May 11, 2018

FOR IMMEDIATE RELEASE

New Report Says Programs and Services for Children With Disabilities Should Coordinate Care Across Service Sectors, Focus on Long-Term Goals

WASHINGTON – While a variety of services and programs exist to support the needs of children with disabilities and their families, a focus on achieving specific near- and long-term goals that help prepare for adulthood and coordination of care within and across service sectors are integral to encouraging healthy growth and development, says a new report from the National Academies of Sciences, Engineering, and Medicine.  The committee that conducted the study and wrote the report examined federal, state, and local programs and services in a range of areas, such as health care, special education, transition to adulthood, vocational rehabilitation, and social needs care.

Although children with disabilities have a diverse range of health conditions, they share many of the same needs; therefore, the committee used a non-disease-specific approach to assessing programs and services designed to improve children’s outcomes. The life-course perspective acknowledges that early experiences impact later experiences and long-term outcomes, so it is important that near- and long-term goals are linked to the attainment of desired long-term outcomes and that services are individualized based on an assessment of the child’s and family’s specific needs, the report says.  Several other characteristics contribute to the effectiveness of these programs and services, such as engaging children and families in their care, helping them navigate and connect with the array of available supports, and conducting rigorous, systematic evaluation and continuous improvement of services. 

A variety of gaps and limitations create barriers to access and variable quality of services, the report says, such as socio-demographic and socio-economic disparities, state variation in the implementation of federal programs, fragmentation of services, insufficient workforce capacity and development, lack of preparedness for transitioning to adult services and programs, and gaps in continuity of care. The committee identified a number of ways to enhance the provision and quality of programs and services to improve health and functioning outcomes for children with disabilities.

“Service fragmentation places a heavy burden on families of children with disabilities who need access to and coordination of high-quality services,” said committee chair Amy Houtrow, associate professor of physical medicine and rehabilitation and pediatrics at University of Pittsburgh, and vice chair of physical medicine and rehabilitation and chief of the Division of Pediatric Rehabilitation Medicine at Children's Hospital of Pittsburgh.  “Even the most well-resourced and organized families indicate how daunting it is to navigate the various service sectors to ensure that their children get the care they need to thrive.  As a society, we invest a lot in children and youth, and we should make sure those investments also enable children with disabilities to reach their full potential.  We hope that the committee’s efforts to highlight the ample opportunities to improve programs and services will help inform future policy to advance service delivery for all with disabilities and their families.”

Pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary, the report says.  In addition, the evidence base for programs and services aimed at improving outcomes for children with disabilities is limited because of a number of factors, such as limited longitudinal data on health and functioning outcomes, a lack of rigorous evaluation of existing programs and services, and the inability to isolate impacts when children use different programs and services over time as their needs evolve. The committee outlined opportunities to improve the collection and sharing of data and to inform future research efforts on trajectories, outcomes, and interventions, in order to develop innovative and collaborative approaches for promoting healthy growth and development for children with disabilities and supporting their families.

The study was sponsored by the U.S. Social Security Administration.  The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine.  They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.  For more information, visit nationalacademies.org.  A committee roster follows.

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Resources:
Download the report at www.nationalacademies.org/ChildrenwithDisabilities
Report Highlights

Contacts:
Dana Korsen, Media Relations Officer
Andrew Robinson, Media Relations Assistant
Office of News and Public Information
202-334-2138; e-mail news@nas.edu
Newsroom

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Copies of Opportunities for Improving Programs and Services for Children With Disabilities are available from the National Academies Press on the Internet at www.nap.edu or by calling 202-334-3313 or 1-800-624-6242.  Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).

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THE NATIONAL ACADEMIES OF SCIENCES, ENGINEERING, AND MEDICINE

Health and Medicine Division
Board on Health Care Services

Committee on Improving Health Outcomes for Children with Disabilities

Amy Houtrow (chair)
Associate Professor of Physical Medicine and Rehabilitation and Pediatrics
School of Medicine
University of Pittsburgh; and
Vice Chair of Physical Medicine and Rehabilitation, and
Chief, Division of Pediatric Rehabilitation Medicine
Children's Hospital of Pittsburgh
Pittsburgh

Paula Allen-Meares*
Executive Director
Office of Health Literacy, Prevention, and Community Engagement, and
Chancellor Emerita, John Corbally Presidential Professor, and Professor of Medicine
University of Illinois
Chicago

Jay Berry
Assistant Professor of Pediatrics
Harvard Medical School, and
Attending Physician
Complex Care Service
Boston Children’s Hospital
Boston

Claire D. Brindis*
Professor of Pediatrics and Health Policy,
Director
Philip R. Lee Institute for Health Policy Studies, and
Executive Director
National Adolescent and Young Adult Health Information Center
University of California
San Francisco

Stephen M. Camarata
Professor of Hearing and Speech Sciences and Psychiatry, and
Associate Professor of Special Education
Vanderbilt University
Nashville

Wendy Coster
Professor and Chair
Department of Occupational Therapy
Boston University
Boston

Maryann Davis
Research Associate Professor of Psychiatry,
Director
Systems and Psychosocial Advances Research Center, and
Director
Transitions to Adulthood Center for Research
University of Massachusetts Medical School
Worcester

Elena Fuentes-Afflick*
Professor, Vice Chair of Pediatrics, and Vice Dean for Academic Affairs
School of Medicine
University of California
San Francisco

James E. Martin
Zarrow Family Professor and Endowed Chair
Department of Educational Psychology, and
Director
Zarrow Center for Learning Enrichment
University of Oklahoma
Norman

James Perrin*
Professor of Pediatrics
Harvard Medical School;
Associate Chair of Pediatrics
Massachusetts General Hospital for Children; and
John C. Robinson Chair in Pediatrics
Massachusetts General Hospital Center for Child and Adolescent Health Policy
Boston

Ramesh Raghavan
Professor and Associate Dean for Research
School of Social Work
Rutgers University
New Brunswick, N.J.

Karrie Shogren
Professor
Department of Special Education,
Senior Scientist
Life Span Institute, and
Director
Center on Developmental Disabilities
University of Kansas
Lawrence

Ruth E.K. Stein
Professor of Pediatrics
Albert Einstein College of Medicine/Children’s Hospital at Montefiore
New York City

Maureen van Stone
Associate Director
Maryland Center for Developmental Disabilities
Kennedy Krieger Institute
Baltimore

John T. Walkup
Chair
Child and Adolescent Psychiatry
Ann and Robert H. Lurie Children’s Hospital
Chicago

David Wittenburg
Director of Health Research
Mathematica Policy Research Inc.
Princeton, N.J.

STAFF

Frank R. Valliere
Staff Officer

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*Member, National Academy of Medicine