Clelian Heights parents rally to keep program put in jeopardy by new federal rule

Nov. 25--Parents of adult children with intellectual or developmental disabilities said Monday they should be free to choose the best work placements for their children, and they worry a new federal rule will limit the options available.

At a town hall-style meeting at Clelian Heights School, north of Greensburg, U.S. Rep. Tim Murphy, R-Upper St. Clair, and representatives from the state Department of Human Services heard from parents about the importance of sheltered workshops, such as the one run by Clelian Heights.

Clelian Heights is a private, nonprofit school and vocational and residential facility for people with developmental disabilities owned and operated by the Apostles of the Sacred Heart of Jesus, a community of religious women.

Supporters say sheltered workshops provide a safe place where adults with intellectual disabilities -- who are unable to work for traditional employers -- can perform simple jobs, such as manufacturing piecework, housekeeping and laundry services, under close supervision.

The way Pennsylvania ultimately implements a new federal rule regarding home and community-based services for people with disabilities could put some sheltered workshops in jeopardy.

The stated goal of the federal rule is to maximize the independence of those with disabilities, but the rule would make some definitions more restrictive, potentially shuttering programs at places like Clelian, Murphy said.

"Here's what happens when someone in the federal government ... makes a decision with limited information, limited insight, limited experience" into how the system works and says a person "has to work in some setting they define, as opposed to them saying, 'What is best for the person?'"

Stephen Suroviec, a deputy secretary for the state Department of Human Services, said his office is waiting for more guidance from the federal Centers for Medicare & Medicaid Services to clarify how the agency defines home and community-based services.

The Department of Human Services was formerly called the Department of Public Welfare.

The state department, which began using its new name Monday, has to develop a transition plan for federal approval describing how it will implement a variety of rule changes. The state would have at least four years to implement the changes, he said.

For Jean Kuklewski, the matter is simple: She wants her 26-year-old son to find the most comfortable place to work.

Her son is mentally challenged and suffers from Prader-Willi syndrome, a condition in which he always feels hungry. He worked briefly as a bagger for Shop 'n Save and then for Giant Eagle, but the jobs didn't work out, she said.

Now he works in Clelian Heights' workshop, and "he just loves it here. I'd hate to see that go," Kuklewski said. "Sometimes it's not a matter of effort; it's just not the right fit ... My concern is that choice will be taken away from him."

Sonya Curren, a mother of eight from New Alexandria, said her goal for her oldest child, Shawn, was not for him to work in a sheltered workshop, but as he grew up, she saw the disparities between his development and that of other children.

Curren said she has a "panicky feeling" when she thinks about the workshop not being an option for Shawn, 21, or for her youngest child, who was born with Down syndrome.

"As a mom, it horrifies me," Curren said. "The workshop seemed like the perfect situation."

Kari Andren is a staff writer for Trib Total Media. She can be reached at 724-850-2856 or kandren@tribweb.com.

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