Deinstitutionalization
of People with Mental Retardation and Developmental Disabilities in the United
States:
Was This Good Social Policy?
by: James W. Conroy, Ph.D.
1) Research Shows Multiple Benefits of Community Placement: Twenty-five years of developmental disabilities research literature on movement from institutional to community settings indicates that, on the average, people experience major enhancements in dozens of quality of life indicators. The literature is remarkably consistent in this area. A handful of recent reports on mathematical models of mortality, led by one researcher in California (Strauss), have been shown by Lakin (1998) to be founded on erroneous data. Claims of higher risk of mortality in community living are scientifically unfounded, and are strongly contradicted by other published studies. No other researchers have replicated the Strauss et al. findings. The sum total of rigorous studies over a 25 year period provides conclusive evidence of the superiority of community living. In 1997 and 1998, my staff individually visited 1,125 people of the more than 2,300 people who moved out of California’s Developmental Centers and moved to community homes under the terms of the Coffelt settlement. We will show some of the results of that body of work, which resulted in 17 formal public reports. Their qualities of life are enhanced, they are more independent, they display less challenging behavior, their homes are more pleasant, and their families believe that they are far “better off” than they were in developmental centers.
2) Deinstitutionalization in Developmental Disabilities Must be Clearly Differentiated from Deinstitutionalization in the Mental Health Field: The deinstitutionalization of nearly 100,000 American citizens with developmental disabilities has been highly successful. This is a very different experience from the nation’s failure to support people with mental illness who have left mental health institutions.
3) Family Attitudes Change Dramatically: Families (parents, siblings, other relatives, guardians, next friends) of people living in institutions overwhelmingly support the continued existence of those institutions, and the continued placement of their relatives in them. However, in cases in which people have moved to the community (either over family objections, or after the family’s objections have been accorded a formal hearing and they have agreed to trial placements), the families’ attitudes change dramatically toward acceptance and support of community living. Even the most vocal opponents of community placement have become ardent supporters of community living once it has been experienced. Recent work in Oklahoma has shown the most dramatic changes in family opinions yet documented (Conroy, 1999). But the same changes have occurred among California’s families, as well (Conroy & Seiders, 1998).
4) The Theory of the “Must Stay” Group is Not Supported: The classic four reasons given for keeping people in large segregated settings (severe retardation, challenging behavior, medical fragility, and advanced age) have been convincingly discredited by carefully controlled studies of community placement, by the evidence from total closures during the past 25 years, by the fact that 10 states are now entirely free of public institutions as an option, and by the pattern of recent placements out of developmental centers in California.
5)
Community Support Systems are More Cost Effective than Institutional
Systems: All studies published
thus far are consistent. Community
service models are less costly than institutional models.
It must be recognized, however, that this is because staff salaries and
benefits are significantly lower in community service systems than in
institutional ones. Hence, the most
appropriate conclusion is that community services do cost less, but they should
not. Moreover, community services
are able to obtain Federal reimbursement at the same rate as developmental
centers in California.
6) The Research Findings Are Remarkably Consistent: The research on this question is very unusual. It is consistent and compelling. The only exception of which I am aware is the mortality studies performed by Strauss, which has been discredited by Lakin, and repudiated by his own colleagues and by his mentor.
7) Community Living is Not Without Problems, and Requires Protections