Written byruth königon December 28, 2022
https://www.city-journal.org/las-ultimas-instituciones
When the Pennsylvania Department of Human Services announced in 2019 that the Polk and White Haven Centers, two large state facilities for people with intellectual disabilities, would close in November 2022, stating that moving residents to "community facilities would be better value" and inherent dignity" - marked the end of two campuses that had housed people with mental and developmental disabilities for more than 50 years. It also sparked a political battle among disability rights activists, who hailed the closure as a step towards inclusion number of people with disabilities, and many residents and their families, who feared losing what they considered to be their homes and those of their loved ones.
Residents like Alma were caught in the middle. Alma has a mild to moderate intellectual disability and has resided at the Polk Center for nearly 50 years. She was a favorite of the center's staff — chatty, friendly, upbeat — and one of the center's oldest residents, who saw the century-old campus transform from what critics called an overcrowded, understaffed warehouse into a licensed nursing facility. by the state. For people. with transformed disability.
Alma loved the Polk people. She made crafts for the staff and roommates, most of whom have severe disabilities. When nonverbal residents tried unsuccessfully to signal their needs, Alma knew them well enough to translate their requests to the team. She loved the place, too: the grounds, the campus, the community that had grown up around the castle-like labyrinth of brick buildings in rural Venango County. She sorted mail in the facility's mailroom, tended to the plants in the greenhouse, and roamed the Polk's cafeteria, greeting staff and residents alike when they stopped for coffee or pastries.
When employees told Alma in 2019 that the Polk Center was closing, she cried. As lawmakers, government officials and others visited the campus months after the announcement, he told them, "Polk must remain open. This is my home." Over the months, families and officials have appeared at hearings in Harrisburg, urging the state to keep Polk and White Haven open. Disability advocates and department officials responded with messages about the need to 'move forward' and 'community-based services'.
Several legal guardians filed suit in 2019 in hopes of stopping the closures. This case is pending, but the residents have already moved out. Campuses once filled with noise and activity are slowly being suspended, leaving behind furniture, televisions and calendars in suspended animation. Fewer than 175 of the 307 patients housed at the two facilities remained through October 2022.
Alma was among them. "Alma seemed to think she broke the shutdown by talking to different people," a Polk employee told me. she didn't. In early October, after several of the women in her building were moved to group homes and facilities in Pennsylvania, Alma was informed that she would be leaving the center in a week. Her family did not join the contingent suing the Commonwealth and agreed to move her to a facility in Selinsgrove ahead of schedule.
"She cried for days," a staff member told me. "She kept saying to me, 'How would you feel if I were you?'"
The team was transferring about five residents a week to community facilities or one of the two remaining state facilities before the closing date. Some residents were not informed that Polk was closing. One associate told me that in August several Polk residents were “dispatched. . . in a van", saying that "they were going to take them on a trip, not that they were moving, not that they were living somewhere else, but that they were going to travel somewhere fun". up to 45 minutes later.
Alma understood the staff when they told her she had to move, but as moving day approached, she decided to stay. "I'll be good," she said. But in late October, the team loaded Alma and her belongings into a van. They drove nearly four hours across the Commonwealth to a facility in Selinsgrove. They took her inside the building and said an emotional goodbye. It was a farewell to the gossip in Polk's Diner, the parades passing by Meadowside Cottage, Polk's pontoon rides and Friday night movies at her theater.
When the team left, Alma screamed from her wheelchair. "Please give me another chance," he said.
TTo their critics, the Polk and White Haven Centers are relics of a time when people with disabilities were confined to large, impersonal institutions, condemned to marginalization and segregation from the community. For advocacy groups working tirelessly to close institutions, deinstitutionalization represents both best development practice and a moral imperative. For their supporters, Polk and White Haven are important footholds in the disability assistance system, a last resort for people with medical and behavioral disorders.
When they began in the mid-19th century, educational institutions for people with developmental disabilities like Polk were a breakthrough in the treatment of people with disabilities, who were often relegated to nursing homes and prisons. The first "public school" opened in Massachusetts in 1850 under the direction of Samuel Gridley Howe, a physician and abolitionist whose institution for the handicapped sought to educate "dumb" children.
In 1875, there were eight public schools in the United States for people with intellectual and developmental disabilities. Most settled in rural areas with adjacent farms and provided residents with food and work. Administrators expected these residents to return to their communities with the necessary skills to find employment. A retrospective in a 1940 editionAmerican Journal of Mental RetardationHe noted that the first public schools tried to give people with disabilities "a special form of education and, after a few years, bring them back into the home or community."
This was the founding vision of the Polk Center, which opened in 1897 as the Polk State School and Hospital on over 2,000 acres in northwest Pennsylvania. According to Superintendent J. M. Murdoch's 1924 Biennial Report, some persons with disabilities admitted to Polk "returned to family or found suitable homes" in the community after attending school and participating in local work programs. “Many of these alumni,” he noted, “keep in touch with us through letters and visits; Express appreciation and gratitude for the training and treatment received.”
Schools were soon stretched beyond capacity. Conditions at Polk and other state institutions deteriorated in the 1940s and 1950s as rising admissions strained the institutions' already scarce staff and resources. In 1958, approximately 3,000 people lived in Polk and over 115,000 people with disabilities lived in public schools across the country. At its height, Pennsylvania operated 23 facilities for people with intellectual and developmental disabilities, many of which were filled with children with severe disabilities.
After World War II, more people with mild and moderate disabilities stayed at home, resulting in Polk accommodating a disproportionate share of people with severe disabilities. The school superintendent predicted that such trends "would inevitably result in a more incarcerated program, with an emphasis on medical and nursing care, and with much less prospect of clear benefits from education and training." Polk and other public schools across the country, increasingly under supervision, soon became synonymous with abuse and neglect. Rows of crippled children lay alone in cribs, their development permanently stunted. Handicapped adults milled around the day rooms, crying and wailing and covered in bruises.
The team was tasked with caring for thousands of disabled children and adults with a tight budget and an unimaginably high staff-to-patient ratio. A report from the notorious Pennhurst State School in Spring City, subject of the 1968 expositionsuffer little children, had two staff members caring for nearly 80 crippled children with intellectual disabilities in one of the school's nurseries.
Over time, the system was reformed. The worst facilities have closed. Children with intellectual disabilities were rarely enrolled in institutions after the Individuals with Disabilities Education Act of 1975, which guaranteed access to public education even for children with the most severe disabilities. Parents of adult children with disabilities challenged legislatures to develop smaller facilities as an alternative to institutional care, and what began as "community training homes" quickly grew into a robust network of smaller, individualized support services for people with disabilities. These smaller institutions have successfully served many people, even with severe disabilities.
stimulated bysuffer little childrenand Geraldo Rivera's revelations at Willowbrook State School and Letchworth Village in New York, in 1971 President Richard Nixon signed an amendment to the Social Security Act creating the Intermediate Care Center (ICF) program for people with intellectual disabilities and placing state schools under federal supervision. States that funded their facilities through the ICF program were required to maintain adequate staffing levels, ensure residents had access to 24-hour care, educational services and other programs, and comply with all state nursing regulations.
Conditions for staff in schools later renamed "development centers" have improved dramatically. As their population declined, they were able to focus their staff and resources on the small segment of the disabled population who wanted or needed care at centers.
Schools and their private equivalents continued to shrink. Advancing the community-based care system; decades of litigation against government entities by interest groups; and formal and informal efforts to redirect institutional admissions by social workers, state health departments, and state law to reduce their numbers. until 2016,92 percentof adults with developmental disabilities who received Medicaid residential facilities received them in the "community" and only 8% received them in the ICF, or what proponents call "institutions." In Pennsylvania, in 2018, nearly 93% of residential cases were treated in the community and community.2.751Residents who have served in ICFs,less than 800remained in the former state institutions.
Patients who remain in ICFs today, with exceptions, are typically long-term residents like Alma, medically complicated cases that require round-the-clock care, individuals with severe autism or other behavioral problems that require community placement. intellectual disability.
But for court-ordered appointments, which are relatively rare, everyone living in an ICF state now voluntarily participates. If they or their legal guardians so desire, they are free to seek available placement in a "community-based environment".
According to a 2011 survey by the Pennsylvania Protection and Advocacy Organization, 271 of 307 institutional residents who were able to respond to a survey said they wanted to stay where they were. The most recent data from 2017-2018,foundthat residents of 'institutions' in the Commonwealwealweal were slightly happier than residents of 'community' institutions.
ANAs conditions in public schools improved and residents were able to leave the premises, the debate about the future of institutional care for the disabled shifted. Research showing that many people with disabilities were better off leaving institutions and the general climate of "liberation" that accompanied the 1960s and 1970s led disability rights activists to argue that schools should be abolished rather than reformed.
Parents, employees and some residents resisted. If facilities can meet federal standards for active care and residents and their caregivers are satisfied with the care provided, why should activist preferences take precedence?
However, advocacy groups in Pennsylvania and across the country rallied around the position that all remaining state schools should be closed and their residents placed in "community" institutions, even if residents and their guardians objected. location in the community. The Pennsylvania Arch, the largest disability rights group in the Commonwealth,In the name ofacross the Commonwealth to "close all government centers and provide comprehensive and quality services to the community". Its Philadelphia chapter supports closing all "state centers in Pennsylvania and closing all large private institutions." Sherri Landis, director of the Pennsylvania Arch,sayingthat it is "disgraceful" that the Commonwealth "still manages state institutions for people with intellectual disabilities".
For many parents and residents who have relied on the stability, expert care, and institutional knowledge of state institutions, this commitment to total deinstitutionalization seems dogmatic. Edward Whalen, the father of a man with an intellectual disability who lived in a public school in rural Connecticut, told theNew York Times1995 that "proponents are fascinated by the mystique that all institutions are bad, that buildings must be leveled, the land leveled, and then salt poured in place never to rise again".
Pennsylvania politicians and advocacy groups have tried to shut down places like Polk and White Haven for decades. This explains their triumphant response to a decision that effectively displaces people from the places where they voluntarily chose to live. Then-DHS secretary Teresa Miller called the closures "an incredible moment in our history in Pennsylvania" and a step toward "a truly inclusive future for people with disabilities." Disability Rights Pennsylvania, the Commonwealth advocacy group, "strongly supports" the DHS decision. Member of the Center for Excellence in Developmental Disabilities at the University of PennsylvaniaIn the name ofthe movement "in line with our mission and values".
When I spoke to the Pennsylvania Department of Human Services in 2019, they told me their decision was "about choice". Remaining in Polk or White Haven was not among the "options" offered by the Department, but I was assured that residents of the two centers could move to either of the two remaining state facilities in Selinsgrove or Ebensburg. Many of the Polk and White Haven residents who moved chose one of these homes.
But if the existence of these institutions is an embarrassment to the community, and closing the centers and moving residents into the community better recognizes the inherent worth and dignity of the center's residents, then how could the state justify opening any center? of them remain? I asked Miller if Selinsgrove and Ebensburg would also be closed.
"I mean, that's certainly an option," he said. "It certainly is a potential future."
SNineteen states and the District of Columbia no longer have public facilities for people with disabilities. Some of these states operate private institutions. Some take their most difficult cases to asylums or psychiatric institutions. For example, in Indiana, which closed its last public facility for the disabled in 2012, in 2018 there were 51 people with intellectual and developmental disabilities living in state psychiatric institutions and more than 1,300 in nursing homes.
Still, advocates say these 18 jurisdictions are proof that no one with a disability needs to live in an institution. Peri Jude Radecic, executive director of Disability Rights Pennsylvania, said "everyone can get the support they need to live in the community with person-centered planning." , some families are forced to travel abroad for services.
That was the case for Donna, a Pennsylvania resident who had to cross state lines to access services for her autistic son. Donna's son has severe autism and struggles with aggression and self-harm. He broke teachers' arms and ribs, smashed televisions and bit his father. According to Donna, her son "bit his hand so hard he developed cellulitis and had to be given IV antibiotics."
Providers in Pennsylvania told Donna that her son was "too heavy" to handle. Devereux, a Pennsylvania disability service provider who offers community and in-center care, told him they simply didn't have the staff to accommodate her violent behavior. Donna said the only place she would take her son was Shrub Oaks International School, a boarding school for students with autism in Westchester County, New York. Donna paid a lawyer $15,000 and filed an ill-fated lawsuit against her son's school district after he refused to pay his tuition there.
When Donna spoke to me in early October, her son had spent the last few weeks at the Hospital for Special Care Autism Center in New Britain, Connecticut. Prior to his admission to the autism center, Donna's son spent 17 days in a Pocono emergency room after losing control. Insurance for him won't pay for him staying much longer, and when he is inevitably released into Donna's childhood home, she fears for her family's safety.
"We love him, but we can't live like this anymore," he said.
She told me that the Commonwealth has robbed people like her son of intense, structured options not found in a smaller "community-based" environment. “He needs that constant daily structure. You won't find that in a group home. You won't find that anywhere else except in an inpatient treatment unit, which unfortunately only goes up to 21 because they've closed all these places [like] White Haven," he said. "There are people like my son and many others who need that kind of environment."
ANAdvocacy groups say the decline in the number of people living in institutions like Polk and White Haven reflects the changing preferences of parents and guardians of people with intellectual disabilities, who believe that large institutions no longer provide a suitable environment for their children. children and children. in daughters.
The Pennsylvania Council on Developmental Disabilities, for example, stated that Pennsylvania's institutional census has declined because families now "see people with disabilities, and especially their children, as members of their communities." The Commonwealth Department of Human Services argued that "new generations of people and their families do not want services in [government institutions]".
That wasn't the case for Susan Jennings and her son Joey. Joey Jennings has autism, bipolar disorder and intellectual disability. His conditions lead him to lash out violently. Living at home, Joey's tantrums became uncontrollable for his parents; He punched holes in walls, broke windows and threw furniture. He was frequently violent towards his mother and once hit her on the head so hard that she almost lost consciousness.
After graduating from boarding school, Joey entered Pennsylvania's community support system for adults with intellectual and developmental disabilities. Over a period of four years he was released from six homes in all corners of the Commonwealth. On one occasion, a fight with a co-worker left Joey with a fractured eye socket, an injury that required 36 stitches to repair. Associates of his exposed him to pornography and often found him with mysterious injuries. Joey's behavior became so unmanageable to the group home staff that he was involuntarily committed to five different psychiatric wards, where he was forced to take 21 psychotropic medications. The drugs, Susan said, left Joey with "Parkinson's hand tremors, female breast disfigurement, serotonin syndrome, persistent insomnia, and psychotic breaks with reality."
Admissions to psychiatric wards cost the community $345,000. Susan said the figure "does not include the costs incurred for 911 calls, police services, court costs associated with the [commitment] process, ambulance travel, medical care and emergency room visits."
In group homes, where Joey was limited to the company of just two employees due to his behavior issues, Susan said he was isolated, alone and often covered in bruises. The team couldn't handle someone of Joey's behavioral complexity, he said, and his violent outbursts kept him from interacting meaningfully with the community.
Joey was denied access to the local swimming pool because the team could not accompany him in public. Neighbors who lived near his collective home would often call the police during his outbursts. The integration into the community promised by defenders of the rights of people with disabilities did not materialize.
After years of being abused in the community, being moved from dorm to dorm, and committed to mental institutions, her son was looking for an alternative. She came across all four of Pennsylvania's state institutions while doing research online. Susan consulted the social workers about the facilities and they discouraged her from seeking institutional placement.
"When I tried to take Joey to a state center, they said, 'Ms. Jennings, in 30 years no one in your county has been to state centers. These are horrible places.'" After speaking to other county social workers, she learned that “ they were not informed that there was a White Haven State Center.”
Susan filed papers for Joey's admission to White Haven, a former tuberculosis sanatorium that became a progressive disability facility in the 1950s. The Department of Human Services and the Office of Developmental Programs rejected the admission attempt.
"When we spoke with the ODP folks, one of the officers walked up to Tom Kashaitus [White Haven Warden] and waved his finger in front of his face and said, 'Take my word. Joey Jennings will never be included in White Haven." he said.
But after spending tens of thousands of dollars in legal fees, a judge granted Susan's request to place Joey in White Haven, where Susan says she was successful. She says White Haven is like a college campus, with dances and picnics and carnivals.
DThe decline in institutional censuses and the eventual closure of state institutions is mainly due to pressure from activists, not opposition from grassroots countries.
First, advocates are lobbying state legislatures and health departments to oppose or ban enrollment at state facilities. in your 2012Manual"Deinstitutionalization: Unfinished Business," the National Council on Disability, made up of disability rights activists, noted that closing admissions to facilities is "the most powerful action a state can take" because] the 'if' debate for 'when' and 'How'." The ban on institutional registration, whether by law or as part of a settlement following a lawsuit by a disability rights group, triggers a predictable series of events, often culminating in closures Institutional As new admissions are prohibited, the institutional population decreases as residents die or move to community facilities.
In the early stages of institutional downsizing, residents who have fewer medical and behavioral complications are more likely to move into the community. These residents are also the least expensive residents to treat. As better-functioning residents leave the facility, the remaining population ages and becomes more disabled, on average, and the per capita cost of maintaining the facility increases. However, the institutional campus, often built to accommodate hundreds of people in a large physical facility, often still has significant fixed costs associated with maintaining it, along with a unionized workforce whose wages must be paid. Institutional care is increasingly expensive.
Then advocates who started the first lawsuit defending the admission ban again claim that keeping state facilities running is "unsustainable" and "prohibitively expensive". For example, three advocates of deinstitutionalization in Connecticut argued in 2015 that continuing to operate “outdated and woefully inefficient public institutions” was a “waste” of state funds. Similar arguments have emerged in Massachusetts as advocates have tried to close facilities in Templeton and Waltham.
Such opposition distorts the record. By considering the full range of services offered in a facility (on-campus dental, medical, psychiatric, behavioral, and nursing services) and holding patient need profiles constant, social scientists have found that the difference in costs between “institutional” and “community” service-based “ Adjustments are marginal. Kevin K. Walsh, physician and director of research and quality management at the Developmental Disabilities Health Alliance, and his colleagues found that the cost savings associated with institution closures are "relatively small" and, to the extent that they exist, "are likely to be related to staffing costs compared to government and private caregivers.”
But the cost of institutional care has never been an issue for disability advocates; they describe institutions as "segregated" and would oppose institutional arrangements even if they were cheaper than their "community-based" counterparts. When I asked Celia Feinstein, co-executive director of the Temple University Institute on Disability, if she would close every remaining state facility in the country if she had the power, she said, "I would."
oOne of the last Pennsylvania facilities to close was the Western Center in the Canonsburg Hills. A group of parents failed to comply with state orders to remove their wards from the facility. Parents have raised hundreds of thousands of dollars to improve the services offered at the Western Center. When the closing day arrived, dozens of residents remained in the formwork buildings.
Pennsylvania sent police officers to cordon off the area around the facility. Parents and family members watched from a distance as staff loaded their loved ones into unmarked vans and took them to locations across the Commonwealth. They gathered at the entrance to the facility, hoping to say goodbye to their loved ones. To avoid riots, the government secretly moved residents to a side street.
"Would you like someone to come into your house and take your kids where they want to go?" asked Diane Wrana, mother of a West Central resident at the time.
As residents were transferred to vans, Susan Riley, a resident with autism, saw her sister behind the police line. He approached his sister. A policeman stepped between them and asked the resident to push and hit the policeman. Susan was handcuffed, sat screaming in the back of a police cruiser and then deported from the facility. The Western Center's front door closed, marking another successful institutional closure.
A similar fate awaits Polk and White Haven residents and their families. They passed a bill that would put a moratorium on institution closures, but Governor Tom Wolf vetoed it. They were granted class status in a lawsuit against the Commonwealth, but the legal basis of their case is uncertain. Can families stop a state from closing a facility that is operating of its own accord, especially if it has another institutional option? Other families successfully challenged settlement agreements in class action lawsuits brought by interest groups and renegotiated more favorable terms for the ICFs and their residents. But few have successfully prevented a state from closing an institution through litigation.
Many residents who have already moved will be successful in their new location, as will many across the country. Others don't. When Pennsylvania closed the Hamburg Center in 2011, eleven of the 74 residents left Hamburg.had diedthree years after the closure was announced. In Georgia, in 2011, after the Department of Justice required the state to transfer approximately 500 people diagnosed with severe disabilities from community facilities, 62 of these former residentshe diedunexpectedly in the first three years.
ANWeeks after the move, Polk employees visited Alma. She hopes to return to the red brick house in Venango, where she has spent more than 50 years of her life.
"Are you going to keep Polk open? Will I be back?
johann hirschaueris associate editor ofthe american conservativeand Fellow Robert Novak from 2022–23.
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