The families of people with developmental disabilities are confronted with an inability to make critical decisions regarding the living arrangements and services for their adult son or daughter. Often, the residential setting has been pre-determined, based on the political climate of the state in which the parent and offspring with special needs may live.
My recent op. ed. on the deinstitutionalization controversy elicited a moving response from a parent who has been rendered powerless by bureaucratic politics. Leanne Ashley, the parent of a daughter with developmental disabilities, has been rendered unable to be a decision maker regarding her daughter’s living arrangement or welfare.
As Ashley states in her response to my article:
"The idea of the transfer of every person with a disability to the community is simplistic and without merit. It is a concept born out of a singleness of purpose that does not examine the unique needs of every individual.
“I agree with your statement. However, the opinion probably rests mostly in those families who are affected. I have been 'forced' to put my daughter into a group home setting. And she has been 'forced' through a court order when her guardianship was taken purposely from me (mom) and held as if by hostage with a large Corporate Non Profit Guardian. It is commonly known that these types of guardianship are labeled the worst because it is a stranger taking control of a person’s life. The families have never met them. The courts are mandated to do background checks on each individual up for possible guardianship of a person, Corp. or not. A check was not done on my daughter's. I did one and found the guardian had been ordered to change her decisions on other wards she was controlling because her decisions were against the rulings in her court ordered guardianship.
"In other words the guardian was stepping over her legal bounds. No parent would want a guardian like this in control of their child's life. However, the institutions have changed to group homes. And the person with DD's have been pushed, forced, striped of their Civil rights, and Constitutional Rights, and also the families involved because the local and state government now scratches the backs of Corporations and Non Profits who benefit from Group Homes, and from seizing family guardianship all in the name of "Adult Protection". This is appalling and the families who are experiencing this, and there are many, should be allowed to be heard, instead of being afraid so that this stops. Who is minding the store? How far have we really come?”
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.