The Last Institutions

When Pennsylvania’s Department of Human Services announced in 2019 that Polk and White Haven Centers, two large state-operated institutions for people with intellectual and developmental disabilities, would close by November 2022—claiming that moving residents to “community-based settings” would better honor their “inherent worth and dignity”—it spelled the end of two campuses that had housed the intellectually and developmentally disabled for more than 50 years. It also sparked a political fight between disability-rights activists, who hailed the closures as a step toward full inclusion for people with disabilities, and many residents and their families, who feared losing what they considered their and their loved ones’ homes.

Residents like Alma were caught in the middle. Alma has mild to moderate intellectual disabilities and had lived at Polk Center for nearly 50 years. She was a favorite of facility staff—talkative, kind, joyful—and one of the facility’s most senior residents, who saw the century-old campus transform from what critics called an overcrowded, understaffed warehouse into a federally licensed care facility for people with disabilities.

Alma loved the people at Polk. She made crafts for staff and her fellow residents, most of whom were more significantly disabled. When nonverbal residents tried and failed to signal their needs, Alma knew them well enough to translate their requests to staff. She also loved the place: the grounds, the campus, the community that had grown up around the maze of Chateauesque brick buildings in rural Venango County. She sorted letters in the facility’s mailroom, tended plants in its greenhouse, and hung around the Polk canteen in her wheelchair, greeting staff and residents as they passed through to grab coffee or candy.

When staff told Alma in 2019 that Polk Center would close, she wept. When legislators, government officials, and others toured the campus in the months after the announcement, she told them, “Polk needs to stay open. This is my home.” As the months passed, families and employees attended hearings in Harrisburg, begging the state to keep Polk and White Haven open. Disability-rights advocates and department officials countered with messages about the need to “move forward” and embrace “community-based services.”

Several guardians filed a lawsuit in 2019 hoping to stall the closures. That case is pending, but meantime, residents have been moved out. Campuses once filled with noise and activity are slowly being mothballed, with furniture, televisions, and calendars left behind in suspended animation. Fewer than 175 of the 307 patients housed at the two facilities remained by October 2022.

Alma was among them. “Alma seemed to think that she had stopped the closure by talking to different people,” a Polk employee told me. She had not. In early October, after several of the women in her residential cottage had been moved to group homes and facilities across Pennsylvania, Alma was told that she would be leaving the center within a week. Her family had not joined the contingent suing the commonwealth and had agreed to relocate her to a center in Selinsgrove before the deadline.

“She cried for days,” a staff member told me. “She would say to me, over and over, ‘How would you feel if this was you?’”

Staff had been moving about five residents per week to community-based settings or one of the two remaining state facilities in anticipation of the closure date. Some residents hadn’t been told Polk was closing. One staff member told me that in August, several Polk residents were “loaded . . . into a van” and told that “they were being taken on a trip—not that they were moving, not that they were going to be living somewhere else, but that they were going on a trip somewhere fun.” A van carrying their belongings departed 45 minutes later.

Alma understood staff when they told her that she had to move, but as moving day approached, she bargained to stay. “I will be good,” she said. But in late October, staff placed Alma and her belongings in a van. They drove nearly four hours across the commonwealth to a facility in Selinsgrove. They wheeled her into the building and exchanged emotional goodbyes. It was goodbye to gossip at the Polk canteen, to parades winding by Meadowside cottage, to rides on Polk’s pontoon boat and Friday night flicks in its theater.

As staff began walking away, Alma cried out from her wheelchair. “Please, give me one more chance,” she said.

To their critics, Polk and White Haven Centers are relics of an era when the disabled were shunted away to large impersonal institutions, doomed to lives excluded and segregated from the community. To the advocacy groups who work tirelessly to close institutions, deinstitutionalization represents both best practices in the field of developmental disabilities and a moral imperative. To their supporters, Polk and White Haven are critical backstops in the disability-services system, a placement of last resort for the most medically and behaviorally challenged individuals.

At their inception in the mid-nineteenth century, training institutions for the developmentally disabled such as Polk were an advancement in the treatment of people with disabilities, who often had been relegated to poorhouses and jails. The first “state school” was opened in Massachusetts in 1850 under the direction of Samuel Gridley Howe, a physician and an abolitionist whose institution for the disabled sought to educate “feeble-minded” children.

By 1875, eight state schools for people with intellectual and developmental disabilities operated in the United States. Most were set in rural areas with adjoining farms, providing food and work for residents. Administrators hoped those residents would ultimately return to their communities with the skills required for gainful employment. A retrospective in a 1940 edition of the American Journal of Mental Deficiency noted that the earliest state schools sought to give people with disabilities “a special form of training, and after a few years return [them to their] home or community.”

This was the founding vision at Polk Center, which opened as Polk State School and Hospital in 1897 on more than 2,000 acres in northwestern Pennsylvania. According to superintendent J. M. Murdoch’s 1924 biennial report, some individuals with disabilities admitted to Polk were later “returned to the family or found suitable homes” in the community after attending school and work programs on grounds. “Many of these former pupils,” he noted, “keep in touch with us by letters and visits; expressing appreciation and gratitude for the training and treatment received.”

The schools soon became stretched beyond capacity. Conditions at Polk and other state institutions deteriorated in the 1940s and 1950s as surging admissions strained facilities’ already-thin staff and resources. By 1958, nearly 3,000 people lived at Polk, and more than 115,000 people with disabilities lived in state schools across the country. At its peak, Pennsylvania operated 23 institutions for people with intellectual and developmental disabilities, many teeming with severely disabled children.

More people with mild and moderate disabilities were kept at home after World War II, which led to Polk admitting a disproportionate share of people with severe disabilities. The school’s superintendent predicted that such trends would “inevitably result in a more custodial type of program with emphasis on medical and nursing care and with much less prospect of producing definite gain through education and training.” Polk, and the other increasingly custodial state schools around the country, soon became bywords for abuse and neglect. Rows of crippled children laid unattended in cribs, their development permanently stunted. Disabled adults roamed through huddled day wards, wailing and moaning and covered in bruises.

Staff were tasked with caring for thousands of disabled children and adults on a shoestring budget with unthinkably high staff-to-patient ratios. One report from the notorious Pennhurst State School in Spring City, the subject of the 1968 exposé Suffer the Little Children, had two staff members tending to nearly 80 crippled children with intellectual disabilities on one of the school’s day wards.

In time, the system was reformed. The worst facilities closed. Children with intellectual disabilities were rarely admitted to institutions after the Individuals with Disabilities Education Act passed in 1975, guaranteeing even the most severely disabled children access to public education. Parents of adult children with disabilities called on legislators to develop smaller settings as an alternative to institutional placement, and what started as “community training homes” quickly became a robust network of smaller, more individualized supports for people with disabilities. These smaller settings successfully served many people with even severe disabilities.

Prompted by Suffer the Little Children and Geraldo Rivera’s exposes at New York’s Willowbrook State School and Letchworth Village, President Richard Nixon signed an amendment to the Social Security Act in 1971, creating the intermediate care facility (ICF) program for people with mental retardation and subjecting the state schools to federal oversight. States that funded their institutions through the ICF program had to maintain adequate staffing ratios, ensure that residents had access to 24-hour nursing care, educational services, and other programming, and comply with all federal care regulations.

Staffing ratios at the schools—which later took on other names, such as “developmental centers”—improved dramatically. As their populations declined, they were able to focus their staff and resources on the narrow segment of the disability population that either wanted or needed facility-based care.

The schools and their private equivalents continued to downsize. The continued development of the community-based system of care; decades of litigation aimed at state facilities by advocacy groups; and formal and informal efforts to divert institutional admissions by social workers, state departments of health, and state law combined to diminish their numbers. By 2016, 92 percent of adults with developmental disabilities receiving Medicaid residential services were doing so in the “community,” and only 8 percent were doing so in ICFs, or what advocates characterize as “institutions.” In Pennsylvania, as of 2018, nearly 93 percent of the residential caseload was being served in the community, and of the 2,751 residents served in ICFs, fewer than 800 remained in the old state institutions.

The patients who remain at ICFs today tend, with exceptions, to be either long-stay residents like Alma, medically complicated cases who need around-the-clock care, people with severe autism or other behavioral challenges for whom community placements have failed, or criminals deemed not guilty by reason of mental defect.

But for court-ordered commitments, which are relatively rare, every person living at a state-run ICF today is there voluntarily. If they or their guardians wish, they are free to leave for an available placement in a “community-based setting.”

According to a survey by Pennsylvania’s Protection and Advocacy organization in 2011, of the 307 institutional residents capable of responding to a survey, 271 said that they wanted to stay where they were. The most recent data, from 2017–2018, found that residents in “institutions” in the commonwealth were slightly more satisfied than residents in “community-based” settings.

As conditions improved at the state schools and the residents who wanted to leave facilities were able to do so, the debate over the future of institutional care for the disabled changed. Research demonstrating that many individuals with disabilities improved upon discharge from the institutions, and the general mood of “liberation” attending the 1960s and 1970s, led disability-rights activists to argue that the schools needed to be abolished, not reformed.

Parents, staff, and some residents resisted. If facilities could meet federal standards for the provision of active treatment, and residents and their guardians were satisfied with the care provided, then why should the preferences of activists take priority?

Yet advocacy groups in Pennsylvania and around the country coalesced around the position that all remaining state schools should be closed and their residents placed into “community-based” settings, even if residents and their guardians opposed community placement. The Arc of Pennsylvania, the commonwealth’s largest disability-rights group, called on the commonwealth to “close all state centers and provide quality and comprehensive services in the community.” Its Philadelphia chapter supports the closure of all “of Pennsylvania’s State Centers and the closure of all large private” institutions. Sherri Landis, head of the Arc of Pennsylvania, said that it was “embarrassing” that the commonwealth “still operates state-run institutions for people with intellectual disabilities.”

To many parents and residents who have relied on the stability, specialized care, and institutional knowledge found at state-operated facilities, this commitment to total deinstitutionalization seems dogmatic. Edward Whalen, father of a man with intellectual disabilities who lived at a state school in rural Connecticut, told the New York Times in 1995 that “advocates are mesmerized by the mystique that all institutions are bad, that the buildings should be razed, the earth bulldozed over and then salt poured on the grounds so it will never rise again.”

Pennsylvania policymakers and advocacy groups have been trying to close places like Polk and White Haven for decades. That explains their triumphant reaction to a decision that in effect forces people out of places in which they’ve freely chosen to live. Then-DHS secretary Teresa Miller called the closures “an incredible moment in our history in Pennsylvania” and a step toward “a future that truly includes individuals with disabilities.” Disability Rights Pennsylvania, the commonwealth’s Protection and Advocacy organization, “strongly support[ed]” DHS’s decision. A member of Pennsylvania’s University Center for Excellence in Developmental Disabilities called the move “consistent with our mission and values.”

When I spoke to Pennsylvania’s Department of Human Services in 2019, they told me that their decision was “about choice.” Remaining at Polk or White Haven was not among the “choices” offered by the department, but they reassured me that residents of the two centers were free to choose to move to one of the two remaining state-operated institutions in Selinsgrove or Ebensburg. Many of the Polk and White Haven residents who have moved have elected to go to one of these.

But if the existence of these institutions is an embarrassment to the commonwealth, and closing the centers and moving residents into the community better recognizes the inherent worth and dignity of the centers’ residents, then how could the state justify keeping any of them open? I asked Miller whether Selinsgrove and Ebensburg would be closed, too.

“I mean, that’s certainly an option,” she said. “That’s certainly a potential future.”

Seventeen states and the District of Columbia no longer operate public institutions for people with disabilities. Some of those states operate private institutions. Some place their most difficult cases in nursing homes or mental hospitals. Indiana, for example, which closed its last public disability institution in 2012, had 51 people with intellectual and developmental disabilities living in state mental hospitals and more than 1,300 living in nursing homes as of 2018.

Advocates nevertheless claim that these 18 jurisdictions are evidence that no one with a disability needs to live in an institution. Peri Jude Radecic, executive director of Disability Rights Pennsylvania, said that “all individuals can receive the supports they need to live in the community with person-centered planning.” But when facilities and other intensive options for the most severely disabled close, some families are forced to travel out of state 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 aggressiveness and self-harm. He has broken schoolteachers’ arms and ribs, smashed televisions, and bitten his father. According to Donna, her son “bit his own hand so hard that he got cellulitis and had to be on intravenous antibiotics.”

Pennsylvania-based providers told Donna that her son was “too severe” for them to treat. Devereux, a disability-services provider in Pennsylvania that offers both community- and facility-based care, told her they simply didn’t have the staffing to accommodate his violent behaviors. The only place, Donna said, that would take her son was Shrub Oaks International School, a residential school for students with autism in Westchester County, New York. Donna paid an attorney $15,000 and brought an ill-fated lawsuit against her son’s school district after it declined to pay for his tuition there.

When Donna spoke to me in early October, her son had spent the past few weeks as an inpatient at the Hospital for Special Care’s Autism Center in New Britain, Connecticut. Before his admission to the Autism Center, Donna’s son had spent 17 days at a Pocono emergency room after he had spiraled out of control. Her insurance won’t pay for him to stay much longer, and when he is inevitably discharged back to Donna’s family home, she fears for her family’s safety.

“We love him, but we just can’t live like this anymore,” she said.

She told me that the commonwealth had been taking away the intensive, structured options people like her son need that can’t be found in a smaller “community-based” setting. “He needs that constant daily structure. You’re not going to find that in a group home. You’re not going to find that anywhere else except a residential treatment facility, which unfortunately only goes up to age 21, because they’ve shut down all these places [like] White Haven,” she said. “There [are] people like my son and many others who need that type of environment.”

Advocacy groups claim that the declining number of people living in institutions such as Polk and White Haven reflects the changing preferences of parents and guardians of people with intellectual disabilities, who, they say, no longer view large facilities as an appropriate setting for their sons and daughters.

Pennsylvania’s Developmental Disabilities Council, for example, claimed that Pennsylvania’s institutional census had declined because families now “see people with disabilities, and specifically their children, as members of their community.” The commonwealth’s Department of Human Services argued that “newer generations of individuals and their families do not want services in [state institutions].”

That was not the case for Susan Jennings and her son, Joey. Joey Jennings has autism, bipolar disorder, and an intellectual disability. His conditions cause him to lash out violently. When he lived at home, Joey’s tantrums became unmanageable for his parents; he punched holes through their walls, broke windows, and threw furniture. He was frequently violent toward his mother and once headbutted her so hard that she nearly lost consciousness.

After graduating from a residential school, Joey entered Pennsylvania’s system of community-based supports for adults with intellectual and developmental disabilities. Over a four-year period, he was discharged from six group homes from all corners of the commonwealth. Once, an altercation with a staff member left Joey with a broken eye socket, a wound that required 36 stitches to repair. He was exposed to pornography by staff and often found with mysterious injuries. Joey’s behavior became so difficult for group-home staff to manage that they had him involuntarily committed to five different psychiatric wards, where he was forced onto 21 psychotropic medications. The medications, Susan said, left Joey with “Parkinsonian tremors in his hands, disfiguring female breasts, Serotonin syndrome, intractable insomnia and psychotic breaks with reality.”

The stays in the psychiatric wards cost the commonwealth $345,000. Susan said that that figure “doesn’t include the costs incurred from the calls to 911, the police services, the court costs associated with the [commitment] procedure, ambulance rides, medical care, and emergency room visits.”

In the group homes—in which, because of his behavioral challenges, Joey was confined to the company of just two staff members—Susan said he was isolated, lonely, and frequently covered in bruises. Staff were unable to handle someone with Joey’s behavioral complexity, she said, and his violent outbursts prevented him from meaningfully interacting with the community.

Joey was denied access to the local swimming pool because of staff’s inability to manage him in public. Neighbors who lived in the vicinity of his group home often called the police during his outbursts. The community integration promised by disability-rights advocates failed to materialize.

After years of her son’s mistreatment in the community, being bounced around from group home to group home and languishing in psychiatric wards, Susan searched for an alternative. She came upon Pennsylvania’s four state-operated institutions while doing research online. Susan asked caseworkers about the facilities and was discouraged from pursuing institutional placement.

“When I tried to get Joey into a state center, I was told, ‘Mrs. Jennings, no one has ever gone into the state centers from your county in 30 years. They’re terrible places.’” After speaking with other case workers in the county, she learned that they are “told not to say that White Haven State Center exists.” She “didn’t even know the state centers existed,” Susan said, but “the social worker had known about this all along.”

Susan filed the papers to get Joey admitted to White Haven, a former tubercular sanatorium converted to a progressive-minded disability facility in the 1950s, through the courts. The Department of Human Services and Office of Developmental Programs opposed the attempted admission.

“As we talked to the folks at ODP, one of the officials approached [White Haven guardian] Tom Kashaitus, and waved his finger in his face, saying, “Mark my words. Joey Jennings will never be admitted to White Haven,” she said.

But after spending tens of thousands of dollars on attorney fees, a judge granted Susan’s request to place Joey at White Haven, where Susan says he has thrived. She says White Haven is like a college campus, with dances, picnics, and a carnival.

Declining institutional censuses and the eventual closures of state institutions stem primarily from activist pressure, not grassroots opposition by parents.

First, advocates pressure state legislatures and departments of health to oppose or ban admissions to state-operated institutions. In its 2012 handbook “Deinstitutionalization: Unfinished Business,” the National Council on Disability, staffed by disability-rights activists, noted that closing admissions to institutions was “the most powerful act a state can take” because it “changes the entire [closure] debate from ‘if’ to ‘when’ and ‘how.’” Banning institutional admissions, either by law or as part of a settlement agreement after a lawsuit brought by a disability-rights group, sets in motion a predictable series of events that often culminates in the closure of institutions. After new admissions are banned, institutional populations decline as residents either die or move to community-based settings.

In the initial phase of institutional downsizing, the residents most likely to move to the community are those with the fewest medical and behavioral complications. Those residents are also the least expensive residents to treat. As higher-functioning residents depart the facility, its remaining population becomes, on average, older and more disabled, and the per capita costs of maintaining the institution increase. Yet the institutional campus, often constructed to house hundreds of people on a large physical plant, often still has significant fixed costs associated with its maintenance, along with a unionized public workforce whose salaries must be paid. Institutional care becomes ever more costly.

Then, advocates who set the initial process in motion by advocating a ban on admissions return to claim that the continued operation of state facilities is “unsustainable” and “prohibitively expensive.” Three proponents of deinstitutionalization in Connecticut, for example, argued in 2015 that continuing to operate “anachronistic and woefully inefficient public institutions” is a “waste” of the state’s money. Similar arguments arose in Massachusetts as advocates sought to close facilities in Templeton and Waltham.

Such opposition distorts the record. When the full array of services offered at an institution are considered—on-campus dental, medical, psychiatric, behavioral, and nursing services—and patient need profiles are held constant, social scientists have found that the difference in cost between “institutional” and “community-based” settings is marginal. Kevin K. Walsh, a physician and director of quality management and research at the Developmental Disabilities Health Alliance, and his colleagues found that cost savings associated with institutional closures “are relatively minor,” and to the extent they exist, are “likely due to staffing costs when comparing state and private caregivers.”

But the cost of institutional care was never the crux of the issue for disability-rights advocates; they describe institutions as “segregated” and would oppose the existence of institutional settings even if they were cheaper than their “community-based” counterparts. When I asked Celia Feinstein, co-executive director of the Institute on Disabilities at Temple University, whether she would close every remaining state-operated institution in the country if she had the power to do so, she said, “I would.”

One of the last facilities in Pennsylvania to close was Western Center, set in the rolling hills of Canonsburg. A group of parents did not comply with the state’s orders to move their wards out of the facility. The parents had pooled hundreds of thousands of dollars to improve the services offered at Western Center. When closure day came, dozens of residents remained in the shuttering buildings.

Pennsylvania sent police officers to cordon off the area around the institution. Parents and family members looked on from afar as staff loaded their loved ones into unmarked vans and departed to locations throughout the commonwealth. They gathered at the entrance to the facility, hoping to wave to their loved ones as they departed. To avoid disruption, the administration moved residents out surreptitiously through a back road.

“How would you like to have someone come in your house and take your kids from you, and move them anywhere they want to?” Diane Wrana, a mother of a Western Center resident, asked at the time.

As the residents were being placed into the vans, Susan Riley, a resident with autism, spotted her sister behind the police line. She walked toward her sister. A police officer stepped between them, prompting the resident to push and slap the officer. Susan was handcuffed, placed screaming in the back of a police cruiser, and later deported from the facility. The front door to Western Center was locked, completing another successful institutional closure.

The residents of Polk and White Haven and their families await what they fear is a similar fate. They pushed a bill that would place a moratorium on institutional closures, but Governor Tom Wolf vetoed it. They were granted class status in a lawsuit against the commonwealth, but the legal merits of their case are uncertain. Can families prevent a state from closing an institution that it operates of its own volition, particularly when they are provided with another institutional option? Other families have successfully challenged settlement agreements in class-action suits brought by advocacy groups, and renegotiated terms more favorable to ICFs and their residents. But fewer have successfully prevented a state from closing an institution through litigation.

Many residents who have already been moved will succeed in their new placements, as have many people around the country. Others won’t. When Pennsylvania closed the Hamburg Center in 2011, eleven of the 74 residents who transferred from Hamburg had died within three years of the closure announcement. In Georgia in 2011, after the Department of Justice required that the state move nearly 500 people diagnosed with profound disabilities out of institutions and into the community, 62 of those former residents died unexpectedly within the first three years.

Alma was visited by Polk staff weeks after the move. She holds out hope of returning to the red brick cottage in Venango, where she spent more than 50 years of her life.

“Are they going to keep Polk open? Am I going to get to come back?”

Top Photo: A residential cottage at Polk State Center. (Photo: Nicole Kenney Oniboni)