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Families of developmentally disabled should be part of decision making

Perhaps the most tragic consequence of the deinstitutionalization controversy has been the impact it has had on the families of people with special needs. In many cases, parents feel oppressed, in that they are eliminated as a decision making partner in their son or daughter’s quality of life. In addition, the decision regarding the residential setting is often based on economic issues, rather than the quality of care and services.

As this writer has suggested, the movement to close residential centers in New Jersey has been based on money issues, rather than the quality of care. Certainly, people with developmental disabilities who willingly elect to move to a community setting should be given the opportunity to make this singularly independent (or supervised) living decision. However, a review by the appropriate professional agencies must determine that such individuals can survive n a community setting and that the required services can be delivered. The Olmstead Supreme Court Decision that had been misinterpreted by many clearly states that these are the prerequisites for such a transfer.

Perhaps the most egregious consequence of bureaucratic decision making has been the violation of the civil rights of people with disabilities. This consequence serves as an illustration of society’s view that people with disabilities are “less than equal” and, thus, are less deserving of constitutional rights. The families of these individuals with special needs should not be ruled out as decision making partners in the process. They are the most important members of the team that will monitor the quality of care for their disabled son, daughter or sibling.

Dr. Salvatore Pizzuro, a Disability Policy Specialist, holds a doctorate in Developmental Disabilities from Columbia University and an advanced degree in Disability Law from New York Law School.

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