Reflections on Deinstitutionalization

Harold Pollack offers an acute analysis of the effect of deinstitutionalization in his latest Washington Post piece. Many commentators have pronounced the policy a blanket success or a complete failure, but as Harold points out, it’s more complex than that:

On the whole, deinstitutionalization improved the lives of millions of Americans living with intellectual and developmental disabilities (I/DD) — albeit with many exceptions. These policies allowed people to live with proper support, on a human scale, within their own communities. Second, deinstitutionalization was far less successful in serving the needs of Americans suffering from severe mental illness (SMI) — again, with many exceptions.

The vision of the community mental health movement was that institutionalized individuals would be moved to the least restrictive possible residential setting. They would prosper, and the rest of society, by having more regular contact with them, would become less fearful and stigmatizing. This happened some of the time, but as Harold argues it was more common for people I/DD. In contrast, people with SMI were more likely to end up with marginal or no housing and few needed few support services.

I agree with his analysis, but would add one gloss about the standard by which we judge the effects of deinstitutionalization on people with SMI. The heartbreaking sight of a raggedly-dressed man with schizophrenia screaming at shadows on a windy street corner is not by itself proof that deinstitutionalization was bad policy. Year after year in place after place, government audits and investigative journalism reports found widespread abuse, cruelty and inhumanity in state mental hospitals.

If we assume that the pitiable man with schizophrenia on the corner would be in a high-quality, safe, well-staffed state mental hospital if only the country hadn’t deinstitutionalized, we are inventing a past that rarely existed. Granted, it may bother the rest of us more that someone is sleeping in their own waste on the street than when the same thing happens in a back ward of an institution, but that’s because only in the former case do we have to look at such suffering, not because the person themselves is necessarily worse off.

Comments

  1. Big Dog says

    It looks at the outset that this is a sort of damned if you do, damned if you dont kind of situation but surely there are intermediate remedies which would help SMIs better cope with their life in the world. Certainly these people need to be reasonably housed. They need someone caring for them to assure that they take the proper meds and stay away from other
    drugs and alcohol which doubtless get them into deep trouble. However this is to be managed, it is sure to require a financial commitment from the federal and state governments, but in all likelyhood it would be less expensive and more humane than institutionalization. Whether the general society gives enough of a damn is the big Q.

    • Keith Humphreys says

      Big Dog wrote “would be less expensive and more humane than institutionalization”

      One of Harold’s important points is that it isn’t necessarily less expensive (see the quote by Christopher Jencks) so this comes down to a moral decision: Do we care enough to pay for the dignity and well-being of our fellow citizens or not? If we are, there are many more humane “in between” options that you and I both want. Supported employment and housing coupled with assertive community treatment is a good example.

      • J.m.g. says

        Excuse me, but how does any of that put any money into Boeing or Raytheon or Gen Dynamics or correctional corp of America’s pockets?

      • EB says

        Keith, give more detail on “supported employment and housing coupled with assertive community treatment.” How do you make these things work with SMI people who prefer not to engage with these services? In particular, with people who prefer not to be medicated?

        • Keith Humphreys says

          Following on Stein and Test’s work, ACT has become a pretty common model and it does not depend on medications. Rather, small teams work proactively with people with SMI in the community both as advocates and as coordinators of services. The general finding from clinical trials is that it raises quality of life and reduces days of psychiatric hospitalization.

          Supported employment also has RCT evidence behind it. The VA does it on a huge scale. People work in real jobs with a coach to help them. The employer gets a tax break or other financial incentive, the consumer of services has a job, a role, and some pocket money. Again, it doesn’t depend on medications.

  2. paul says

    Was there even any funding at all for the community mental health centers and small-scale supervision projects? I was under the impression that even when mental hospitals were closed entirely, that money did not move.

    Another outsider’s question: for the younger cohorts of both I/DD and SMI, how much of the support job has been transferred to the schools and their budgets? (Our local elementary school, not very big in a not very big town, has somewhere between half a dozen and a dozen PT, OT, counseling and special-education staff, even before you count the “instructional aides”.) It’s good and crucial that schools do this kind of work, but I do wonder about the budget lines.

    • EB says

      There was funding, but it did not meet the need, and it has always been subject to budget cuts along with all of the other safety net provisions that are not entitlements. On top of that, there is the issue that SMI people are (frequently) their own decision-makers, or they succeed in avoiding the decisions made by their legal guardians. And they can’t be treated without their consent except on an emergency basis. So it’s partly funding and partly the nature of the challenge. I know several people with SMI who do live in the community, successfully. And quite a number who live in the community unsuccessfully.

    • says

      I’ve had a few years working with both populations, and my experience attests pretty well to the dichotomy laid out by Harold and Keith. I worked a number of years at a group home for people with traumatic brain injuries and the least restrictive setting was generally pretty good. There was a range of care based on need, some community integration and skill-building. It was far from great, but on a shoe-string budget – and caring staff & ownership (which is *crucial*) – it did OK.

      However in my work among the severely mentally ill, the seriousness of their condition combined with low-funding (high client/staff ratio) lead to some pretty dangerous results, including homelessness, drug addiction, HIV and of course death. Least restrictive often meant people being completely abandoned.

    • Keith Humphreys says

      What happened in many locales was that most of the patients left the hospital, but it was politically impossible to close the hospital. This meant that you had a mostly empty hospital with a few patients being taken care of at enormous cost per capita AND the cost of community care on top of that for patients who used to be covered within the hospital budget.

      It’s is hard to unring bells, and two of those are (1) The building of huge bricks and mortar institutions and (2) Putting people in such institutions for a huge part of their lives until they can’t cope with life anywhere else (same problem with some long-term prisoners). This is part of why Charles Kiesler, a very respected mental health policy analyst, said that we don’t need a policy of institutionalization or de-instititionalization, but a policy of non-institutionalization. Once you build those places and put people in them, you are largely trapped between hard choices.

  3. alnval says

    Until we can get a fix on how to treat SMI patients so that their behavior is more predictable and therefore understandable to the general public, at least to a level comparable to our appreciation of who the I/DD are, I don’t think we’re going to make much progress towards integrating the SMI folks into our everyday social structures. Institutions (mental hospitals), for all their many faults, at least allowed the SMI to live in settings where they didn’t have to explain themselves. And, the public didn’t have to keep asking “What’s wrong with them?”

    That the I/DD have been able to achieve a greater level of acceptance than the SMI may also be due to the often visible and obvious nature of their disorder. Down Syndrome kids are hard to miss. Kids with auditory hallucinations, not so much.

    I also think our belief that we can apply successfully the Geel model for community recovery anywhere we like is hubris at it’s American best. If memory serves, SMI patients who are successful in integrating back into the general community are more likely to do so in the locality where they received treatment. That is, they don’t go back home but stay where they feel accepted.

    • Keith Humphreys says

      alnval wrote: “If memory serves, SMI patients who are successful in integrating back into the general community are more likely to do so in the locality where they received treatment. That is, they don’t go back home but stay where they feel accepted.”

      The other thing about being local versus two hours’ drive away in a state hospital is that families can see their loved one who has SMI more often and also support them in times of difficulty.

  4. NCG says

    Sorry to be off-topic.

    Is it just me, or is the SameFacts window opening up much larger than it used to? Or at least, I can no longer adjust it to fit my screen comfortably. Any techie people on here today?

  5. James Wimberley says

    There was a lot of good in the idea of an asylum as a safe place to go to. Not so much as a convenient place to lock up and hide your family’s problem members.

  6. Joe says

    In the late 70′s, fresh out of grad school, I worked in an institution for former Willowbrook residents. A few years later, I worked in another institution in Pennsylvania. In both cases, the people had intellectual/developmental disabilities (I/DD) and in both cases, there was a strong push to place people in the community. Since then, still working in the field, but on the outpatient side, I’ve seen all kinds of situations for folks with I/DD. I’ll tell you up front that I don’t have any numbers, but what I’m seeing worries me terribly.

    It’s easy to find data on institutions. They collected all kinds of statistics obsessively, especially toward the end, when they were struggling to justify themselves. What you don’t get is what happens to people living in the community. As Harold stated, there are large numbers of people living with elderly parents and there is no plan for taking care of them when their parents can’t. But, more than that, we don’t get stats on people with I/DD who sit at home with no more stimulation than a TV set. We don’t get the number of people with I/DD who are living in squalor in SRO’s, or who are working at a factory and being harassed miserably. We don’t get the number of adults who live with their family and are being physically abused. This is what I’ve seen, but I can’t tell you how often it happens in the overall community.

    Would returning these folks to institutions be better? Probably not. But, I don’t share Harold’s take that deinstitutionalization has been all that successful. We certainly have not been able to institute the level of community supports that are needed for adults.

    For children, the situation is much better. It used to be that a disabled child would be sent to an institution with the advice to parents to forget the child ever existed. Today, give them an autism and/or a CP diagnosis and they will have services heaped on them. And early intervention makes a tremendous difference in how far the child progresses. But even with all those services, the stresses placed on parents with a disabled child are, at times, close to unbearable.

    Then, of course, they grow up and we have nothing to do for them at all.

    • alnval says

      Well said. With the strong focus on academics plus the cuts in funding too many kids with clear cut I/DD problems are faced with no where to go once they leave school. Some of these kids could function in a competitive work setting but don’t have skill sets commensurate with the available jobs. This, of course, says nothing about the kids who do not have IEPs, but also don’t have the horsepower, interest or motivation to seek vocational training beyond 12th grade. It would be nice if more of us could build that cooperative arrangement between industry, junior colleges and high schools available in some states that allows high school to function as an entry point into the world of work.

  7. Mike says

    The facts generally support deinstitutionalization when it comes to the human rights of patients. On the other hand, the history of deinstitutionalization is that it rarely addresses the needs of patients. But legislators have tended to support deinstitutionalization anyway. Why?

    Politicians, not policy. They’re really quick to take credit for “doing the right thing” and saving a few bucks in the budget. But the same system that underfunded institutions and overlooked the need for oversight and accountability in them shows little backbone for doing anything different with deinstitutionalization.

    It’s rather sad that our enthusiasm for seductive-sounding solutions is only matching by our inability to hold politicians accountable for those with the least among us. In fact, 30+ years of budget-cutting and bi-partisan austerity enthusiasm means it doesn’t matter much what the best policy is — the politicians aren’t willing to fund it.

    • alnval says

      re “Why?” In the mid sixties in California the legislature discovered that the proponents of mental health services couldn’t demonstrate that those services were effective. At that time, evidence based decision making was not de rigueur. In those primitive days mental health proponents held generally to the belief that if some mental health services were good then more mental health services were better. Serious bean counters have always had trouble with this kind of thinking.

      This failure to be accountable also scuttled much of the Community Mental Health Act of 1963 that was going to install community mental health centers in every catchment area in the United States. Nevertheless, the passage of the Act did result in deinstitutionalization throughout the country without local governments having safety nets in place to cope with the needs of the patients who were released. As Harold points out in his op-ed legislatures were swayed by dreams of the millions to be saved much as many of us today are still swayed by the promises of pitchmen and carnival barkers. Think here of the housing bubble. In short, the credibility of mental health and its advocates took a serious hit from which we’re still trying to recover.

  8. Daniel says

    I’m not sure if someone homeless is better off than someone housed in an institution and abused. I’m not assuming that the pitiable man with schizophrenia on the corner would be in a high-quality, safe, well-staffed state mental hospital, I’m just assuming that he would be in a state mental hospital. At least there his basic needs were met. His suffering actually strikes me as worse under the homeless scenario, plus the problem is now extended to the community, which associated costs.

    • Keith Humphreys says

      Hi Daniel: I didn’t say he was necessarily better off, I said you can’t know. Shame of the States, Burton Blatt, Dorthea Dix..we have had exposes of the horrors of mental institutions every decade, followed by promises to reform, followed by more horrors. There have for example been cases of mental patients being raped and beaten for years and years by hospital staff with no possibility to appeal to police. At least on the outside, they can contact police. Also, it is easier for families to keep track of people when they are nearby and not in a far off institution — that can help ensure the person’s safety.

  9. EB says

    This is a great conversation, but would benefit from someone knowledgeable describing a system that works — probably in some other country?

    • Mike says

      Most civilized modern countries have national health care, where everyone is covered as a matter of right. That in itself addresses the continuum of care issues that are a BIG part of the problem in the US. That doesn’t solve all such problems; scandals over institutionalized patients still happen from time-to-time. But the simple fact that there is a recognition that all of society, not simply those who can afford it, are entitled to appropriate healthcare tends to uplift such conversations in most other countries beyond the “We can’t afford that…” from politicians who can never avoid voting for a tax break for their big campaign contributors.

      In the US, politicians spend most of their time on healthcare trying to either disclaim social responsibility for the most needy among us or to come up with new ways to cut funding that sustains what little public sector care exists. Under these circumstances, it’s remarkable that things aren’t much worse. However, now that it’s become clear that many Democrats, including the president, are more enthralled with austerity than public service, things are likely to only get worse.

      And no, a government project to ensure subsidization of private insurance without a serious option to control healthcare costs and only a weak, flawed initiative toward universal coverage — the Affordable Care Act — will help relatively little more than the existing decrepit healthcare delivery system. If the ACA proves unable to help the neediest among us, what does that say about it in regard to those who aren’t, but still can’t afford coverage?

      • Katja says

        Unfortunately, I don’t think that’s the answer (or all of it). Even if the politicians are willing, it still falls on families and doctors to make it work.

        For example, I know that while Germany’s politicians have made genuine attempts since the 90s to improve the situation of people with disabilities, you still can find your share of horror stories in the newspapers (both anecdotal and in the form of aggregate statistics). If you combine a family desperate to get rid of a disabled relative with a doctor who hasn’t seen a problem that a Haldol injection can’t solve, then you can blame lack of political will only so much.

        Part of the problem is that having a disability in your family can be genuinely hard and trying. For example, when I went to school in Germany, the older brother of one of my best friends there had a serious developmental disability caused by meningitis in his infancy, a disability that included him occasionally becoming violent (against things, not people). I remember when I was visiting my friend one weekend and they had to call an ambulance because he’d punched through a window in a fit of anger or frustration. And if you have to deal with something like this for year after year, it can destroy a family.

        It generally is still easier to get support for disabled children, but that’s true in America also. Children have parents who are voters and taxpayers (and the parents have friends who are voters and taxpayers also), so they have influence, and society is already set up with the assumption that children are dependents. It’s also pretty easy for other people to sympathize with them and their parents. Adults with disabilities (and disabled children will generally grow up to become adults) are too often a different story.

        Insofar as Germany is different (I don’t have any data that allows me to judge whether it’s actually better overall, and they definitely do worse in some areas), it’s probably down to differences in Germany’s well-organized non-profit sector and not necessarily a reflection of government attitudes. The major charitable organization for people with mental disabilities in Germany is the Lebenshilfe (from “Leben” = life, and “Hilfe” = help, aid, support). Like many other charities, it is an umbrella organization for hundreds of smaller organizations operating at the local and state level, allowing the umbrella organization to coordinate activities and to lobby effectively at the federal level, while keeping the member organizations independent and unconstrained by a big bureaucracy with a fair degree of flexibility and low overhead. In practice, they run daycare centers for disabled children, residences for disabled adults, and work centers.

        As far as the government is concerned, Germany (like many other European countries) has been struggling especially with the implementation of inclusive education, mandated by its 2009 accession to the UN Convention on the Rights of Persons with Disabilities (namely, article 24 (2)). Germany is lagging behind many other European countries with an inclusion rate of only 22.3% of children with special educational needs. This is not because of a lack of political will (in fact, the education ministers of the states have been pushing hard for it), but because of difficulties surrounding the actual implementation of these programs.

        In short: There are no miracle solutions and difficult problems often remain difficult even if you throw money at them. In actual fact, no matter how much of a political mess our country can be at times, America has also been a trailblazer in many areas relating to the rights of disabled persons. Sure, it could be a whole lot better (see Harold’s article, for example), but that’s not saying it’s all bad.

        • Mike says

          katja,
          I think you make important points. Nothing any government can do will solve all the burdens that families of differently-abled people and those with SMI, no matter how generous or comprehensive the support may be.

          On the other hand, those facing these issues in the United States have considerably less support in many cases. If one’s insurance is weak or non-existent, then it gets really bad. That’s millions of people with really minimal support. It is a little better for those with children, as there tends to be somewhat more funding for those programs.

          There is no safety left in what used to be a pretty bare minimum social support services structure anyway in the US. At least those nations who have national health care don’t exclude millions from its benefits, including so many who desperately need all the support they can beyond their families. You’re already several hands down in a poker game under these circumstances.

        • EB says

          Katja, does the German system serve those with SMI without resorting to institutional living (either voluntary or involuntary)? The focus of this post has been whether de-institutionalization has worked for those with SMI — has Germany closed its larger living arrangements/institutions?

          • Katja says

            EB, that’s complicated. In theory, treatment or commitment against a person’s will should only occur in extreme cases, i.e. if the person is a danger to themselves and others. The German Constitutional Court has held that the right to personal freedom includes a freedom to refuse treatment, including a “freedom to be sick”. This personal choice can only be overridden by law if the person is incapable of understanding the health risk, the health risk is grave, and no less intrusive means are available. Conversely, if somebody wishes to be committed (e.g., for fear of hurting a loved one), this choice also has to be respected. An example of relevant legislation is §1906 of the German Civil Code, which lays out the conditions for involuntary commitment for people with an appointed guardian.

            Ideally, people with SMI should be able to live as normally as possible. At the very least, this is a direct consequence of Germany’s ratification of the UN Convention on the Rights of Persons with Disabilities (specifically, article 19, “living independently and being included in the community”), to which Germany acceded in 2009.

            This is also seen as the consequence of the constitutional mandates of article 2 (freedom of the person and the personal sphere, a right upon which the state can encroach only in limited and extreme cases) and article 1 (inviolability of human dignity).

            That said, this is the theory. Reality often leaves much to be desired, in particular because there are still too many ambiguities that can be exploited. Families, guardians, the police, or doctors may bend the rules to get somebody committed, regardless of what the law technically says. Another problem is that this is legislation handled at the state level, and with 16 German states that means 16 different ways in which this can go wrong; obtaining redress through the courts can be a difficult process. For example, in 2011 the German Constitutional Court struck down a Baden Württemberg law that said, “The detainee must be informed adequately of the proposed examination or treatment. He has to tolerate those examinations and treatments that are required by the rules of medical science to investigate and treat an illness, insofar as the examinations and treatments [do not require surgery or endanger the detainee's life or health].” Just about nobody was surprised that the law was struck down as far as I know, but the case still had to wind its way through the courts. (Note that this was about medical treatment, not commitment; the man in question had already been committed quite legally as the consequence of having committed criminal offenses.)

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