Independent Living Institute


Research & evaluation

Independent Living as a state of mind

by Gerben DeJong

This study should be viewed as a point of departure for future research on IL issues. One of its central arguments has been that Independent Living offers a perspective that is unique to the analysis of disability issues and outcomes. Until now, the field of disability policy and research for physically impaired persons has been largely confined to the disabled person's limitations. The traditional emphasis on one-to-one clinical practice has tended to exclude disciplines from outside the rehabilitation professions. By broadening the problem of disability to include a wide variety of environmental variables, IL can open the field of disability policy and research to other disciplines - law, architecture, economics, and policy research.

It is persons with disabilities who must ultimately set the terms for research and debate on disability policy issues. At the core of all disability research and policy are certain assumptions about disability and its nature than can only be validated by persons with disabilities. Without this check, these basic assumptions may be adjusted, if not twisted, to suit professional self-interest, economic constraints, and pre-existing theoretical biases.

The IL movement is the clearest statement available about how disabled persons want to be viewed in American society - not as passive victims needing constant professional intervention, but as self-directed individuals seeking to remove environmental barriers that prevent their full participation in community life. Thus, Independent Living should be viewed not merely as a social movement, but also as a state of mind that should become deeply rooted in our basic understanding of disability issues.

Implications for research and evaluation

The outcome measures used in the study portray how long-term outcomes of significance to policymakers can be developed "from the group up" by incorporating the views of interested parties. Also noted is the importance of developing intermediate outcome measures that are sensitive to the immediate post-program impact of IL services.

Because the study was able to account for a significant portion of the variance in outcome, a research model grounded in IL theory can contribute significantly to the understanding of disability outcomes. Researches observed a need to extend the model to other disability groups. Moreover, there is a need to integrate psychological variables (not included in the Urban Institute survey) to help account for IL outcomes.

Gerben DeJong,
"The Influence of Environmental Barriers On Independent Living Outcomes",
REHAB BRIEF: Bringing Research into Effective Focus, Vol. IV, No. 5
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