Linda Blumkin, J.D. (VOR Member): New York Olmstead Public Forum
Testimony by Linda Blumkin at the Olmstead Public Forum 9/28/2012
My particular focus is on the needs of people like my daughter Jessica, who is almost 23 years old and has a rare genetic disorder, Cornelia de Lange Syndrome, that resulted in mild mental retardation, autism, and (with the onset of adolescence) challenging behaviors including physical aggression. She attended an out-of-state residential school from 2004 through her “aging out” date of June 2011 – one of the 650 NYS students sent away to such schools at an annual cost of $140 million.
As the Supreme Court said in the Olmstead case: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings.”
. . .
Would I place my daughter Jessica at Misericordia or a New York version of Misericordia [private ICF/MR]? In a heartbeat. But Misericordia doesn’t have room for all of the Illinois residents who need its help, and there is no Misericordia equivalent in New York. Nor is New York developing smaller campus-based programs for people whose needs are greater than an isolated group home in the community can accommodate, perhaps with a few cottages on a common property, sharing facilities on the property like a day program (for people who realistically cannot handle daily trips from their residence to day hab or a job), nursing support, behavior management specialists and other services.
Instead, the isolated group home in the community becomes OPWDD’s take-it-or-leave it alternative. And for people like Jessica, this means that if the group home staff cannot manage their challenging behaviors, they call 911 and the police come, handcuff the unmanageable person (even the ones like Jessica who are 4’7” tall) and take them to a psychiatric emergency room to be “stabilized” before they are returned to the environment incapable of managing them. After a few of these roundtrips, the person then moves from OPWDD’s budget to that of the Office of Mental Health as they are shipped off to long term psychiatric hospitalization in a facility ill-equipped to address the behavioral issues of someone with autism or other developmental disabilities.
