A bill pending in the Pennsylvania House has exposed fissures in the disability-rights community over the viability of large state-run institutions that care for the disabled. House Bill 1650, introduced by state Rep. Kerry Benninghoff, R-Bellefonte, in March would close the five remaining intermediate care facilities by 2023 and transition an estimated 854 residents to home- and community-based settings. Families of the residents, many of whom are older and have been living in the state centers for decades, are organizing in opposition to HB 1650 and plan to meet with members of the House Health Committee this week.
“We're trying to stop this bill before it happens,” said Mary Wills, whose sister-in-law, Sandy, has been living at the Ebensburg State Center for 57 years. Wills of Dysart, Cambria County, is one of 7,063 signatories to a petition that will be delivered to the statehouse Monday by a group called Keeping Individuals with Intellectual Disabilities Safe , or KIIDS. But some advocacy groups and care providers support the legislation as an overdue acknowledgement that the state centers are outmoded and an unnecessary taxpayer burden, costing hundreds of thousand of dollars a year per resident. Closing them makes sense for reasons of economics and care, they say.
At their height in the 1960s, 14 state-run facilities served thousands of adults with mental and physical disabilities, whose families could not care for them. Today, there are five public centers left, spread throughout the state. “We're due to close these centers. Other states have closed theirs,” said Nancy Murray, president of The Arc of Greater Pittsburgh, which serves Allegheny, Beaver and Westmoreland counties. “They're too costly, and people don't need to live in an institution. All these people can live in a house somewhere and be able to enjoy their life that way.” Murray noted that the state center population is aging and declining, mostly through death and attrition. The census of the Hamburg State Center in Berks County, targeted for closure next year, has dropped by 90 percent in more than four decades – from 850 in 1970 to 75 in 2017. Those demographic trends are driving up the cost of care at a time when state resources for people with autism and other intellectual disabilities are already limited, she said.
“As each person leaves (a state center), the cost for everybody else goes up because your facility costs are still there. The cost per person continues to inch up,” she said. Murray, who helped draft HB 1650, said the state system of care needs to be “rebalanced” in favor of home- and community-based services. An estimated 13,588 Pennsylvanians currently are on a waiting list for such services, according to the PA Waiting List Campaign . For every person living in a state center, two people can be served in the community, Murray said. “Instead of so many dollars going to a decreasing number of people, we want those people to enjoy living in a home and being part of the community. The costs to do that will be substantially less than the state centers,” Murray said. Benninghoff, citing Gov. Tom Wolf's budget figures for 2017-2018, said the average cost of care for a person in a state center ranges from $350,000 to $450,000 a year. Home- or community-based services can be half that amount, he said.
KIIDS spokeswoman Susan Jennings of Mansfield, Tioga County, said the group is not opposed to community-based care as such but wants to keep the state centers open as an option for their loved ones, especially those who have been living in them for years. Jennings' son, Joey, 25, has a dual diagnosis of autism and intellectual disabilities and is a resident of the White Haven State Center in Luzerne County. He moved there in July 2016 after what Jennings described as a harrowing four years in the state's group home system. Joey lived in three group homes, in Pittsburgh, Philadelphia and Bethlehem, she said.
“That living environment was inappropriate for his complex needs. They were unable to handle his maladaptive behaviors. He underwent the same brutal cycle over and over,” Jennings said. When Joey got violent, the group home staff would call police, and Joey would be discharged, taken to a local emergency room and admitted to a hospital psychiatric ward, she said. One time, group home staff took him to see the movie “Fifty Shades of Grey,” which has strong sexual themes, after which he called his mother to complain. “Tell the police, tell the judge, tell President Obama, I don't like inappropriate video,” Jennings quoted her son as saying. Finally, Jennings filed a petition with the courts to have Joey admitted to a state center. “We stumbled onto the state center. I found it online. I didn't even know it existed,” she said.
The state Office of Developmental Programs, which operates the five centers, allowed his admission to White Haven after several court appeals, she said. “The difference is like night and day. He is in a stable, structured environment. … My son is happy and healthy,” she said.
Pittsburgh resident Irene McCabe, whose sister Sharon has lived at the Polk State Center in Venango County for 67 years, said the threat of HB 1650 has galvanized support for the state centers on the part of family members. “When you feel you're being attacked, you look for where your friends are,” McCabe said.
McCabe is afraid that closing the Polk Center will put Sharon on the waiting list. “My sister is safe with services right now,” she said. “She is used to the staff, and the staff is used to her. Staff care is a tradition at Polk, running three, four generations in the same family.” But Murray said closing the state centers will not only improve the quality of life of residents who are transitioned into the community but also free up money for community-based services. What's more, proceeds from the sale of the properties could go to the Office of Developmental Programs for the provision of those services. “If we rebalance the system and don't have so many people in state centers, more people could come off the waiting list,” she said.
Another supporter of HB 1650 is Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, or PAR. The trade association advocates for better working conditions and better wages for direct care staff. PAR consultant Andrew Ritter said the organization supports HB 1650 because it establishes an orderly process for closing the centers, which have outlived their usefulness and become too costly. “I think the governor's closure of Hamburg really raised an important question: If there's a good policy reason to close one of these institutions, why not all the others?” Ritter said. “If it's going to happen no matter what, wouldn't it be nice to have some predictability?” Ritter said PAR considers HB 1650 a legislative priority. “This is a debate we want to have,” he said.
Click here for the article. Stephen Huba is a Tribune-Review staff writer. Reach him at 724-850-1280, firstname.lastname@example.org or via Twitter @shuba_trib.