Institutions must be an option for those with severe handicaps.
Editor’s note: This article is adapted from one that won an essay contest run by the William F. Buckley, Jr. Program at Yale.
As conservatives, we rightly hold dear the American promise of liberty. One wonders what that sacred promise means for a person with profound intellectual or developmental disabilities.
I grew up down the road from a 1,600-acre institution for the disabled. Its campus always charmed me, with its elegant architectural façades and sprawling bucolic landscapes — it was, in some ways, an encapsulation of the serene rural quiet that I loved about my hometown of Southbury, Conn. But it wasn’t until I began volunteering at the Southbury Training School that I really saw the way that so-called advocates, who claimed with moral certainty to speak on behalf of the entire population of persons with disabilities, had so fundamentally warped the debate over disability policy.
In Connecticut, over 2,000 individuals with developmental disabilities are on a waiting list for care. And yet, at advocates’ insistence, the Southbury Training School has been barred from accepting new residents for more than 30 years. That arbitrary prohibition should be lifted.
This proposal is not particularly unpopular, impractical, or even all that radical, in truth. But it is quite unfashionable — fashionable people, who hold all of the socially prescribed positions on domestic politics, unilaterally despise it. But as conservatives we are, if nothing else, comfortable with being unfashionable.
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First, a sense of the problem: Imagine a six-foot, 215-pound, 35-year-old man with the mental acumen of a two-year-old child. If left to his own devices, he would attempt to swallow inedible objects, and lashes out violently at those caring for him. For some individuals like this in Connecticut, it is their parents, often aging and increasingly hopeless, who are forced to care for them.
Such an arrangement is necessitated, in part, because of the “Inclusion” movement. “Inclusion” is one of those Orwellian progressive euphemisms phrased in such a way as to preclude debate. If you do oppose their purely dogmatic assertions, it’s because you want people with disabilities to be “warehoused” or some other derivative slander of your motives. It’s a disgusting way to debate public policy, but it has been awfully effective in silencing their opposition.
The Inclusion movement claims that every person with a disability can function “in the community.” While this is certainly true for many people with disabilities, common sense dictates that not every disabled person is capable of bagging groceries all day, coming home, and living in a residential neighborhood. Some people have levels of need so high that that they require a more structured and intense care environment. Yet crusaders in the Inclusion movement have rebranded this common sense as verboten, an unspeakable apothegm that could crush the glimmer of hope for a world without institutions.
As Bill Buckley once said, “Idealism is fine, but as it approaches reality, the costs become prohibitive.” What’s more, idealists in the world of disability policy have left a trail of palpable victims, whose voices have been drowned out by a sea of do-gooders who shut out lived experience in favor of a set of attractive platitudes.
Consider the frustrated experience of Jill Barker, whose 40-year-old son has suffered from profound developmental disabilities for all of his life. She wrote in Nonprofit Quarterly:
Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child?
In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference. Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings.
The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized.
When over 2,000 adults with disabilities languish on a waiting list, reopening the Southbury Training School to new admissions hardly seems radical. This would require overturning the 1986 state law that prevents the facility from accepting new residents — a logistically easy but politically difficult undertaking. Additionally, using existing campus infrastructure as a health resource center for persons with developmental disabilities in Connecticut, whether they live at Southbury or in the community, would offset the massive costs of searching for specialists in the community health system. This would give families a choice that is properly theirs — to send their adult children wherever they’d like, based on the profundity of the patient’s disability.
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Starting in the early 1900s, most of Connecticut’s disabled residents lived in institutions, in either state training schools or regional centers that served much the same function. The Southbury Training School was considered to be a model for care of this sort, with its decentralized residential approach. But like every facility, Southbury struggled with overcrowding and understaffing, starting in the middle of the last century. The Mansfield Training School, along with some of the regional centers, closed in the late 20th century as “community living” (small, private facilities for groups of about four or five people) became an alternative to the institutional model.
This model was efficacious for some, primarily higher-functioning clients who were physically and emotionally able to handle community living. But such a move was not for everyone, and not everyone left institutional settings.
The 1970s yielded revelations of the hellish conditions at Willowbrook State School in New York City and changed perceptions of the congregate-care model.
The 1970s yielded revelations of the hellish conditions at Willowbrook State School in New York City and changed perceptions of the congregate-care model. Amid the moral panic that followed, the federal government in 1984 sued Southbury over staff shortages and conditions. Connecticut closed Southbury to new admissions two years later, and in 1987 Willowbrook was (rightfully) closed entirely.
Southbury was found to be state-of-the-art and was released from federal oversight in 2006. However, while it once housed more than 2,000 residents, it has been reduced to a patient population of just below 220, and those who remain are some of the most profoundly handicapped of Connecticut’s intellectually and developmentally disabled residents. The facility’s sharp decline in population has come in large part via a 1996 lawsuit’s de facto insistence that patients, regardless of their level of need, be belligerently pressured to leave Southbury, in spite of the well-noted wishes of families and patients.
Patients who have regretted the move are not allowed back in. So much for compassion.
Civil-rights crusaders feigning fiscal conservatism often point to the higher per-patient costs at Southbury as a legitimate reason not to give families choice in where they send their disabled relatives. Inclusion advocates have created a cabal of euphemisms repeated so often that their underlying merits are never plainly considered: “Institutions,” they claim, cost more than “community living” — always. Every person living in an institution could be better cared for in the community. And you’re a bigot if you question that.
But these cost discrepancies are due, in large part, to the different types of patients who use these different types of care. As higher-functioning individuals moved from Southbury into more integrated settings, the ones who stayed behind in congregate-care facilities had more profound disabilities and therefore higher costs. These individuals will cost more anywhere they go, and reopening the facility to new admissions would decrease per-patient costs by taking advantage of Southbury’s most profound structural advantage: economies of scale. Also, of the current patient population, some have violent or deviant behaviors that require high levels of monitoring and caution — a subset of the disabled population that group homes are incapable of fully caring for, regardless of the tenacity with which advocates proclaim it to be so.
Do state union excesses, which drive some of Southbury’s expenses, need to be reformed? Desperately — but even given high labor costs, state-commissioned studies in both 2002 and 2010 found no significant cost savings in closing Southbury given the current case mix.
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Those opposing institutional care often cite the Olmstead v. L.C. Supreme Court decision. But consider the following excerpts from the ruling:
“Each disabled person is entitled to treatment in the most integrated setting possible for that person recognizing that . . . that setting may be in an institution.”
“Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times — perhaps in the short run, perhaps in the long run — for the risks and exposure of . . . community settings; for these persons, institutional settings are needed and must remain available.”
“For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution . . . is as much liberty as they ever will know.”
The Olmstead decision has been hijacked by the Inclusion folks; they deem it a mandate to end institutionalization entirely. But what Olmstead actually does is call for a spectrum of care to be offered to families with disabled relatives — a choice that families themselves ought to be able to make without the hectoring of their self-appointed moral betters at federally funded advocacy groups.
The radicals in this debate aren’t the ones looking to reopen admissions at Southbury.
If you look around the country, it is often Republicans and not Democrats opposing deinstitutionalization. This odd political marriage, of right-wingers and the residents of state facilities, is a derivative of the idea of Chesterton’s fence — if you stumble upon a fence in the middle of the woods, there’s probably a good reason for its existence that you ought to consider before tearing it down in a moral haste. Burkean notions of tradition, of the inherent value of “the way we’ve done things,” certainly flavors conservative support of institutional settings.
The Southbury Training School today is a wonderful place — warm, caring staff engage with clients on the farm, the on-campus thrift shop, and more. My experience volunteering with these clients and staff has opened my eyes to the following: The radicals in this debate aren’t the ones looking to reopen admissions at Southbury. The radicals are the ones championing the use of a different model to a degree that Connecticut has never tried.
I can only hope that families, not activists, get to decide the best place for their children. For many, that will be “in the community.” And that’s fine. But for some, it would be Southbury — and who are we to deny them?