Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: A Workshop

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Children with disabilities and complex medical and educational needs present a special challenge for policy makers and practitioners. These children exhibit tremendous heterogeneity in their conditions and needs, requiring a varied array of services to meet those needs. Uneven public and professional awareness of their conditions and a research base marked by significant gaps have led to programs, practices, and policies that are inconsistent in quality and coverage. Parents often have to navigate and coordinate, largely on their own, a variety of social, medical, and educational support services, adding to the already daunting financial, logistical, and emotional challenges of raising children with special needs. The unmet needs of children with disabilities and complex medical and educational needs can cause great suffering for these children and for those who love and care for them.

To examine how systems can be configured to meet the needs of children and families as they struggle with disabilities and complex health and educational needs, the National Academies of Sciences, Engineering, and Medicine held a workshop in December 2015. The goal of the workshop was to highlight the main barriers and promising solutions for improving care and outcome of children with complex medical and educational needs. Workshop participants examined prevention, care, service coordination, and other topics relevant to children with disabilities and complex health and educational needs, along with their families and caregivers. More broadly, the workshop seeks actionable understanding on key research questions for enhancing the evidence base; promoting and sustaining the quality, accessibility, and use of relevant programs and services; and informing relevant policy development and implementation. By engaging in dialogue to connect the prevention, treatment, and implementation sciences with settings where children are seen and cared for, the forum seeks to improve the lives of children by improving the systems that affect those children and their families. This publications summarizes the presentations and discussions from the workshop.

Publication information

114 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-44769-0
ISBN Ebook: 0-309-44770-4
DOI: https://doi.org/10.17226/23598

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.

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Andy Shih

Andy Shih, is senior vice president of scientific affairs at Autism Speaks. He works closely with members of Autism Speaks' Board, Scientific Advisory Committee, senior staff and volunteer leadership to develop and implement the organization's research program. He oversees the etiology portfolio, which includes genetics, environmental sciences and epidemiology, as well as the Innovative Technology for Autism program, which supports the research and development of novel assistive technologies. Dr. Shih also leads Autism Speaks' international scientific development efforts, including the Global Autism Public Health Initiative, an international advocacy effort currently active in over 45 countries around the world that integrates awareness, research, and service development. His team serves as facilitators and technical advisors to community stakeholders, including government ministries, professional societies and advocacy organizations. Dr. Shih joined the National Alliance for Autism Research (NAAR) in 2002, an autism science organization that merged with Autism Speaks in 2006. Prior to joining NAAR, he served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. Dr. Shih's research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.

Donald Wertlieb

Donald Wertlieb, is past president of the American Orthopsychiatric Association and current president of the Partnership for Early Childhood Development and Disability Rights. He is professor emeritus and former chair of the Eliot-Pearson Department of Child Development at Tufts University. Internationally, Dr. Wertlieb’s work emphasizes collaboration in the development of mental health and integrated human services frameworks, with particular attention to fostering resiliency for children and families placed at risk. Notable are partnership projects in Haifa, Israel (Mercaz Gil Center for Learning) and in Dnepropetrovsk, Ukraine (Educational Resource Center for Children with Disabilities). Dr. Wertlieb is a pediatric psychologist whose major research interest has been in understanding the complex processes by which children and families cope with the stressors such as marital separation and divorce, chronic illness and disability, and complex social change. In addition, he is committed to dissemination of research to policy makers and the public. He served on the steering group of the National Forum on the Future of Children and Families (1992-1993), a joint program of the National Academy of Science’s Commission on Behavioral and Social Sciences and Education and the Institute of Medicine. Dr. Wertlieb was president of the Society of Pediatric Psychology (1996-1999), a professional membership organization of over 1000 scholars and practitioners committed to the improvement of health care research and services for children and families. He earned his Ph.D. in pediatric psychology from Boston University.

William R. Beardslee

William Beardslee, is the Gardner-Monks professor of child psychiatry at Children’s Hospital Boston. He also directs the Preventive Intervention Project and Prevention of Depression Study at Judge Baker Children's Center. Dr. Beardslee's long-standing research interest has centered on the development of children who are at risk due to severe parental mental illness and focuses on the ways in which self-understanding helps individuals cope with adversity. He studied resilience in survivors of cancer and in children of depressed parents that led to the development of effective public health interventions for families facing depression, and a ten year randomized trial examination of the two strategies which showed that they were safe and led to lasting gains. This approach has since received high ratings and is being disseminated in the United States as well as in numerous countries around the world. Dr. Beardslee is currently directing a long-range study at Judge Baker that explores the effects of clinician-facilitated, family-based preventive intervention. This research is designed to gauge the impact of direct intervention and measure its ability to enhance resilience and family understanding for children of parents with affective disorder. Dr. Beardslee was a member of numerous NRC and IOM committees, including the Committee on Depression, Parenting Practices, and the Healthy Development of Young Children; Committee on Prevention of Mental Disorders and Substance Abuse Among Children, Youth, and Young Adults: Research Advances and Promising Interventions; and Committee on Adolescent Health and Development. He was also a member of the NRC/IOM Board on Children, Youth and Families. He received his M.D. in psychiatry from Case Western Reserve University School of Medicine.

Kirsten Beronio

Kirsten Beronio, is director of the Division of Behavioral Health and Intellectual Disabilities Policy in the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation. In this role, Ms. Beronio advises agency leadership on behavioral health policy issues regarding the implementation of new programs and new legislative requirements, oversight of existing HHS programs, development of regulations and sub-regulatory guidance, and issuance of public statements including through reports to Congress. She designs and oversees research projects by contractors addressing current federal behavioral health policy issues. Ms. Beronio was previously vice president of public policy and advocacy at Mental Health America (MHA), a community-based nonprofit dedicated to addressing the needs of those living with mental illness and to promoting the overall mental health of all Americans. While at MHA, she was responsible for determining and advocating for the organization’s federal policy priorities, in particular, around access to treatment through Medicare and Medicaid as well as health care reform legislation She received her J.D. from Georgetown University.

Gary Blau

Gary Blau, is a clinical psychologist and chief of the Child, Adolescent and Family Branch of the Center for Mental Health Services at Substance Abuse and Mental Health Services Administration. In this role, he provides national leadership for children's mental health and for creating systems of care across the country. Prior to this, Dr. Blau was bureau chief of quality management and director of mental health at the Connecticut Department of Children and Families and director of clinical services at the Child and Family Agency of Southeastern Connecticut. He also holds a clinical faculty appointment at the Yale Child Study Center. Dr. Blau has numerous journal publications and has been the editor of several books, including the Handbook of Childhood Behavioral Issues: Evidence-Based Approaches to Prevention and Treatment (2008), Family Influences on Childhood Behavior and Development (2008), and The System of Care Handbook: Transforming Mental Health Services for Children, Youth, and Families (2008). He received his Ph.D. in clinical psychology from Auburn University.

Thomas F. Boat

Thomas Boat, is professor of pediatrics at Cincinnati Children's Hospital Medical Center and Dean Emeritus at the University of Cincinnati College of Medicine. A pediatric pulmonologist by training, Dr. Boat worked early in his career to define the pathophysiology of airway dysfunction and more effective therapies for chronic lung diseases of childhood, such as cystic fibrosis. More recently he has worked at local and national levels to improve research efforts, subspecialty training and clinical care delivery. He has a special interest in issues posed by children’s behavioral health to pediatric care. Dr. Boat is a member of the National Academy of Medicine (NAM), and recently served as chair of the IOM Committee to Evaluate the Supplemental Security Income Disability Program for Children with Mental Disorders, as well as member of the NRC-IOM Board on Children, Youth, and Families. He received an M.D. from the University of Iowa.

C. H. Brown

C. Hendricks Brown, is professor of psychiatry, behavioral sciences, and preventive medicine in the Feinberg School of Medicine at Northwestern University. Prior to that, Dr. Brown held professorships at the University of Miami Miller School of Medicine and the University of South Florida College of Public Health. Dr. Brown is also a senior research scholar at the American Institutes for Research and a collaborating senior scientist at the Oregon Center for Research to Practice. His work is primarily in the development of statistical methods for the design and analysis of preventive and early intervention field trials. As director of the Prevention Science and Methodology Group, Dr. Brown leads a national network of 120 scientists and methodologists who are working on the design of preventive field trials and their analysis, particularly with advanced techniques for growth analysis and for missing data. He is also the co-director of the multi-site Center for Integrating Education and Prevention in Schools to conduct a third large-scale randomized field trial in Baltimore. He co-directs a randomized trial of 32 schools to evaluate the use of a gatekeeper training program to prevent suicide in middle and high schools, a randomized trial of the Sources of Strength suicide prevention program being conducted in three states, a randomized trial of a first-grade classroom behavior and curriculum intervention to prevent drug abuse, and a randomized trial of 40 counties in California to test the dissemination of an evidence-based foster care program. He also co-directs a study to examine variation in preventive effects within and across sites from the United States and the European Union. Dr. Brown has been a member of numerous NRC and IOM committees, including the Committee on Prevention of Mental Disorders and Substance Abuse Among Children, Youth, and Young Adults: Research Advances and Promising Interventions. He received his Ph.D. in statistics from the University of Chicago.

Amy Goldstein

Amy Goldstein, is associate director for prevention at the National Institute of Mental Health, National Institutes of Health. She is a clinical child psychologist whose expertise and interests lie in the areas of prevention science, school based mental health services, emergency psychiatry, suicide prevention, and psychological assessment. Her career focuses on the execution of and participate in high impact projects to improve the outcomes and trajectories of children and youth at-risk for mental illness. She received her Ph.D. in clinical psychology from Case Western University.

Lisa Goring

Lisa Goring is the director of family services at Autism Speaks. Under her leadership, Family Services became the fourth pillar of the organization’s mission in 2007. In order to meet the needs of individuals with autism and their families, Ms. Goring and her team have developed a wide array of resources and tools for families including a Resource Guide of over 50,000 local resources across the United States, an Autism Response Team to answer phone calls and emails from families looking for resources, and a variety of tool kits such as the 100 Day Kit for newly diagnosed families, a School Community Tool Kit, a Transition Tool Kit for families of individuals entering adulthood, an Employment Tool Kit to assist adults on the spectrum with finding a job and more. In addition, Lisa has implemented several grant programs over the years to expand services for people with autism and to increase the field of providers serving the autism community. In her role at Autism Speaks, Lisa has appeared on various media outlets including the Today Show, CNBC’s Squawk Box, Nightly News with Brian Williams, CBS News, CNN, and more. She is a past president of her local School Community Association, has participated on many special education committees, is a frequent parent member of the committee on special education in her school district. Ms. Goring has presented at several autism conferences and has worked as a teaching assistant at Nassau Suffolk Services for Autism's Martin C. Barell School. She received her B.S. in business administration from Boston University.

J. David Hawkins

J. David Hawkins, is the endowed professor of prevention and founding director of the Social Development Research Group in the School of Social Work at the University of Washington. His research focuses on understanding and preventing child and adolescent health and behavior problems. He seeks to identify risk and protective factors for health and behavior problems across multiple domains; to understand how these factors interact in the development or prevention of problem behaviors; and to test comprehensive prevention strategies which seek to reduce risk through the enhancement of strengths and protective factors in families, schools, peer groups and communities. Dr. Hawkins is the co-developer of the “Communities That Care” prevention system, the “Guiding Good Choices, Preparing for School Success, and Staying Connected with Your Teen” parenting programs, and co-developer of the “Social Development Model,” a theory which provides a foundation for positive development and delinquency and drug abuse prevention. Dr. Hawkins is a current member of the National Academies Board on Children, Youth and Families and served on its Committee on Prevention of Mental Disorders that produced the report Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. He earned his Ph.D. in sociology from Northwestern University.

Kelly Kelleher

Kelly Kelleher, is director of the Center for Innovation in Pediatric Practice and vice president of Health Services Research at The Research Institute at Nationwide Children's Hospital. Dr. Kelleher is also professor in the Department of Pediatrics of The Ohio State University College of Medicine. A pediatrician by training, Dr. Kelleher’s research interests focus on accessibility, effectiveness and quality of health care services for children and their families, especially those affected by mental disorders, substance abuse or violence. He has a longstanding interest in formal outcomes research for mental health and substance abuse services. He earned his M.D. from The Ohio State University.

Laurel K. Leslie

Laurel Leslie, is a behavioral-developmental pediatrician and professor of medicine, pediatrics, and community medicine and public health at Tufts University School of Medicine. She is committed to research that addresses the research-policy-practice interface and directs the Program for Aligning Researchers and Communities at Tufts Clinical and Translational Science Institute. Dr. Leslie is also associate director for the American Academy of Pediatrics’ Pediatric Research in Office Settings Network. Her research interests focus on the identification and treatment of developmental and mental health needs of children and adolescents across the health, mental health, and school sectors. Dr. Leslie maintains an active interest in defining the future of pediatric practice and education. She is a member of the board of directors for the American Board of Pediatrics. She earned her M.D. in pediatrics from The University of North Carolina at Chapel Hill.

Mary Ann McCabe

Mary Ann McCabe, is associate clinical professor of pediatrics at the George Washington University School of Medicine and affiliate faculty in applied developmental psychology at George Mason University. She is also a clinical psychologist and consultant in independent practice. Dr. McCabe is president of the Society for Child and Family Policy and Practice and a member of a task force on integrated care for the Society of Pediatric Psychology. She led the planning of two national interdisciplinary summits on child mental health in 2009 and 2013. Most recently Dr. McCabe was director of the Office for Policy and Communications for the Society for Research in Child Development (SRCD) where she oversaw bridging research with policy and practice and directed the SRCD Congressional and Executive Branch policy fellowship programs. Previously, she was the director of health psychology and director of training in psychology at Children’s National Medical Center. Her areas of research and writing have focused in neuropsychological and behavioral sequelae of medical treatments in children, as well as minors' capacity for involvement in decision making about medical and mental health treatment and research. She earned her Ph.D. in clinical psychology from Catholic University of America.

Criag Newschaffer

Craig Newschaffer, is founding director of the A.J. Drexel Autism Institute at Drexel University and professor in the Department of Epidemiology and Biostatistics at the Drexel University School of Public Health. Dr. Newschaffer is an epidemiologist whose main research focus is the discovery of modifiable autism risk factors. He is principal investigator of an NIH Autism Centers of Excellence research network that implements the “Early Autism Risk Longitudinal Investigation,” a large cohort study designed specifically to study pre, peri- and neonatal autism risk factors and biomarkers by following mothers of children with autism at the start of subsequent pregnancies. Dr. Newschaffer has also been a site PI on several other major autism epidemiology initiatives, including both the Autism and Developmental Disabilities Monitoring Network and Study to Explore Early Development. He currently leads a project exploring innovative approaches to autism case confirmation for the National Children’s Study. Dr. Newschaffer is a fellow of the American College of Epidemiology and serves as an associate editor of the American Journal of Epidemiology and on the editorial boards of Autism Research and the Journal of Neurodevelopmental Disorders. He received his Ph.D. in chronic disease epidemiology from Johns Hopkins University.

Pat Shea

Pat Shea, is deputy director of the Office of Technical Assistance at the National Association of State Mental Health Program Directors (NASMHPD) where she is responsible for coordinating a wide range of training and consultation services to states and communities on policies, programs, and activities that support improved service delivery and outcomes for persons served via the public mental health and related social service systems. Ms. Shea also oversees the NASMHPD Prevention Center which she established in 2011 as a resource to increase awareness of practices that promote well-being and reduce the risks for the onset of behavioral health problems. Previously, Ms. Shea worked at the Center for Mental Health Services (Substance Abuse and Mental Health Services Administration) where she participated in the development and oversight of federal initiatives designed to support healthy youth development; prevent youth violence and suicide; and improves state systems for serving persons with or at risk for mental health problems. She holds both a master of arts degree and a master of social work.

Steven Shore

Stephen Shore, is assistant professor of education in the Ruth S. Ammon School of Education at Adelphi University. His research focuses on matching best practice to the needs of people with autism. In addition to working with children and talking about life on the autism spectrum, Dr. Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies, and the newly released DVD Living along the Autism Spectrum: What it means to have Autism or Asperger Syndrome. Dr. Shore is president emeritus of the Asperger’s Association of New England and former board member of the Autism Society, and serves in the Interagency Autism Coordinating Committee, Asperger Syndrome and High Functioning Autism Association, United States Autism and Asperger Association, and other autism related organizations. He earned his Ed.D. from Boston University.

Jennifer Tyson

Jennifer Tyson, is a social science analyst in the Office of Juvenile Justice and Delinquency Prevention’s (OJJDP), Innovation and Research Division, at the U.S. Department of Justice. Prior to joining OJJDP, she served as a coordinator for a national training and technical assistance project at American University and as a program coordinator for a community-based crime prevention and public safety effort in the Office of the Attorney General, Commonwealth of Massachusetts. Jennifer earned her M.A. in child development, and urban policy and planning, from Tufts University.

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Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: A Workshop

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Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: A Workshop

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Featured publication

Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: Proceedings of a Workshop

Description

Contributors

Committee

Sponsors

Staff

Parent projects

Forum for Children’s Well-Being: Promoting Cognitive, Affective, and Behavioral Health for Children and Youth

Major units and sub-units

Contact

Contact us

Provide feedback

More like this

Forum for Children’s Well-Being: Promoting Cognitive, Affective, and Behavioral Health for Children and Youth

Workshop on Media Literacy Education

Achieving a Just Response to Sudden, Unexpected Infant Deaths – A Workshop

Center for Health, People, and Places (CHPP)

Shaping Access to Reproductive Health Care: Financing and Delivery Systems. A Two-Part Webinar Series

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