Crisis and revolution in developmental disabilities: The dilemma of community based services.

Abstract

A state of crisis exists in the community-based system that serves individuals with a developmental disability and accompanying behavioral or psychiatric disorders (i.e. a dual diagnosis). Staff and parental competence, morale and quality of life issues for consumers who present with the most serious symptornatology are all variables that have contributed to the current state of affairs. The mechanism for paradigm change is one that relies on crisis and systemic pressure to confront and ultimately alter long standing scientific theories. The current essay examines the challenges to change and offers recommendations for better serving those individuals who present with the most daunting behavioral profiles in community residential environments. ********** There is a crisis in the system that provides services for persons with developmental disabilities and severe behavioral disorders and/or psychiatric diagnoses. People with such a dual diagnosis (Reiss, 1982, 1985) are joining communities at an ever increasing pace, placing unrelenting stress on a community based services system originally designed to serve a very different population. The crisis is chronic, debilitating and one that has been intervention refractory for a very long time. The emergence of scientific discoveries is known as the process of paradigm shift. Kuhn (1970) states, Discovery commences with the awareness of an anomaly, i.e., the recognition that nature has somehow violated the paradigm-induced expectations that govern normal science. It continues with a more or less extended exploration of the area of the anomaly. And it closes only when the paradigm theory has been adjusted so that the anomalous has become the expected. The new fact, then causes scientists to see nature in a different way. (p.53). This process would seem to make a change in paradigm, if not an easy task, at least one governed by specific guidelines. Kuhn goes on to point out that crisis is a necessary precondition for change and must include a scenario in which anomalies to accepted paradigms become frequent and challenge the very foundation of existing structures. Nirje's (1969) treatise on normalization introduced so eloquently to us by Wolfensberger (1972) and later transformed into his social role valorization theory (Wolfensberger, 1983), was one of the earliest descriptions of this crisis in the field of developmental disabilities. Normalization's biggest challenge involves the struggle to effectively serve some of the most fragile individuals that the system has to offer in typical community settings. Individuals who may present with socially unacceptable and even dangerous behaviors and who are living, working and attending school with non-disabled community members. This state of affairs seems to clearly meet the criteria set forth by Kuhn in which anomalies to an accepted paradigm become frequent enough to force change. Scientists, however, have not typically been ready to renounce comfortable paradigms that have operated successfully for some time and neither have developmental disability professionals. Paradigm shift is a major undertaking that occurs only when a changing professional zeitgeist operates as the driving force behind ideological change. Holburn (2001) provides us with a nice lineage of the development of such a zeitgeist in the field of developmental disabilities that has been labeled in many ways, but ultimately rests with the dilemma of how to promote a sense of inclusion for these individuals with complex clinical profiles. Braddock, Hemp, Parrish, and Westrich (1998) and Bruininks, Meyers, Sigford, and Lakin (1981) present a historical look at issues that are related to successful integration of individuals with developmental disabilities into community residential programs. They list variables such as quality of supervision; supportive family, friends and neighbors; acceptance of individuals' behaviors by staff and community; and the level of competence demonstrated by staff charged with their care as critical in the development of the integration process. …