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.
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Siegfried M. Pueschel, M.D., Ph.D., J.D., M.P.H., studied medicine in Germany and graduated from the Medical Academy of Düsseldorf in 1960. He then pursued his postgraduate studies at The Children's Hospital in Boston, Massachusetts, and the Montreal Children's Hospital in Quebec, Canada. In 1967, he earned a Master of Public Health degree from the Harvard School of Public Health in Boston, Massachusetts; in 1985, he was awarded a doctoral degree in developmental psychology from the University of Rhode Island in Kingston; and in 1996, he was granted a Doctor of Juris degree from the Southern New England School of Law in North Dartmouth, Massachusetts. From 1967 to 1975, Dr. Pueschel worked at the Developmental Evaluation Clinic of The Children's Hospital in Boston. There he became director of the first Down Syndrome Program and provided leadership to the PKU and Inborn Errors of Metabolism Program. In 1975, Dr. Pueschel was appointed director of the Child Development Center at Rhode Island Hospital in Providence. He continued to pursue his interests in clinical activities, research, and teaching in the fields of developmental disabilities, biochemical genetics, and chromosome abnormalities. Dr. Pueschel is certified by the American Board of Pediatrics and is a Diplomate of the American Board of Medical Genetics. His academic appointments include Lecturer in Pediatrics, Harvard Medical School, and Professor of Pediatrics, Brown University in Providence, Rhode Island.
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).
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.
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