OPPORTUNITIES FOR IMPROVING
PROGRAMS AND SERVICES FOR
CHILDREN WITH DISABILITIES
Committee on Improving Health Outcomes
for Children with Disabilities
Amy J. Houtrow, Frank R. Valliere, and Emily Byers, Editors
Board on Health Care Services
Health and Medicine Division
A Consensus Study Report of
THE NATIONAL ACADEMIES PRESS
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This activity was supported by a contract between the National Academy of Sciences and the U.S. Social Security Administration (#SS00-13-60048/0007). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-47224-1
International Standard Book Number-10: 0-309-47224-5
Digital Object Identifier: https://doi.org/10.17226/25028
Library of Congress Control Number: 2018945651
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Copyright 2018 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for improving programs and services for children with disabilities. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25028.
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COMMITTEE ON IMPROVING HEALTH OUTCOMES FOR CHILDREN WITH DISABILITIES
AMY HOUTROW (Chair), Associate Professor of Physical Medicine and Rehabilitation and Pediatrics, University of Pittsburgh School of Medicine
PAULA ALLEN-MEARES, Professor of Medicine, Executive Director, Office of Health Literacy, College of Medicine, University of Illinois at Chicago
JAY BERRY, Physician, Boston Children’s Hospital, Assistant Professor of Pediatrics, Harvard Medical School
CLAIRE BRINDIS, Professor of Pediatrics and Health Policy, University of California, San Francisco
STEPHEN M. CAMARATA, Professor, Hearing & Speech Sciences, Vanderbilt University
WENDY COSTER, Professor and Chair, Boston University Department of Occupational Therapy
MARYANN DAVIS, Associate Professor, Director, Department of Psychiatry, University of Massachusetts Medical School
ELENA FUENTES-AFFLICK, Professor and Vice Chair of Pediatrics, University of California, San Francisco
JAMES E. MARTIN, Zarrow Family Professor, Department of Educational Psychology, University of Oklahoma
JAMES PERRIN, Professor of Pediatrics, Harvard Medical School; John C. Robinson Chair in Pediatrics, MassGeneral Hospital for Children
RAMESH RAGHAVAN, Professor and Associate Dean for Research, Rutgers University School of Social Work
KARRIE SHOGREN, Professor, Department of Special Education, Kansas University Center on Developmental Disabilities
RUTH E. K. STEIN, Pediatrician and Professor of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore
MAUREEN VAN STONE, Associate Director, Maryland Center for Developmental Disabilities, Kennedy Krieger Institute
JOHN WALKUP, Chair, Department of Psychiatry, Ann and Robert H. Lurie Children’s Hospital of Chicago
DAVID WITTENBURG, Director, Health Research and Senior Researcher, Mathematica Policy Research
FRANK VALLIERE, Study Director
KAREN HELSING, Senior Program Officer
EMILY BYERS, Associate Program Officer (from June 2017)
LAURA VERCAMMEN, Research Associate (through April 2017)
ANNALEE GONZALES, Senior Program Assistant
SHARYL NASS, Director, Board on Health Care Services
HOWARD GOLDMAN, Professor of Psychiatry, School of Medicine, University of Maryland at Baltimore
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report:
Christina D. Bethell, Johns Hopkins Bloomberg School of Public Health
Stephen L. Buka, Brown University School of Public Health
E. Jane Costello, Duke University Medical Center
Crayton A. Fargason, University of Alabama at Birmingham and Children’s of Alabama
Mark L. Gross, U.S. Department of Justice (Retired)
Kelly J. Kelleher, Nationwide Children’s Hospital
Ryan Kellems, Brigham Young University
Valerie Mazzotti, University of Oregon
Mary Jane (MJ) Mulcahey, Thomas Jefferson University
Michelle R. Munson, New York University
Mark Olfson, Columbia University Medical Center
Rhea Paul, Sacred Heart University
Walton Schalick, University of Wisconsin
Donald M. Steinwachs, Johns Hopkins University
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by Georges Benjamin, American Public Health Association, and Sara Rosenbaum, The George Washington University. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
With support from the Social Security Administration (SSA), the National Academies of Sciences, Engineering, and Medicine convened the ad hoc Committee on Improving Health Outcomes for Children with Disabilities. My colleagues on the committee and I were tasked with producing a comprehensive consensus report on programs and services available to children with disabilities. This report was to provide findings and conclusions that would inform future policy, practice, and research and thereby contribute to improving health and functioning outcomes for all children with disabilities, with a particular emphasis on children who receive Supplemental Security Income (SSI) benefits. While the committee felt the enormity of this task, we were privileged to convene as an interdisciplinary team of experts to assess the benefits of programs and services for children with disabilities and to identify opportunities for improving service delivery.
There is no universally accepted definition of childhood disability. Different conceptual frameworks are used by clinicians, researchers, agencies, service providers, and people with disabilities to understand disability and define disability for purposes of program inclusion, classification, and monitoring. This variability posed a challenge for the committee, as it does for children with disabilities and their families, researchers in the field, and policy makers. The committee recognizes that the nature and severity of disability are not determined solely by underlying medical conditions, but are a function of interaction with the physical world, opportunities, policies, available supports, and social role expectations for children. Therefore, the committee defined disability as “an environmentally contextualized
health-related limitation in a child’s existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society.”
The differing definitions of disability on a programmatic level may be appropriate for service allocation and delivery, but the lack of a consistent conceptual framework guiding a harmonized approach to disability solidifies divisions among services and introduces hurdles for families who must navigate between agencies and programs that provide health, education, employment, social, emotional, and financial supports. Various barriers in these arenas often impede the trajectory of a child with disabilities toward independence, autonomy, success, and happiness in adulthood. Programs and services for children with disabilities are not organized for ease of use, and families affirm the challenges of navigating the various systems involved. Notably, there is no one “system” of care for children with disabilities, no organized, unified assemblage of programs and services. The lack of a cohesive network or system means that opportunities to intervene and improve health and functioning are often missed.
The issues of access and unequal access were constant themes during the committee’s deliberations. Although ample evidence shows that specific treatments and models of service delivery improve outcomes, dissemination and uptake of these treatments and care models are inadequate. Additionally, many programs and services fail to conduct rigorous outcomes research, and their results may not be generalizable beyond the populations they serve. Substantial workforce issues exist as well. Wait times to see some types of providers and to receive certain services can be extensive. Consequently, children in less well-resourced communities often cannot access care that would benefit them. For example, children in rural areas frequently must travel considerable distances to access needed services. Thus, their families need to plan several hours for travel, take time off work and away from other family members, and pay transportation expenses they would not face if services were available in their communities. Furthermore, the best care is sometimes simply out of reach, especially when insurance companies limit coverage for out-of-network health services.
Insurance coverage is paramount to ensuring access to needed health care services for children with disabilities, regardless of whether that insurance is privately acquired through a parent’s workplace or publicly provided. If children with disabilities and their families are to fully reap the benefits of the available health care treatments and services, insurance should be continuous, cover needed services and providers, and not be financially burdensome to families. Although considerable gains in insurance adequacy have been realized in recent years, ongoing uncertainties remain; these uncertainties carry important implications for the health and functioning of children with disabilities.
Ideally, the negative impacts of children’s health conditions and disabilities on their well-being would be minimized by high-quality, evidence-based health care in a family-centered medical home. This medical home would lie within a cohesive health neighborhood that included individualized, goal-directed, well-organized, culturally competent, and appropriately delivered treatments, services, educational interventions, and supports that did not burden families financially and were easy to access and use. Furthermore, society would offer ample opportunities for children with disabilities and their families to thrive. Under the best circumstances, children would be supported in reaching their full potential, and families would not experience the negative consequences often associated with disability, such as work loss, chronic stress, poor health, and economic instability. In a fully inclusive and supportive society, the shame associated with disability would not exist; children with disabilities would not disproportionately be the victims of bullying, child abuse and neglect, sexual assault, and other forms of violence; and they and their families would be able to access the supports they needed when they needed them. However, it is essential to acknowledge that even in the best of circumstances, many children with disabilities, especially those with the most severe disabilities, including those on SSI, will remain limited in their ability to do everything other children are able to do because not all disabilities or the associated health conditions can be fully ameliorated or cured. Thus, the continued need for services and supports for children with disabilities should not be viewed as programmatic failure, but instead as an opportunity to further optimize care delivery and improve outcomes.
Children receiving SSI are a small but important subset of children with disabilities. To be eligible for SSI, in addition to meeting income criteria, a child must have “a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” To qualify, the child must have an extreme limitation or at least two limitations that are marked in the areas of acquiring and using information, attending and completing tasks, interacting and relating with others, moving about and manipulating objects, caring for oneself, and health and physical well-being. In January 2018, 1.2 million children, representing 1.6 percent of the total child population, received SSI because of disability. This percentage is much lower than population estimates of childhood disability for two important reasons. First, to receive SSI, children must be income-eligible and meet SSA’s strict definition of severe disability, and second, not all children who are eligible for SSI apply for and are served by the program. It is important to note that the services, supports, and programmatic needs of the children receiving SSI are greater and more intense relative to those of the general
population of children with disabilities because their disabilities are more severe. Mental health–related disabilities, which include neurodevelopmental conditions such as autism and intellectual disability under SSA’s rubric, make up a majority of the disabilities among both children in general and those receiving SSI. Therefore, this report devotes considerable attention to mental health services. The committee notes that the service delivery for mental health care is often separate from the rest of health care, which creates a false dichotomy between mental and general health. Mental health is health. Physical health conditions can influence mental health and vice versa, and physical and mental health conditions often co-occur. Thus, better service integration would help diminish the stigma associated with and improve access to mental health treatment. Additionally, the committee found that certain characteristics of all types of programs and services, such as being goal-directed, individualized, and coordinated with other services, improve their success. While the committee acknowledges the enormous diversity of programs and services with varying objectives and impacts and our inability to catalog them all, we identified numerous actionable opportunities to help improve the health and functioning of children with disabilities. The committee also found in reviewing the evidence that intervening early has larger and more lasting impacts on improving health and functional capacity for children with disabilities. Intervening early can also be more cost-effective and can help avoid more costly interventions, such as inpatient hospital stays.
I would like to express my personal gratitude for the skills and dedication of the individual committee members and for their collective expertise, enthusiasm, and energy. Furthermore, this report could not have been produced without the able support of the staff of the National Academies, particularly Frank Valliere, Emily Byers, Annalee Gonzalez, Karen Helsing, and Laura Vercammen. On behalf of the committee, I would also like to thank Howard H. Goldman for his participation and sage advice. Lastly, our sponsor agency, SSA, and its staff were instrumental not only in funding this initiative but also in articulating their vision for the impact of this report: improving outcomes for children with disabilities. It is my hope that the committee’s efforts will help advance service delivery for this important and vulnerable population.
Amy Houtrow, Chair
Committee on Improving Health Outcomes for Children with Disabilities
The study committee and the Health and Medicine Division project staff take this opportunity to recognize and thank the many individuals who shared their time and expertise to support the committee’s work and inform its deliberations.
This study was sponsored by the Social Security Administration. We thank Gina Clemons, Joyanne Cobb, Joanna Firmin, Thomas Mulherin, David Weaver, and Susan Wilschke for their guidance and support.
The committee benefited greatly from discussions with the individuals who presented at and attended the committee’s open sessions: Johanna Bergan, Gary Blau, Allen Brown, Catherine Fowler, Darcy Gruttadaro, Arun Karpur, Michele Lawler, Peter E. Leone, Laura Owens, Kirstin Painter, Susan L. Parish, Laurie Powers, Rylin Rodgers, Carol G. Ruddell, Carol M. Schall, Debra Waldron, and Linda C. Wolfe. The committee is grateful to these presenters for volunteering to share their expertise, knowledge, data, and opinions not only with the committee but also with the members of the public who participated in the committee’s open sessions. The committee also appreciates the efforts of numerous individuals who assisted project staff in identifying the presenters.
Furthermore, we acknowledge the many staff within the Health and Medicine Division who provided support in various ways to this project, including Daniel Bearss, Clyde Behney, Patrick Burke, David Butler, Rick Erdtmann, Jennifer Flaubert, Greta Gorman, Nicole Gormley, Dana Korsen, Rebecca Morgan, Elisabeth Reese, Bettina Ritter, Lauren Shern,
Julie Wiltshire, and Taryn Young. The committee extends great thanks and appreciation to the Health and Medicine Division board director who oversaw the project: Sharyl Nass, Board on Health Care Services. Finally, Rona Brière and Alisa Decatur are to be credited for the superb editorial assistance they provided in preparing the final report.
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Boxes, Figures, and Tables
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American Academy of Pediatrics
applied behavior analysis
Achieving a Better Life Experience Act of 2014
Patient Protection and Affordable Care Act
Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities
Administration for Community Living
Americans with Disabilities Act
attention-deficit hyperactivity disorder
Aid to Families with Dependent Children
Agency for Healthcare Research and Quality
Administration on Intellectual and Developmental Disabilities
American Psychological Association
autism spectrum disorder
Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services
Achieving Success by Promoting Readiness for Education and Employment
assistive technology services
Centers for Disease Control and Prevention
Community Disability Review
Code of Federal Regulations
Children’s Health Insurance Program
Children’s Health Insurance Program Reauthorization Act of 2009
Centers for Independent Living
children with medical complexity
Community Mental Health Centers
Centers for Medicare & Medicaid Services
Council of Parent Attorneys and Advocates, Inc.
children with special health care needs
Developmental Disabilities Assistance and Bill of Rights Act of 2000
Education for All Handicapped Children Act
Department of Education
EDFacts Data Warehouse
Early and Periodic Screening, Diagnostic, and Treatment
Education Resources Information Center
education savings account
|FAPE||free and appropriate public education|
federal poverty level
Federal Partners in Transition
|GAO||Government Accountability Office|
General Equivalency Diploma
|HCBS||home and community-based services|
Department of Health and Human Services
Health Insurance Portability and Accountability Act of 1996
human immunodeficiency virus
Health Resources and Services Administration
Department of Housing and Urban Development
|ICF||International Classification of Functioning, Disability and Health|
Individuals with Disabilities Education Act
individualized education program
individualized family service plan
Institute of Medicine
individual placement and support services
Internal Revenue Service
|JAMA||Journal of the American Medical Association|
|KFF||Kaiser Family Foundation|
|LEA||Local Education Agency|
Leadership Education in Neurodevelopmental and Related Disabilities
Long Island Advocacy Center
least restrictive environment
|MAX||Medicaid Analytic eXtract Study|
Maternal and Child Health Bureau
managed care organization
major depressive disorder
model development program
Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008
Multi-Tiered System of Supports
|NAMI||National Alliance on Mental Illness|
National Center on Birth Defects and Developmental Disabilities
National Center on Criminal Justice & Disability
National Council on Disability
National Council on Independent Living
National Center for Mental Health in Schools
National Center for Medical-Legal Partnership
National Comorbidity Survey Adolescent Supplement
National Council for Special Education Research
National Conference of State Legislatures
National Health and Nutrition Examination Survey
National Health Interview Survey
National Institute on Drug Abuse
National Institute on Disability, Independent Living, and Rehabilitation Research
National Institutes of Health
National Institute of Mental Health
New Jersey Department of Education
national outcome measure
National Research Council
National Survey of Children’s Health
National Survey of Children with Special Health Care Needs
National Survey on Drug Use and Health
National Secondary Transition Technical Assistance Center
National Technical Assistance Center on Transition
Neuromotor Task Training
|OCR||Office for Civil Rights|
Office of the Surgeon General
Oregon Youth Authority
|P&A||State Protection and Advocacy System|
Protection and Advocacy for Assistive Technology program
Protection and Advocacy for Individuals with Developmental Disabilities program
Peer Assisted Learning Strategies
Primary and Behavioral Health Care Integration Grant Program
positive behavioral interventions and supports
patient-centered medical home
performance improvement project
Project Rental Assistance
Promoting Readiness of Minors in Supplemental Security Income
Personal Responsibility and Work Opportunity Reconciliation Act of 1996
posttraumatic stress disorder
|RCT||randomized controlled trial|
Rehabitation Services Administration
|SAMHSA||Substance Abuse and Mental Health Services Administration|
screening, briefing, and referral to treatment
Self-Determined Learning Model of Instruction
substantial gainful activity
School Health Advisory Board
serious mental illness
Social Rehabilitation Service
Social Security Administration
Social Security Disability Insurance
Supplemental Security Income
sexually transmitted infection
substance use disorder
Transition Assessment and Goal Generator
Temporary Assistance for Needy Families
Tax Equity and Fiscal Responsibility Act of 1982
Ticket to Work and Workforce Incentives Improvement Act of 1999
|UCEDD||University Centers for Excellence in Developmental Disabilities in Education, Research, and Service|
|WDB||workforce development board|
World Health Organization
Workforce Innovation and Opportunity Act
|YTD||Youth Transition Demonstration|
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