WHITE HAVEN, Pa. (AP) — Joey Jennings cruises around White Haven Center on a golf cart, dons a day-glow green jacket to collect trash on the grounds and dresses as Batman to celebrate Halloween.
He also goes to dances, karaoke parties and barbecues at the center for people with intellectual disabilities, and takes field trips to pizzerias, ball games and Knoebels Amusement Resort.
His parents contrast his life at White Haven, which the state wants to close, with six group homes and five psychiatric wards that he shuffled between because workers had trouble controlling him. In those settings he seemed like a prisoner in solitary confinement to his parents, was overmedicated until he developed female breasts, and he suffered a broken eye socket and other injuries.
Joey’s parents, Susan and Richard Jennings, and family of other center residents said the state facilities offer skilled, compassionate care to their relatives. Doctors and nurses see residents daily and notice changes in their conditions. Respiratory therapists, noting humidity, decide whether residents with breathing problems can go outside to enjoy sunshine or should spend the day indoors, away from drafts.
At centers, a shop worker might make a wedge to prop up and help a resident breathe in bed or an aide might look through family photos with a resident while they listen to music together.
“Those are good-paying state jobs that you have at White Haven,” state Rep. Aaron Kaufer, R-120, Kingston, said
But Gov. Tom Wolf and his administration propose closing White Haven and a larger center in Polk, Venango County. The administration’s plan allows residents to transfer to other state centers but encourages residents to move to community settings, such as private group homes, where workers receive lower pay and managers say attracting and finding employees are their greatest challenges.
At White Haven and other state centers, workers have learned to interpret the actions of residents, including those who cannot speak. When a woman twists in her wheelchair, for example, her caregiver might move the chair to face what the woman is trying to watch.
The Jenningses, who live in Mansfield, Tioga County, said caregivers at White Haven deal with mood swings of their son, who has intellectual disabilities and autism, but also psychiatric disorders.
On good days, Joey joins in activities across the 192 acres at White Haven.
But there are bad days when he hears voices and might break glass, rip off a refrigerator door or bite, hit or scratch himself.
His failures in group homes and psychiatric wards convinced his parents that Joey would fare better in one of four state centers, after learning about care that the centers provide.
Joey, 27, is younger than most residents at White Haven, where the average age is 58.
Of the 110 people living in White Haven, 40 don’t walk, and 53 don’t talk.
Maria Kashatus does neither, but she smiles at familiar faces like the friends she made and people who cared for her during her 39 years at White Haven.
Her parents believe her life is better at White Haven than when she lived in group homes.
Maria’s father, Thomas Kashatus of Glen Lyon, who took guardianship of other center residents as the head of White Haven Relatives and Friends, and her mother, Margaret Kashatus, are among the parents and guardians who filed a federal lawsuit on behalf of all residents to retain state centers.
13,000 to 720
The state has been moving people out of institutions like White Haven for a half century.
Fifty years ago, 13,000 people with intellectual disabilities lived in more than 20 state centers and intellectual disability wings of state hospitals. Their numbers dropped to 3,000 residents by 2000.
Now, fewer than 720 people live in four centers that remain open, and Wolf’s administration wants to close two of them, in White Haven and Polk, which has 190 residents.
In comparison, more than 55,000 Pennsylvanians with intellectual disabilities or autism currently reside in community settings.
By moving people out of centers, Pennsylvania has followed a nationwide trend.
America has been closing institutions like psychiatric hospitals for people with mental illness, centers like White Haven for people with intellectual disabilities, orphanages and special schools.
Instead of involuntarily confining people to institutions, national and state government leaders sought to provide more contact between non-disabled people and those who would have been institutionalized.
Gov. Wolf’s administrators, too, point out that providing care for people at foster homes, group homes or other community settings costs less than caring for them at centers like White Haven and Polk.
A budget that Wolf released on Feb. 4 lists the expenditures for the four centers this year, which add up to $291,034,000. Divided among the 719 residents in centers in July 2019, the cost per resident was $404,776.
Caring for people with similar needs in the community costs $180,000 to $270,000, Human Services Secretary Terese Miller said in August 2019.
In Wolf’s proposal for closing two centers in three years, no one would be released from White Haven or Polk until they, their caregivers, family or guardians form a plan for where they will live. Residents might move to a community setting such as a foster home, apartment, group home, private care center or nursing home, or transfer to one of the two other state centers that would stay open in Selinsgrove, Snyder County, and Ebensburg, Cambria County.
Agencies that advocate for giving people more access to the community say that people with conditions as complex as those at White Haven and Polk already are being cared for in community settings.
More than 2,500 people receiving care in the community need complex medical or behavioral support, a state report from September 2019 about the closing of a center in Hamburg said.
“We truly believe the community is a better place to live,” Sherri Landis, executive director of the ARC of Pennsylvania, said in the Rotunda of the State Capitol just after groups had held a rally to keep open White Haven and Polk centers on Jan. 21
At the rally, families of other center residents, center employees and lawmakers representing White Haven and Polk gathered with an attorney to discuss their federal lawsuit to save White Haven and Polk.
Those bringing the lawsuit, Landis said, were “only putting out the worst case scenarios.”
If White Haven and Polk centers close, Landis said people still would have the right to live in one of two remaining state centers or in privately operated centers, as well as residences in the community.
Meanwhile, keeping residents in the centers for five years, a provision of a bill that the lawmakers ushered through the state Legislature but that the governor vetoed on Feb. 12, would push the per-person cost of care in a center to $750,000. After 10 years, the cost would approach $1 million, Landis said.
“Imagine what this money could go to?” she said.
A logical place to shift funds available if White Haven and Polk closed is to programs that care for people with intellectual disabilities and autism in communities.
While the vast majority of people with those conditions live in the community, nearly 13,000 of them are waiting to receive services.
Failure to report
Susan Jennings said living in the community didn’t work for her son. Rather than staying in group homes, Joey moved to homes where he was the only resident. With caregivers rotating in and out, Joey seemed like he was in solitary confinement. His parents paid for a pool membership, but he never went swimming.
Where Joey used to break windows or rip off refrigerator doors in group homes, shatterproof glass and commercial grade appliances at White Haven withstand his outbursts. At White Haven he can retreat to his apartment on bad days, and the workers have learned how to handle his ups and downs.
In contrast, before moving to White Haven, Joey broke his eye socket. His parents were told that he ran into a door, but they wonder.
“My son can’t tell me what happened,” Susan Jennings said.
In hundreds of other cases, state agencies and law enforcement didn’t know what happened to Pennsylvanians with disabilities living in the community.
A federal inspector looking at cases from 2015 and 2016 found providers of housing and other services in the community to Pennsylvanians with disabilities failed to fully comply with rules for reporting emergency room visits and hospitalizations within 24 hours.
The report by the Inspector General for the Department of Health and Human Services said of 1,162 ER visits in which the diagnosis indicated a high risk of fraud or abuse, providers failed to file reports in 307 cases.
In one case, an individual tried to commit suicide by stabbing a pencil to the chest and then tried to commit suicide again 12 days later. The provider reported the first ER visit 63 days after it happened, without mentioning suicide, but never reported the second ER visit.
Failure to report prevents supervisors or state agencies from protecting individuals from further harm, the inspector general said.
Providers also failed to report 167 of 510 hospitalizations indicative of abuse or neglect.
One man spent five days in a park where his mother, who previously tried to drown him in a bathtub, bound him in his wheelchair so he couldn’t communicate and covered him with a tarp, sticks and leaves, the inspector general’s report said.
Two weeks after being rescued, he went to two hospitals on consecutive days for dehydration and bedsores, yet neither hospital stay was reported.
Providers failed to investigate 80 of 654 deaths, the report added.
State Rep. Gerry Mullery, D-119, Newport Twp., used the report as an argument for keeping open the White Haven Center, which he represents.
“Now is not the time to be adding hundreds more to the community care setting,” Mullery said. “It appears these people are doing a horrible job of keeping people safe.”
In the four years since the cases mentioned in the report occurred, the state has tightened procedures and adopted new methods for evaluating hospital visits.
Since 2017, providers have had to report all deaths of people who received a waiver that allows them to receive home and community based services. Prior to then, death reports were required in provider-based settings, but not in private homes, where most occur.
The state Department of Human Services now reviews ER and hospital records for diagnostic codes such as bedsores or choking, which might indicate abuse or neglect. Regulations that took effect Feb. 2 list more types of incidents that must be reported to an inspector certified by the department and impose new sanctions for failing to report.
The department’s press secretary, Erin James, said the report doesn’t compare community settings with state centers or say that care is better or safer in either setting.
“We look forward to continuing to work with our partners at the county level and providers throughout this system so we may work together to ensure that people we all serve are receiving the care they need safely,” James said in an email.