Adults with Down Syndrome - Softcover

Rose Iovannone, Ph.D., Assistant Professor, Division of Applied Research and Educational Support (DARES), Department of Child & Family Studies, Florida Mental Health Institute, University of South Florida, 13301 Bruce B. Downs Boulevard, MHC 2113A, Tampa, Florida 33612-3899

Dr. Iovannone is currently the director of the Prevent-Teach-Reinforce (PTR) Project. She has also served as the co-principal investigator on a University of South Florida (USF) subcontract for the Professional Development in Autism Project funded by Office of Special Education Programs (OSEP) and Assistant Director for the Center for Autism and Related Disabilities (CARD) at USF. She has published several journal articles and book chapters in the areas of functional assessment, function-based support plans, and positive behavior support and is currently working on numerous manuscripts related to preliminary outcomes of the PTR project. She teaches graduate-level courses on behavioral interventions. As an expert in providing support at the tertiary level, Dr. Iovannone is also a well-respected trainer and consultant. She has extensive experience in working with individuals with autism, learning disabilities, and emotional disabilities. Her principal activities and research interests have been in the areas of functional behavior assessment and positive behavior support, augmentative and alternative communication, and assessment and evaluation.

K. Charlie Lakin, Ph.D., is Director of the Rehabilitation Research and Training Center (RRTC) on Community Living at the University of Minnesota in Minneapolis. Dr. Lakin has more than 25 years of experience in providing services to individuals with intellectual and developmental disabilities as a teacher, researcher, trainer, consultant, and advocate. He is principal investigator of numerous research and/or training centers and projects and has authored or co-authored more than 175 books, monographs, journal articles, book chapters, and technical reports. Dr. Lakin has been a frequent consultant to federal and state agencies on matters of policy, research, and evaluation, including the Administration on Developmental Disabilities, the Health Care Financing Administration, the Assistant Secretary for Planning and Evaluation (U.S. Department of Health and Human Services), the National Center on Health Statistics, the National Institute on Disability and Rehabilitation Research, the Congressional Research Service, the General Accounting Office, and the Centers for Disease Control and Prevention. Dr. Lakin has worked actively as a director or consultant for nonprofit organizations and agencies focused on community services, arts, outdoor recreation and adventure, integrated sports, and advocacy for individuals with disabilities. He has collaborated with universities, private research companies, and foundations in national evaluation and research programs. Dr. Lakin currently is an associate editor of Mental Retardation and an editorial board member of the Journal of The Association for Persons with Severe Handicaps (JASH), the Journal of Intellectual and Developmental Disability, and the Journal of Social Science and Disability. Among the recognitions afforded Dr. Lakin are the Dybwad Humanitarian Award of the American Association on Mental Retardation and an appointment by former President Clinton to the President's Committee on Mental Retardation.

Karin Melberg Schwier is an author and illustrator whose most noted works are about people with intellectual disabilities. She has received awards for her writing from the Canadian Association for Community Living (CACL), the Council for Exceptional Children, and the National Down Syndrome Congress, among others. Some of her most recent publications include the illustrated children's book Idea Man (Diverse City Press, 1997), winner of the Saskatchewan Writer's Guild children's literature award: Couples with Intellectual Disabilities Talk About Living and Loving (Woodbine House, 1994), winner of the CACL award in its first year of release and, in 1995, winner of the Joan Kershaw Publications Award from the Canadian Council for Exceptional Children; Keith Edward's Different Day, an illustrated children's story about individual differences (Impact Publishers, 1992; The Roeher Institute, 1988); and Speakeasy: People with Mental Handicaps Talk About Their Lives in Institutions and in the Community (PRO-ED, 1990). She produces a provincial magazine, Dialect, for the Saskatchewan Association for Community Living, and advocacy magazine for people with intellectual disabilities. She is a member of the national editorial board of entourage, a magazine published by the CACL. She is working on her first novel, in which the main character has an intellectual disability. She lives in Saskatoon, Saskatchewan, Canada, with her husband, Richard, a professor of education. They have two sons and a daughter: Jim, 25, Erin, 23, and Ben, 19.

Pamela Sherron Targett, M.Ed., has worked in the area of disability and employment since 1986. For 22 years she oversaw the day-to-day operations of a fee-for- service supported employment program that assisted individuals with significant disabilities with going to work. During this time she also worked with schools to develop community-based vocational education programs. Her special interests include transition to work for youth with disabilities and individuals with significant support needs, such as brain injury and autism.

Dr. Wehman is Professor of Physical Medicine with joint appointments in the Departments of Rehabilitation Counseling and also Special Education and Disability Policy at Virginia Commonwealth University. He serves as Chairman of the Division of Rehabilitation Research in the Department of Physical Medicine and Rehabilitation. Dr. Wehman has his Ph.D. in Behavioral Disabilities from University of Wisconsin-Madison.

As one of the original founders of supported employment, he has worked closely with business and industry since 1980 and has published over 200 articles and authored or edited more than 40 books primarily in transition, severe disabilities, autism, traumatic brain injury and employment for persons with disabilities. He has been the Principal Investigator on 41 million dollars in grants during his career.

As the father of two young adults with disabilities, he brings a strong parental as well as business perspective to his work. He is highly active in speaking to professionals, parents, advocates and businesses on transition and employment for people with autism, traumatic brain injury, spinal cord injury and other developmental disabilities. On a daily basis he works with individuals with disabilities, communicates regularly with professionals in the world of business related to disability and diversity, and is active in teaching and mentoring medical students, residents, and doctoral students in rehabilitation medicine, special education, rehabilitation and psychology. A major focus of Dr. Wehman's work is on expanding the partnerships with businesses of all sizes so that more persons with disabilities can gain entrance into the workplace and retain employment successfully.

He is a recipient of the Kennedy Foundation Award in Mental Retardation in 1990 and President's Committee on Employment for Persons with Disabilities in 1992. Dr. Wehman was recognized as one of the 50 most influential special educators of the millennium by the Remedial and Special Education journal in December, 2000. He is also Editor-in-Chief of The Journal of Vocational Rehabilitation.

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.

RESIDENTIAL CONTINUUM

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 developmental disabilities. The soundness of the principle generally has been assumed by practitioners and scholars. Although books, articles, and policies have been written on living and learning in the least restrictive environment (Bruininks & Lakin, 1985), the meaning and implications of the principle as a foundation on which to build services have not been thoroughly and critically explored.

Arriving at a precise definition of least restrictive environmentis difficult because the term is used so variously by people in the field; however, out of the many usages a common meaning can be identified. The principle of least restrictive environment for residential, educational, vocational, and other services may be defined as follows: Services for a person with developmental disabilities should be designed according to a range of program options varying in terms of restriction, normalization, independence, and inclusion, with a presumption in favor of environments that are as independent and inclusive as can be accommodated by the severity of the person's disability. Nevertheless, while it has its advantages, the least restrictive environment principle and the associated residential continuum model are characterized by several serious conceptual and philosophical flaws (Taylor, 1988, 2001).

1. The least restrictive environment principle legitimates restrictive environments. Implicit in the principle is the assumption that there are circumstances under which the most restrictive environment would be appropriate. In other words, to conceptualize services in terms of restriction is to legitimate more restrictive settings. As long as services are conceptualized in this manner, some people will end up in restrictive environments. In most cases, they will be people with severe disabilities.
   
   
2. The least restrictive environment principle confuses segregation and inclusion, on the one hand, with intensity of services, on the other. As represented by the continuum, least restrictive environment equates segregation with the most intensive services and inclusion with the least intensive services. The principle assumes that the least restrictive, most inclusive settings are incapable of providing the intensive services needed by people with severe disabilities. When viewed from this perspective, it follows that people with severe disabilities will require the most restrictive and segregated settings; however, segregation and inclusion, on the one hand, and intensity of services, on the other, are separate dimensions. In fact, some of the most segregated settings have provided the least effective services (Blatt & Kaplan, 1966; Blatt, Ozolins, & McNally, 1979; Center on Human Policy, 1979; Kim, Larson, & Lakin, 2001; Stancliffe & Lakin, 2004).
   
   
3. The least restrictive environment principle is based on a "readiness model." Also implicit in the least restrictive environment principle is the assumption that people with developmental disabilities must "earn the right"to move to the least restrictive environment. In other words, the person must "get ready"or "be prepared"to live, work, or go to school in inclusive settings, with many residential and vocational programs designed to be "transitional."The irony is that the most restrictive placements do not prepare people for the least restrictive placements. Institutions do not prepare people for community living, segregated day programs do not prepare people for competitive work, and segregated schooling does not prepare students for inclusive schooling.
   
   
4. The least restrictive environment principle supports the dominance of professionals' decisions over the decisions of individuals receiving services. Inclusion is ultimately a moral and philosophical issue, not a professional one, yet least restrictive environment invariably is framed in terms of professional judgments regarding "individual needs."The phrase least restrictive environment is almost always qualified with words such as appropriate, necessary, feasible, and possible (and never with desired or wanted), and professionals ultimately determine what is appropriate, possible, feasible, or necessary for individuals receiving services.
   
   
5. The least restrictive environment principle tends to allow infringements on people's rights . Least restrictive environment is a seductive concept; government should act in a manner that least restricts the rights and liberties of individuals. When applied categorically to people with developmental disabilities, however, the least restrictive environment principle sanctions infringements on basic rights to freedom and community participation beyond those imposed on people without disabilities. The question implied by least restrictive environment is not whether people with developmental disabilities should be restricted but to what extent (Turnbull, 1981).
   
   
6. The least restrictive environment principle implies that people must move as they develop and change. As the least restrictive environment principle is commonly conceptualized, people with Down syndrome and other developmental disabilities are expected to move toward increasingly less restrictive environments. Schalock wrote, "The existence of a functioning system of community services would provide a range of living and training environments that facilitate client movement along a series of continua"(1983, p. 22). Even if people moved smoothly through a continuum, their lives would be a series of stops between transitional placements. People with developmental disabilities sometimes move to "less restrictive environments"only because new programs open up or space is needed to accommodate people with more severe disabilities. This can destroy any sense of home and may disrupt relationships with roommates, neighbors, and friends.
   
   
7. The least restrictive environment principle directs attention to physical settings rather than to the services and supports people need to be included in the community. As Gunnar Dybwad (personal communication, February, 1985) has stated, "Every time we identify a need in this field, we build a building."By its nature, the principle of the least restrictive environment emphasizes facilities and environments designed specifically for people with developmental disabilities. The field of developmental disabilities has defined its mission in terms of creating "facilities"(first large ones and now smaller ones) and "programs,"rather than providing the services and supports to enable people with developmental disabilities to participate in the same settings used by other people.
   

NEW COMMUNITY-BASED CONTINUUM

Critical examination of the principle of the least restrictive environment has led to the creation of a new "community-based"continuum. Critics of the traditional continuum rightfully reject the most restrictive and segregated environments and the assumption that segregated settings prepare people with Down syndrome and other developmental disabilities to function in inclusive settings (Bronston, 1980; Galloway, 1980; Haring & Hansen, 1981; Hitzing, 1980, 1987). Yet these critics stop short of rejecting the least restrictive environment principle itself, which underlies the residential continuum.

The community-based continuum has become a guiding principle for the design of services for people with developmental disabilities and their families. Like the traditional residential continuum, this new continuum envisions a series of options varying in degrees of restriction, inclusion, and normalization, with a preference—but not a mandate—for the least restrictive and most inclusive and normalized settings. It is also generally assumed that people with the most severe disabilities will be found in the more restrictive and less inclusive environments. In contrast to the traditional continuum, the community-based continuum eliminates totally segregated environments located at the most restrictive end of the scale. The range of acceptable options is confined to settings "in the community"that provide for at least some degree of interaction with people without disabilities.

The community-based residential continuum includes settings that range from group living arrangements on the most restrictive end to independent living on the least restrictive end. Specific residential programs found in the community-based continuum include small community-based intermediate care facilities, community residences or group homes, three- to four-person "mini-group homes,"apartment clusters, supervised apartments, and "semi-independent living situations"(Halpern, Close, & Nelson, 1986). As in the case of the traditional continuum, it is assumed that people with severe disabilities will be served in the more restrictive congregate settings, albeit small by institutional standards according to the number of people served, and people with mild disabilities will live in less restrictive, smaller apartments.

HOMES, NOT FACILITIES

In contrast to the least restrictive environment continuum model, a supported-living approach focuses on the person, not the facility or the program. As developed by an increasing number of agencies (Taylor, Bogdan, & Lutfiyya, 1995; Taylor, Bogdan, & Racino, 1991; also see O'Brien, 1994), this approach has the following characteristics.

1. Separation of housing and support services—In traditional residential programs, a single agency both owns or rents the facility and provides the staff services and supports needed by the people living there. In a supported-living approach, people with disabilities or their families own or rent their homes; agencies coordinate or provide the services people need to live successfully in the community (Taylor et al., 1995). Since people are not guests in someone else's residence, they have maximum control over their personal living space. They do not have to fit into an existing program.
   
   
2. Choice in living arrangements —Such matters as the location of people's homes and the selection of roommates are based on personal preferences and choices, rather than being predetermined by agency policies. Although some people may choose to live alone, supported living should not be equated with one person per home.
   
   
3. Flexible services—Under the residential continuum approach, people were expected to leave their residence as their service needs changed. If they required less intensive services, they moved to a less restrictive setting; if they required more intensive services, they moved to a more restrictive setting. Because a supported-living approach separates housing and supports, people can receive more or less intensive services while remaining in their homes. The services can range from live-in support to various forms of part-time or drop-in assistance. This support or assistance can be provided by paid roommates, neighbors, and personalassistance aides as well as regular agency staff.
   
   
4. Increased control over services —Traditionally, people with developmental disabilities have had little or no say over who provided support for them. Many supported-living agencies are attempting to involve people with disabilities and their families in the selection and ...