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Western Center families still fear moves lower level of care, safety
Monday, April 24, 2000 By Jan Ackerman, Post-Gazette Staff Writer
Like any mother, Connie Cihil wants the best for her mentally retarded son, Richard.
Richard, a 47-year-old man who functions at the level of a 6-month-old, had lived at Western Center in Washington County since 1965.
Cihil was upset when the state Department of Public Welfare moved Richard to a group home in Robinson on April 13 as part of its plan to permanently close Western Center, a 38-year-old institution in Cecil Township that serves mentally retarded people.
When she visited the group home, Cihil was pleased to find that it was well maintained and the staff was cordial and helpful. But she still is terribly worried about whether her son will be safe there.
"My concern is that Richard aspirates. He chokes on his saliva," said Cihil, who lives in Brackenridge. "He also takes seizures and he needs medical help. He needs nurses to be right there."
At Western Center, where Richard lived for 35 years, doctors and nurses were on staff around the clock. At Richard's new home at Aiken and Country View roads, nurses visit three times a day and a doctor is on call.
"The nurse is on a pager and said she could be there in 10 minutes," Cihil said. "But he could be gone in a matter of five minutes."
Cihil's fears are typical of many of the parents who fought the closing of Western Center, which, at its peak, cared for more than 700 mentally retarded people.
Only seven residents remained at Western Center last week, as the state continued to empty out the institution, said Jay Pagni, spokesman for the state Department of Public Welfare. The state hopes to quit staffing the institution by Friday.
Judges in Allegheny and Greene counties still have not cleared the way for some of the transfers of residents.
On Thursday, Washington County President Judge Thomas Gladden told lawyers for parents and the state that he didn't have the authority to return any residents to Western Center. Gladden is expected to sign an order this week on whether he should monitor the transfers of eight residents who have been moved.
"We hope he will hold hearings to determine whether the placements were appropriate," said Daniel A. Torisky, a leader of the parents' group that has been fighting the closing of Western Center for years.
Torisky has compiled what he calls a "death list" -- a list of mentally retarded people who have died in group homes over the years after being moved out of Western Center.
Included on that list is DelReese Young, 31, a severely retarded woman who swallowed water and her own feces after being left alone in a bathtub at a group home in Beaver County in 1997. She died three days later of pneumonia caused by an E. coli bacterial infection.
Torisky's list of group home deaths also includes a mentally retarded man who suffocated after he was left on his back, another who choked on a banana because his food wasn't pureed, and another who suffocated when a piece of a plastic tube was caught in his throat.
Those deaths did not occur in group homes operated by the three organizations selected by the state to provide housing for the 56 Western Center residents who are being moved so the facility can close.
Torisky, president of the Western Center board, said those three organizations -- the Allegheny Valley School in Pittsburgh and Robinson, the Gertrude A. Barber Homes based in Erie and the McGuire Home in Beaver County -- did not handle the previous transfers from Western.
Torisky's group turned the death list information over to state Auditor General Bob Casey Jr.'s office. Then, in early 1999, Casey announced that his office had determined in a preliminary assessment that mentally retarded people are abused more often in group homes than they are in Western Center. Since then, Casey's office has done a full-scale audit that is expected to be made public within the next few weeks, but not soon enough to affect the closing of the institution.
The state Department of Public Welfare has received a copy of the report and has a specified time to make comments about it, Pagni said. He said he could not comment on the contents of the report until it is released.
Celia Feinstein, associate director of the Institute on Disabilities at Temple University in Philadelphia, monitors the movement of mentally retarded people out of institutions and into group homes.
She said the parents' group that has fought the closing of Western Center seems to have forgotten that the initial efforts to close the center in the late 1980s were prompted by reports of abuse and neglect inside the institution.
Feinstein found that people with the most severe disabilities benefited the most by the moves.
She agreed that salaries are too low for workers in group homes and it is difficult to find competent workers who are willing to do the work.
"We are competing with McDonald's and Burger King for staff," Feinstein said. "That is a bad deal."
But she maintains that the answer is to improve the community system of group homes, not to return patients to institutions.
"In every way we measured it, the people were better off in group homes," Feinstein said.
Torisky disagrees. He said problems exist in group homes across the nation, from California to Washington, D.C., where The Washington Post won a Pulitzer Prize this year for disclosing the neglect and abuse in the city's group homes for the mentally retarded.
Torisky said many of the 56 residents of Western Center who have been moved or soon will be moved suffer from profound retardation and multiple physical and emotional problems. Many cannot speak or walk. Some have to have a catheter or be fed through a feeding tube.
The primary fear of the parents is that their children will die in group homes or be neglected. They don't believe that the group homes will be monitored as closely as a state institution.
"My major concern is what kind of people will be working there," said Kim Bogesdorfer, 41, of Monroeville. "I am concerned that the people working there are well-trained."
Her 48-year-old brother, Ronald Giannini, who lived at Western Center for 36 years, moved to a group home in Peters last week. He has Down syndrome and the mental capability of a toddler and has to be catheterized twice a day.
Bogesdorfer said officials at Gertrude A. Barber Homes, which runs the group home on Fawn Valley Drive in Peters, have agreed to adhere to her request that the catheterization be performed by a nurse, who is about five minutes away from the facility.
But the future is uncertain. The home opened without getting the proper applications to meet Peters zoning requirements.
An electrician raised questions about problems with the electrical system, but Bogesdorfer said she received assurances that problems were fixed.
"Of course, I want to believe that this place could be better [than Western]," she said. "I am concerned that the state went about this the wrong way. They want to cookie-cutter all mentally retarded into the same type of group."
State officials and group home operators have tried to assure the parents that the moves are the best for their children.
"The [state] Department of Health fully monitors these programs as well as the Department of Public Welfare," said Jeanne Baker, director of community support services for the Barber homes.
"They have unannounced visits and will survey the facility based on the regulations," she said.
Baker said that as part of the effort to move the remaining residents from Western Center, the group home operators agreed to place them in homes that were designed as intermediate care facilities for the mentally retarded.
According to the Pennsylvania code, an intermediate care facility, which is operated privately or by the state, must provide a level of care designed to meet the needs of people who are mentally retarded and require treatment.
The code calls for annual inspections and sets standards for who can administer drugs in group homes.
Torisky claims the state has been ignoring the standards.
"Just saying [a home is an intermediate care facility] is meaningless because the welfare department hasn't followed the standards," Torisky said.
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