Family members of the residents of Pennsylvania's five intermediate care facilities are mobilizing in opposition to a bill that could close the centers by 2023.
The relatives say they were alarmed to learn that the state plans to close the Hamburg State Center in Berks County in 2018 and that four other centers — homes for adults with serious mental and physical disabilities — could be next.
“It's a passionate thing for us, and it would be devastating for our families,” said Jo Ann Lyon of Pittsburgh.
Lyon and her sister, Lynn Knesh of Greensburg, have written a letter to state Rep. Kerry Benninghoff, R-Bellefonte, expressing “shock” at legislation he authored — House Bill 1650 — that would close the state-run facilities.
Their sister, Debbie, 64, who has been living at the Ebensburg State Center in Cambria County since she was 8, has “severe” mental handicaps, relies on a wheelchair and is blind.
“Without the Center, Debbie would most likely have not survived past her teens,” the sisters wrote. “She is totally dependent on the care from the Center, which is why we know that our parents died knowing she was being well cared for.”
The sisters are part of a grassroots effort to stop Benninghoff's bill from leaving the House Committee on Health, where it has been since July. A group known as Keeping Individuals with Intellectual Disabilities Safe , or KIIDS, has begun a social media campaign against HB 1650 and collected 6,000 signatures on a petition.
Members of KIIDS are making plans to deliver the petition and meet with Health Committee members to express their concerns later this month, said Mary Wills of Dysart, Cambria County.
“Once they say they're going to close a center, it's very hard to stop the action,” said Wills, president of ACE, a support group for families of Ebensburg State Center residents.
ACE used to support residents' families in Altoona, Cresson and Ebensburg. The Cresson Center closed in 1982, the Altoona Center closed in 2006, and Wills fears the Ebensburg Center is next.
“They're picking us off one at a time, and now this bill wants to close the remaining centers,” she said.
Wills' sister-in-law, Sandy, has been a resident of Ebensburg since she was 10. At 67, she has the mental age of a 2- or 3-year-old, Wills said.
“She is well taken care of. I cannot say enough about the staff and the quality of care that she's getting,” she said, noting that the Ebensburg center has about 220 residents and about 750 employees.
In an interview, Benninghoff said his bill was meant to start a dialogue and that the closing of the centers is not a certainty.
“Legislation never ends as it started. It's a catalyst for a longer process,” he said. “Maybe, at the end of the day, we'll keep some of the facilities open.”
Benninghoff said he hopes to avoid the “arbitrary” way in which the Hamburg Center closing was announced in January by the state Department of Human Services. That closing is expected to take 18 to 24 months.
“I don't want this to be motivated by an executive order, nor do I want it done strictly for economic purposes,” he said.
The closings should be based on factors such as the age of the facilities, the number of residents and the number of employees — and only after legislative hearings and family input, he said.
“I don't want them to be fearful. We're trying to be an advocate,” Benninghoff said.
HB 1650 has not been listed for a committee vote and is under review by the human services department. No other closings are planned, said J.J. Abbott, press secretary for Gov. Tom Wolf.
In his memo introducing the bill in March, Benninghoff cited the 1999 U.S. Supreme Court decision Olmstead v. L.C., which said that states should place people with disabilities in home- and community-based settings whenever possible.
“There is no doubt in my mind that the community-based system of supports is a superior alternative to institutional settings. So why is Pennsylvania only planning to close one of the five state centers?” he said in the memo.
Benninghoff also noted that the cost of community-based care can be 50 percent less than the cost of institutional care.
Among the supporters of HB 1650 is the Arc of Pennsylvania, an advocacy group that has been promoting the deinstitutionalization of people with disabilities since the 1970s. The Arc was the chief plaintiff in the cases that resulted in the closing of the Pennhurst and Western State centers in 1987 and 2000, respectively.
“It's hard to imagine that we would need legislation in 2017 to close these institutions. Nobody thought they would stay open that long,” said Arc Executive Director Maureen Cronin, who was on the staff of Pennhurst when it closed.
At one time, Pennsylvania had 14 state-run intermediate care facilities, occupied by thousands of residents whose families couldn't care for them.
“You can't deny that, at one time, there was a movement to separate people with disabilities from the community,” she said.
Today, the five remaining state facilities house about 700 residents.
Cronin said she understands the anxiety of families who are faced with moving their loved ones out of a residential facility, but institutionalization is not a viable model anymore.
“If done well, families can be part of that transition and often the choices being made,” she said. “I think the state has done an excellent job of keeping families engaged in the process.”
Benninghoff said he hopes to hold hearings on HB 1650 later this year in the eastern and western parts of the state and to solicit input from the communities involved.
“Any rollout would be done in a timely manner to allow for adjustments,” he said. “That would give us the opportunity to integrate state employees with another facility or other employment within state government.”
Stephen Huba is a Tribune-Review staff writer. Reach him at 724-850-1280, email@example.com or via Twitter @shuba_trib.
Source : http://triblive.com/local/regional/12726813-74/5-state-run-facilities-for-disabled-adults-could-close-if-bill-passes