.124 and H. 272, that the ARC hopes will pass soon. She asked the group to reach out their legislators to support this important legislation. Maura talked about how Britney Spears’ experiences brought this issue to the forefront for the first time for many. Maura stressed that while supported decision making is a less restrictive option, guardianship is still available for those that need it. (See Maura Sullivan’s slides here)
  • Craig Kinney, self-advocate, and Sandra Kinney, parent: Craig has been using supported decision making for seventeen years. His family never pursued guardianship, even during a time he was going through complex medical issues, because they believed he had a right to be able to make his own decisions, the same as his siblings. Sandra noted that similar to her non-disabled adult children, sometimes Craig does makes choices that are different than what his parents might choose. Craig has chosen his mother to be one of his supporters as well as his sister. Craig also has a healthcare proxy and has designated someone with a power of attorney to provide support. Sandra believes it is also important to create ongoing support for Craig since she knows that at some point in the future, she and her husband will no longer be present.  Sandra talked about the importance of training for schools, providers, and adult agencies to make sure that young adults and families are aware that supported decision making is an option to consider. At age 14 Craig started participating in his IEP meetings, and when he turned 18, he did not choose to share IEP decision making.  This was an important opportunity for him to learn to advocate for himself, which is key for supported decision making.

Click here to see Maura Sullivan’s slides

Click here to view a fact sheet on “An Act Relative to Supported Decision Making Agreements for Certain Adults with Disabilities.”

Click here to view Supported Decision Making Flyer

Click here to view a new joint video on supported decision making.