Table Of ContentHandbook 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
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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
