Disability advocates demand community-based care
Friday, June 26th, 2009
By: Maiken Scott
mscott@whyy.org
10 years after a supreme court decision that essentially outlawed institutionalizing people with intellectual disabilities, a Pennsylvania advocacy group has filed a lawsuit against the state's department of Public Welfare – claiming they are not providing the community-based care mandated by the law.
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The suit was filed by the Disability Rights Network of Pennsylvania on behalf of the over 1200 people still living in state-run institutions. It states that community based care provides better choices for people with disabilities, and is more cost-effective.
Stephen Suroviec, executive director of the Arc of Pennsylvania, an advocacy group for the mentally disabled, supports the law suit. He says all of the state's more than 1200 people living in institutions could be better cared for in community based settings:
Suroviec: I have never met a person with mental retardation who could not live in the community. If they had access to community supports and services, they could live either in their own home, in an apartment, in a group home, with family and friends and neighbors like anyone else.
Suroviec says services would include help with household chores and transportation.
Bob Kreider heads the Devereux Foundation, which provides services and community-based care for people with intellectual disabilities. He says moving people out of institutions is a slow and difficult process:
Kreider: It's not just general slots that they would move people in, it's slots that have to be designed specifically for the specific needs of the individuals.
Kreider says many of the people remaining in state-run institutions have complicated medical and mental health needs. Kreider says Pennsylvania isn't the only state struggling with the issue:
Kreider: Almost all the states are viewed as significantly out of compliance by the disabilities community, because progress has been slow. And over the last two years as the budgets, the state budgets have become more difficult, this has ground almost to a halt.
Pennsylvania's department of public welfare declined to comment on the pending law suit.
My daughter has velo-cardio-facial syndrome, a deletion of the 22nd chromosome. She has had open heart and palate surgery, a non-verbal IQ below seventy, but overall IQ barely above mentally retarded, and bipolar disorder. She is part of a community mental health program, Wellsprings, in Bryn Mawr. In Rendell's new budget, funding for such programs is being cut.
Pigeonholing her complex health problems into the one disability which entitles her to services, the mental health diagnosis, makes it almost impossible to get a program designed specifically for her many needs. I agree with Kreider that community placements must target needs of the client, but often funding, training, and limited coordination of services for multiply handicaped individuals makes appropriate placements a dream.
Wellsprings is probably one of the better programs out there and we are still lobbying and struggling.