Deinstitutionalization: The Theory of the "Must Stay" Group is Not Supported

Revised: March 05, 2003

The classic four reasons given for keeping people in large segregated settings have been almost completely discredited by carefully controlled studies of community placement, by the evidence from total closures during the past 15 years, and by the pattern of recent placements out of Southbury itself. The four reasons have been:

  1. People with limited adaptive behavior skills, such as those labeled "severe" or "profound," cannot benefit from community homes.
  2. People who exhibit severe challenging behaviors when living in institutional settings cannot be handled in community settings.
  3. People with extraordinary medical needs can only be properly cared for in large, centralized, hospital-like settings with doctors and nurses on staff.
  4. People who are of advanced years, and have lived in a given institution for essentially their entire lives, do not want any other kind of home, would not benefit from a new home because of their age, and should basically be left where they are.

All four of these rationales are called into serious question by the research, and even more strongly by the total-closure data. Pennhurst, Mansfield, Laconia, Hissom, and other institutions have been closed without moving people to other institutions. In these and other closures, community services systems have been created that provide excellent supports for people of all kinds. Today, 40% of America’s institutions have been closed, and nearly all of the rest have been downsized. There are now five states that have completely eliminated institutions as an option.

In these instances, everyone has moved to the community. This includes people who are "low functioning," who in my research tend to benefit the most in some important ways. When people who are labeled severely or profoundly retarded move into family-like community settings, they show even greater gains, proportionally, in adaptive behavior than persons labeled mildly and moderately retarded. No support exists for the proposition that some people are "too low functioning" to succeed in the community. Empirical evidence is directly to the contrary (Conroy & Bradley, 1985; Stull, Conroy, & Lemanowicz, 1990). In fact, the gains made by persons with severe and profound disabilities upon moving to small community homes from large institutions are initially rapid and immediate and continue over time.

The figures for institutional populations nationwide show that roughly 85% of institutional residents are labeled severely or profoundly retarded (Amado, Lakin, & Menke, 1990). In New Hampshire, the Laconia State School closed in 1990, and 78% of its population was labeled severely or profoundly retarded. Pennhurst is closed, and nearly all of its residents are in community settings, yet 86% of its population was labeled severely or profoundly retarded. The overwhelming evidence supports the inference that level of disability does not preclude a person from experiencing benefits from moving from a large, group-oriented "facility" to a small, individual-oriented "home." Of the 373 people my team tracked out of Mansfield Training School during our study, 82% were labeled severely or profound retarded.

The research findings are conclusive, and form the basis for my opinion in this regard: level of disability does not provide a rational basis for keeping anyone in a large congregate care setting.

There is also a data base for rejecting the second rationale for continued institutionalization. The evidence is based on the experiences of people who displayed very serious challenging behaviors while living in the institution, and continued to do so for weeks, months, or years in community settings, but who now, removed from unnecessary restrictions and/or deprivation and/or abuse, have radically changed the way they act toward themselves and others. We know that, on the average, community movement will tend to reduce challenging behaviors. But this facet of the argument is aimed at the extreme cases, those who appear to present a danger to self and/or others -- people with "severe reputations" (Smull, 1995).

Common sense and concern for the safety of the community must, in theory, lead to defining certain kinds of behaviors that should not be "risked" even in a 24 hour supervision situation in the community. Serious criminal behaviors that could harm others would certainly provide a rational cause for considering non-integrated service settings. Although even such cases have been successfully supported in community settings (Smull, 1995), certain risks should not be taken until such time as a service provider is demonstrably able to provide acceptable levels of safety.

The third "must stay" group, people with urgent medical needs, have clearly been served well in community based settings. Many such people received community homes and supports in the Mansfield deinstitutionalization. Among the 957 people my team visited in 1990 in their community homes, 67 were described as "Would not survive without 24 hour medical personnel," or "Has life-threatening condition that requires rapid access to medical care." These 67 people were doing quite well in their community homes at that time. It would be of great interest to visit them today, to see how their health has changed or not changed after 7 to 10 years in community living.

More recently, I have witnessed what I perceive to be extremely high quality and medically safe community homes in Oklahoma (August 1995), for people with tracheotomies, ventilator assistance, and non-oral feeding methods. Many of the Hissom class members in Oklahoma have very serious medical needs. These are being met in small community based supported living situations. I believe these people are receiving more individualized and more humane support than before, by a wide margin. People with such extraordinary challenges benefit even more than others from individual, one to one attention, whether it is medical, social, behavioral, or friendship. I do not believe that health care on a "ward" or any large unit can possibly compare to the quality provided in these individually designed supported living situations. There are videotapes of high intensity health care settings available through the Panel of Monitors appointed by Judge James Ellison.

The final rationale for keeping people in institutional settings is advanced age and the notion that the institution has become "home" for many people. However, I also know as a factual matter that people over 80 years of age have moved out of institutions within my own research studies, and have adapted and thrived in new community homes. Many of those who can communicate have reported a major change from fear of the unknown (often exacerbated by well-meaning institutional staff) to delight with new experiences and new opportunities. Of the 957 Mansfield class members my team visited in community homes in 1990, 156 were age 60 or over, 16 of them were 80 or over, and one person was 93.

For this report, I returned to the Mansfield data base, and calculated the gains in independent functioning experienced by younger and older "Movers." For the people who moved from congregate care to community settings between 1985 and 1990, the average gain on the 100 point "adaptive behavior scale," our measure of independent functioning, was 4.1 points. For those under 60, the average gain was 3.9, while for those 60 and over, the average gain was 4.7 points. The older Movers thus actually benefited more in this outcome dimension than the younger Movers.

Finally, however, society must decide what is the right thing to do when a person has spent a lifetime in one setting, has been shown several new options, and continues to make an informed judgment that living in a large segregated setting is what he/she wants. It does seem abundantly clear, however, that that person’s parents and relatives must not be permitted to unilaterally make such a decision. If the person cannot speak, then a person centered planning team is the only correct way to approach the future. Relatives, if given community veto power, would have prevented nearly all of the extraordinary benefits that have accrued to over 100,000 Americans in the past 30 years, primarily because of fear of the unknown. No single party can be given veto power over something that has so clearly benefited the vast majority of people who have experienced it.

The experience of deinstitutionalization of people with developmental disabilities demonstrates that it is possible to place all residents of a state institution into small, integrated residential settings in the community. Deinstitutionalization can be accomplished without adverse “relocation” effects upon consumers. When placements are made deliberately and with the involvement of families and consumers in the process, there is no evidence of “relocation trauma,” that might produce increased mortality and morbidity, after community placement (Conroy & Adler, 1995). Moreover, community placements have consistently been shown to be cost-effective. My opinion is therefore that the four classic reasons for keeping people in large, segregated, isolated, institutional settings cannot be supported by the facts.