ICF Advocates for Choice
Choice without Boundaries
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Stop Blowing Civil Rights Smoke in My Eyes
Our Second Blog Entry
August 7, 2020
The words “Willowbrook” and “Pennhurst” conjure images of horror in the public mind – visions of naked, vulnerable, disabled people wallowing in their own filth, abused and neglected in large, cavernous warehouses whose very names have become bywords for suffering and human misery. Lest we forget their manifold horrors, we are periodically reminded of Willowbrook and Pennhurst by scolding articles and shocking documentaries, ostensibly meant to ensure that their atrocities are never repeated again. If that were indeed the purpose of the exercise, it would be a good and noble one; but there is a darker agenda at work, hidden from public view, one that – should it succeed –will result in human suffering on an unimaginable scale.
My severely autistic son had his own horror show, and it began when he aged out of the educational system. He suffered a broken eye socket, was given stitches in the back of his head, was exposed to pornography, was afraid to take off his clothes to shower, was deprived of clean towels and even a bar of soap, and slept on a bare mattress in his dirty street clothes and shoes. He was toxically overmedicated, the side effects of which included the development of Parkinsonian tremors in his hands, disfiguring female breasts, and psychotic breaks with reality from powerful psychotropics administered to him against his will. Did this litany of horrors happen to my son in an “institution?” No. All of that suffering took place in the lauded substitute for the “institution” – the privatized, so-called “Home- and Community-Based Setting” waiver services. In his time in the “community,” my son was discharged from six different community group homes administered by three different state providers, who offloaded him into five different psychiatric facilities over the course of four years. His life was a living, ceaseless hell until he was rescued by a dreaded “institution”, the Intermediate Care Facility that finally affords him quality of life and freedom from abuse.
For the last 40 years, there has been a relentless and largely successful campaign to demonize the word “institution,” and ensure that everyone in the world of disability policy mouths the same, simplistic mantra: “Institutions bad, ‘Community’ good.” These activists use the word “institution” to paint all forms of disability service – except, of course, the model of care provided by the one-size-fits-all Home and Community-Based Settings (HCBS) waiver – with that same broad brush, in order to condemn and eliminate those models of disability-care that they don’t like. The victims of this propaganda campaign are those with severe autism and profound medical challenges, to say nothing of their desperate and beleaguered families who are left without recourse when their children’s care becomes too difficult to manage.
What is the activists’ endgame? The complete and total “deinstitutionalization” of disability services, and the elimination of all out-of-home care for those with developmental disabilities. This assault on structured care for the disabled is being carried out in just the same manner as was the elimination of many congregate-psychiatric setttings for the mentally ill, a policy whose failures are well known to all – homelessness, incarceration, and an endless, traumatizing cycle of suffering for the most severely mentally ill.
Deinstitutionalization of the mentally ill was a national disgrace, a pursuit of the so-called “Right to Fail” that, in practice, meant “dying with your rights on.”
Willowbrook and Pennhurst were not always “Willowbrook” and “Pennhurst.” They became such “snake pits” as a result of overcrowding, underfunding, mismanagement, and understaffing. Residents were accepted to these facilities who didn’t require intensive care, akin to crowding a cancer ward with flu patients. At one point in Willowbrook’s history, there were 40 residents per one staff member.
The Intermediate Care Facility – the model of care my son relies on – was created as a modern disability-service model, meant to replace the “snake-pit” institution. ICFs are heavily regulated by the Centers for Medicare and Medicaid Services (CMS), under Appendix J of the CMS State Operating Manual, a 257-page compendium of rigorous quality standards that an ICF must maintain to receive its legal certification.
ICFs are the superior choice for many of the most profoundly disabled members of our society. The sprawling campuses, open spaces, and on-site clinical staff at an ICF – the array of doctors, nurses, behaviorists, psychologists, psychiatrists, and therapists – have few parallels in the so-called “community.” Campus amenities like pools, camping grounds, and gymnasiums offer safe and therapeutic havens for those with severe autism and medically fragile persons with intellectual disabilities. Additionally, ICF’s are required to provide “active treatment,” an interdisciplinary-mode of care focused on training, therapy and medical care; there is no such requirement for “community-based” services. From highly trained and supervised staff to nurses, supervisors, and clinicians, the ICF has a reservoir of medical expertise that many “community” services lack. When it is open to admissions and filled to appropriate capacity, the ICF takes advantage of economies of scale, allowing the costs associated with caring for the most severely disabled to be shared among a larger pool of residents.
But there has been a relentless push for deinstitutionalization by lobbyists and activists, who raise the specter of Willowbrook and Pennhurst whenever questioned about the merits of their goals. Many of these activists are associated with nonprofit groups that own community-based group homes, and as such have a monetary interest in eliminating the competing ICF model of care. As a result of their activism, 92 out of 100 waiver-eligible individuals with disabilities who receive services are receiving those services in a sprawling network of family and group homes in what is called the “community” system. By closing state ICFs to admissions – or eliminating them altogether – activists have doomed many disabled individuals to receive no services at all. At least 12,455 people in Pennsylvania – where admissions are effectively closed to so-called state institutions – are on the waiting list for services.
There is no federal Appendix J for Home and Community-based Waiver services (HCBS), the service model the de-institutionalization crusaders substitute for the “institution”. This lack of oversight has real, human consequences. The “Home- and Community-Based” waiver service system is rife with abuse, neglect, and corruption. Dr. David Mandell ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, notes that today’s “media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings; Mandell notes that these settings “often are not up for the task of caring for individuals with more profound impairments.”
In January 2018, a joint report from the Department of Health and Human Services, the Office of Inspector General, the Administration for Community Living, and the Office for Civil Rights issued a report entitled “Ensuring Beneficiary Safety in Group Homes through State Implementation of Comprehensive Compliance Oversight.” The “OIG found that health and
safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries [sic] at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.” But such “systemic” problems in the “community” system do not matter to many advocates; indeed, today’s ICFs are made to pay for the sins of institutional Pennhurst from 40 years ago, but the “Community” system is immune to criticism for its serious systemic shortcomings today.
The closure of our ICF’s are viewed as victories in the fight for ‘disability liberation’ by those who claim to advocate on our loved ones’ behalf. They see themselves as “civil rights heroes,” freeing the disabled from “institutions,” loosing our loved ones from their putative oppression. Families see these advocates as callous and cruel, eliminating appropriate medical care and hard-won quality of life for our loved ones, replacing it with a horror show of inadequate, substandard, hard-to-get, unprofessional assistance and a labyrinthian system of social-services that is impossible to navigate. They insist, as the journalist John Hirschauer once put it, upon “play-acting as Martin Luther King in the sandbox of other peoples’ lives.”
So much of the passion and energy from the deinstitutionalization crusaders comes from their strange belief that disabled persons today are being rounded up and forced into institutions en masse. At many state ICFs, admissions are closed or severely restricted. Parents often face near-insurmountable legal challenges if they desire to place their loved one in a state-run ICF; it took us three years and a protracted court battle against the Commonwealth to finally place our son in a state-run ICF. This damaging mythology that disabled persons face the omnipresent specter of forcible institutionalization is false, and is being used by disability-rights advocates to scare the public and force further reductions in institutional capacity. And it is not just “state institutions” that are imperiled by this ideological crusade; ultimately, deinstitutionalization crusaders want to eliminate even the “community” group-homes that they once celebrated, as advocates refer to many group homes as “mini-institutions.”
Here is what should really “scare” the public. My son – with his violent and erratic behavioral challenges – is not an anomaly, and he is not alone. According to the National Alliance on Mental Illness, 500,000 autistic adults will be coming of age in the next five to seven years, and between 10% and 50% of those adults will have the similar impairments and behavioral challenges to my son. If deinstitutionalization and the elimination of appropriate residential-care facilities continues unabated, there will be a catastrophic shortage of housing and effective services for these adults. With the CDC recording an autism birthrate of 1 in 54, this is a pressing issue at this time in our nation’s history. Young adults with the most severe challenges will have nowhere to go, save the revolving door of failed “community” placements, retrofitted hospital emergency rooms, psychiatric wards, and jail cells, all at great cost to taxpayers, families and traumatized vulnerable young autistic adults.
For all of the damage wrought on “congregate care settings,” the coronavirus pandemic has laid bare the soft underbelly and systemic shortcomings of the “community-based” service-system.
There were always severe shortages of direct-service personnel providing hands-on care in the HCBS system due to the low pay, low professional mobility, and a lack of on-site assistance for medical and behavioral crises, to say nothing of employees’ inability to collectively bargain. With the advent of the coronavirus pandemic, personnel shortages in “community” settings are at an all-time high.
In Pennsylvania, where my son and I live, to date, there have only been three cases of asymptomatic coronavirus infection in all four of the State Developmental Centers, or “state institutions,” in which each of the nearly 700 residents have been tested. Compare that to the “community” disability service system in which, as of June 2, there were 801 confirmed cases of residents with coronavirus, and 113 coronavirus deaths. Why the disparity? As Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs, indicated, for disabled persons living in a setting with roommates and staff like a group home, they have no place to go if and when the virus enters the premises. With ICFs, by contrast, the spacious campuses and multiple buildings on grounds provide ample opportunity to isolate residents from the virus. Additionally, there is a central location to test incoming staff, and medical personnel available on campus to monitor symptoms.
In sum, my son and others like him are lacking a civil right – like a child with cancer has the right to appropriate medical treatment, my son and other developmentally disabled adults like him should have a vital civil right, namely, the right to appropriate long-term care with sufficient medical assistance and supervision like the care found in the ICFs. The fact that there were tragedies at Pennhurst and Willowbrook a half-century ago should not deprive him of that right.
Mother/Co-guardian of Joey, White Haven State Center, a public ICF
KIIDS – Keeping Individuals with Intellectual Disabilities Safe
Email: [email protected]
Our First Blog Entry
September 26, 2019
Pennsylvania's Facility Closures Hurt the Mentally Disabled
By JOHN HIRSCHAUER
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 Whalen, “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.
JOHN HIRSCHAUER is a William F. Buckley Jr. Fellow in Political Journalism at National Review Institute. and a Journalist for RealClearPolitics