Carl Solano’s sister is 58 years old, but, with her Down syndrome, her mental age has been pegged at less than 1. Since the 1960s, she’s lived at the White Haven Center, a state-run Intermediate Care Facility (ICF) about 100 miles north of Philly. “The only thing she knows is the staff, the other residents, the place that has been her home for 40 years,” says Solano, a Philadelphia lawyer. “She doesn’t know danger there. She’s in a place that’s protected.” Now, Solano is terrified that she could be pushed out of that sheltered environment.
That’s because, as part of a legal settlement signed last year, the Department of Public Welfare (DPW) agreed to begin moving certain people with intellectual disabilities out of ICFs and into community-based settings, typically small-group homes. Solano and seven other guardians of people living in ICFs are suing in federal court to intervene in the settlement. “People trusted the Department of Public Welfare. They feel betrayed,” says Solano, who believes the state facility is the best place for his sister and some others like her.
The thing is, the conventional wisdom says otherwise — and so do disability-rights advocates, the state and even the federal government, which operates under the Americans with Disabilities Act as well as a Supreme Court decision known as Olmstead, both of which bar states from segregating people with disabilities into institutions if they can live elsewhere. “Almost 100 percent of professionals in this field believe that people are better served in their communities than in institutions, period,” says Maureen Cronin, executive director of the Arc of Pennsylvania, which advocates for the disabled.
The Disability Rights Network of Pennsylvania (DRN), another advocacy organization, had filed the class action from which the settlement resulted — Benjamin v. Pennsylvania Department of Public Welfare — in 2009, on the 10-year anniversary of the Olmstead decision. At the time, the number of residents in state facilities had fallen precipitously, from more than 4,000 in 2005 to around 1,200, part of a nationwide deinstitutionalization movement underway since the 1960s. But in Pennsylvania, that movement had stalled. DRN’s suit was a way to jump-start it. The most sweeping Olmstead lawsuit ever in the state, it took as its class all Pennsylvania ICF residents “not opposed” to being moved into the community. And it worked — sort of. The state agreed to begin moving out ICF residents last September.
But since then, the pace has been glacial. Just 13 people were moved in the first year the agreement was in effect, out of around 230 DRN initially identified as part of the class — and some providers say new state policies and payment rates have made it almost impossible for them to accept the type of extremely high-need patients left in ICFs.
And now, the U.S. Court of Appeals for the Third Circuit is considering whether to allow Solano and the others to intervene and decertify the class — potentially voiding a settlement that’s been considered a major victory for disability rights in Pennsylvania.
The thing is, DRN managing attorney Robert Meek says Solano’s concerns are beside the point: The goal of his class-action lawsuit was never to force anyone out of ICF care. “This case was not about people who don’t want to move [or whose guardians don’t want them to move]. The case was about the state’s failure to offer community-based services to people. If you’re opposed to moving into the community, you’re not a member of the class.”
This conflict — between families who know and trust the state centers and those who want the ICFs shuttered — has been raging for years.
Cronin says it was the same thing three decades back, when another class-action lawsuit led to the closing of Pennhurst, an ICF outside Philadelphia. Families “were very afraid of what would happen in the community,” she says. “It really puts parents in a crisis situation, because … by allowing their family member to leave, it’s like saying they might not have made the right decision in the first place. It’s very hard to say, ‘That was not the right decision.’”
She points to the Pennhurst Longitudinal Study, in which Temple University medical sociologist James Conroy tracked Pennhurst residents as they moved into the community. Guardians “universally were happy” with the move, she says. “They realized their son or daughter had a better life and better choices.”
Audrey Coccia, co-executive director of Vision for EQuality in Philadelphia, agrees. “I personally have moved out about 150 people over the years under court orders into the community, often with greatly fearful families. And every single one of those families said to me in the end that they were glad their family member eventually moved out.”
Still, all of this doesn’t soothe the anxiety of Alfred Sheppard, a Philly resident who is among those suing to intervene. Sheppard’s brother Wilson has severe intellectual disabilities and no capacity for speech, and has lived in White Haven for 40 of his 49 years.
Sheppard’s parents had their troubles: At one point, he and all eight of his siblings were placed in foster homes. For years, no one visited Wilson. When Sheppard finally got a chance to go and check on his brother, he was “amazed,” he says: “He had nice clean clothing, no scratches or bruises. He wasn’t hurt or abused. These are things that, when our back was turned and we didn’t have the capacity to visit him, could have happened. And they didn’t.” Sheppard, now Wilson’s guardian, doesn’t want to try his luck again by moving Wilson to a new place.
Advocates, however, say the downside of life in an ICF is significant. They say it’s a world without choices, like being incarcerated for life.
Jean Searle can attest to that. She lived 12 years in ICFs, starting at age 10. Searle, who says she has “mild retardation” along with physical disabilities, recalls that the ICF staff were unyielding and sometimes abusive.
“I felt like I was in a prison ward,” she says. “They were constantly strict at all times. You really couldn’t do anything without permission.” Worse, she thought to herself, “I’m in an institution, and I’m not going to get out. This is my life.’”
At age 22, though, Searle received help moving into a community setting. Now, at 50, she has a Center City apartment and a job as a receptionist. “I like that I can do what I want,” she says. “I can go home and cook dinner, just relax, watch TV, whatever.” She gets help occasionally: for example with grocery shopping. Mostly, she just lives a normal life.
Coccia says that’s not possible in state centers, which haven’t improved much since Searle’s days there. The buildings are ancient and in need of repair, Coccia says; one of her advocates recently walked into a basement meeting room at the Selinsgrove Center ICF and found it full of asbestos. She says she’s been to state centers where residents “will follow you on the grounds and beg you to help them get out.”
“There are many people in the state centers who can tell you themselves that they don’t want to be there. But their parents will fight to keep them there,” she says. “In some cases it’s been shameful, the exclusion. And sometimes, the parents have been involved in that exclusion.”
The DPW settlement won’t override a guardian’s right to keep a family member in ICF care. However, Solano and the other intervenors say they have good reason to fear what could happen down the road. With the institutions already operating well under capacity, the closure of more ICFs seems an inevitable consequence of the settlement, they say.
At the appeals-court hearing, DPW counsel Doris Leisch acknowledged that the centers’ future was unclear. “The department has no plans to close” the remaining ICFs, she told the court. “Does anyone know what is going to happen five, 10 years from now? No, but [if they close] it’s not going to be because of this settlement.”
Coccia, however, doesn’t deny that closing the centers altogether is her goal. Just as Solano fears his sister being forced out of the center in the future, Coccia is afraid of the opposite: that her 47-year-old daughter, who has an intellectual disability and who lives at home, will be forced into an ICF one day.
“As long as those state centers exist, our family members are threatened with being placed there someday, if we’re no longer here,” she says.
Despite all that, Pennsylvania’s ICFs won’t be closing any time soon. After all, the state fell far short of its first-year goal of moving 50 people out into community settings under the Benjamin settlement. In fact, though the DPW tries to avoid it, some people were moved into ICFs in the past year.
Financially, it would make sense for the state to close the centers as quickly as possible. The DPW figures it costs $250,000 per person per year to keep a person in an ICF. It estimates it could save an average of $90,000 per year for each person moved into community-based care — or about $98 million a year all told for the ICFs’ 1,094 residents.
But logistically, it’s a different story.
Placing ICF residents into community living situations has lately become a nearly impossible task, according to Coccia, who has been trying to help identify appropriate caregivers. Many providers are demurring because the DPW’s recently restructured payment rates are no longer sufficient, she says: “This is a new problem for us.”
DPW spokeswoman Donna Kirker Morgan denies that DPW has had trouble finding caregivers. She says the delay is due to an “enhanced … person-centered planning process,” designed “to make sure that what the individual needs to be fully included and successful in the community is clearly identified.”
But Kathleen Brown McHale, president and chief executive of Special People in the Northeast (SPIN), says the rates have been a significant barrier in the case of her nonprofit. “We have been asked to take people, and some of them we’ve said ‘no’ to. I don’t think we’ve gotten a referral that we’ve been able to take at all recently from an [ICF],” she says.
Brown McHale says those left in ICFs are the highest-need cases, since many have co-occurring psychiatric conditions or physical disabilities. But the state has reduced its rates the most for these super-high-need “outliers,” making them even harder to serve.
“The people in the Benjamin settlement aren’t getting services because they have a high need for support,” she says, “and that’s just the beginning of people not getting services.”
SPIN, she says, is already reeling from other cuts and growing expenses. It’s losing an unsustainable half-million dollars a year on housing costs alone, even after aggressive refinancing of its mortgages. It doesn’t help, she says, that while residents in similar homes elsewhere in Pennsylvania can obtain food stamps, all but a handful of the residents in SPIN’s Philly houses have been denied. “We have cut every cost we can in every one of our homes. We were asked to provide these services, we were asked to provide them in homes, and now the state doesn’t want to pay what they cost.”
In the meantime, the delay in moving people out of ICFs may come at the expense of the approximately 15,000 people now on Pennsylvania’s infamously long waiting list for intellectual-disability services of all types.
“For every person in a state center, we could serve 20 off of the waiting list,” Coccia notes.
More than that, she says, it shouldn’t take a lawsuit to get the state to make and carry out a plan (as required by the federal government) to give everyone a shot at living in the community.
“Even now, there seems to be no commitment to moving forward,” she says. “To me, this state is long overdue.”