Adults with Down Syndrome / Edition 1

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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.

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Editorial Reviews

Professor Emerita of Communicative Disorders, University of Wisconsin-Madison, and poet - Robin S. Chapman
"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."
Psychologist and author of Special Children, Challenged Parents. - Robert Naseef
"This powerful book stands alone, helping the reader reach for the possibilities and live the realities."
Director of Student Services, Charter College of Education, California State University Los Angeles; author of Believe i - Mary A. Falvey
"A delightful and insightful look at the lives of adults with Down syndrome . . . I highly recommend this book."
Mark L. Batshaw

"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."
Emmy-Award winning writer for Sesame Street, parent of adult with Down syndrome, disability advocate - Emily Perl Kingsley
"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."
Down Syndrome Program, Children's Hospital Boston - Allen C. Crocker
"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."
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."
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Product Details

  • ISBN-13: 9781557668110
  • Publisher: Brookes, Paul H. Publishing Company
  • Publication date: 6/1/2006
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 288
  • Sales rank: 1,014,961
  • Product dimensions: 6.00 (w) x 9.00 (h) x 0.66 (d)

Meet the Author

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.

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 1

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Read an Excerpt

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

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.


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

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Table of Contents

About the Editor
About the Contributors
  1. Stars
    Meredith Leslie Martin
  2. My Adult Life Up to Now
    Jason A. Kingsley
  3. Optimal Health Care and Medical Concerns
    Siegfried M. Pueschel
  4. Life Experiences
    Jennifer Cunningham
  5. My Life as a Special Tomato
    Carolyn Hansen Bergero
  6. Are Psychiatric Disorders of Concern in Adults with Down Syndrome?
    Siegfried M. Pueschel and Beverly A. Myers
  7. Positive Behavior Support Process for Adults with Down Syndrome and Challenging Behavior
    Rose Iovannone
  8. 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
  9. Having a Life
    Jeffery D. Mattson
  10. Person-Centered and Collaborative Supports for College Success
    Cate Weir
  11. College Years and Future Job
    Andrew Lee Jones
  12. Work and Vocational Training for Individuals with Down Syndrome
    Paul Wehman, Pam Targett, and Jacob A. Neufeld
  13. The Future Is Ours
    Chris Burke
  14. Aiming High
    Mia Peterson
  15. Supporting Adults to Live in the Community: Beyond the Continuum
    Steven J. Taylor
  16. Independent
    Katie Maly
  17. Recreation Through Special Olympics: Sports, Fitness and Well-Being
    Siegfried M. Pueschel and Courtney Pastorfield
  18. Imagine the Possibilities
    Karen Elizabeth Gaffney
  19. Contribution and Community Life: Fostering Social Relationships, Community Participation and Full Inclusion
    Angela Novak Amado and K. Charlie Lakin
  20. My Life So Far
    Steven William Sauter
  21. Life is Good
    Joel C. Peterson
  22. My Story
    Sujeet S. Desai
  23. Guardianship and Its Alternatives
    Robert D. Dinerstein
  24. Advocacy and Adults with Down Syndrome
    Steven M. Eidelman
  25. My Life
    Christine D. Maxwell
  26. My Life on the "UP"-side of My Down Syndrome disABILITY
    Ann M. Forts
  27. My Wonderful Life
    Karen Toff


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