By Jessica Benham & Dustin Gibson
On August 14, 2019, the Pennsylvania Department of Human Services announced the beginning of a three-year process to close Polk and White Haven, which are two state centers for people with intellectual and developmental disabilities (ID/D). The transition from institutional to community-based care aligns with policies developed by Gov. Tom Wolf’s Administration, which is apart of the national trend that essentially began following the Olmstead v. L.C. United States Supreme Court decision in 1999, which held that the segregation of disabled people constitutes discrimination under the Americans with Disabilities Act.
Though disability rights advocates have celebrated the move toward community-based care, some family members of residents and employees of institutions have expressed concern about the closures, citing the lack of alternatives to institutions and the loss of union jobs. Five unions have workers at Polk and White Haven: SEIU 668, SEIU Healthcare PA, AFSCME Council 13, the Pharmacists’ Defence Association, and Office and Professional Employees International Union.
In response to these concerns, members of the Pennsylvania House of Representatives introduced a bipartisan bill – HB 1918 – that would put a moratorium on the closures of state centers. The same bill has been introduced as SB 906 in the PA Senate.
In this moment, the freedom of disabled people is once again being pitted against the desires of workers and concerns of family members. We deem it necessary to issue a renewed call for cross-movement solidarity between disabled people, family members, and workers – knowing that our liberation is bound up together. We believe in a future in which no one is caged. This calls on us to imagine systems and structures that do not yet exist and reject any notion that the freedom of some can only come at the expense of others.
To envision a path forward, we must first understand how the prospect of keeping institutions open are blatantly ignoring the depths of cruelty and indignity that institutions have long perpetuated. It is also incumbent upon us to lay bare the deep connections that exist between any and all forms of institutions and the similarities in the forms of violence that are deployed across them.
At the core of every argument in support of institutions is the belief that disabled people are undeserving of freedom and lack the ability/capacity to contribute to the world in ways that societal constructions have deemed “valuable.”
The justifications for institutionalizing disabled people are not far from, and at times markedly similar to the social institutions of slavery, convict leasing, and imprisonment – all of which are rooted in racialized notions of criminality, gender and sexuality, intelligence, deviance, disability, productivity and value in a capitalist system, and so on.
For example, some black people who escaped slavery were labeled as having mental illnesses such as drapetomania, which is defined as “the overwhelming urge to run away.” Upon capture, they were taken to asylums and “treated” for such “illnesses” with “some hard kind of work in the open air and sunshine,” according to the book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.
Regardless of public or private funding streams, institutions and prisons alike are typically profitable. The annual cost per resident at Polk and White Haven is $409,794 and $434,821, respectively. Although, the workers and contractors with the institutions profit from their existence, the amount of public funds the state of Pennsylvania is willing to pay highlights that the warehousing of disabled people is not solely based on money.
The explosion of incarceration during and after the deinstitutionalization movement illuminates the ever-present relationship that exists between these institutions. In Pennsylvania, like other states, some of the institutions were converted into prisons to accommodate the rapidly growing prison population at a convenient cost. It should be noted that disabled people represent the largest “minority” population in jails and prisons, and a disproportionate amount of them are BIPOC (Black Indigenous People of Color) and low/no income.
The most infamous institution in Pennsylvania is Pennhurst State School (originally called the Eastern State Institution for the Feeble-Minded and Epileptic), which is often credited as the inspiration for the movement to deinstitutionalize in the United States, in large part due to the active resistance that was mounted from the moment of its inception.
In 1913, less than a decade after Pennhurst opened, the Biennial Report to the Legislature submitted by the Board of Trustees, included Pennhurst’s Chief Physician quoting the prominent eugenicist, Henry H. Goddard by stating:
“Every feeble-minded person is a potential criminal. The general public, although more convinced today than ever before that it is a good thing to segregate the idiot or the distinct imbecile, they have not as yet been convinced as to the proper treatment of the defective delinquent, which is the brighter and more dangerous individual.”
The practices of institutions have long supported and carried out the mission of eugenics. In addition to the forced sterilization of hundreds of thousands of people across the US, segregation within institutions based on perceived gender was enforced to prevent the residents from procreating. The conditions at Pennhurst reflected the routine practices of violence in institutions.
Emily Smith Beitiks, Associate Director of the Paul K. Longmore Institute on Disability, reports: “There were cases in which residents were raped, sometimes while others watched and did not attempt to stop it. Residents who acted out were cruelly punished—one man was beaten repeatedly with a toilet bowl brush, leaving welts all over his body. Others were neglected, some left naked in beds or caged in cribs all day long.”
The abolitionist struggle to shut down Pennhurst culminated in two lawsuits (PARC v. Pennsylvania and Halderman v. Pennhurst) which ultimately resulted in the closure of Pennhurst and the transition of residents to community living placements. These lawsuits also set legal precedents which are relevant to the current closures.
Polk State Center, one of the institutions currently slated for closure, also has a thoroughly documented history of neglect and human rights abuses. In the 1970s, parents filed complaints against the school for abuse of residents, including the use of beatings and wooden cages as punishment. In the 1990s, the state of Pennsylvania sued nearly the entire staff of doctors at Polk for neglect and abuse that resulted in the death of 4 residents. As with all institutions, the violence inflicted upon the people being held at Polk continues to persist. In January of 2019, a woman was seriously injured at Polk, and an investigation into the circumstances surrounding the injury, including a possible cover-up, are ongoing.
Ultimately, however, the problems with institutions are not in individual cases of abuse or neglect, but in the very structure of institutions themselves.
In the 1978 case of Halderman v. Pennhurst State School and Hospital, Federal District Court Judge Broderick of the Eastern District of Pennsylvania ruled that people with disabilities have the three rights: the rights to habilitation, to be free from harm, and to non-discriminatory habilitation. He ruled that institutionalization at Pennhurst violated these rights and ordered that Pennhurst be closed and residents placed in community living arrangements.
Although the Halderman v. Pennhurst ruling was enough to close Pennhurst, there wasn’t a clear legal path to deinstitutionalization until Olmstead v. L.C. In the Olmstead decision, United States Supreme Court Justice Ruth Bader Ginsberg articulated:
“States are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.”
These are some of the many factors that PA’s Department of Human Services must take into account when working to move institutional residents from Polk and White Haven into community placements. As noted in the announcement of the upcoming closures by DHS, “treatment” professionals will work with each individual to ensure an appropriate new placement. This should be led by disabled people through peer support, alongside care workers.
As Pennsylvania continues to move away from the institutional model, there are several publicly funded models to consider. Among these, the most prominent are state hospitals, group homes, in-home care, and noncare (or intentional absence of care). State hospitals have, like the state centers, also been rife with abuse, and are subject to our same criticisms with regard to the ways in which institutionalization fundamentally dehumanizes people.
Group homes, which are typically run by private care providers and funded by the state, are the most common placement for people with ID/D receiving waiver services in the state of Pennsylvania, representing roughly 57% of those receiving waiver services. Services for individuals at group homes are typically funded by the Consolidated Waiver, while the services provided for individuals in their own homes are typically funded by the Person/Family Directed Support Waiver.
Group homes offer a greater amount of freedom and autonomy to residents than state institutions do, which will increase as Pennsylvania develops its plan to follow the Final Rule (federal guidance mandating a list of requirements for providers), while also costing less per resident than state institutions. The publicly-funded, privately operated model of care (both in group homes and in people’s own homes) is the state model with the best outcomes for disabled people that currently exists in Pennsylvania, though not the best model we can imagine.
After all, private care providers are typically not unionized and experience incredibly high rates of staff turnover, which, in turn, impacts the quality of care. I (Jessica) sit on the Information Sharing and Advisory Committee for the Office of Developmental Programs (within DHS) alongside representatives from many providers. I typically see these providers as more concerned about profit than the wellbeing of their employees and residents. I have heard private providers oppose movements toward transparency that would reveal the reports of negative treatment of their residents. With that in mind, we share the concerns of family members and unions about the privately-operated model of care.
Care workers perform incredibly important labor and deserve the protections of unionization, as well as competitive wages, benefits, and safe working conditions. The working conditions of care workers are the living conditions of disabled people, providing a natural foundation for solidarity.
We stand in solidarity with care workers, who have always been part and parcel of the larger disability community, especially those who have made sacrifices to support the procurement of freedom with disabled people. We agree that privately held, profit-driven group homes are not ideal places to work or live.
We are also unwavering in our position that no one should be held in a cage, regardless of the amount or type of jobs they create. Access to a unionized job should not be contingent upon the captivity of anyone, including disabled people in institutions.
One of the major barriers to closing institutions is the lack of funding allocated for Home and Community-Based Services in PA and beyond. The waitlist for services has always been in a perpetual state of limbo where people with ID/D somehow are expected to make do without care services until a spot opens up for them. If requested, the state of Pennsylvania is obligated to provide “care” in a state center, but living in a state center automatically places a person as priority 2 on the waiting list, meaning that as long as there exists a priority 1 list, people in institutions are never waiver eligible; unless, of course, the institution is closed, in which case they receive an immediate transition plan. This institutional bias is fundamental to the operation of institutions and precisely why the closing of institutions is pivotal to moving towards the provision of care we all deserve.
The push for a moratorium on the closure of state centers by family members and workers is not new. Workers in institutions have nearly always opposed their closure, and, as the Pennhurst Longitudinal Study notes, the closure of Pennhurst revealed “a schism among parents of [r-word] citizens regarding the future of institutional care” (p. 41). Given the problems outlined above with both state centers and alternative models, it is understandable that all of those impacted by the impending closures of Polk and White Haven are not on the same page. Yet, as the Pennhurst Longitudinal Study goes on to document, following the closure of Pennhurst, even parents who initially opposed the closure have admitted that it was the right decision. A similar trend was found among family members after the closure of Hamburg State Center in 2018.
It is long overdue to end the immoral practice of segregating disabled people from society. We are vehemently opposed to the passage of HB 1918 and any similar bills that impede the closure of institutions. The existing alternatives are not favorable for workers or disabled people, so it is on us to imagine and build models that are. It will require courage, sacrifice, and solidarity to do so; all of which has been done before and will be done again.
We envision a future where access to union jobs are not contingent upon the institutionalization and imprisonment of people. A future in which workers and disabled people work in solidarity:
To end the unjust captivity of disabled people in state institutions.
To end the unfair treatment of workers and of residents in private care settings.
To unionize all care providers.
To imagine a world that provides the care we all deserve.
Jessica Benham has an MA in Bioethics (Healthcare Ethics) from the University of Pittsburgh, where she has been part of the campaign to unionize grad workers. Her research is about the ethics of decision-making by individuals with ID/D in institutional and group home settings. She is also an Autistic person and the Director of Development for the Pittsburgh Center for Autistic Advocacy. Jessica recently announced her candidacy for state representative in PA House District 36.
Dustin Gibson is a community builder who develops he[art]work to expand the collective consciousness of marginalized communities and address the nexus between race, class, and disability. He’s a co-founder of the Harriet Tubman Collective and Disability Advocates for Rights and Transition.