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Community for All: Experiences in Behavior Support and Crisis Response

by K. Charlie Lakin

During the last three decades the U.S. has witnessed remarkable achievements in reducing the number of persons with intellectual and related developmental disabilities (MR/DD) residing in public institutions (Prouty & Lakin, 2000):

• Between June 1967 and June 1999 the number of persons with MR/DD residing in both state MR/DD and psychiatric institutions was reduced by 78% from 228,500 persons to 50,067.
• When deinstitutionalization was just beginning in 1969, the Master Facility Inventory of the United States showed only 10,350 people with MR/DD living in community residential settings of 15 or fewer residents; by 1999, 278,450 people with MR/DD lived in community settings.
• As a result of state commitments to provide community services to all who can benefit and to eliminate unjustifiably costly services, in the 12 years between 1988 and 1999, 116 state MR/DD institutions and MR/DD units of 16 or more residents within traditional psychiatric institutions were closed.
• Including the 33 state institution closures before 1988, by 1999 only 56% of all state institutions operating in or established after 1960 remained in operation.
• Ten states have effectively closed all state MR/DD institutions.

The most visible product of the deinstitutionalization movement in the U.S. has been the depopulation of institutions, but the most important accomplishment has been the concurrent transfer of the full range of services once available only in institutions to the communities in which people are born and prefer to live. Today the vast majority of service recipients and over two-thirds (72%) of service expenditures are in the community (Braddock et al., 2000). Most people with MR/DD who receive services today do so without ever experiencing a day of institutionalization. Indeed, it is statistically demonstrable that the primary factor in the massive depopulation of state institutions has not been the number of people discharged from state institutions, but has been the reduction in the number of people who entered state institutions. Between 1970 and 1998, annual admissions to state MR/DD institutions decreased 84% (Prouty & Lakin, 2000).

There has been a well-researched association between movement from institutional settings to community living and the acquisition of functional skills. This research makes a very strong case for community living as a powerful, albeit loosely defined, treatment model for adaptive behavior skill growth (Kim, Larson & Lakin, 1999). Studies of the association between community placement and changes in “challenging” behavior have shown much less evidence of statistical association between community placement and lower rates of challenging behavior.

The review by Kim, Larson and Lakin (1999) identified six “comparison group” studies between 1980 and 1999 that directly compared challenging behavior changes over time among persons deinstitutionalized and matched groups of people remaining in institutions and another 18 “longitudinal studies” which monitored change over time in the challenging behavior of people who moved from institutions to community settings. These studies followed thousands of subjects over periods ranging from 6 months to 84 months. Only one of these comparison group studies and five of the longitudinal studies showed statistically significant relative decreases in problem behavior among like persons moving to the community. Ten of the remaining studies showed non-significant tendencies for improved behavioral outcomes associated with community living, but six showed tendencies toward negative outcomes in behavior, and two even showed statistically significant worsening of problem behavior following movement to the community. In short, community living is not, in and of itself, an effective method for meeting the behavior support and/or crisis prevention and response needs of individuals with MR/DD.

A number of factors may be hypothesized to contribute to the lower consistency of association between “maladaptive” behavior change and movement from institutions than has been found between positive “adaptive” behavior change and movement into community settings. These range from community life being a more direct and consistent teacher of the functional skills assessed as “adaptive behavior” to the complications of psychiatric conditions in reducing “maladaptive behavior.” Whatever the explanations, it appears that community living alone is insufficient as a vehicle of behavior support and training to prevent and respond to challenging behavior. But, more importantly, the evidence is clear that institutionalization for the purposes of developing adaptive behavior and/or reducing maladaptive behavior offers no dependable (i.e., defensible) treatment benefit.

The Olmstead Decision

Most states have made substantial progress toward assuring community lives for all citizens with MR/DD, but others have much more to do. Today, the primary predictor of people’s access to opportunities and services that can support them as needed in the communities in which they live is the state and community in which they happen to reside. This relative fortune or misfortune and the essential injustice it may represent was a primary motivation of the landmark Olmstead suit.

Arguing that restrictions that derive from government’s unwillingness to respond to established benefits of community life, as identified and assured by Congress in the Americans with Disabilities Act (ADA), constituted unlawful discrimination, two individuals in Georgia used the civil rights protections under the ADA to pursue their place in the community. In June, 1999, the Supreme Court of the United States issued a ruling in Olmsted et al. vs. L.C. et al. of great significance to persons with MR/DD who are or might be institutionalized as a result of behavioral and/or psychiatric service needs.

In the ADA, Congress noted that the isolation and segregation of individuals with disabilities represented a “serious and pervasive social problem”’ because it was a form of discrimination (42 U.S.C.12101[a][2]), and that such discrimination was reflected in “outright intentional exclusion” and “relegation to lesser services, programs, activities, benefits, jobs, or other opportunities” (42 U.S.C. 12101[a][5]). Congress noted that “the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, economic self-sufficiency for such individuals” (42 U.S.C. 12101[a][8]).

The federal regulations, responding to the intent of Congress, required that a “public entity shall administer services, programs and activities in the most integrated setting appropriate to the needs of qualified persons with disabilities” (28C.F.R.35.130(d)). The Supreme Court in Olmstead considered specifically whether it was a violation of the ADA for a state to deny individuals community placement when community services were available to others, when community services were recommended for the individuals by the state’s professionals, and when community services were desired by the individuals.

The majority opinion of the Court concluded that:

The ADA both requires all public entities to refrain from discrimination and specifically identifies unjustified segregation of persons with disabilities as a from of discrimination. The identification of unjustified segregation as discrimination reflects two evident judgements. Institutional placement of persons who can handle and benefit from community setting perpetuates unwarranted assumptions that persons so isolated are incapable and unworthy of participating in community life...and institutional confinement severely diminishes individuals’ everyday life activities.

The significance of the Olmstead ruling is yet to be determined. It is likely to be most influential in states that have made the least progress in deinstitutionalization, but its implications are by no means limited to such states. It will contribute to the ongoing push to reduce institutionalization and to challenge communities to serve people who in the past have been viewed as appropriately housed in institutions.

A January, 2000, letter to State Medicaid Directors from the Departments of Health and Human Services and Justice in reference to the Olmstead decision noted that:

This decision confirms what this Administration already believes: that no one should have to live in an institution or nursing home if they can live in the community with the right support and that Olmstead challenges states to prevent and correct inappropriate institutionalization and to review intake and admission processes to assure that people with disabilities are served in the most integrated setting appropriate.

Relevance of Olmstead to Behavior Support/Crisis Response Programs

The fact the petitioners in Olmstead were persons with histories of behavioral and psychiatric diagnoses and treatment is significant. In June 1998, 165 state institutions (84.2% of 197 total) reported that 41.4% of their residents had behavior disorders requiring special staffing and 34.3% had psychiatric conditions requiring the involvement of professionals with psychiatric training. Olmstead suggests that continued reliance on institutional settings as a primary locus for specialized services for people who present behavioral challenges to community service systems will be under growing pressure. This pressure may be important. During the 1990s as state institution populations decreased 41% nationally, in the one-third of states with the slowest rates of deinstitutionalization institution populations decreased by 23%. Fifty-seven percent of all state institution residents were in that slowest one-third of states.

Continuing the designation of public or other types of institutions as “specialized” places for treating people with behavioral and psychiatric disabilities in light of the lack of demonstrated benefit to their problem behavior and the well-demonstrated detriments to their functional skill development – and now the Olmstead ruling – seems substantially threatened. Olmstead further suggests that traditional uses of larger institutions as the “safety net” for emergencies and crisis will be susceptible to challenges as less segregating community alternatives are designed and demonstrated to be effective.

The Olmstead decision, the advancing state-of-the-art in providing community services, and the accomplishments of “institution-free” states challenge all states to develop and sustain effective, community-based behavior support and crisis response services. For many states this will be difficult because a) they have focused their behavior support resources and personnel in institutions; b) they and their private contractors have often come to view these institutions as the “appropriate” places for people who present behavioral challenges; c) state and private community agencies have often developed a mutually reinforced tendency of accepting that institutions are the place to send people with challenging behavior when they are uncomfortably difficult for community agencies to serve; and d) as a result of limited involvement among states and localities in responding to highly challenging and crisis behavior in the community, many have limited technical and experiential capacity to do so.

There have been, however, a number of states and local agencies that have responded to these same challenges in developing community behavior support and crisis response programs. These lessons learned in their development include the importance of acknowledging and responding to mental health conditions among persons with MR/DD; valuing and incorporating professionals with different psychological, medical and social perspectives; attending carefully and responding seriously to what people are saying through their behavior; committing to people and their right to live in the community; and building the capacity within community organizations and families to reduce and respond to behavioral episodes without outside intervention. The experience of these states and agencies offers substantial hope that with appropriate community support all persons with intellectual and developmental disabilities, including those with serious behavioral and psychiatric conditions, can be and can remain residents of homes and neighborhoods in typical communities.

References

Braddock, D., Hemp, R., Parish, S. & Rizzolo, M. (2000). State of the State in disabilities: 2000 study summary. Chicago: University of Illinois at Chicago, Institute on Disability and Human Development.

Kim, S., Larson, S., & Lakin, K.C. (October 1999). Behavioral outcomes of deinstitutionalization of people with intellectual disabilities: A review of U.S. studies conducted between 1980 and 1999. Policy Research Brief, 10(1). Minneapolis: University of Minnesota, Research and Training Center on Community Living/Institute on Community Integration.

Prouty, R., Lakin, K.C. (Eds.) (2000). Residential services for persons with developmental disabilities: Status and trends through 1999. Minneapolis: University of Minnesota, Research and Training Center on Community Living/Institute on Community Integration.

K. Charlie Lakin is Director of the Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota, Minneapolis. He may be reached at 612/624-5005 or by e-mail at lakin001@umn.edu.

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Citation: Hanson, R., Wieseler, N., & Lakin, K. (2000). Impact: Feature Issue on Behavior Support for Crisis Prevention and Response, 14(1) [online]. Minneapolis: University of Minnesota, Institute on Community Integration. Available from http://ici.umn.edu/products/impact/141/.

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