Adults with Down Syndrome

ISBN 10: 1557668116 / ISBN 13: 9781557668110
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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.

About the Author:
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.


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Title: Adults with Down Syndrome
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Pueschel "M.D. Ph.D.", Siegfried [Editor]; Amado Ph.D., Angela [Contributor]; Bergeron, Carolyn [Contributor]; Burke, Chris [Contributor]; Cunningham, Jennifer [Contributor]; Desai, Sujeet [Contributor]; Dinerstein J.D., Robert [Contributor]; Eidelman, Steven [Contributor]; Forts, Ann [Contributor]; Gaffney, Karen [Contributor]; Hartzog, Dave [Contributor]; Iovannone Ph.D., Rose [Contributor]; Jones, Andrew [Contributor]; Kingsley, James [Contributor]; Lakin Ph.D., K. [Contributor]; Maly, Katie [Contributor]; Martin, Meredith [Contributor]; Mattson, Jeffery [Contributor]; Maxwell, Christine [Contributor]; Myers M.D., Beverly [Contributor]; Neufeld "M.P.S.H. M.D.", Jacob [Contributor]; Pastorfield PHN, Courtney [Contributor]; Peterson, Joel
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Siegfried Pueschel M.D. Ph.D. J.D. M.P.H. (Editor), Rose Iovannone Ph.D. (Contributor), K. Lakin Ph.D. (Contributor), Karin Schwier (Contributor), Paul Wehman Ph.D. (Contributor)
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