Sunday, April 5, 2009

Pennsylvania advocates push for protections for adults with intellectual disabilities

From the first half of a story in The Daily Item in Pennsylvania. In the picture, Justin Noll selects a color for his kite during a program at The ARC of Northumberland County in Sunbury, Pa.

Fatigue, nausea, sunburns, rashes, blisters, bruises and sexual assault — the proof of abuse was supported by physicians and nurses who treated “Lisa” after every visit with her stepfather.

Yet every time the Northumberland woman went to court, her testimony was never accepted. Her voice was not heard.

“Incompetent,” the judge ruled over and over again. “Case dismissed.”

Lisa, in her 30s, suffers from two muscle diseases, mental retardation and a deficit in word retrieval.

“Janey,” Lisa’s mother, has tried, to no avail, to take away any rights of visitation from the stepfather.

“She’s used to me being her voice,” Janey said, “and now, when she needs me the most, they tell me I can’t be.”

She is biding her time until she can get a court order to permanently protect Lisa from the abuse. But she’s not sure how long she can continue.

“She’s stuck between the cracks of the legal system,” Janey said.

After contacting many agencies, including police and county Mental Health and Mental Retardation services, she was told that no one could help.

“Their hands,” she said, “are tied.”

After six years of battling legislators for a result, more than 70 local and state advocacy groups are frustrated, but fighting harder than ever to institute a law to protect adults who cannot, or are afraid to, speak for themselves.

Approximately 4,000 cases of abuse among those ages 18 to 59 with mental disabilities were reported in Pennsylvania in 2003.

Of those, about 1,200 would be substantiated cases and thus investigated if a law were in place, said Stephen Suroviec, executive director of The Arc of Pennsylvania, a community-based organization of and for people with intellectual and developmental disabilities.

There are 780 chapters throughout the United States.

He suspects the number of cases has not decreased since that 2003 Pennsylvania study.

“If anything,” he said, “it has gone up.”

Pennsylvania is one of five states that has not yet passed Adult Protective Services legislation, joining Connecticut, Nevada, Ohio and Rhode Island.

While protection for those under 18 is available through Children and Youth Services, and protection for those 60 and over is available through Older Adults Protective Services, there is no legal protection for the ages in between.

“We’ve been advocating for this for several years,” said Gail Leightley, executive director of The Arc in Northumberland County.

“If you are between the ages of 18 and 59, you can be abused, mistreated in all sorts of ways, and there’s no one who can help you unless you ask for help yourself,” Leightley said.

Those suffering from mental disabilities are not always capable of asking for help, Leightley said.

“You have people who can’t speak for themselves, yet are treated like adults, and because they don’t ask for help, no one is willing to help them,” Leightley said.

Approximately 2,500 people are developmentally disabled in Columbia, Montour, Northumberland, Snyder and Union counties. There are 1,000 in Northumberland County alone.

“They are the vulnerable ones from our population,” Leightley said.

“We work on the bill each year when it’s brought up,” said Kevin Casey, of the Department of Public Welfare’s Office of Developmental Programs, which serves those with mental retardation and autism.

He said state Sen. Mary Jo White, R-21, of Oil City, introduced the bill this year.

Though police can certainly get involved in reported abuse cases, Casey said “The headache is, there is no separate authority to go out and look at any person with severe disabilities, and refer them to prosecution.”