Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

1. Front Matter

   Pages i-lx

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2. Introduction

   1. Front Matter

      Pages 1-3

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   2. Introduction to Intellectual and Developmental Disabilities

      • Dilip R. Patel, Donald E. Greydanus, Joav Merrick, I. Leslie Rubin

      Pages 5-12

3. Health

   1. Front Matter

      Pages 13-13

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   2. Health Is More than Medicine

      • Donald J. Lollar, Randall A. Phelps

      Pages 15-29

4. History

   1. Front Matter

      Pages 31-31

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   2. History of Health Care for People with Intellectual and Developmental Disability

      • Wendy M. Nehring, Brandi Lindsey

      Pages 33-46

5. Family Centered Care

   1. Front Matter

      Pages 47-47

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   2. Family Centered Care in a Health Care Setting

      • Catherine de Haas, Ruth Ryan

      Pages 49-58

   3. Siblings of Children and Adults with Intellectual and Developmental Disability

      • Monica McCaffrey

      Pages 59-67

   4. Grandparents as Caregivers for Grandchildren with Intellectual and Developmental Disabilities

      • LaShawnDa Pittman, Janice Nodvin, Maeve Howett

      Pages 69-77

   5. Aging Parents

      • Nancy S. Jokinen

      Pages 79-84

   6. The Rights of Individuals with Disability to Parenthood

      • Karen McKenzie, Laura Shewan, Suzanne Wilson

      Pages 85-101

   7. Foster Care

      • Julie Dini

      Pages 103-110

   8. Transitioning Youth to Adult Health Care: A Person-Centered and Culturally Competent Approach

      • Stacey Ramirez, Staeshe Collins, Brenda Liz Muñoz

      Pages 111-119

6. Integrating Systems of Care

   1. Front Matter

      Pages 121-121

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   2. Integrating Systems of Care for Individuals with Intellectual and Developmental Disabilities Across the Lifespan

      • Georgina Peacock, Cheryl Rhodes

      Pages 123-134

7. International Classification

   1. Front Matter

      Pages 135-135

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   2. International Classification of Function

      • Margaret R. Kyrkou

      Pages 137-146

8. Systems of Health Care Delivery

   1. Front Matter

      Pages 147-147

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This book provides a broad overview of quality health care for people with intellectual and developmental disabilities (IDD). It focuses on providing the reader a practical approach to dealing with the health and well-being of people with IDD in general terms as well as in dealing with specific conditions. In addition, it offers the reader a perspective from many different points of view in the health care delivery system as well as in different parts of the world. This is the 3rd , and much expanded edition, of a text that was first published in 1989 (Lea and Fibiger). The second edition was published in 2006 (Paul Brookes)  and has been used as a formal required text in training programs for physicians, nurses and nurse practitioners as well as by administrators who are responsible for programs serving people with IDD. This book is considered the “Bible” in the field of health care for people with IDD since 1989 when the first edition came out.

• Aging with Disabilities
• Assessing Health and Quality of Care
• Causas and Consequences of Prematurity and IDD
• Communication with Patients with IDD and Family
• Concepts of Holistic Care
• Develomental Therapies and Health Professionals
• Family Care and People with Intellectual Disability
• Genetics and Genetic Syndroms for People with IDD
• History of Health Care for People with Intellectual Disability
• IDD Intellectual and Developmental Disabilities
• Integrative and Complementary Health and Alternatives
• International Perspectives for Health Care of IDD
• Lifespan Care and People with Intellectual Disability
• Medicine and Health
• Mental Health and Behavior
• Neorological Disorders
• Severe and Profound Intellectual Disability
• Social Determinants of Health and Disability
• Syndroms of Developmental Disabilities

• Innovative Solutions for Disadvantage and Disability and Department of Pediatrics, Morehouse School of Medicine, Atlanta, USA

  I. Leslie Rubin

• National Institute of Child Health and Human Development and Medical Services, Division for Developmental and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, Israel

  Joav Merrick

• Department of Pediatric and Adolescent Medicine, Western Michigan University Homer Stryker MD School of Medicine, Western Michigan University, Kalamazoo, USA

  Donald E. Greydanus, Dilip R. Patel

I. Leslie Rubin, MD, is President and Founder of the Innovative Solutions for Disadvantage and Disability (ISDD), Research Associate Professor at the Department of Pediatrics, Morehouse School of Medicine in Atlanta, Georgia, Co-director of the Southeast Pediatric Environmental Health Unit at Emory University, and Medical Director of Developmental Pediatric Specialists, Atlanta, Georgia. He is originally from South Africa, where he trained in pediatrics. He came to the United States to specialize in neonatology and then in developmental pediatrics. He was initially at the hospitals of the Case Western Reserve University in Cleveland Ohio from 1976-1980 and then moved to the Children’s Hospital in Boston and the Harvard Medical School from 1980-1994. In July 1994 he moved to Atlanta, Georgia as Director of Developmental Pediatrics at Emory University and as Medical Director of the Marcus Center. Since 1998, he has been involved with the Southeast Pediatric Environmental HealthSpecialty Unit at Emory University, where he has integrated his understanding of developmental disabilities into the world of environmental health. In May 2004, he founded the Institute for the Study of Disadvantage and Disability (now Innovative Solutions for Disadvantage and Disability), which is dedicated to improving awareness and understanding of the relationship between social and economic disadvantage and disabilities in children. In September 2004, he left Emory University, and joined the faculty of Morehouse School of Medicine. He is the recipient of the 2012 Calvin J Sia Award from the American Academy of Pediatrics for work on a Medical Home for Homeless Children and also through the ISDD of the 2013 Martin Luther King Jr Award from Emory University Business School and School of Public Health for the work of ISDD in improving the lives of children who grow up in circumstances of social and economic disadvantage. E-mail: lrubi01@emory.edu

Joav Merrick, MD, MMedSci, DMSc, is professor of pediatrics, child health and human development, Division of Pediatrics, Hadassah Hebrew University Medical Center, Mt Scopus Campus, Jerusalem, Israel and Kentucky Children’s Hospital, University of Kentucky, Lexington, Kentucky United States and  professor of public health at the Center for Healthy Development, School of Public Health, Georgia State University, Atlanta, United States, the medical director of the Health Services, Division for Intellectual and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, the founder and director of the National Institute of Child Health and Human Development in Israel. Numerous publications in the field of pediatrics, child health and human development, rehabilitation, intellectual disability, disability, health, welfare, abuse, advocacy, quality of life and prevention. Received the Peter Sabroe Child Award for outstanding work on behalf of Danish Children in 1985 and the International LEGO-Prize (“The Children’s  Nobel Prize”) for an extraordinary contribution towards improvement in child welfare and well-being in 1987. E-mail: jmerrick@zahav.net.il

Donald E. Greydanus, MD, Dr. HC (ATHENS), FAAP, FSAM (Emeritus), FIAP (HON) is Professor and Founding Chair of the Department of Pediatric and Adolescent Medicine, as well as Pediatrics Program Director at the Western Michigan University Homer Stryker MD School of Medicine (WMED), Kalamazoo, Michigan, USA. He is also Professor of Pediatrics and Human Development at Michigan State University College of Human Medicine (East Lansing, Michigan, USA) as well as Clinical Professor of Pediatrics at MSU College of Osteopathic Medicine in East Lansing, Michigan, USA. Received the 1995 American Academy of Pediatrics’ Adele D. Hofmann Award for “Distinquished Contributions in Adolescent Health”, the 2000 Mayo Clinic Pediatrics Honored Alumnus Award for “National Contributions to the field of Pediatrics,” and the 2003 William B Weil, Jr., MD Endowed Distinguished Pediatric Faculty Award from Michigan State University College of Medicine for “National and international recognition as well as exemplary scholarship in pediatrics.” Received the 2004 Charles R Drew School of Medicine (Los Angeles, CA) Stellar Award for contributions to pediatric resident education and awarded an honorary membership in the Indian Academy of Pediatrics—an honor granted to only a few pediatricians outside of India. Was the 2007-2010 Visiting Professor of Pediatrics at Athens University, Athens, Greece and received the Michigan State University College of Human Medicine Outstanding Community Faculty Award in 2008.  In 2010 he received the title of Doctor Honoris Causa from the University of Athens (Greece) as a “distinguished scientist who through outstanding work has bestowed praise and credit on the field of adolescent medicine (Ephebiatrics).” In 2010 he received the Outstanding Achievement inAdolescent Medicine Award from the Society for Adolescent Medicine “as a leading force in the field of adolescent medicine and health.” Past Chair of the National Conference and Exhibition Planning Group (Committee on Scientific Meetings) of the American Academy of Pediatrics and member of the Pediatric Academic Societies’ (SPR/PAS) Planning Committee (1998 to Present). In 2011 elected to The Alpha Omega Alpha Honor Society (Faculty member) at Michigan State University College of Human Medicine, East Lansing, Michigan. Former member of the Appeals Committee for the Pediatrics’ Residency Review Committee (RRC) of the Accreditation Council for Graduate Medical Education (Chicago, IL) in both adolescent medicine and general pediatrics. Numerous publications in adolescent health and lectureships in many countries on adolescent health. E-mail: donald.greydanus@med.wmich.edu

Dilip R Patel, MD, MBA, FAAP, FAACPDM, FACSM, CPHQ, CMQ, CPE, is professor in the Department of Pediatric and Adolescent Medicine, Western Michigan University Homer Stryker MD School of Medicine, Kalamazoo, and Department of Pediatrics and Human Development at the Michigan State University College of Human Medicine, East Lansing, Michigan, USA. He is a full time teaching faculty member in the Pediatric Residency Program at Western Michigan University School of Medicine, Kalamazoo, USA. Dr Patel has subspecialty training and interests in neurodevelopmental disabilities, developmental-behavioral pediatrics, adolescent medicine and sports medicine. He has published numerous papers on a wide ranging topics in these areas and has edited several special symposia and books. E-mail: dilip.patel@med.wmich.edu

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