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The disability rights movement has never been monolithic, but it has experienced an increasing consensus about the importance of limiting the legal authority granted to guardians, especially in life and death health care decision-making. Twenty-six national disability rights groups asked the courts not to allow Terri Schiavo’s guardian to bring on her death. But the arguments advanced by the disability rights perspective were long dismissed by a burgeoning and now fully developed movement.
When professionals and other people who are part of support systems are faced with questions about an individual's decision-making capacity, they are often led to the concept of incompetence and the promotion of legal guardianship. This is a process that everyone would prefer to avoid and that unfortunately can result in total lack of control and power of the individual over his or her own life. Fundamental rights of individuals which all citizens of our country expect and enjoy can be limited under guardianship. These rights may include marriage, voting, the right to procreate, and privacy. In addition, the power to make simple day-to-day decisions is often given to a surrogate decision-maker, further negating the meaning of the self-determination process for the individual.
The timing is right to change the current pervasiveness of guardianship. We have moved away from parents and professionals making decisions about placements for people with disabilities in homes, facilities, and day programs. The principles and practices of person-centered planning and self-determination give us the tools to support individuals with disabilities to have the lives they want in the community. This change bodes well for rethinking our reliance and benign attitude towards guardianship. There is clearly a dichotomy between guardianship and self-determination or person-centered planning. As Kathy Harris points out in her article, Making Guardianship Unnecessary, “The imposition of guardianship is the total antithesis of self-determination principles.”
Community Living Services (CLS) is a large nonprofit corporation that promotes “community inclusion, full citizenship, and a self‐determined life” for people of all ages with developmental disabilities. The organization has undertaken significant transformation in the past 15 years. This report focuses on that transformation, particularly with respect to community living services.1 It is based on a site visit to CLS, Inc. in May 2009, which included interviews with administrators of CLS and contracted service providers, direct support staff, individuals with disabilities, and family members, as well as review of documents.