Deinstitutionalization:  Community Living is Not Without Problems,

and Requires Protections

Revised: March 05, 2003 .

            It is clear that the overwhelming majority of people can be expected to have very positive experiences with community living.  Yet it must be recognized that a small proportion of people will have serious difficulties in the community.  The evidence must be examined carefully to see what proportion of people will have difficulties, what kinds of difficulties, whether we can predict which people will have difficulties, and therefore whether it is possible to prevent even those relatively infrequent difficulties.  Finally, a balanced analysis must compare the proportion of people who have difficulty in the community to the proportion of people who have difficulty in the institution.

            There are certain protections that appear to be very important for people who move from institution to community.  My colleagues and I studied these protections for many years in the Pennhurst experience, and found that the people who enjoyed these protections fared far better than their non-class-member who did not have these protections.  These special protections were:  case management requirements, a specific individualized planning process and format, and monitoring (Sokol-Kessler, Conroy, Feinstein, Lemanowicz, & McGurrin, 1983).

            These older terminologies translate readily into more modern terms:  support coordination, person-centered planning, and quality assurance.  With such protections, I believe favorable outcomes for the Southbury residents who move from institution to community will be obtained in the great majority of cases.  Moreover, for people who do experience difficulties, such protections should guarantee early detection and intervention to remedy problems.

            The importance of a quality monitoring system is not just to find out “whether the court was right” when the entire process is completed.  It is equally (and possibly more) important to be able to detect flaws during the process.  In my opinion, any Order or Settlement in the Southbury case should include a requirement for “formative evaluation” and quality monitoring to be conducted and any problems to be remedied promptly, thus ensuring quality services for class members.  This mechanism must be founded on individual outcomes and quality of life measurement.  There is no interest in this era in certifying or accrediting “programs” or “facilities.”  We have the technology and the experience necessary to cost-effectively monitor each individual’s situation and progress.

            The topic of abuse and neglect fits into the assertion that community living is not without problems.  It is often asserted that it is easier to detect and remedy abuse in a tightly controlled environment such as a developmental center.  I have never seen a shred of evidence for this contention.  In contrast, I have seen dozens of investigations, both sociological and criminal, in which Developmental Centers have been accused of generating a “culture of immunity and/or silence” in which staff can do whatever they like without fear of reprisal (see, for example, the record of undercover State Police placements on staff at Pennhurst and at Western Center).  On the other hand, abuse occurs in community settings as well.  The best question would probably be, “In which type of setting is there less abuse and neglect?”  To my knowledge, that question has never been answered satisfactorily by research, primarily because the vast majority of abuse is known to be “covered up” in institutional settings, and may also be covered up in the community.

            I do believe that the classic experiment conducted by Zimbardo and colleagues at Stanford in 1971 is relevant to the question of abuse in large, segregated settings where power is given to one group over another (Haney, Banks, & Zimbardo, 1973).  In that experiment, young male students at Stanford were specifically selected as well-adjusted and mentally healthy.  They were randomly assigned to the role of either guard or inmate in a simulated prison situation.  All participants knew that this was an experiment, and indeed, the simulated prison was constructed in the basement of the psychology building on the college campus.  Nevertheless, half of the inmates were removed from the experiment early because of serious psychological reactions including submissiveness, depression, self-doubt, and loss of hope.  The entire experiment, designed to last several weeks, was halted at 6 days because of abuse inflicted by the student “guards” upon the student “prisoners,” which was not only of a serious nature, but it was purposefully hidden from the investigators and their video cameras.

            Zimbardo concluded that, among other things, the ability to depersonalize the inmates was crucial to the guards’ ability to treat them as less than human. This phenomenon is intensified as settings become larger and larger, and is diminished in small settings.  In my opinion, in a very small setting, care “givers” simply cannot perceive care “receivers” as faceless non-individuals in a group.

            One important protection against abuse is a rigorous quality assurance system, including the following components:  (a) values-based quality assessments conducted, in part, through frequent visits to consumers by parties independent of the service provider; (b) quality enhancement, including technical assistance and training for providers; and (c) corrective remedies and sanctions where required.

            One related question that continually arises is “What is it about community living that accounts for the clearly established superiority in so many qualities of life?”  The reasons why these benefits have so consistently been observed are becoming increasingly clear.  The major reason is simply the smaller size of community homes.  I believe that the organizational and economic literatures are completely clear on the conclusion that small group size for daily work and functioning produces higher satisfaction, productivity, and efficiency.  This conclusion arises from a multitude of studies of human activity across a variety of settings.  The best summary of 100 years of this research was provided by Gooding and Wagner (1985).