Ensuring Quality and Accessible
Care for Children
with Disabilities and Complex Health
and Educational Needs
Proceedings of a Workshop
Steve Olson, Rapporteur
Forum on Promoting Children’s Cognitive,
Affective, and Behavioral Health
Board on Children, Youth, and Families
Division of Behavioral and Social Sciences and Education
and
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the American Academy of Pediatrics (unnumbered award); the American Board of Pediatrics (unnumbered award); the Assistant Secretary for Planning and Evaluation (HHSP23337021); Autism Speaks (unnumbered award); the Centers for Disease Control and Prevention (200-2011-38807, TO #16); the Conrad N. Hilton Foundation (20150118); the Department of Justice Office of Juvenile Justice and Delinquency Prevention (2013-MU-MU-0002); the National Institutes of Health (HHSN26300035); the Robert Wood Johnson Foundation (71071); and the Substance Abuse and Mental Health Services Administration (HHSP23337029). The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. Additional support came from the American Orthopsychiatric Association, the American Psychological Association, the Community Anti-Drug Coalitions of America, the Hogg Foundation for Mental Health, the Society for Child and Family Policy and Practice, the Society of Clinical Child and Adolescent Psychology, and the Society of Pediatric Psychology.
International Standard Book Number-13: 978-0-309-44769-0
International Standard Book Number-10: 0-309-44769-0
Digital Object Identifier: 10.17226/23598
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. (2016). Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23598.
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PLANNING COMMITTEE FOR THE WORKSHOP ON ENSURING QUALITY AND ACCESSIBLE CARE FOR CHILDREN WITH DISABILITIES AND COMPLEX HEALTH AND MEDICAL NEEDS
ANDY SHIH (Cochair), Autism Speaks
DONALD WERTLIEB (Cochair), American Orthopsychiatric Association; Department of Child Development, Tufts University (professor emeritus)
WILLIAM R. BEARDSLEE, Baer Prevention Initiatives; Department of Psychiatry (chairman emeritus), Boston Children’s Hospital; Department of Child Psychiatry, Harvard Medical School
KIRSTEN BERONIO, Division of Behavioral Health and Intellectual Disabilities Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
GARY BLAU, Child, Adolescent, and Family Branch, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration
THOMAS F. BOAT, Department of Pediatrics, University of Cincinnati College of Medicine (dean emeritus); Cincinnati Children’s Hospital Medical Center
C. HENDRICKS BROWN, Departments of Psychiatry and Behavioral Sciences, Preventive Medicine, and Medical Social Sciences, Feinberg School of Medicine, Northwestern University
AMY GOLDSTEIN, National Institute of Mental Health, National Institutes of Health
LISA GORING, Autism Speaks
J. DAVID HAWKINS, School of Social Work, University of Washington
KELLY J. KELLEHER, Center for Innovation in Pediatric Practice and Health Services Research, The Research Institute at Nationwide Children’s Hospital
LAUREL K. LESLIE, American Board of Pediatrics; Department of Medicine and Pediatrics, Tufts University School of Medicine
MARY ANN McCABE, Society for Child and Family Policy and Practice; Society of Pediatric Psychology; Department of Pediatrics, School of Medicine, George Washington University; Department of Psychology, George Mason University
CRAIG J. NEWSCHAFFER, A.J. Drexel Autism Institute, School of Public Health, Drexel University
PAT SHEA, Office of Technical Assistance, National Association of State Mental Health Program Directors
STEPHEN SHORE, Department of Education, Ruth S. Ammon School of Education, Adelphi University
JENNIFER TYSON, Office of Juvenile Justice and Delinquency Prevention, U.S. Department of Justice
FORUM ON PROMOTING CHILDREN’S COGNITIVE, AFFECTIVE, AND BEHAVIORAL HEALTH
WILLIAM R. BEARDSLEE (Cochair), Baer Prevention Initiatives; Department of Psychiatry (chairman emeritus), Boston Children’s Hospital; Department of Child Psychiatry, Harvard Medical School
C. HENDRICKS BROWN (Cochair), Departments of Psychiatry, Behavioral Sciences, and Preventive Medicine, Feinberg School of Medicine, Northwestern University
KAREEMAH ABDULLAH, National Community Anti-Drug Coalition Institute; Training Operations, Community Anti-Drug Coalitions of America
DARA BLACHMAN-DEMNER, Crime, Violence, and Victimization Research Division, National Institute of Justice
THOMAS F. BOAT, Department of Pediatrics, University of Cincinnati College of Medicine (dean emeritus); Cincinnati Children’s Hospital Medical Center
FELESIA R. BOWEN, Center for Urban Youth and Families and School of Nursing, Rutgers, The State University of New Jersey
DAVID A. BRENT, Department of Child and Adolescent Psychiatry, Pediatrics, and Epidemiology, School of Medicine, University of Pittsburgh
LAUREN CALDWELL, Children, Youth, and Families Office; Public Interest Directorate, American Psychological Association
WILMA P. CROSS, Office of Disease Prevention, National Institutes of Health
ALEXA EGGLESTON, Conrad N. Hilton Foundation
RICHARD G. FRANK, Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
AMY GOLDSTEIN, National Institute of Mental Health, National Institutes of Health
COSTELLA GREEN, Center for Substance Abuse Prevention, Division of Community Programs, Substance Abuse and Mental Health Services Administration
RICK HARWOOD, National Association of State Alcohol and Drug Abuse Directors
J. DAVID HAWKINS, School of Social Work, University of Washington
KIMBERLY E. HOAGWOOD, Society of Clinical Child and Adolescent Psychology; American Psychological Association; Department of Child and Adolescent Psychiatry, School of Medicine, New York University
COLLEEN HORTON, Hogg Foundation for Mental Health, University of Texas at Austin
JENNIFER KAMINSKI, Division of Human Development and Disability, Centers for Disease Control and Prevention
KELLY J. KELLEHER, Center for Innovation in Pediatric Practice and Health Services Research, The Research Institute at Nationwide Children’s Hospital
UMA KOTAGAL, Quality, Safety and Transformation and James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center
LAUREL K. LESLIE, American Board of Pediatrics; Department of Medicine and Pediatrics, Tufts University School of Medicine
MARY ANN McCABE, Society for Child and Family Policy and Practice; Society of Pediatric Psychology; Department of Pediatrics, School of Medicine, George Washington University; Department of Psychology, George Mason University
JENNIFER NG’ANDU, Robert Wood Johnson Foundation
JENNIFER OPPENHEIM, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration
LAWRENCE A. PALINKAS, Department of Social Policy and Health and Behavior and School of Social Work, University of Southern California
EVE E. REIDER, National Center for Complementary and Integrative Health, National Institutes of Health
MARY JANE ROTHERAM-BORUS, Department of Child Psychiatry and Biobehavioral Sciences; Global Center for Children and Families and Center for HIV Identification Prevention and Treatment Services, Department of Psychiatry, University of California, Los Angeles
PAT SHEA, Office of Technical Assistance, National Association of State Mental Health Program Directors
ANDY SHIH, Autism Speaks
BELINDA SIMS, Prevention Research Branch, Division of Epidemiology, Services, and Prevention Research, National Institute on Drug Abuse, National Institutes of Health
JOSÉ SZAPOCZNIK, Department of Public Health Sciences, Miami Clinical Translational Science Institute, Center for Family Studies, University of Miami
VERA FRANCIS “FAN” TAIT, Department of Child Health and Wellness, American Academy of Pediatrics
JENNIFER TYSON, Office of Juvenile Justice and Delinquency Prevention, U.S. Department of Justice
DONALD WERTLIEB, American Orthopsychiatric Association; Department of Child Development (professor emeritus), Tufts University
Project Staff
WENDY KEENAN, Forum Director
NOAM I. KEREN, Research Associate
SARAH M. TRACEY, Research Associate
ANTHONY JANIFER, Senior Program Assistant
PAMELLA ATAYI, Administrative Assistant
ANITA LU, Intern, Massachusetts Institute of Technology (May-July 2015)
ALIA SANI, Intern, Duke University (May-July 2015)
NATACHA BLAIN, Director, Board on Children, Youth, and Families
Acknowledgments
This Proceedings of a Workshop has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the Report Review Committee of the National Academies of Sciences, Engineering, and Medicine. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published proceedings as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this report: Daniel Crimmins, Center for Leadership in Disability, School of Public Health, Georgia State University; Costella Denise Green, Center for Substance Abuse Prevention, Division of Community Programs, Substance Abuse and Mental Health Services Administration; Akilah Heggs, Center for Leadership in Disability, School of Public Health, Georgia State University; and Marshall L. Land, Jr., Department of Pediatrics, University of Vermont College of Medicine.
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft of the proceedings before its release. The review of this report was overseen by Patrick H. Deleon, F. Edward Hebert School of Medicine and the Graduate School of Nursing, Uniformed Services University of the Health Sciences. Appointed by the National Academies, they were responsible for making certain that an
independent examination of this proceedings was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this proceedings rests entirely with the rapporteur and the institution.
The National Academies’ planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. Its forums and roundtables do not issue, review, or approve individual documents.
Contents
1 Introduction and Overview of the Workshop
2 Perspectives from Individuals and Family Members
3 Disability Names and Numbers
4 Children with Serious Medical Conditions and the Behavioral Health Implications
5 Early Identification and Interventions for Developmental Disabilities Emerging in Childhood
7 Media and Public Perceptions and Misperceptions of Children with Disabilities
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