Health Care

Pennsylvania’s Facility Closures Hurt the Mentally Disabled

(Pixabay)

Editor’s Note: The following is a transcript of the author’s testimony at a hearing held by the Pennsylvania state senate’s Health and Human Services Committee. The subject of the hearing was the closure of two state-operated institutions for severely disabled adults.

Members of the Committee:

Thank you for the opportunity to testify.

My name is John Hirschauer, and I am a journalist at National Review in Manhattan. My words today are my own.

I have covered state facilities for individuals with intellectual and developmental disabilities on a national level and have worked on behalf of one in the Connecticut state legislature. I still spend much of my weekends volunteering at that facility in my hometown, where I have received the unparalleled gift of interacting with the most profoundly impacted segment of the disability population.

I want to begin my remarks with qualifications that I think are almost too obvious to state but will state anyway, lest I be accused in their absence. First, I, and, I assume, my co-panelists, have no fundamental opposition to people choosing to live in a non-congregated, so-called “community” setting. And for those individuals who have left Polk or White Haven of their own volition, and have found their new arrangements superior, I’m thrilled for them. Sincerely.

Indeed, there is one — and only one — side here today that seeks to impose its preferences on unwitting and unwilling parties. And it’s not ours.

We are here today for one reason. We are not here because the residents of Polk and White Haven State Centers are being mistreated. We are not here because the residents of Polk and White Haven State Centers are unhappy with their care. We are not here because their families are unsatisfied with the services that their loved ones receive. We are not here because residents have been trapped there against their will, or because they are not given frequent, often desperate offers to leave. No; we are here because the Department, in tandem with a coterie of non-profits and academics, want to close down Polk and White Haven State Centers against the stated preferences of the stakeholders served there.

It’s worth pausing to reflect on the tremendous power these triune forces have over the narrative, the narrative that indelibly shapes the way we approach these proposed closures.

When state facilities close, who hosts the closure ceremonies? They do. Who warns us, microphone in hand on the lawns of shuttered facilities, not to be “nostalgic,” to think of these facilities as a blight on our history, an embarrassment to the Commonwealth? They do. Who tells, in sordid detail, of the abuses that occurred years ago, and damn every facility for the shameful events at Pennhurst State School in 1968? They do. When instances of abuse come up in group homes or “community” living arrangements, however, who tells us that we must not take that as representative or indicative of the community system at large? They do.

When the history of “disability policy” is written, who tells a story devoid of nuance, a Manichean tale where congregation is bad per se and that which they conveniently call the “community” is a good unto itself? They do.

And who is it who calls for these places to close in the first place? They do.

But what about the clients at Polk and White Haven State Centers? What about the people who have said they want to stay? What about what they think? Shouldn’t their goals and aspirations matter more than the abstract ideological goals and almost theological aspirations of those who would close their home against their will?

No matter how much families and individuals protest, and no matter how often the Department claims this decision is about “choice,” they know as well as everyone here that to abide by this decision is ultimately to affirm the Department in its fundamental, unavoidably arrogant premise: to assume it knows better than the individuals and families at Polk and White Haven State Centers what is “best” for them.

This is an ideological decision. The panel to follow will admit as much; the social science we have available seems to suggest that, for the most profoundly impacted individuals in the disability community, it might actually be slightly cheaper to deliver care in a campus setting than in isolated, dispersed care homes. Their closure literature says as much: Do not focus on cost, they say. This is about, in their words, “civil rights.”

I interviewed the Department for a story I’m writing for our publication, the transcript of which you’ll find in the documents I’ve added to my testimony. I asked them plainly: “Would closure be the right thing to do even if the overwhelming majority of residents and their loved ones opposed it?” The roundabout, implied answer? Yes.

The Department stressed to me that this decision was about “choice” for residents and their families — who, it bears remembering, are being displaced from Polk and White Haven against their will; who, it bears remembering, have been assiduously and aggressively given every offer and opportunity to leave if they no longer want to live there; who, it bears remembering, are by necessity among the most profoundly impacted members of the disability population.

The Department told me that residents could “choose” one of the state’s two remaining public ICFs [intermediate-care facilities]. I asked the Department, plainly, whether those centers would inevitably be subject to the same closure efforts.

Secretary Miller — and I must say, I appreciate her honesty — said, “I mean that’s certainly an option. That’s certainly a potential future.”

Is that, in any meaningful sense, a “choice?” No. It’s a dogmatic pronouncement; a religious faith, the sort that seeks to convert by force, to impose itself on people, regardless of their expressed preferences to the contrary. Because, indeed, if the facilities to which these residents move will be subject to this same unpopular ideological action a mere few years hence, what type of “choice” is the Department offering? It is no choice at all. To call it such insults everyone involved, supporters and opponents of this action alike. Let’s call this what it is: the preferences of the Department, the preferences of academics, the preferences of non-profits, working toward that paradisiacal day when no one will live in congregation with his peers; indeed, the preferences of people utterly removed from the actual families who live, and work, and play, and thrive at the state centers finally and completely usurping the preferences of the residents and families themselves.

They’ve closed admissions. They’ve shut down facilities by executive order. And they have the audacity to claim that the declining census, a census whose decline is of their making, is evidence that these settings are no longer necessary.

So that’s the choice you have. On the one hand, you have the preference of non-profits, who cannot abide the thought that some person with a disability, somewhere in the state of Pennsylvania, lives in brick buildings rather than at the bottom of a lonely cul de sac, the preference of those eager for a symbolic victory, desperate to add a brick from the Polk and White Haven administrative buildings to their morbid collection of trophies, who, to quote Edward 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.”

What will they say in response?

They will express a hollow sympathy for those residents at Polk and White Haven who have expressed a desire to remain, but will insist that “it can only be expected; they don’t know any other way of life.” And when they say that, I want you to think: Has this standard ever been applied in reverse? When residents in a group home, in an independent apartment, or in some alternative habilitative arrangement express satisfaction with their services, do we tell them, “It can only be expected; you don’t know any other way of life”? Do we insist that they have to, against their will and enforced by state armament, leave their current living arrangements, ones with which the have verbally expressed their satisfaction, and live in a congregate setting like White Haven or Polk State Center, and then, and only then, take them at their word that they preferred the group home in the first place?

Of course not.

Why is it that we’re told, time and again, by the various non-profits, academics, department officials, and legislators, that we need people with disabilities to be self-advocates, that we should trust their voices, and when those that can open their mouths do so, and tell us what they want, we refuse to accept it?

The panel to follow will also tell you that, while they “understand” that “change is scary,” ultimately most parents and individuals are “happy” after they move. But most of the parents and individuals are “happy” now! And if they’re not, they are given every opportunity to leave! Indeed, this canard comes up time and again. When families and individuals express their overwhelming preference for a state center, it’s demeaned as illogical risk aversion, a pathological “fear of change.” But when a majority of families and individuals subsequently express their satisfaction with private, dispersed care homes in the “community,” this is treated as prima facie sanction to close a state center! When they tell you that many families are satisfied with services in the community — and indeed, I applaud those that are — remember that, in 2011, a survey sanctioned by the Protection and Advocacy Organization — no friend to these facilities and the choices of their residents, as you know — taken in fall of 2011, found that 97.2 percent of the 1,013 families surveyed did not want to move their loved one from the state center where he or she currently lived, and of the 307 residents capable of responding, 271 said they wanted to stay.

You can’t have it both ways. Family preferences matter, or they don’t.

They’ll cite their social science conducted by their social scientists, and will cite, no doubt, their favorite study, that found, to no one’s surprise, that the residents who left the notorious Pennhurst State School fared better in the community. That comparison is valid only if you presume that Polk and White Haven are like Pennhurst, which I think is a calumny.

And speaking of calumny: The Department said this decision was done to “recognize the worth and inherent dignity of the residents at Polk and White Haven State Centers.” If you think about this remarkable statement for two seconds, you’ll realize what a backhanded indictment this is of the individuals and families who choose Polk and White Haven of their own volition. Do the over 300 families at the centers not “recognize the worth and inherent dignity” of their loved ones, or do the residents not recognize it in themselves? It’s a cheap smear dressed in the language of compassion, which, indeed, is a fairly apt description of this decision in toto.

What’s the reality? The reality is this: Some of the most profoundly and grievously impacted members of the disability community reside in the state centers. One Polk resident laments: “I’m going to kill myself.” Another goes to the administration building every day and cries, because he is being forced to move. This cannot be explained away with paternalistic explanations about how it is “all they’ve ever known.” This is their home. They live with their friends. And non-profits with a vested interest in one specific residential-service model, adhering to an ideological framework that trickles through academia, that somehow, because a person lives in congregation with his peers, and lives in a small town, his home is unfit to exist, and needs to be closed against the will of families and individuals served there. One size does not fit all. The most behaviorally and medically impacted individuals in the disability community rely on the safety net provided here. Do not take it away in haste, no matter how badly the panel to follow wants to host another closure ceremony. Thank you.

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