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?”