Since taking office in 2015, Pennsylvania governor Tom Wolf has pursued a radical deinstitutionalization agenda. His administration’s Department of Human Services (DHS) has allied itself with various “community-living” advocacy organizations that, in tandem with allies in the academy, have sought to transform the state’s mental-health and disability-services system. These state and private actors have pushed for the transfer of people with disabilities out of residential institutions and into “community-based” settings, a move that they pursue with or without the consent of affected individuals or their guardians.
In 2017, the Wolf administration closed the Hamburg Center, a residential facility for adults with intellectual disabilities, and the civil unit of Norristown State Hospital for the severely mentally ill. In announcing the closures, the state’s then DHS secretary Ted Dallas made sure to repeat the slogans of the revolution: “Individuals experience a better quality of life when they receive care and support in their homes and in their communities, when possible. Today’s announcement means we are expanding opportunities for residents to live their lives to the fullest by returning to their homes and communities as contributing members of society.”
Whether the guardians and individuals who were forcibly displaced agreed with Dallas’s assessment is left to our imagination. One woman told the Pennsylvania Post about how the closure of the Norristown civil unit affected her schizophrenic son, who spent eight years in the hospital before falling back into psychosis upon release: “They called the police instead of taking him to the hospital. . . . He resisted arrest. He was sick. He was psychotic. They should have taken him straight to the hospital. No, they took him to regular jail, and they put a beehive over his head, and he banged his head in the jail all night long.”
Wolf continued to pursue his deinstitutionalization agenda, and in 2019, his DHS announced the forcible closure of two residential facilities that house over 300 intellectually disabled Pennsylvanians. Families of the residents mobilized to oppose the closure and succeeded in getting a bill passed through both chambers of the state legislature that placed a moratorium on the closures. A staff member at one of the centers told National Review at the time that one of the intellectually disabled residents, upon hearing of the closure, wheeled himself to the administration building every day and cried. Wolf vetoed the bill, and both centers are still slated to close.
The latest development in this ongoing disability revolution came when lawmakers in the Pennsylvania House of Representatives passed House Bill 1363, a “bill of rights for individuals with intellectual disabilities.” That bill, on its way to the Pennsylvania Senate, again imperils the most disabled members of the Commonwealth under the guise of “civil rights.”
Several passages in the bill are problematic for the severely and profoundly disabled. Two of the bill’s provisions take direct aim at the concept of guardianship for people with disabilities. (A guardian is most often a family member of the disabled individual.) The first is a statement of principle for all future disability policy (reproduced here with my emphasis):
Individuals with intellectual disabilities or autism and, if chosen by the individual, their families or legal guardians are instrumental decision makers regarding the services and supports the individuals receive and inform policies and programs which affect the lives of the individuals and their families.
The second discusses the provision of “community-based” services (again, with my emphasis):
If the individual so chooses, family members and legal guardians of an individual with intellectual disabilities or autism shall be involved in meetings regarding the planning for and arrangement of supports and services or other allowable services.
These passages raise an important question: How are we to know what a nonverbal or severely disabled individual “chooses” about the role of his guardian in the planning of his supports and services? There are means of nonverbal communication such as gestures and body language, but interpreting them is inherently subjective. More fundamentally, the language in the bill subverts the very purpose of guardianship: The court appoints a guardian for an individual precisely because it has judged that person to be partially or completely incapable of making life decisions independently.
If guardians are stripped of their role as decision-makers in the lives of persons who can’t speak or have the functional capacity of a toddler, who will fill that void? “Advocates,” of course — a class of people who seem to have a ubiquitous footprint on all levels of the disability-services system. In my work with individuals with severe cognitive disabilities, I have seen firsthand how these ideological “advocates” — social workers, nonprofit employees, academics — attempt to put words in the mouths of individuals incapable of speech, words that so often seem to be consonant with their own utopian agenda and derogative of the will of parents or guardians.
Why has the abolition of guardianship been a longstanding fixture of radical disability politics? In the view of some advocacy organizations, guardians stifle the potential of their disabled loved ones by depriving them of an autonomous life and denying them the “dignity of risk.” While the implication that an agitator at a nonprofit is more solicitous of a disabled person’s “best interest” than is that person’s own guardian borders on calumny, one might sympathize with higher-functioning persons with disabilities who feel unduly restrained by their guardians. But that’s the critical factor: The needs of a person with mild autism, say, are very different from those of an individual with the cognitive capacity of an infant. So often it is individuals in the higher-functioning category who push the “inclusion” agenda through their nonprofit advocacy shops, while those in the profoundly disabled category are left voiceless, subject to the whims of the minimally impaired voices who claim to speak for them.
Broadly speaking, there are two forms of residential services for individuals with disabilities — home- and community-based settings, such as group homes and apartments, for which one receives a home- and community-based services (HCBS) waiver under Medicaid, and institutional settings, like intermediate care facilities (ICFs). For decades, many social workers have avoided mentioning the “other kind” of services — campus-based “institutions” — when talking to families about their support options. This, combined with admissions freezes to state facilities and decades of litigation, has all but erased such settings from the popular imagination of disability services. Many families who ultimately discover that these facilities exist do so by accident, after their medically fragile or behaviorally challenged loved one fails to thrive in a group home on a cul-de-sac in a residential neighborhood, and they are left desperate for an alternative.
The Pennsylvania bill pushes community-based settings as the only legitimate form of disability services. This so-called disability bill of rights makes no mention of an individual’s right to choose what type of setting he lives in, which might just be — perish the thought — a building dedicated to the care of the disabled, or what a very-online activist might decry as an “institution.” Instead, the only relevant language on that score says that, for people with disabilities, “the opportunity to choose where they live in the community is affirmed” (my emphasis).
The opportunity to choose a so-called institution is foreclosed on individuals and their families by their supposed moral betters in the legislature.
Further, this provision might be used in the courts to forcibly relocate those persons residing — by their own and their guardians’ volition — in “institutions” to a setting more consonant with the preferences of activists. If this is not what the legislators intended — and one suspects this is precisely what the anti-institutional advocates intended — they should amend the bill to include a provision specifying that ICFs and other campus-based settings are part of the continuum of care in Pennsylvania for those individuals who choose them.
In 1999 the Supreme Court’s Olmstead vs. L.C. decision interpreted the application of the Americans with Disabilities Act of 1990 to residential settings. The Pennsylvania bill characterizes the ADA, in light of that decision, as an “integration mandate.” By “integration mandate,” the Pennsylvania legislature is drawing on shopworn advocacy language about the evils of so-called segregated settings for the disabled — campuses, farmsteads, and medical units. But in fact the majority in Olmstead spurned this interpretation of the ADA, rejecting the notion that “community-based treatment be imposed on patients who do not desire it.” The majority affirmed that “the ADA is not reasonably read to impel States to phase out institutions,” as Pennsylvania appears poised to do here.
The most vulnerable people in our society rely on these institutional settings. In 1995, Edward Walen, the father of a severely intellectually disabled adult son living comfortably in an institution, described disability activists as “mesmerized by the mystique that all institutions are bad, that the buildings be razed, the earth bulldozed over and then salt poured on the grounds so it will never rise again.” The Pennsylvania legislature should know better than to entrust the lives of its most vulnerable to the fads and fancies of the advocacy class.