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Note:  Some Center’s for Independent Living in North Dakota are seeing this trend as a way to prevent nursing facility residents the opportunity to return to independent living in the community.


Full guardianship is most frequently recommended for people with disabilities as they enter adulthood over other less-restrictive options, a new survey suggests.

Several options exist to help people with disabilities manage their affairs in adulthood. Full guardianship or conservatorship — where a court appoints an individual or organization to make decisions on behalf of a person — is the most comprehensive. More limited guardianships where a court determines that an individual only needs assistance managing certain aspects of their life are also possible as is a method called supported decision-making whereby individuals with disabilities retain control over their choices, but rely on trusted friends, family or professionals to aid them.

Researchers used an online survey to ask more than 1,000 parents and over 150 people with disabilities across the country what they were told about these options during the transition process.

When presented with information from school officials, full guardianship was recommended in 84 percent of cases while supported decision-making was suggested just 16 percent of the time, according to findings reported this month in the journal Research and Practice for Persons with Severe Disabilities.

Meanwhile, adult services providers mentioned full guardianship 79 percent of the time and supported decision-making in 22 percent of cases, the study found.

Survey responses suggested that full guardianship was recommended no matter the person’s disability or the level of classroom inclusion they experienced in school.

The study authors — which included disability advocates with TASH, the American Civil Liberties Union, Quality Trust for Individuals with Disabilities and The Arc of Michigan — said that their findings point to a need for education about the variety of options that exist to assist adults with disabilities.

“People who have a disability may express their preferences/choices/decisions in nontraditional ways,” the researchers said. “Any legal system or proceeding that deprives an individual of the right to be accommodated and supported in choosing and making decisions and appoints a substitute decision-maker based on a test of capacity makes that person vulnerable and deprives him or her of the right to self-determination and other civil liberties.”

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