Health Care

Who Decides Where Pennsylvanians with Disabilities Should Live?

(Pixabay)
Two residential facilities slated for closure serve those who prefer to live there.

In August, Pennsylvania’s Department of Human Services announced its intention to close two large state institutions for individuals with intellectual and developmental disabilities. The department said that closing the Polk and White Haven state centers was necessary to best “honor the inherent value of every person” and ensure that “every Pennsylvanian can live an everyday life.” The implication of the department’s statement was clear: Parents, families, and the residents themselves hold their loved ones’ — or their own — “inherent value” in a lower esteem than does state DHS secretary Teresa Miller.

To quell the concerns of the over 300 families of persons with severe disabilities affected by the potential closures, the department cited the “successful 2018 closure . . . of Hamburg State Center,” another state-run institution for adults with severe intellectual and developmental disabilities, as a model for the prospective closures of the Polk and White Haven centers. It is certainly bizarre to call the Hamburg closure “successful”: At least eleven of the 85 former Hamburg residents who were forcibly displaced from the center last year have died.

Sara Luterman, a self-described “disabled disability writer,” wrote an article in the Washington Post defending the closure of the two centers. She characterizes the emotion displayed by workers, families, and some residents at the two facilities — many of whom took to the capitol in Harrisburg to both protest and testify against the proposed closures — as subterfuge meant to conceal a broader, internecine left-wing dispute between “disability rights advocates” and those in “organized labor” who work at state institutions. Luterman argues that the anguish displayed by those workers at the two facilities, apparently disturbed by the prospect of displacing hundreds of persons with severe disabilities from the care setting that they or their guardians have chosen, was a ruse deployed to save their jobs at the expense of residents who would be better served in the “community.”

What is clear, from this and other items that Luterman has written, is that she is not fond of settings that she deems “institutions” — which she defines broadly to include everything from large state facilities such as Polk and White Haven to six-person group homes. Luterman’s right to dislike such settings is undisputed, but her right to impose those preferences onto thousands of persons with disabilities and their families is very much in dispute. These individuals and their families have not elected Sara Luterman as their spokesperson, but she presumes that her preferences are theirs or, worse, doesn’t care what their preferences are at all. Jill Barker, the mother of a son with severe disabilities, noticed this phenomenon in 2015: “Disability self-advocates support the elimination of services and residential housing that they personally abhor,” in turn stripping “people with higher support needs who lack the ability to make decisions for themselves” of those services that they require.

Luterman calls this conflict between activists and state employees a “secret war” between “unions and people with disabilities.” To claim that the conflict involves all “people with disabilities” is obvious question-begging; what Luterman means is those, like herself, who implicitly or explicitly claim to speak on behalf of the ever-elusive “disability community.” It’s implied that the “community” of persons with disabilities are in unanimous agreement with the ideology of Luterman and other such activists, who, says Jonathan Walen, “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.”

She begins her piece by claiming that people with (emphasis mine) “Down syndrome, autism, cerebral palsy and other conditions are often housed at places like the Polk Center.” Most “often,” however, such people are not “housed at places like the Polk Center.” As of fiscal year 2016, 92 percent of waiver-eligible Medicaid recipients were receiving services in “Home-and-Community-Based Settings” (HCBS) as opposed to intermediate care facilities (ICFs), or “institutions,” as Luterman calls them. The 8 percent who remain in these facilities typically are medically fragile or have extraordinary behavioral challenges. More than nine in ten waiver-eligible persons with a disability are living in a setting that Luterman would ostensibly prefer — assuming that we are obliged to care what residential setting she “prefers” on others’ behalf — but she finds even this proportion insufficient.

Luterman’s argument relies in large part on a putative chasm between the interests of institutional employees, on one hand, and the residents who live there, on the other. She argues that a group of facility workers carrying signs at a rally that said “They don’t want to leave! Ask them!” is “a demonstration of solidarity with their fellow workers — but not with people with disabilities.” But the signs are correct. A 2011 survey approved by the state’s Protection and Advocacy Organization — hardly a pro-institution advocacy group — found that 271 of the 307 state-center residents capable of responding indicated to proctors that they wanted to stay at the centers. Some came to the hearings in Harrisburg and, to the degree that they were able, demonstrated their preference to remain at Polk and White Haven. Those residents who want to leave — who weren’t forensically committed — were and are given the opportunity to do so, in consultation with their families. Those remaining want to remain, and the workers who care for them were demonstrating much more “solidarity” with those residents than Luterman might care to imagine.

Luterman also cites “national trends” against congregated care for those with disabilities to justify the closure of the two centers. Citing national trends — ones that are, in large part, the making of activists like herself — is a common line of argument deployed by activists to effectuate their deinstitutionalization agenda. First, activists seek to prohibit new admissions to public ICFs, which, when successful, sets in motion a predictable series of events. Censuses fall. The residents with the highest levels of need — who are also the most expensive to care for —  remain behind, unable to find similar services in the “community.” Fixed costs for the facility remain the same while per capita costs skyrocket, as the average resident served grows more disabled and the beneficial effects of economies of scale are reversed. After a decade or so with a moribund census, the same activists who passed legislation barring new admissions to public ICFs (which in turn forced ICF-level cases into inappropriate settings) return to the legislature, this time seeking to close an ICF outright against the will of guardians and individuals served there. They cite the declining population and increasing costs of operating said facility, both of which occurred not simply by changing family preferences, as advocates often claim, but through a series of deliberate policy decisions meant to create a death spiral that had closure as its natural conclusion.

Then, as here, activists might cite the nationwide decline in ICF censuses — declines that, again, are of the activists’ creation — as a “national trend” that apparently confers moral approbation on the decision to close yet another state ICF. Luterman says as much, prophesying that the percentage of the disability population in ICFs “will shrink as states continue to move toward home- and community-based care,” as if those declines appeared out of thin air, and were not the result of deliberate actions on a state level to restrict admissions to state facilities.

Citing the existence of a (partially overstated) “national trend” does not, in any case, amount to an argument. That many states have downsized their institutional populations is not an argument to close all such facilities; that 13 states and the District of Columbia have decided to close all their state facilities for those with intellectual disabilities does not impel the remaining 37 states to do so, and thereby subject themselves to increases in mortality rates, chronic lack of oversight, or a systemic dearth of intensive-care services for those with acute behavioral issues that occurs when the safety net of institutional services is eliminated or severely diminished.

Polk and White Haven state centers are critical links in the broader continuum of care — from community-based independent apartments to residential campuses — that reflect the diversity of needs within the disability population. It would be nice if Ms. Luterman would consider the plight of those with disabilities who — like the man at Polk Center who wheels himself daily to Polk’s administrative building and cries in fear of leaving his home — are unable to pen lucid op-eds in the Washington Post expressing their opinions and preferences.

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