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Advocates, opponents of White Haven Center closing head to Harrisburg for hearing

Standard-Speaker - 9/25/2019

Sep. 25--HARRISBURG -- Fifteen of 80 people with disabilities who lived at a center in Hamburg that the state closed last year are now dead, a statistic that reverberated during testimony on Tuesday about closing similar centers in White Haven and Polk.

"We're on the verge here of right or wrong ... on a matter of life and death. These people are going to die, and it's wrong," Bill Hill, a maintenance worker and union steward at White Haven, said to a state Senate panel in Harrisburg.

Hugo Dwyer, executive director of Voice of Reason, which supports people's rights to stay in centers, said he doesn't consider 15 of 80 an acceptable mortality rate.

Dwyer told the Committee on Health and Human Services about traumas that residents experience when moving out of facilities and then said, "I know the mortality rate the residents and their families have in mind, and it's zero."

Secretary of Human Services Teresa Miller, who announced plans to close centers in Polk, Venango County, and White Haven on Aug. 14, said Hamburg in Berks County had an older population and averaged five deaths a year before the closing was announced. Six died before the closing occurred and 11 died in 32 months since the transfers. "I don't think we saw an acceleration in terms of deaths," she said.

Citing families' satisfaction with their relatives' new homes, Miller said: "Hamburg was a very successful closure."

She said state centers, designed in the previous century to isolate residents, are no longer the standard of care now that people with intellectual and developmental disabilities can receive services in group homes and family homes.

Keeping four state centers open is no longer feasible as residents die off and few arrive through an admissions process narrowed by state and federal laws, Miller said.

While 13,000 people are waiting for services in community settings, Miller proposes that no residents leave White Haven or Polk without first having a place to go and plan for care, although she understands "the anger, sadness and confusion this brings."

Rep. Gerald Mullery, D-119, Newport Twp., whose district includes White Haven Center, noted that plans to close the centers drew criticism. "I think it was extremely well deserved. This process could not be less transparent," Mullery said.

Mentioning that the state has four centers now, he asked if the department reviewed them in writing before deciding which to close.

Miller said the department considered the number of residents, their opportunities for community involvement and property upkeep when deciding to close White Haven and Polk while keeping open centers in Selinsgrove, Snyder County and Ebensburg, Cambria County.

Sen. Lisa Baker, R-20, Lehman Twp., asked about the role that a department bureau chief whose wife works at Selinsgrove played in the decision.

Deputy Secretary Kristin Ahrens said the chief -- Kevin Dressler of the Bureau of Operations and Facilities -- disclosed his conflict to her and had input in the decision because of his knowledge of the centers.

Miller said she limited the discussion of closures to a few people to avoid spooking workers into quitting and leaving residents insufficiently cared for, as happened when the department sent up a trial balloon years before actually closing Hamburg.

Rep. Tarah Toohil, R-119, Butler Twp., said private facilities can be as isolated as community homes, where workers might undergo high turnover and lack training to dispense medication or take residents for a drive.

"We're pushing people out of their homes, and there's major deficits in the community," Toohil said.

Maria Ferrey said residents at White Haven, where she is a residence supervisor, vote, worship, participate in Special Olympics and go on vacations. One has worked at Arby's for 10 years. Others volunteer at an animal shelter. Those who can't leave worship and receive visitors at the center.

"Are you suggesting," Sen. John Yudichak, D-14, Plymouth Twp., said to Miller, "these individuals involved in Lions Club, in parades and in business groups in that community that they're are not integrated in the community? That they are somehow institutionalized ... That these loving caregivers that are at these facilities aren't members of their extended families? I've witnessed it through my years and my mom working there."

Of 15 witnesses from outside the department, only two testified in support of closing centers.

Celia Feinstein of the Institute on Disabilities at Temple University said Pennsylvania lags other states in moving people out of centers.

She also said Temple followed people after they left the state Pennhurst Hospital that closed 32 years ago to find out if the move benefited them.

"After many years of study, I can answer with a resounding 'yes,'" Feinstein said. "In every way we were able to measure it, people are better off."

Other speakers said Pennhurst was notorious for abuses so the comparison doesn't reflect the care and quality of life that people have in state centers today.

Sherry Landis said 40 years ago the founders of the Arc of Pennsylvania, which she now directs, wouldn't have envisioned that any state centers would still be open.

"Individuals deserve the opportunity to experience life in the community, just like everybody else," Landis said.

Committee Chairwoman Michele Brooks, R-50, Jamestown, said no one questions the right of residents to move to community settings if they wish to. "I think the concern here is the decision is being made without the residents and their families."

Brooks also said rural communities like those she represents in Mercer, Crawford, Erie and Warren counties lack access to services offered in cities.

Landis realized that closing state centers will cost jobs and hurt the economies of the rural communities where they're based.

But she added, "One person's job is not enough reason to violate another person's civil rights."

"It's not one person's job," Randy Seitz replied when testifying later that 800 jobs at Polk support another 910 jobs of police, firefighters, nurses, teachers and retailers. Their wages contribute $115.6 million to a community already hit by layoffs and closings.

Dwyer of the Voice of Reason said the committee should consider not just the cost but the value of centers to residents.

Then he told about his brother and a roommate at a state center in Connecticut.

The roommate, who had a compulsion to put things in his mouth, moved to a community home but died a few weeks later after choking on a hot dog.

"Bad things happen in any environment," Dwyer said of group homes and state centers. "... We all could do better."

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