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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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

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THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

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
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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.

Suggested Citation:"Front Matter." 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: 10.17226/25028.
×

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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

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The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." 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: 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

Staff

FRANK VALLIERE, Study Director

KAREN HELSING, Senior Program Officer

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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

Consultant

HOWARD GOLDMAN, Professor of Psychiatry, School of Medicine, University of Maryland at Baltimore

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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Reviewers

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

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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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.

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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Preface

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

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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.

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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

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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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Acknowledgments

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,

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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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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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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Acronyms and Abbreviations

AAP

American Academy of Pediatrics

ABA

applied behavior analysis

ABLE

Achieving a Better Life Experience Act of 2014

ACA

Patient Protection and Affordable Care Act

ACICIEID

Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities

ACL

Administration for Community Living

ADA

Americans with Disabilities Act

ADHD

attention-deficit hyperactivity disorder

AFDC

Aid to Families with Dependent Children

AHRQ

Agency for Healthcare Research and Quality

AIDD

Administration on Intellectual and Developmental Disabilities

APA

American Psychological Association

ASD

autism spectrum disorder

ASPE

Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services

ASPIRE

Achieving Success by Promoting Readiness for Education and Employment

ATS

assistive technology services

CBT cognitive-behavioral therapy
CDC

Centers for Disease Control and Prevention

CDR

Community Disability Review

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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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CFR

Code of Federal Regulations

CHIP

Children’s Health Insurance Program

CHIPRA

Children’s Health Insurance Program Reauthorization Act of 2009

CIL

Centers for Independent Living

CMC

children with medical complexity

CMHC

Community Mental Health Centers

CMS

Centers for Medicare & Medicaid Services

COPAA

Council of Parent Attorneys and Advocates, Inc.

CSHCN

children with special health care needs

DD Act

Developmental Disabilities Assistance and Bill of Rights Act of 2000

EAHCA

Education for All Handicapped Children Act

ED

Department of Education

EDW

EDFacts Data Warehouse

EPSDT

Early and Periodic Screening, Diagnostic, and Treatment

ERIC

Education Resources Information Center

ESA

education savings account

FAPE free and appropriate public education
FPL

federal poverty level

FPT

Federal Partners in Transition

FY

fiscal year

GAO Government Accountability Office
GED

General Equivalency Diploma

HCBS home and community-based services
HHS

Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act of 1996

HIV

human immunodeficiency virus

HRSA

Health Resources and Services Administration

HUD

Department of Housing and Urban Development

ICF International Classification of Functioning, Disability and Health
IDEA

Individuals with Disabilities Education Act

IEP

individualized education program

IFSP

individualized family service plan

IOM

Institute of Medicine

Suggested Citation:"Front Matter." 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: 10.17226/25028.
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IPS

individual placement and support services

IRS

Internal Revenue Service

JAMA Journal of the American Medical Association
KFF Kaiser Family Foundation
LEA Local Education Agency
LEND

Leadership Education in Neurodevelopmental and Related Disabilities

LIAC

Long Island Advocacy Center

LRE

least restrictive environment

MAX Medicaid Analytic eXtract Study
MCHB

Maternal and Child Health Bureau

MCO

managed care organization

MDD

major depressive disorder

MDP

model development program

MHPAEA

Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008

MLP

medical–legal partnership

MST

Multi-Systemic Therapy

MTSS

Multi-Tiered System of Supports

NAMI National Alliance on Mental Illness
NCBDDD

National Center on Birth Defects and Developmental Disabilities

NCCJD

National Center on Criminal Justice & Disability

NCD

National Council on Disability

NCIL

National Council on Independent Living

NCMHIS

National Center for Mental Health in Schools

NCMLP

National Center for Medical-Legal Partnership

NCS-A

National Comorbidity Survey Adolescent Supplement

NCSER

National Council for Special Education Research

NCSL

National Conference of State Legislatures

NHANES

National Health and Nutrition Examination Survey

NHIS

National Health Interview Survey

NIDA

National Institute on Drug Abuse

NIDILRR

National Institute on Disability, Independent Living, and Rehabilitation Research

NIH

National Institutes of Health

NIMH

National Institute of Mental Health

NJ DOE

New Jersey Department of Education

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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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NOM

national outcome measure

NRC

National Research Council

NSCH

National Survey of Children’s Health

NS-CSHCN

National Survey of Children with Special Health Care Needs

NSDUH

National Survey on Drug Use and Health

NSTTAC

National Secondary Transition Technical Assistance Center

NTACT

National Technical Assistance Center on Transition

NTT

Neuromotor Task Training

OCR Office for Civil Rights
OSG

Office of the Surgeon General

OYA

Oregon Youth Authority

P&A State Protection and Advocacy System
PA

physical activity

PAAT

Protection and Advocacy for Assistive Technology program

PADD

Protection and Advocacy for Individuals with Developmental Disabilities program

PALS

Peer Assisted Learning Strategies

PBHCI

Primary and Behavioral Health Care Integration Grant Program

PBIS

positive behavioral interventions and supports

PCMH

patient-centered medical home

PIP

performance improvement project

PRA

Project Rental Assistance

PROMISE

Promoting Readiness of Minors in Supplemental Security Income

PRWORA

Personal Responsibility and Work Opportunity Reconciliation Act of 1996

PTSD

posttraumatic stress disorder

RCT randomized controlled trial
RSA

Rehabitation Services Administration

RTI

response-to-intervention

SAMHSA Substance Abuse and Mental Health Services Administration
SBIRT

screening, briefing, and referral to treatment

SDLMI

Self-Determined Learning Model of Instruction

SGA

substantial gainful activity

SHAB

School Health Advisory Board

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Suggested Citation:"Front Matter." 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: 10.17226/25028.
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SMI

serious mental illness

SRS

Social Rehabilitation Service

SSA

Social Security Administration

SSDI

Social Security Disability Insurance

SSI

Supplemental Security Income

STI

sexually transmitted infection

SUD

substance use disorder

TA technical assistance
TAGG

Transition Assessment and Goal Generator

TANF

Temporary Assistance for Needy Families

TEFRA

Tax Equity and Fiscal Responsibility Act of 1982

TWWIIA

Ticket to Work and Workforce Incentives Improvement Act of 1999

UCEDD University Centers for Excellence in Developmental Disabilities in Education, Research, and Service
VR vocational rehabilitation
WDB workforce development board
WHO

World Health Organization

WIOA

Workforce Innovation and Opportunity Act

YTD Youth Transition Demonstration
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Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children’s usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children’s social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data.

Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

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