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