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CPR developed the Supported Decision-Making Initiative to explore an alternative to guardianship for individuals with intellectual or developmental disabilities. People with disabilities may need assistance making decisions about living arrangements, health care, lifestyles and financial matters, but they don’t necessarily need a guardian to make those decisions for them. Instead, what they might need is a trusted group of “supporters” to help answer their questions and discuss their options so they can make their own decisions. Supporters can be anyone the person trusts: family members, co-workers, friends, past or present service providers. It is critically important that supporters know and respect the person’s preferences, and are committed to honoring the choices and decisions the individual makes.
Supported decision-making (SDM) is proving effective in other countries, such as Canada, Sweden, Australia and Ireland. Since it was endorsed in 2006 by the United Nations’ Convention on the Rights of Persons with Disabilities, SDM is gaining a foothold in the United States as well.
SDM promotes self-determination, control and autonomy. It fosters independence. Unlike substituted decision-making where guardians or family members or caregivers make decisions for the individual, supported decision-making enables the person to make his or her own decisions with assistance from a network of supporters.
Under the SDM model, an individual with a disability identifies areas where he or she needs decision-making help, like budgeting, health care, living arrangements, relationships or jobs, and then chooses supporters to provide that help. The individual and his/her supporters date and sign the SDM Agreement. All the SDM Agreements in the CPR pilot were executed before a notary public who stamped and dated them. Whenever the individual is faced with a decision, he or she confers with supporters, reviews the pros and cons, and then makes his or her own decision.
Now in its third year, CPR’s SDM demonstration project is a success: All nine participants report that as a direct result of SDM, they are more confident, more independent and more confident about expressing their opinions. Many say that it is important to be included in the conversation and to be asked for an opinion – and better yet, it is empowering to express a choice and have that choice honored. Significantly, many of their supporters report the SDM pilot confirm their decisions not to seek guardianship.
Two of the pilot participants were under guardianship at the outset. With CPR’s assistance, one of them successfully petitioned a probate court judge to discharge his guardianship in favor of his SDM network. Following a court hearing, the judge found, “The SDM Agreement provides to [Mr. C.] a sensible, reasonable and workable arrangement to assist him to make his own decisions about all aspects of his life.”
The pilot is a joint project between CPR and a progressive social service agency, Nonotuck Resource Associates, Inc. Project staff worked together to help participants and their support networks develop and execute their SDM agreements.
An independent research firm, Human Services Research Institute (HSRI) conducted an evaluation of the project to build the evidence base for SDM and identify best practices for possible pilot replications. HSRI, which produced two annual evaluations, concluded the pilot demonstrated that SDM “is a viable means to provide people with I/DD and other disabilities customized decision-making assistance” to enable them to retain and exercise “their decision-making rights.” Learn more about the SDM pilot, pilot participants and the HSRI evaluations.
CPR has presented on SDM at numerous venues in the United States and Canada. We are providing technical assistance to advocates in several states (Rhode Island, Maine, Indiana, Washington, New York, South Carolina) that are in the process of setting up their own SDM pilots. Also, CPR, as part of coalition of disability advocates, is working with federal agencies on self-determination initiatives. These efforts led the US Department of Education to include SDM in its recent guidance on transition of students from high school as an alternative to guardianship for students with disabilities as they approach the age of majority.