Debate rages over facilities for intellectually disabled
When Patrick Cooney was 7, his parents sent him to the Cresson State Center for people with intellectual disabilities on the advice of experts.
When Patrick was 12, in 1982, the Cresson center closed, and the family felt it had no option except to put Patrick in a group home, because handling him was a difficult, almost full-time job, and they had three other kids.
Things were shaky at first, as community care for the intellectually disabled was in its early stages, but Patrick eventually entered a group home established by what is now Family Services Inc. and remained under care of the agency for the rest of his life, which ended this year.
His obituary is telling: It speaks not only of Patrick being with Family Services for 41 years but lists among Patrick’s survivors “two special caregivers, Steve Furio and Tim Hale,” and among his favorite activities, “nature walks with Tim and shopping with Steve.”
The obituary reflects the belief of Patrick’s father, Tom Cooney, that community care provided by Family Services ended up being — despite the initial doubts — a “blessing from heaven.”
That belief contrasts with the loathing with which many families of residents still in the state’s remaining five state centers regard a bill proposed in March by state Rep. Kerry Benninghoff, R-Bellefonte, calling for the eventual closure of all those centers, based on research that argues for the superiority of community care.
Cooney hesitates to preach to those families that are now in the position he occupied 35 years ago.
But a thought that crystallized for him at Patrick’s viewing is relevant to those families:
“They (the community care staffers) didn’t just work there,” he said. “They loved him.”
A parent can’t underestimate the value of that, he said, by implication.
“That is what the people fighting the closures are dealing with — and they don’t know it,” he said.
During his years with Family Services, Patrick, who could only express himself in gestures, did puzzles and went bowling, camping, grocery shopping and out for ice cream, Tom said.
He also took part in a connected series of tasks that included collecting aluminum cans, crushing them on a levered machine, turning them in at a recycling center for money, taking the money to a grocery store for pet food and delivering that pet food to the Humane Society, Tom said.
The staff would constantly find creative ways to keep Patrick interested — to “make his life meaningful,” Tom said.
Those efforts reflect advances in community care as a whole, he said.
Yet the issue for the families of those still in the centers is far from simple, he said.
Unlike his son, who was 12 when he left Cresson, many current residents of state centers are much older, and their habits and life patterns became set a long time ago, he said.
There’s “no question whatsoever” that the closing of Cresson was a boon for Patrick, Tom said.
It may be different for at least some of the older residents of the centers now, he said.
Even as an advocate of community care, he issued a caution.
“Because of the passage of time, you’ve got a very complex situation to deal with from a lot of points of view,” he said. “(The state) should proceed very, very carefully.”
Joey Jennings, 25, is intellectually disabled, with autism compounded by mental health issues, leading to violent temper tantrums, during which he destroys property.
Joey also has post-traumatic stress disorder and Parkinson’s-like hand tremors, and for a time at least, disfiguring female-like breasts, welts, intractable insomnia and psychotic breaks with reality, according to his mother, Susan Jennings of Mansfield.
Those latter problems began for Joey after age 21, when he began living at a series of one-resident “group” homes, before Jennings successfully fought in court to have Joey admitted to the State Center at White Haven, where he still lives — happily.
None of the group homes had the staff or equipment to handle Joey properly, said Jennings, an activist for families that want to keep the centers open and founder of an organization called Keeping Individuals with Intellectual Disabilities Safe (www.thekiids.org).
When Joey inevitably acted up, the homes’ default tactic was to call 911, then arrange for Joey to be “forcibly thrown into a psychiatric ward,” using a “302” commitment — an experience that sometimes included being thrown to the ground during arrests, then housed with “schizophrenics and suicides like a sheep among wolves,” Jennings said.
He went to the psychiatric ward five times in four years, which proved to be even more traumatizing to him than for people with a more normal psychological profile and led each time to eviction from his group home, so that before his release from the ward, social workers would need to locate a new home that would accept him, Jennings said.
During those stays at the ward, he was placed on 21 different medications, none of which worked and many of which caused problematic side effects, she said.
Police called frequently
There were times during the group-home period when Joey smelled like a homeless man and times he slept on a bare mattress in a filthy closet or ran into traffic, she said.
Police calls became so routine that one officer told a group-home staffer, “We are not part of your behavioral health program,” Jennings said.
Joey became like a prisoner in solitary confinement, she said.
The community-setting ideal of “inclusion” was a myth, in his case, she said.
Neighbors were never invited over, but instead, they would call the police if Joey made undue noises or even used the garbage can, she said.
Things only changed when he got into White Haven, she said.
“It was the difference between heaven and hell,” she said.
At White Haven, the staff knows what to do, she said.
They minimize his light and noise triggers, they throw parties, and they hold barbecues and movie nights, she said.
There is a swimming pool and a cafe and thick walls that Joey can’t punch through, she said.
There are plenty of staffers to help when he threatens to get out of control.
And there is a group of potential friends like him.
She scoffs at Benninghoff’s bill.
Community care is fine for people who are “mildly or moderately disabled,” she said.
But for those who are profoundly, severely disabled, who have behavioral challenges, are medically fragile or a combination of those, the state centers are necessary, Jennings said.
“It’s ludicrous there’s only one residential model to fit an entire spectrum of developmental disability,” she said.
More of that
Barbara Wood, 57, is mentally about 3 years old, but strong enough when aroused that — at least when she was younger — she could knock a 200-pound man to the ground, according to her mother, Beatrice Hoover of Bedford.
Barbara was living at the Cresson Center when, at age 12, she was transferred without her family’s knowledge to a community home run by a couple, Hoover said.
The couple expected Barbara to sweep the floor and wash the dishes, and Barbara just didn’t do those things, Hoover said.
So Barbara was transferred after a short time to a group home where she was paired with another girl who had been on her unit at Cresson.
That didn’t last long either, as the duo stuffed paper down a toilet, Hoover said.
So Barbara ended up back in Cresson, followed by the Ebensburg Center.
It’s where she belongs, according to Hoover.
“She’s doing wonderfully,” Hoover said.
One reason is staff stability, she said.
People like Barbara don’t like change, and workers at the centers tend to stay for a long time, so those residents become familiar with their caregivers and behave for them, Hoover said.
The workers also grow fond of the residents.
That was demonstrated when Barbara was in the hospital for an operation and workers had to tie her to the bed, until familiar staffers from Ebensburg came down and watched her 24/7, Hoover said.
“They wanted Barbie taken care of,” Hoover said. “And she was good for them.”
Sandy Wills, who is also about 3 years old mentally, was at the Cresson Center during its latter years and was likewise transferred without the knowledge of her family to community care.
As with Barbara Wood, that turned out to be “not a good situation,” said Sandy’s sister-in-law, Mary Wills of Dysart.
At first, Sandy went to a home with a couple who couldn’t handle Sandy, Wills said.
They had two small children, and Sandy could have hurt them, had she gotten angry, Wills said.
Sandy then went to a group home in Altoona, which her parents visited and found unacceptable.
The lower panes of the windows were painted black so no one could see in, forcing residents to stand on tiptoe to look out, she said.
The place was almost bereft of furniture, she said.
And there were rotten apples for the residents to eat in a bowl on the coffee table in the living room, she said. Sandy’s parents weren’t permitted to look at the bedrooms, she said.
It didn’t help that Sandy, who had temper tantrums, broke another client’s arm, Wills said.
Priest provided contact
The family’s parish priest happened to know politicians in the area and helped them get Sandy back into Cresson, Wills said.
Because center employees typically stay for a long time, they have the opportunity to develop a rapport with residents who can’t express themselves well — so they can tell when something’s wrong, simply by the residents’ behavior, Wills said.
The center staffs also have the expertise to handle the needs of residents who use equipment like feeding and trachea tubes and to deal with emergencies like aspiration of food, Wills said.
In places like the former Altoona Center, which closed in 2006, the average mental age was 1 or 2, said Robert Greene, a lawyer who represented Altoona Center families when that facility closed in 2006.
The kind of care those residents needed is difficult physically and emotionally, and it can’t be easily provided in group homes by employees earning minimum wage, receiving little or no training and making no long-term commitment to the cause, said Greene, who helped the Altoona families obtain a judge’s order that ensured them the option to transfer their loved ones to the Ebensburg Center.
Community care is great for those capable of functioning on their own with help, but there are others who will forever be “at the mercy of whomever is caring for them for everything,” Greene said.
Community a success
There were two or three Blair County natives living at the Altoona Center at the time of its closing whose families chose to send their loved ones to the community, rather than to Ebensburg, according to Sandy Arnold, executive director of North Star Support Services, which helps with early intervention.
The only one still living is Melissa Broadbent, 46, whose father, Larry, had been satisfied with her care in Altoona.
Broadbent was inclined to send Missy to Ebensburg, but after listening to a pitch from state officials in favor of community care, he thought he’d give that a try.
It took a little while for Missy, who has cerebral palsy and can’t talk, to adjust, but she’s thrived in community care at the Mattern Home in Hollidaysburg and, when that closed, the group home where she now lives in Foot of Ten with two others.
“They do a lot there,” including picnics and walks, he said.
Missy has her own sleeping room.
He wishes there wasn’t as much turnover, because Missy, who gives hugs and laughs when she begins to trust, becomes disappointed when a staffer leaves.
But overall, he’s happy.
An announcement about nine months ago from the state that it plans to close Hamburg Center next year motivated Benninghoff to introduce his bill, HB 1650.
The introduction came the day after the Hamburg announcement.
“There is no doubt in my mind that the community-based system of support is a superior alternative to institutional settings,” the memo states. “So why is Pennsylvania only planning to close one of the five?” he stated in a memo attached to the bill.
The memo calls for the closures or transitions to be “transparent and planned for.”
The memo also cites potential savings.
The average cost of supporting a person in the centers is $350,000 — and in some institutions, it’s as high as $450,000, he wrote.
Community costs are less than half that, he wrote.
His proposal, now in the Health Committee, would require that any savings remain in the intellectual disability care system to address the “workforce crisis” and issues with a waiting list for community services.
In person, Benninghoff emphasized that the hearings that would be required if the bill becomes law would give all stakeholders a chance to express their views.
“We want to ensure that any rollout is done smoothly and humanely,” he said.
The main idea is to give residents the best quality of life, he said.
In the news release that accompanied the Hamburg announcement, the state touted the evidence for its move:
“Research shows that community settings result in improved quality of life in areas such as opportunities for integration and social participation, participation in employment, opportunities for choice-making and self-determination, contact with friends and relatives, adaptive behavior and
other indicators of quality of life.”
Center occupancy drops
Over the last 20 years, the state center population has decreased 70 percent from about 3,000 to 888, according to the news release.
Nationally, state center population peaked in 1967, and since then, 14 states have closed all their state centers, the release stated.
“Extensive independent scientific research initiated in Pennsylvania and replicated in 14 states has found that life in the community for people with developmental disabilities is superior to institutionalization in every characteristic that can be empirically measured,” states The Arc on its website.
The organization cites the lower cost, documented atrocities in state centers, “including physical abuse, extremely poor medical care and suspicious deaths,” and research that has found that 90 percent of family members who oppose a change to community care think differently once they see the reality of community care for themselves.
Community care gives people with intellectual disabilities “an everyday life,” said Maria Brandt, executive director of The Arc of Blair County. Segregation — including segregation of people with disabilities — “is never a positive thing,” Brandt said.
It’s an “outdated talking point” to say that profoundly disabled people with complex problems can’t be handled in the community, said Andrew Ritter, a lobbyist for Pennsylvania Advocacy and Resources.
Community care has matured over the last five decades, Ritter said.
Providers have developed their own niches, and any individual with an intellectual disability can be handled in some niche or other, he said.
Regardless of the fate of the Benninghoff bill, the closure of all the state centers “is not a matter of if, but a matter of when,” he said.
Still, State Rep. Frank Burns, D-Johnstown, plans to fight the closures “on grounds of loss of specialized care and jobs,” according to a news release.
The Ebensburg Center employs 702 workers to care for 221 residents, the release stated.
There should at least be “a full vetting and support from all stakeholders,” Burns said in the release.
Mirror Staff Writer William Kibler is at 949-7038.