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Project Information

Project Information


Improving Health Outcomes for Children with Disabilities


Project Scope:

An ad hoc committee will be assembled under the auspices of the National Academies of Sciences, Engineering, and Medicine and will produce a comprehensive report on health outcomes for school-aged children with disabilities. The committee will review and assess programs, services, and supports available to these children and their families; describe overarching program, service, and treatment goals; examine outreach efforts and utilization rates; identify what outcomes are measured and how they are reported; and describe what is known about the effectiveness of these programs and services.

The task order objectives for the committee are to:

1.       Identify and describe federal, state, or local programs and services aimed at improving health and functioning outcomes for school-aged children with disabilities, especially the most commonly-occurring disabilities in children who receive SSI or may qualify for SSI, and including youth as they transition from high school to the workplace or higher education;

2.       Describe the characteristics that contribute to the effectiveness of the programs and services for this population;

3.       Identify the gaps and limitations of these programs and services; and

4.       Provide findings and conclusions that can inform decisions about SSA involvement and future research efforts. 

Based on currently available evidence, the committee will provide findings and conclusions that can inform future policy, practice, and research to improve the health outcomes for children who receive SSI benefits.

B.       Specific Considerations

As a guide for literature review, information and data gathering, public sessions, discussions, deliberations, and report development (including findings and conclusions), the committee shall consider the following:

1.       For objective #1, consider evidence of the programs and services found from a review of the environment in which these children live (at home, in school, on the job when applicable, and in the community), including (where available) information about: 

•         Applicability (for example, broad or narrow);

•         Responsible provider(s);

•         Length of time services available;

•         Average time participants use services;

•         Service methodology, including available treatment or therapy;

•         Marketing and outreach methods;

•         Incentives for the families of children with disabilities to participate;

•         How participants are identified;

•         Participant characteristics (age, gender, race/ethnicity, disability, health conditions, educational attainment, income levels, and medications);

•         Medical home arrangement and involvement;

•         Methods used to report outcomes;

•         Challenges participants have in obtaining access to programs and services; and

•         Trends and methods for arriving at improved health and functioning outcomes.

2.       For objective #2, consider:

•         How the identified programs and services make or intend to make an impact on health and functioning, given many of these children and youth have been dealing with serious health impairments that have been present for many years;

•         How internal or external factors (such as stakeholders’ interests, finances, data, businesses, service markets, technology, politics, etc.) influence the delivery of the programs or services; 

•         What indicators or benchmarks demonstrate that positive health and functioning outcomes have been achieved; 

•         What community assets and resources contribute to improved health and functioning  outcomes; and

•         What is the ideal combination of features to offer that result in improved health and functioning and that lead to better education and employment outcomes.

3.       For objective #3, consider what is known about the gaps in the availability and receipt of the programs and services (such as of the availability of supports and services for families or in the effectiveness of care coordination).

4.       For objective #4, consider what models or standards for what these children need to improve health and functioning outcomes.

Status: Completed

PIN: HMD-BSP-16-01

Project Duration (months): 22 month(s)

RSO: Helsing, Karen

Topic(s):

Behavioral and Social Sciences
Health and Medicine



Geographic Focus:

Committee Membership

Committee Post Date: 02/22/2017

Amy Houtrow - (Chair)
University of Pittsburgh School of Medicine

Amy Houtrow, M.D., Ph.D., M.P.H., is an Associate Professor and Vice Chair for Pediatric Rehabilitation Medicine and Vice Chair for Quality and Outcomes in the Department of Physical Medicine and Rehabilitation. She also serves as the Director of the ACGME accredited Pediatric Rehabilitation Fellowship, the Chief of Pediatric Rehabilitation Medicine at the Children’s Hospital Pittsburgh of UPMC and the Medical Director of the Rehabilitation Institute. Dr. Houtrow completed her residencies in Physical Medicine & Rehabilitation and Pediatrics at Cincinnati Children’s Hospital and the University of Cincinnati Medical Center in 2005, she is board certified in both disciplines and holds subspecialty certification in Pediatric Rehabilitation Medicine. She completed an M.P.H. in the area of Health Policy and Management at the University of Michigan in 2004. From 2005 to 2012 Dr. Houtrow was Assistant Professor of Clinical Pediatrics at the University of California at San Francisco and earned a PhD with distinction in Medical Sociology in 2012. Dr. Houtrow’s main clinical focus is caring for children with disabilities to optimize health, function and well-being. Complementing her clinical focus, Dr. Houtrow’s research focus is recognizing the impact raising children with disabilities has on families and developing channels to improve health care service delivery.
Paula G. Allen-Meares
University of Illinois at Chicago

Paula Allen-Meares, M.S.W., Ph.D., served from 2009-2015 as Chancellor of the University of Illinois at Chicago (UIC) and Vice President of the University of Illinois from 2010-2015. Dr. Allen-Meares served from 1990-1993 as Dean of the University of Illinois at Urbana-Champaign School of Social Work, and from 1993-2008 as Dean of the University of Michigan School of Social Work. She is currently the John Corbally Presidential Professor and Professor of Medicine at UIC. She holds certificates in management from the University of Michigan and Harvard University, an Executive Education certificate from the Women’s Director of Development Program at Kellogg School of Management, and the Creating and Leading a Culture of Innovation Certificate from Northwestern University. She also holds faculty appointments on both the Chicago and Urbana-Champaign campuses and is Dean and Professor Emerita and Norma Radin Collegiate Professor at the University of Michigan.

Dr. Allen-Meares is a member of the National Academy of Medicine (NAM) and past trustee of the New York Academy of Medicine. She was appointed Chair of Section 10 of the NAM in 2009 and then co-chaired Section 10 for another two years. She has served on the NAM Sarnat Prize and Awards Committees. Dr. Allen-Meares also serves on the American Council on Education’s Commission on Inclusion, and recently served on the Executive Committee for the Coalition for Urban Serving Universities. Furthermore, for almost a decade, she served as a trustee for the WT Grant Foundation in New York, was elected president to the Society for Social Work and Research (SSWR), chaired the NASW Communications Committee, was editor and chief for the Journal of Social Work Education- which later became the Children’s Journal, and was elected to the Council on Social Work Education Board of Directors. She has also been invited to participate in conferences at the White House regarding student success and affordability in high education.

Dr. Allen-Meares continues to serve on a number of editorial boards and has published with some of the leading presses. She has over 170 articles, chapters, several books, essays, editorials and commentaries, including the recently released Social Work Services in Schools (7th ed. ) New York: Pearson, soon to be translated into Chinese. She has a book in press with Oxford on creating community capacity to better enhance the development and educational outcomes for children. Her scholarly work has been translated in other languages and studied around the globe.
Jay Berry
Harvard Medical School

Jay Berry, M.D., M.P.H., is assistant professor of pediatrics at Harvard Medical School and attending physician with the Complex Care Service at the Boston Children’s Hospital. Dr. Berry’s research has focused on integrating pediatric providers across the care continuum to improve care planning and health outcomes for children with medical complexity. As the director of the Children’s Hospital Association’s Complex Care Quality Improvement and Research Collaborative, co-chair of the Academic Pediatrics Association Complex Care Special Interest Group, and member of the Pediatric Research in Inpatient Settings executive council, Dr. Berry has a long-standing history of collaboration and data sharing with hospitals throughout the U.S. that serve children with medical complexity.

Dr. Berry received his M.D. from the University of Alabama School of Medicine in 2001. He completed pediatrics residency at Primary Children’s Medical Center at the University of Utah in 2004. Dr. Berry completed the Harvard Pediatric Health Services Research Fellowship and the Harvard School of Public Health Clinical Effectiveness Program in 2006. He founded the Complex Care Quality Improvement Research Collaborative through the Children’s Hospital Association. He is co-chair of the Academic Pediatrics Association Complex Care Special Interest Group. Dr. Berry is the recipient of the Agency for Healthcare Research and Quality’s Outstanding Achievement for Scientific Contribution Using HCUP Award, the Young Clinician Research Award from the Center for Integration of Medicine and Innovative Technology, and the AcademyHealth Nemours Child Health Services Research Award. His research has been featured in JAMA, Health Affairs, PLOS Medicine, U.S News, WBUR (Massachusetts Public Radio), and the Wall Street Journal.

Claire D. Brindis
University of California, San Francisco

Claire D. Brindis, Dr.P.H., is professor of pediatrics and health policy and director of the Philip R. Lee Institute for Health Policy Studies and the University of California, San Francisco. Her research interests focus on adolescent and young adult health policy and women's health. Dr. Brindis served as a frequent policy advisor to federal, state and local policymakers and private foundations. Her writings, publications and personal consultation in the field of adolescent pregnancy prevention were extensively utilized in the planning and implementation of various state and federal initiatives. More recently, Dr. Brindis’ research has focused on the implementation of the Affordable Care Act and its impact on young people, particularly those who have previously been marginalized from health insurance access. Dr. Brindis participated on the Steering Committee of the CDC's National Health Objectives for the Year 2010 and 2020, as well as the National Initiative to Improve Adolescent Health. In 2001, she was honored by the Association of Maternal and Child Health Programs with the annual John C. MacQueen Lecture Award, and in 2001, she was honored with the federal Maternal and Child Health Director’s Award in recognition of her contributions made to improve the health of infants, mothers, children, adolescents, and children with special health care needs in the Nation. Among her multiple publications, Dr Brindis has co-authored a statewide comprehensive strategic plan for California, entitled Investing in Adolescent Health: A Social Imperative for California's Future, as well as a "Guidebook for Evaluating School-Based Health Centers." She also co-authored a monograph on implementing the Healthy People 2010 21 Critical Health Objectives, entitled Improving the Health of Adolescents and Young Adults: A Guide for States and Communities. More recently, she has conducted qualitative research on the health needs of young people eligible for the Deferred Action for Childhood Arrivals (DACAs) living in California. Dr. Brindis' educational background includes a Doctoral Degree in Public Health and Behavioral Sciences from U.C. Berkeley and a Master's Degree in Public Health from UCLA. A native of Argentina, Dr. Brindis is fluently bilingual in English and Spanish.
Stephen M. Camarata
Vanderbilt University School of Medicine

Stephen Camarata, Ph.D., is professor of hearing & speech sciences and an associate professor of special education at Vanderbilt University. In addition, he is an investigator at the John F. Kennedy Center for Research on Development and Disabilities (serving as acting director of the Center from 1999-2002). Dr. Camarata received his Ph.D. in 1984 at Purdue University with a major in audiology & speech sciences and a minor in statistical methods. He held post-doctoral appointments at the University of Arizona (Speech & Hearing Sciences) and at the University of California, San Diego (in cognitive science). Dr. Camarata held faculty positions at Penn State University and in the Autism Research Center at the University of California, Santa Barbara prior to coming to Vanderbilt in 1990. Dr. Camarata’s areas of research interest are focused on the identification and treatment of speech and language disorders in children with disabilities. Populations of interest include children with autism, Down Syndrome, phonological disorders, and language disorders. He is currently a permanent member of the NIH study section communication disorders review committee (CDRC).
Wendy J. Coster
Boston University, Sargent College of Health and Rehabilitation Sciences

Wendy J. Coster, ORT/L, Ph.D., has a distinguished career in rehabilitation outcome measurement. She is professor and chair of the Boston University Department of Occupational Therapy, as well as director of their Rehabilitation Outcomes Center. She is the co-author of the Pediatric Evaluation of Disability Inventory (PEDI), and School Function Assessment (SFA), two of the first standardized functional assessments designed specifically for children with disabilities. Dr. Coster has been at the forefront of the development of patient/clinician reported computer adaptive tests (CATs). She was instrumental in the development of the Activity Measure for Post-Acute Care (AM-PAC) CAT, which is used in the adult population, and the PEDI-CAT for children. Her most recent project was development of a measure of participation and environment for children and youth that could be used in population-level survey research. She has concentrated on developing measures for the field of rehabilitation that appropriately reflect individuals’ ability to engage in activities and participate in situations that are important for their satisfaction and well-being. Dr. Coster is a leader in occupational therapy. She is a fellow of the American Occupational Therapy Association, a member of the Academy of Research of the American Occupational Therapy Foundation, a recipient of the A. Jean Ayres Research Award, the Sargent College Award of Merit, and the 2007 Eleanor Clarke Slagle Award. Dr. Coster received her M.S. in Occupational Therapy from Boston University, and Ph.D. in Psychology from Harvard University.
Maryann Davis
University of Massachusetts Medical Center at

Maryann Davis, Ph.D., is a research associate professor in the Department of Psychiatry at UMass Medical School, director of the Transitions Research and Training Center, and Director of the Systems and Psychosocial Advances Research Center. Dr. Davis is an internationally recognized expert on services for transition age youth and young adults with serious mental health conditions. Her focus is on services that support the development of adult role functioning during the transition from adolescence to mature adulthood. She has examined conflicts between the developmental needs of this transitioning population and policies and practices at the federal, state, and local levels of health, human service and education agencies. She has studied service system supports and barriers to healthy development, the policies that shape those service patterns, and has worked with Congress to develop legislation to better address the needs of this population. Dr. Davis’ work also emphasizes the development of evidence-based interventions that improve this population’s transition into adulthood, including facilitation of mental health treatment, and community based interventions for emerging adults with mental illness and justice system involvement. She served on the Institute of Medicine’s Committee on Improving the Health, Safety and Well-Being of Young Adults.
Elena Fuentes-Afflick
University of California, San Francisco

Elena Fuentes-Afflick, M.D., M.P.H., professor of pediatrics at the University of California, San Francisco, obtained her undergraduate education and medical degree at the University of Michigan. She completed her residency training at UCSF, where she served as chief resident, followed by a research fellowship at the Phillip R. Lee Institute for Health Policy Studies. She also completed an M.P.H. at the University of California, Berkeley. Dr. Fuentes-Afflick’s research in perinatal epidemiology has focused on ethnic disparities in perinatal outcomes and the effect of acculturation on health outcomes. She is currently working on a project to study transition issues for youth with complex medical and developmental needs, to contribute new information about the spectrum of needs and interventions for high-risk youth. She is also part of a research collaborative to analyze ethnic and subgroup disparities in cerebral palsy.

Dr. Fuentes-Afflick’s research has focused on the broad themes of acculturation and immigrant health, with specific emphasis on perinatal and neonatal health disparities. She served as chair of the UCSF Academic Senate, and has served on national committees of the Society for Pediatric Research, the National Institutes of Health, and the Robert Wood Johnson Foundation. She served as president of the Society for Pediatric Research in 2008-2009; and was a member of the National Advisory Council of the National Institute for Child Health and Human Development (NICHD); the National Advisory Council of the Agency for Healthcare, Research and Quality (AHRQ); the National Advisory Committee of the Thrasher Research Fund, the Federal Advisory Committee of the National Children’s Study; the Board of the International Pediatric Research Foundation, and the National Advisory Council of the Robert Wood Johnson Foundation’s Clinical Scholars Program. In 2010, Dr. Fuentes-Afflick was elected to the Institute of Medicine, now the National Academy of Medicine. Within the NAM, she serves as a Member of the Board on Children, Youth and Families and Chairs the Membership Committee.
James E. Martin
University of Oklahoma

James Martin, Ph.D. is the Zarrow Family Professor and Endowed Chair at the University of Oklahoma, Department of Educational Psychology, and is the Director of OU’s Zarrow Center for Learning Enrichment. Dr. Martin earned his Ph.D. in Special Education from the University of Illinois with a focus on secondary transition. His professional interests focus upon the transition of youth with disabilities from high school into postsecondary education and the workforce, and what must be done to facilitate success in high school and postsecondary environments. He examines identifying, assessing, and teaching secondary-aged youth and adults with disabilities generalizable self-determination and other skills that when learned will increase the likelihood of desired educational and employment outcomes. Professor Martin has authored several books, numerous chapters for edited books, journal articles, several curriculum lesson packages, and instructional assessments. Most recently he and colleagues co-authored the on-line Transition Assessment and Goal Generator (TAGG) and wrote supporting materials. He just received another major federal research grant to extent the methods used to develop the TAGG into a new assessment for secondary-aged students with cognitive disabilities. Federal, state, and private sources, including the Institute for Education Science’s National Center for Special Education Research, provided Dr. Martin with approximately $15 million to conduct his research, demonstration, and writing activities. He has conducted presentations and professional development workshops across the US, Canada, and in Europe. CEC’s Division on Career Development and Transition honored Professor Martin the Oliver P. Kolstoe Award for his efforts to improve the quality and access to career and transition services for people with disabilities, and most recently his students nominated him for the OU graduate student mentoring award. He is currently the Past-President of CEC’s Division on Career Development and Transition.
James M. Perrin
Harvard Medical School

James M. Perrin, M.D., is professor of pediatrics at Harvard Medical School, former director of the Division of General Pediatrics at the Massachusetts General Hospital for Children and associate chair of pediatrics at MGH. He holds the John C. Robinson Chair in Pediatrics and founded the MGH Center for Child and Adolescent Health Policy, directing the center for over 15 years. He is a recent past president of the American Academy of Pediatrics, former chair of its Committee on Children with Disabilities, and past president of the Academic (Ambulatory) Pediatric Association. With the American Academy of Pediatrics, Dr. Perrin co-chaired committees to develop and assist with implementation of practice guidelines for attention deficit hyperactivity disorder. His research examines asthma, middle ear disease, children’s hospitalization, health insurance, and childhood chronic illness and disabilities, with recent emphasis on the epidemiology of childhood chronic illness and organization of services for the care of children and adolescents with chronic health conditions. He headed the Clinical Coordinating Center (based at the MGH) for the national Autism Speaks Autism Treatment Network and directed the Autism Intervention Research Network on Physical Health. He also directed the Evidence Working Group reporting to the Maternal and Child Health Bureau for the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Dr. Perrin was the founding editor of the journal Academic Pediatrics (formerly known as Ambulatory Pediatrics).

Dr. Perrin has served on Institute of Medicine Committees on Maternal and Child Health under Health Care Reform, Quality of Long-Term-Care Services in Home and Community-Based Settings, Enhancing Federal Healthcare Quality Programs, Disability in America, and to Evaluate the SSI Disability Program for Children with Mental Disorders. He has also served on the National Commission on Childhood Disability and the Disability Policy Panel of the National Academy of Social Insurance. His experience includes two years in Washington working on rural primary care development and migrant health. Dr. Perrin received a Robert Wood Johnson Foundation Investigator Award in Health Policy Research. He additionally served as a member of the National Advisory Council for the Agency for Healthcare Research and Quality. A graduate of Harvard College and Case Western Reserve University School of Medicine, he completed his residency and fellowship training at the University of Rochester and served on the faculties of the University of Rochester and Vanderbilt University. After his fellowship at the University of Rochester, he developed and ran a rural community health center in farming communities between Rochester and Buffalo.
Ramesh Raghavan
Rutgers University

Ramesh Raghavan, M.D., Ph.D., is professor and associate dean for research at the School of Social Work at Rutgers. Before coming to Rutgers, he was an associate professor at Washington University in St. Louis, with a primary appointment at the Brown School of Social Work, and a secondary appointment in the Department of Psychiatry at the School of Medicine. At the Brown School, he also served as principal investigator and training director of a National Institute of Mental Health (NIMH) pre- and postdoctoral training program in mental health services research.

Dr. Raghavan conducts mental health services research on the needs of vulnerable children, with a specific interest in children in the child welfare system. He has conducted studies on access to mental health services among child welfare-involved populations, including studies on the effects of Medicaid managed care, on the effects of health insurance instability on mental health service use. He has conducted several studies on quality of care, including on the use of public finance mechanisms to promote quality of mental health services, racial/ethnic disparities in Medicaid-funded mental health expenditures for children with histories of maltreatment, and on the development of novel risk adjustment mechanisms to better insure the mental health needs of children with emotional disorders.

Dr. Raghavan chairs NIMH’s Mental Health Services Research review committee (SERV), and serves on the editorial boards of Child Maltreatment, and Administration and Policy in Mental Health and Mental Health Services Research. In early 2015, he served as senior advisor in the Office of the Commissioner, Administration on Children, Youth and Families in the US Department of Health and Human Services, working primarily on the Administration’s psychotropic medication use and childhood trauma initiatives. He was also a member of the Institute of Medicine’s Committee to Evaluate the Supplemental Security Income (SSI) Disability Program for Children with Speech Disorders and Language Disorders. Dr. Raghavan completed medical school at Stanley Medical College, Madras, India, and a psychiatric residency at Kasturba Medical College, Manipal, India, before coming to the University of California, Los Angeles (UCLA), where he completed a fellowship in pediatric pain in 1999 and worked at the UCLA/RAND Center for Adolescent Health Promotion. He earned a Ph.D. in health services from the Fielding School of Public Health at UCLA.
Karrie Shogren
University of Kansas

Karrie A. Shogren, Ph.D. is a professor in the Department of Special Education, senior scientist in the Life Span Institute, and co-director of the Kansas University Center on Developmental Disabilities. Dr. Shogren's research focuses on self-determination and systems of support for students with disabilities and she has a specific interest in the multiple, nested contextual factors that impact student outcomes. Dr. Shogren has published over 100 articles in peer-reviewed journals, is the author or co-author of 10 books, and is one of the co-authors of Intellectual Disability: Definition, Classification, and Systems of Support, the 11th Edition of the American Association on Intellectual and Developmental Disabilities' seminal definition of intellectual disability (formerly mental retardation) as well as the Supports Intensity Scale-Children’s and Adult Version. Dr. Shogren has received grant funding from several sources, including the Institute of Education Sciences (IES) and National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). Dr. Shogren is co-editor of Inclusion and Remedial and Special Education, and Associate Editor of Research and Practice for Persons with Severe Disabilities.
Ruth E. Stein
Albert Einstein College of Medicine of Yeshiva University

Ruth E.K. Stein, M.D., is a pediatrician who works in research and advocacy for children, especially those with chronic health conditions. She is professor of pediatrics at the Albert Einstein College of Medicine/Children's Hospital at Montefiore. Her research has been supported by the Maternal and Child Health Bureau, National Institute of Mental Health, ASPE, HRSA, and numerous foundations. Her work has involved the development of a number of measures that are widely used in the assessment of outcomes for children with disabilities and their families. Dr. Stein received the Research Award of the Academic Pediatric Association, the Douglas Richardson Award for Outstanding Lifetime Achievement in Perinatal and Pediatric Research from the Society for Pediatric Research, and the C. Anderson Aldrich Award from the American Academy of Pediatrics for Contributions to Developmental and Behavioral Pediatrics. She has over 225 publications and has edited four books relating to pediatric chronic illness, psychosocial and behavioral pediatrics, health care for children and adolescent depression. She has served on several editorial boards and numerous federal and professional advisory groups. Dr. Stein is a past president of the Academic Pediatric Association. She is a member of the National Academies of Science, Engineering and Medicine’s Committee of Medical Experts to Assist Social Security on Disability Issues and was past co-chair for a Board of Children, Youth and Families’ study on the Evaluation of Child Health, Safety and Well-Being.
Maureen van Stone
Kennedy Krieger Institute

Maureen van Stone, Esq., M.S., is the Associate Director of the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute and the founding director of Project HEAL (Health, Education, Advocacy, and Law), a MCDD community-based program. Project HEAL is Maryland’s only comprehensive medical-legal partnership, which provides advocacy and legal services to low- and moderate-income families and children with disabilities who receive services at Kennedy Krieger Institute. Maureen is also a core director for Kennedy Krieger Institute's Center for Innovation and Leadership in Special Education and adjunct faculty at Towson University and The University of Baltimore School of Law. Maureen is a member of Kennedy Krieger Institute’s ethics committee.

Maureen earned a bachelor’s degree in psychology at the University of Southern California, a master’s degree in developmental psychology at The Johns Hopkins University, and a Juris Doctor at Whittier Law School, with a concentration on children’s legal issues. Prior to law school, Maureen worked as a clinician on the Neurobehavioral Unit in the Department of Behavioral Psychology at Kennedy Krieger Institute for six years. Maureen is a graduate of the Leadership Maryland Class of 2012 and received the following awards from Maryland’s business and legal newspaper, The Daily Record: 2016 Innovator of the Year, 2014 Very Important Professionals award, 2013 Maryland’s Top 100 Women award, 2012 Leadership in Law award, and 2011 Leading Women award.
John T. Walkup
Weill Cornell Medical College

John T. Walkup, M.D. is Professor of Psychiatry, DeWitt Wallace Senior Scholar, the Vice Chair of Psychiatry, and Director of the Division of Child and Adolescent Psychiatry at Weill Cornell Medical College and New York-Presbyterian Hospital. Dr. Walkup is recent past Chair of the Medical Advisory Board of the Tourette Association , and he serves on the Scientific Advisory Boards of the Trichotillomania Learning Center, the Anxiety Disorders Association of America and the American Foundation of Suicide Prevention. He is deputy editor for psychopharmacology for the Journal of the American Academy of Child and Adolescent Psychiatry. Dr. Walkup has three main academic areas of interest. His work with Tourette syndrome, uniquely spans psychiatry, child psychiatry and neurology; his expertise in interventions research focuses on the development and evaluation of psychopharmacological and psychosocial treatments for the major psychiatric disorders of childhood including anxiety, depression, bipolar disorder, Tourette syndrome and suicidal behavior; and lastly, he has been involved in developing and evaluating interventions to reduce the large mental health disparities facing Native American youth, specifically drug use and suicide prevention. For his work he has been awarded the three of highest United States achievement awards for child and adolescent psychiatry, the Norbert and Charlotte Rieger Award for Academic Achievement in 2009 from the American Academy of Child and Adolescent Psychiatry, the Blanche F. Ittleson Award for Research in Child Psychiatry in 2011 from the American Psychiatric Association and the Schonfeld Award from the American Society of Adolescent Psychiatry in 2016.
David Wittenburg
David Wittenburg, Ph.D., M.P.H. is an expert in interventions to promote employment for people with disabilities, particularly interventions that serve youth as they transition into adulthood. He has two decades of experience in evaluation design and program evaluation for several federal agencies. Wittenburg leads business development activities related to disability projects. He recently worked in senior leadership roles on three Social Security Administration demonstration projects, helping to design and implement experimental and nonexperimental approaches to assess the efficacy of return-to-work interventions for people with disabilities. Wittenburg, who joined Mathematica in 2005, presents his findings to diverse research and policy audiences, including in congressional testimony, conference presentations, reports, and journal publications. He edited two special journal volumes on employment topics related to people with disabilities for the IZA Journal of Labor Policy and the Journal of Disability Policy Studies. A member of the National Academy of Social Insurance and formerly a senior associate at the Urban Institute and the Lewin Group, he holds a Ph.D. in economics from Syracuse University.

Committee Membership Roster Comments

Please note that there has been a change in the committee membership with the appointment of Dr. David Wittenburg (2/22/2017)

Events



Location:

Keck Center
500 5th St NW, Washington, DC 20001
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  -
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

The following committee members were present at the closed sessions of the meeting:
1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone on October 20th)
3. Claire Brindis
4. Maryann Davis
5. Elena Fuentes-Afflick (present on October 21st)
6. James Martin (present on October 20th)
7. James Perrin
8. Ruth Stein
9. Maureen van Stone (present on October 20th
on phone on October 21st)
10. David Wittenburg (present on October 20th
on phone on October 21st)


The following topics were discussed in the closed sessions:

The following topics were discussed in the closed sessions:
- report text, findings, and conclusions
- timeline and writing assignments


The following materials (written documents) were made available to the committee in the closed sessions:
Draft report
Preliminary conclusions

Date of posting of Closed Session Summary:
October 25, 2017
Publication(s) resulting from the event:

-


Location:

Arnold and Mabel Beckman Center
100 Academy Way, Irvine, CA 92617
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Annalee Gonzales
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone on August 17-18)
3. Jay Berry
4. Claire Brindis
5. Stephen Camarata
6. Wendy Coster
7. Maryann Davis
8. Elena Fuentes-Afflick
9. James Perrin
10. Ramesh Raghavan
11. Karrie Shogren
12. Ruth Stein
13. Maureen van Stone
14. John Walkup
15. David Wittenburg

The following topics were discussed in the closed sessions:

- report text, findings, and conclusions
- timeline and writing assignments
- Planning and logistics for next committee meeting

The following materials (written documents) were made available to the committee in the closed sessions:

Draft report
Preliminary conclusions

Date of posting of Closed Session Summary:
August 30, 2017
Publication(s) resulting from the event:

-


Location:

J. Erik Jonsson Woods Hole Center
314 Quissett Ave.
Woods Hole, Massachusetts
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Annalee Gonzales
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone on June 7th)
3. Jay Berry
4. Claire Brindis
5. Stephen Camarata
6. Wendy Coster
7. Maryann Davis
8. Elena Fuentes-Afflick
9. James Martin
10. James Perrin
11. Ramesh Raghavan
12. Karrie Shogren
13. Ruth Stein
14. Maureen van Stone
15. John Walkup
16. David Wittenburg


The following topics were discussed in the closed sessions:

- report text, findings, and conclusions
- timeline and writing assignments
- Planning and logistics for next committee meeting


The following materials (written documents) were made available to the committee in the closed sessions:

Draft report
Preliminary conclusions

Date of posting of Closed Session Summary:
June 15, 2017
Publication(s) resulting from the event:

-


Location:

National Academy of Sciences Building
2101 Constitution Ave NW, Washington, DC 20418
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Annalee Gonzales
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Agenda
10:15 a.m. Welcome and Introductions
Amy Houtrow, M.D., Committee Chair

10:30 a.m. Childhood Disability and its Impacts on and of the Family
Susan Parish, PhD, MSW, Dean, Bouve College of Health, Northeastern University

11:30 a.m. The Role of School Nurses in Improving Health Outcomes for Children with Disabilities
Linda Wolfe, Ed.D., RN, Director, School Support Services, Delaware Department of Education

12:30 p.m. Break for Lunch

1:30 p.m. National Technical Assistance Center on Transition (NTACT) Evidence based practices/rating system
Catherine Fowler, Ph.D., Project Coordinator, NTACT

2:30 p.m. Foster Care Youth with Disabilities
Laurie Powers, Ph.D., Emeritus Professor and Research Professor, Regional Research Institute, Portland State University

3:30 p.m. Summary and Closing Remarks
Amy Houtrow, M.D., Committee Chair

3:35 p.m. Adjourn Public Session

Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone April 6)
3. Jay Berry
4. Claire Brindis
5. Stephen Camarata (by phone April 7)
6. Wendy Coster
7. Maryann Davis
8. Elena Fuentes-Afflick
9. James Martin
10. James Perrin
11. Ramesh Raghavan
12. Karrie Shogren
13. Ruth Stein
14. Maureen van Stone
15. John Walkup
16. David Wittenburg


The following topics were discussed in the closed sessions:

- Preliminary report outline and approach to charge
- Report timeline, report writing, and overview of drafting process
- Planning and logistics for next committee meeting
- Conflict of interest and bias discussions for select committee members

The following materials (written documents) were made available to the committee in the closed sessions:

1. Parish, Susan (Dean, Bouve College of Health, Northeastern University); presentation submitted to Frank Valliere, Study Director, HMD
2. Wolfe, Linda (State School Nurse Consultant, National Association of State School Nurse Consultants); presentation submitted to Frank Valliere, Study Director, HMD
3. Fowler, Catherine (Project Coordinator, National Technical Assistance Center on Transition); presentation submitted to Frank Valliere, Study Director, HMD
4. Powers, Laurie (Emeritus Professor and Research Professor, Regional Research Institute, Portland State University); presentation submitted to Frank Valliere, Study Director, HMD


Date of posting of Closed Session Summary:
April 11, 2017
Publication(s) resulting from the event:

-


Location:

Keck Center
500 5th St NW, Washington, DC 20001
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Annalee Gonzales
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Agenda
8:45 a.m. — 4:15 p.m. Public Session
8:45 a.m. Welcome and Introductions (Amy Houtrow, Committee Chair)
8:50 a.m. Transition
Vocational Rehabilitation and Special Education
Laura Owens, PhD, CESP, President, TransCen
Supported Employment/Transition for Youth with ASDs
Carol M. Schall, PhD, Director of Technical Assistance, Virginia Autism Resource Center, Virginia Commonwealth University
9:30 a.m. Discussion
10:00 a.m. Transition Programs
New York PROMISE Grant Program
Arun Karpur, MD, MPH, Research Director, New York State PROMISE
ASPIRE (Multi-State Consortium PROMISE Grant Program)
Carol Ruddell, MA, ASPIRE Project Director
Marriott Foundation’s Bridges from School to Work
Allen Brown, BA, Managing Director of Bridges Operations
10:45 a.m. Discussion
11:45 a.m. Break for Lunch
12:15 p.m. (Lunch Presentation) Juvenile Justice Systems and Children with Disabilities
Peter Leone, PhD, University of Maryland
1:15 p.m. Break
1:35 p.m. SAMHSA and Systems of Care
Gary Blau, PhD, Chief of Child, Adolescent and Family Branch, Division of State and Community Systems Development, SAMHSA;
Kirsten Painter, PhD, LCSW, Public Health Analyst, Center for Mental Health Services, Division of Service and System Improvement, SAMHSA
2:05 p.m. Discussion
2:50 p.m. Youth and Family Perspectives
Rylin Rodgers, Founding Director, Family Voices of Indiana;
Darcy Gruttadaro, National Alliance on Mental Illness
Johanna Bergan, YouthMOVE
3:10 p.m. Discussion
4:15 p.m. Adjourn Public Session
Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone Feb 2 and 3)
3. Jay Berry (by phone Feb 2 and 3)
4. Claire Brindis
5. Stephen Camarata
6. Wendy Coster
7. Maryann Davis (by phone Feb 2)
8. Elena Fuentes-Afflick
9. James Martin
10. James Perrin
11. Ramesh Raghavan
12. Karrie Shogren
13. Ruth Stein
14. Maureen van Stone
15. John Walkup


The following topics were discussed in the closed sessions:

- preliminary report outline and approach to charge
- preliminary planning of the next committee meeting, including suggested topics and speakers
- study schedule and timeline
- conflict of interest and bias discussions for select committee members


The following materials (written documents) were made available to the committee in the closed sessions:

1. Owens, Laura (President, TransCen); Presentation submitted to Frank Valliere, Study Director, HMD
2. Schall, Carol M. (Assistant Professor, Principal Investigator, Rehabilitation Research and Training Center,Virginia Commonwealth University); Presentation submitted to Frank Valliere, Study Director, HMD
3. Karpur, Arun (Extension Faculty, Yang Tan Institute on Employment and Disability, ILD School, Cornell University); Presentation submitted to Frank Valliere, Study Director, HMD
4. Ruddell, Carol (Project Director, ASPIRE PROMISE Initiative); Presentation submitted to Frank Valliere, Study Director, HMD
5. Leone, Peter (Professor, College of Education, University of Maryland); Presentation submitted to Frank Valliere, Study Director, HMD
6. Blau, Gary (Chief of Child, Adolescent and Family Branch, Center for Mental Health Services) and Painter, Kirsten (Public Health Analyst, Center for Mental Health Services); Substance Abuse and Mental Health Services (SAMHSA); Presentation submitted to Frank Valliere, Study Director, HMD
7. Rodgers, Rylin (Family Leader, Indiana University), Family Voices; Presentation submitted to Frank Valliere, Study Director, HMD
8. Brown, Allen (Managing Director of Operations, Bridges from School to Work); Marriot Foundation for People with Disabilities; Presentation submitted to Frank Valliere, Study Director, HMD
9. Brown Allen (Managing Director of Operations, Bridges from School to Work); Marriot Foundation for People with Disabilities; PDF of Bridges Program 2016 Progress Report submitted to Frank Valliere, Study Director, HMD
10. Brown Allen (Managing Director of Operations, Bridges from School to Work); Marriot Foundation for People with Disabilities; PDF of Bridges Program Frequently Asked Questions submitted to Frank Valliere, Study Director, HMD
11. Rodgers, Rylin (Family Leader, Indiana University), Family Voices; PDF of Supplemental Security Income (SSI): A Critical Component of America’s Care Neighborhood submitted to Frank Valliere, Study Director, HMD


Date of posting of Closed Session Summary:
February 08, 2017
Publication(s) resulting from the event:

-


Location:

Keck Center
500 5th St NW, Washington, DC 20001
Event Type :  
-

Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Annalee Gonzales
Contact Email:  agonzales@nas.edu
Contact Phone:  202-334-2001

Agenda
10:30 a.m.—2:30 p.m. Public Session
10:30 a.m. Welcome and Introductions
Amy Houtrow, Committee Chair
10:40 a.m. Social Security Administration Presentations Relevant to the Committee’s Task
11:00 a.m. Discussion of Statement of Task
Committee Members and SSA Staff
12:00 p.m. Break for Lunch
1:00 p.m. Title V Maternal and Child Health Services Block Grant Program
Debra Waldron, Director, Division of Services for Children with Special Health Needs, MCHB
Michele Lawler, Director, Division of State and Community Health, MCHB
2:30 p.m. Adjourn Public Session
Supporting File(s)
-
Is it a Closed Session Event?
Yes

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

1. Amy Houtrow (Chair)
2. Paula Allen-Meares (by phone Nov 17/18)
3. Jay Berry
4. Claire Brindis
5. Stephen Camarata (by phone Nov 17 only)
6. Wendy Coster
7. Mary Daly (by phone Nov 17 only)
8. Maryann Davis
9. Elena Fuentes-Afflick
10. James Martin
11. James Perrin
12. Ramesh Raghavan (present Nov 17
by phone Nov 18)
13. Karrie Shogren
14. Ruth Stein
15. Maureen van Stone (by phone Nov 17 only)
16. John Walkup


The following topics were discussed in the closed sessions:

- conflict of interest and bias discussion (per National Academies of Sciences, Engineering, and Medicine procedures)
- statement of task and committee composition
- report scope and approach to charge
- preliminary planning of the next committee meeting, including suggested topics and speakers
- study schedule and timeline


The following materials (written documents) were made available to the committee in the closed sessions:

Waldron, D. and Lawler, M. 2016. Maternal and Child Health Bureau Programs (PowerPoint presentation). Washington, DC: U.S. Department of health and Human Services.
SSA (Social Security Administration). Listing of Impairments: Childhood Listings
SSA. Supplemental Security Income (SSI) Child Recipient Fact Sheet.
Preliminary literature review search strategy (staff generated document).


Date of posting of Closed Session Summary:
November 30, 2016
Publication(s) resulting from the event:

-

Publications

  • Publications having no URL can be seen at the Public Access Records Office