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People with Down syndrome are living longer, fuller lives than ever before —and now for the first time ever, there's a comprehensive, reader-friendly book on the social, clinical, legal, and personal issues they'll navigate in adulthood. Internationally recognized authority Siegfried Pueschel blends contributions from respected experts with first-person essays by adults with Down syndrome themselves. Together, they answer readers'; critical questions about what adults experience and how to support their goals, dreams, choices, and overall well-being. Readers will get research-supported information and practical advice on
Ideal for sharing with families of individuals with Down syndrome, this book is also an invaluable reference for a wide range of professionals, including educators, clinicians, direct support professionals, transition specialists, and employment specialists. Informative and insightful, this landmark volume will help families and professionals support adults with Down syndrome as they build healthy, satisfying, and independent lives.
Excerpted from Chapter 15 of Adults with Down Syndrome, edited by Siegfried M. Pueschel, M.D., Ph.D., J.D., M.P.H.
Copyright © 2006 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
The preparation of this chapter was supported through a subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B031116. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR, and no endorsement should be inferred. This chapter is a revised version of a chapter originally published in Nadel, L., & Rosenthal, D. (1995). (Eds.), Down syndrome: Living and learning in the community. New York: Wiley-Liss. For further information on issues raised in this chapter, please visit http://thechp.syr.edu.
Recent years have seen the emergence of new approaches for supporting people with Down syndrome and other developmental disabilities to live in the community. Referred to as supported living, housing and supports, or self-determination (individualized funding), these approaches represent a radical departure from the traditional continuum of residential services. This chapter provides critiques of the principle of least restrictive environment and the traditional residential services continuum and also describes the characteristics of a supported-living approach that is more desirable because it gives people with Down syndrome and other developmental disabilities clearer control over where and how they live.
Since its earliest conceptualization, residential considerations for people with Down syndrome and other developmental disabilities have been defined in terms of a continuum, an ordered sequence of placements that vary according to the degree of restrictiveness (see Figure 15.1). A common way of representing the least restrictive environment continuum is a straight line running from the most to the least restrictive alternative or, alternatively, a hierarchical cascade of placement options (Hitzing, 1980; Reynolds, 1962; Schalock, 1983). The most restrictive placements are also the most segregated and offer the most intensive services; the least restrictive placements are the most inclusive and independent and offer the least intensive services. The assumption is that every person with a developmental disability can be located somewhere along this continuum based on individual needs.
The residential continuum runs from institutions (the most restrictive environment) to independent living (the least restrictive environment). Between these extremes are nursing homes and private institutions, community intermediate care facilities for people with mental retardation, community residences or group homes, foster care, and semi-independent living or transitional apartments. A common justification of institutions is that they prepare people with developmental disabilities, especially those with severe disabilities, to live in less restrictive environments (see Crissey & Rosen, 1986; Walsh & McCallion, 1987). The residential continuum assumes that people with Down syndrome and other developmental disabilities will move progressively to less and less restrictive environments, until they are able to live independently.
LEAST RESTRICTIVE ENVIRONMENT PRINCIPLE
Outside of discussions of its legal and constitutional dimensions (Burgdorf, 1980; Turnbull, 1981), the least restrictive environment principle, as a policy direction, has received relatively little critical analysis in the field of developmen