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Adults with Down Syndrome
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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
- addressing medical and mental health issues
- fostering social relationships
- using person-centered supports to help young adults succeed in college
- helping people with Down syndrome develop self-esteem and healthy sexuality
- promoting community employment through methods such as vocational education, transition planning, and supported employment
- ensuring that adults have choices and control over their living arrangements
- considering alternatives to guardianship as individuals reach adulthood
- encouraging healthy living through participation in recreational events
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.
Review: Intellectual and Developmental Disabilities
"Addresses important issues in the lives of adults with Down syndrome…the essays are rare and moving life accounts that help tear down long-held stereotypes."
Review by: Robin Chapman, Professor Emerita of Communicative Disorders, University of Wisconsin-Madison, and poet
"A terrific, engaging, book, by and about adults with Down syndrome. . . will help families, professionals, and adults with Down syndrome themselves create supportive communities and celebratory lives."
Review by: Robert Naseef, Psychologist and author of Special Children, Challenged Parents.
"This powerful book stands alone, helping the reader reach for the possibilities and live the realities."
Review by: Mary Falvey, Director of Student Services, Charter College of Education, California State University Los Angeles; author of Believe in My Child with Special Needs
"A delightful and insightful look at the lives of adults with Down syndrome . . . I highly recommend this book."
Review by: Mark Batshaw, Chief Academic Officer, Children's National Medical Center; Professor and Chair, Department of Pediatrics and Associate Dean for Academic Affairs, The George Washington University School of Medicine and Health Sciences
"Will appeal to both young adults with Down syndrome who read the successful stories of peers and to professionals who will gain knowledge and insight from the experts."
Review by: Emily Kingsley, Emmy-Award winning writer for Sesame Street, parent of adult with Down syndrome, disability advocate
"At last ... a comprehensive and reader-friendly book about the new generation of adults with Down syndrome who have benefitted from home rearing, enhanced medical care and inclusive education."
Review by: Allen Crocker, Down Syndrome Program, Children's Hospital Boston
"This book is a delightful collection. There are sixteen personal tales by inspired citizens. Plus a dozen lessons that present the modern paradigm for adult life. It is a cultural victory."
About the Editor
About the Contributors
Meredith Leslie Martin
- My Adult Life Up to Now
Jason A. Kingsley
- Optimal Health Care and Medical Concerns
Siegfried M. Pueschel
- Life Experiences
- My Life as a Special Tomato
Carolyn Hansen Bergero
- Are Psychiatric Disorders of Concern in Adults with Down Syndrome?
Siegfried M. Pueschel and Beverly A. Myers
- Positive Behavior Support Process for Adults with Down Syndrome and Challenging Behavior
- Self Before Sex: Perspectives on Support, Self-Esteem, and Sexuality
Karin Melberg Schwier, with invited contributions from Dave Hartzog, Nannie Sanchez, Stefanie Ward, Karen Taylor, and Jim Schwier
- Having a Life
Jeffery D. Mattson
- Person-Centered and Collaborative Supports for College Success
- College Years and Future Job
Andrew Lee Jones
- Work and Vocational Training for Individuals with Down Syndrome
Paul Wehman, Pam Targett, and Jacob A. Neufeld
- The Future Is Ours
- Aiming High
- Supporting Adults to Live in the Community: Beyond the Continuum
Steven J. Taylor
- Recreation Through Special Olympics: Sports, Fitness and Well-Being
Siegfried M. Pueschel and Courtney Pastorfield
- Imagine the Possibilities
Karen Elizabeth Gaffney
- Contribution and Community Life: Fostering Social Relationships, Community Participation and Full Inclusion
Angela Novak Amado and K. Charlie Lakin
- My Life So Far
Steven William Sauter
- Life is Good
Joel C. Peterson
- My Story
Sujeet S. Desai
- Guardianship and Its Alternatives
Robert D. Dinerstein
- Advocacy and Adults with Down Syndrome
Steven M. Eidelman
- My Life
Christine D. Maxwell
- My Life on the "UP"-side of My Down Syndrome disABILITY
Ann M. Forts
- My Wonderful Life
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 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).
- 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.
- 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).
- 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.
- 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.
- 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).
- 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.
- 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.
- 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.
- 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.
- 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.
- 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 supervision of support staff or personal-assistance aides. For example, some agencies help many of the people they support to find and hire personal-assistance aides.
- Emphasis on personal relationships —Supported living should not be viewed as a "model"or "program,"but a different philosophy of helping people with developmental disabilities to enjoy meaningful lives in the community. Central to this philosophy is an emphasis on personal relationships between people with developmental disabilities and friends, family members, and community members without disabilities. Some supported-living agencies employ "community builders"or include this role in the job descriptions of all staff. Friendships and unpaid relationships are not intended to replace paid staff but to assist people in becoming part of the community (Bogdan & Taylor, 1987).
A more recent approach for supporting people with Down syndrome and other developmental disabilities is referred to as self-determination (Kennedy & Lewin, 1997; Moseley & Nerney, 2000; Sands & Wehmeyer, 1996; Wehmeyer, 1998) or individualized or direct funding (Moseley, Gettings, & Cooper, 2004; Moseley, Lakin, & Hewitt, 2004; O'Brien, 1999, 2001). Under this approach, individuals or their families receive funding directly, which they can use to purchase or arrange for their own services and supports. The services or supports may be offered by an existing agency or be provided by friends, acquaintances, neighbors, community members, or others recruited by individuals or their families.
According to Nerney and others (Center on Self-Determination, n.d.; Nerney & Shumway, 1996), self-determination is based on the following principles:
- Freedom—ability for an individual, together with freely chosen family and friends, to plan a life with necessary support rather than purchase a program
- Authority—ability for a person with disabilities (with a social support network or circle if needed) to control a certain sum of dollars in order to purchase services
- Autonomy—arranging of resources and personnel, both formal and informal, that will assist an individual with disabilities to live a life in the community rich in community affiliations
- Responsibility—acceptance of a valued role in a person's community through competitive employment, organizational affiliations, spiritual development, and general caring of others in the community, as well as accountability for spending public dollars in ways that are life-enhancing for people with disabilities
The principle of the least restrictive environment was extremely forward looking for its time. It emerged in an era in which people with developmental disabilities and their families were offered segregation or nothing at all. As a legal concept and policy direction, least restrictive environment helped to create options and alternatives. It is now time to find new ideas, concepts, and principles to guide us. The least restrictive environment principle defined the challenge in terms of creating less restrictive and more integrated and normalized environments and programs. Now, we must define the challenge in terms of helping people with developmental disabilities to live successfully in their own homes in the community and to have maximum control over the services they receive.