Handbook of Children with Special Health Care Needs PDF
Preview Handbook of Children with Special Health Care Needs
Handbook of Children with Special Health Care Needs David Hollar Editor Handbook of Children with Special Health Care Needs 1 C Editor David Hollar University of North Carolina Chapel Hill NC, USA ISBN 978-1-4614-2334-8 ISBN 978-1-4614-2335-5 (eBook) DOI 10.1007/978-1-4614-2335-5 Springer New York Dordrecht Heidelberg London Library of Congress Control Number: 2012940410 © Springer Science+Business Media New York 2012 All rights reserved. This work may not be translated or copied in whole or in part without the written permission of the publisher (Springer Science+Business Media, LLC, 233 Spring Street, New York, NY 10013, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic ad- aptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden. The use in this publication of trade names, trademarks, service marks, and similar terms, even if they are not identified as such, is not to be taken as an expression of opinion as to whether or not they are subject to proprietary rights. Printed on acid-free paper Springer is part of Springer Science+Business Media (www.springer.com) For all of our and your children, everywhere, and per Antoine de Saint-Exupery’s Le Petit Prince dedication to Leon Werth, for each of us and you, when we were (are) children. Preface Children with special health care needs (CSHCN), including children with disabilities, represent approximately 20% of all children. They comprise a considerable extent of human variation, with their principal general distin- guishing characteristic being that they need additional educational, health, medical, and assistive services so that they can live optimal lives. Whereas some of their conditions are severe, drastically limiting their potential, they are children, and we are committed to developing research and services that will help them to have happy, successful lives and to become leaders in our society. In this book, 41 international experts on CSHCN have prepared chap- ters describing various aspects of disability policy, research, treatments, and interventions. The purpose of this handbook is to provide the many research- ers, policy developers, consumer advocates, and families of CSHCN with resources to further their work. The topics are by no means exhaustive nor cover every type of disability or special health care need. Furthermore, the chapters are provided in no particular order of importance, although I have arranged them in a general flow of thematic areas, starting with policy, pro- gressing through various conditions and contextual approaches for interven- tions, and concluding with special topics and the important emphasis on the medical home, the continuous, lifelong tracking of health and development that is critical for positive health outcomes of CSHCN, even for all of us. Donna Petersen gets us started with an overview of CSHCN and public health policy in Chap. 1. In Chap. 2, Carol Page and Patricia Quattlebaum describe severe communication disorders and their treatment, conditions which affect many children but which may or may not attenuate with child development. Andrew Martin follows in Chap. 3 with a comprehensive discussion of a major behavioral condition, Attention Deficit Hyperactivity Disorder (ADHD), which is increasing worldwide. Martin interweaves this discus- sion with intervention applications that involve the rich educational research literature on promoting children’s positive psychological self-worth. Sunil Karande complements this chapter with a strong medical perspective on ADHD diagnosis and treatment in Chap. 4. Ann I. Alriksson-Schmidt and Judy K. Thibadeau from CDC provide Chap. 5 on mobility limitations in CSHCN. Chaps. 6–9 address sensory vii viii Preface disabilities starting with Irma M. Munoz-Baell, Carlos Alvarez-Dardet, M. Teresa Ruiz, and Emilio Ferreiro-Lago, who present deaf education from a deaf culture advocacy perspective (Chap. 6). Jugnoo Rahi and Lola Solebo describe childhood eye disorders and visual impairment (Chap. 7), then Diane Whitaker and Elana Scheiner present specific approaches to evaluat- ing infants and school children for visual disabilities (Chap. 8). Dental health often is overlooked for CSHCN, so Nancy J. Murray and Mary Anderson Hartley discuss oral health access issues for CSHCN in Chap. 9. Tuberculosis often is overlooked among major, deadly diseases despite the facts that it kills more children than most other diseases combined and that approximately 30% of humans have been exposed to the bacterium. In Chap. 10, Elisabetta Walters, Elizabeth Lutge, and Robert P. Gie provide a sobering description of tuberculosis among children in southern Africa and issues involved in testing, diagnosing, and long-term treatment of the disease. In Chap. 11, Yann Mikaeloff discusses diagnosis and treatments for CSHCN with multiple sclerosis. In Chap. 12, Jacquelyn Bertrand and Eliza- beth Parra Dang from CDC provide a thorough overview of diagnosis and treatment issues for fetal alcohol spectrum disorders, which vary in extent but impact affected children for their entire lives. Chapters 13–15 cover newborn screening for genetic, metabolic, and birth defect conditions. Bent Nørgaard Pedersen and David Michael Hougaard begin with a comprehensive discussion of newborn-screening programs and how laboratory tandem mass spectrometry and pediatrician follow-up visits can rapidly diagnosis and treat genetic and metabolic disorders following the heel stick blood test that is collected at birth for newborn infants in many countries. David Hollar discusses many of the various types of genetic and metabolic conditions in Chap. 14, most importantly listing resources for these conditions, including the very useful online Mendelian Inheritance in Man (OMIM®) website, initially developed by Dr. Viktor McKusick and currently updated daily by Johns Hopkins University and the United States National Library of Medicine National Center for Biotechnology Information. Hollar continues in Chap. 15 with birth defects screened by the National Birth Defects Prevention Network, and he provides an unusual fusion of psycho- logical and biological development that serves as a basis for trying to under- stand the origins of many types of disabilities. For studying CSHCN, Willi Horner-Johnson and Kathleen Newton (Chap. 16) describe several major databases with information on CSHCN that have been useful for studying public health and policy issues, with many of these databases being publicly available in a deidentified format by request. Jennifer L. Rowland covers an emerging important topic, secondary conditions in youth with disabilities (Chap. 17), secondary conditions being generally defined as physical and/or psychological conditions that arise due to the child’s primary disability condition or due to others’ misperceptions or environmental barriers to the primary disability. In Chap. 18, Jo Ann Ford, Judson Workman, Navid Masoudi, Mary Huber, Theresa Mayer, and Karel Pancocha discuss risk factors faced by adolescents with disabilities, most notably substance abuse, and they provide a unique perspective on school-based prevention programming with their prevention Preface ix through alternative learning styles (PALS) curriculum. I had the privilege of working with this group and this curriculum during 2001–2003. David Hollar and Arun Karpur describe proper approaches with exam- ples for conducting research involving CSHCN, especially protecting study participants’ rights and confidentiality, in Chap. 19. In Chap. 20, Chad A. Rose, Stephen Allison, and Cynthia G. Simpson discuss the critical topic of bullying, for which many CSHCN are victimized, and they evaluate various approaches to reduce risks for bullying. Finishing the handbook, Renee M. Turchi and Marie Y. Mann empha- size the medical home concept and continuity of care for CSHCN and their families in order to have optimal health outcomes. Hollar concludes a brief Chap. 22 with a summary of major concepts from the chapters. We hope that you will find the information in this handbook useful for advocating positive health and life outcomes for CSHCN. This handbook resulted from outstanding teamwork among an interna- tional group of coauthors, all experts on Children with Special Health Care Needs (CSHCN) within the overlapping fields of public health, education, and medicine. I thank each of them for sharing their expertise. I thank editors Khristine Queja and Diana Alkema at Springer for originally suggesting the idea for this handbook, editors Bill Tucker and Ian Marvinney for facilitat- ing early implementation of the project, and Kathryn Hiler and Shreya Bhat- tacharya for proofing and final formatting of the handbook. Many thanks go to John Hattie, Dennis Moore, Sanjay Asrani, and numerous colleagues with the Disability and Maternal and Child Health Divisions of the American Public Health Association as well as Springer’s Maternal and Child Health Journal for topic suggestions and recommendations of coauthors for the handbook. I express special gratitude to my family, Brooke, Paige, Virginia, and Roselyn, for their faith, patience, support, and interest in this project. August, 2011 David Hollar Contents 1 Policy: Its History, Intentions, and Consequences for Children with Special Health Care Needs ................................................... 1 Donna Petersen 2 Severe Communication Disorders ............................................... 23 Carol A. Page and Patricia D. Quattlebaum 3 Attention-Deficit/Hyperactivity Disorder (ADHD), Perceived Competence, and Self-Worth: Evidence and Implications for Students and Practitioners ....................... 47 Andrew J. Martin 4 Quality of Life in Children Diagnosed with Specific Learning Disability or Attention-Deficit/Hyperactivity Disorder ............. 73 Sunil Karande 5 Children and Adolescents with Mobility Limitations ................ 87 Ann I. Alriksson-Schmidt and Judy K. Thibadeau 6 Rethinking Deaf Learners’ Education: A Human Rights Issue .................................................................. 107 Irma M. Munoz-Baell, Carlos Alvarez-Dardet, M. Teresa Ruiz-Cantero, and Emilio Ferreiro-Lago 7 Childhood Eye Disorders and Visual Impairment ..................... 131 Jugnoo S. Rahi and A. Lola Solebo 8 Evaluating School-Aged Children with Visual Disabilities ....... 153 Diane B. Whitaker and Elana M. Scheiner 9 Oral Health Access Issues for Children with Special Health Care Needs ................................................... 169 Nancy J. Murray and Mary Anderson Hartley 10 Tuberculosis: The Special Needs of Children ............................. 189 Elisabetta Walters, Elizabeth Lutge, and Robert P. Gie 11 Children with Multiple Sclerosis ................................................. 213 Yann Mikaeloff xi xii Contents 12 Fetal Alcohol Spectrum Disorders: Review of Teratogenicity, Diagnosis and Treatment Issues ................................................. 231 Jacquelyn Bertrand and Elizabeth Parra Dang 13 Newborn Screening for Congenital Disorders in Routine and Research ............................................................................... 259 Bent Nørgaard Pedersen and David Michael Hougaard 14 Genetic and Metabolic Conditions for Children with Special Health Care Needs ................................................. 271 David Hollar 15 Development from Conception through Adolescence: Physiological and Psychosocial Factors Impacting Children with Special Health Care Needs ................................................. 289 David Hollar 16 Using Population-Based Survey Data to Monitor the Health of Children and Youth with Special Health Care Needs and Disabilities ............................................................................ 307 Willi Horner-Johnson and Kathleen Newton 17 Secondary Conditions in Youth with Disabilities ..................... 335 Jennifer L. Rowland 18 Accessible Substance Abuse Prevention for All Children ........ 353 Jo Ann Ford, Judson Workman, Navid Masoudi, Mary Huber, Theresa Mayer, and Karel Pancocha 19 Research Methods and Epidemiology for Children with Special Health Care Needs ................................................. 369 David Hollar and Arun Karpur 20 Addressing Bullying Among Students with Disabilities Within a Multi-Tier Educational Environment ....................... 383 Chad A. Rose, Stephen Allison, and Cynthia G. Simpson 21 Building a Medical Home for Children and Youth with Special Health Care Needs ................................................. 399 Renee M. Turchi and Marie Y. Mann 22 Epilogue: Advancing Health Outcomes and Social Participation for CSHCN ........................................ 419 David Hollar Glossary ................................................................................................ 423 Index ...................................................................................................... 425
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