Appendix E

Biographical Sketches of Committee Members

Amy Houtrow, M.D., Ph.D., M.P.H. (Chair), is associate professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh School of Medicine. She is vice chair for quality and outcomes and vice chair for pediatric rehabilitation medicine. She serves as program director of the Accreditation Council for Graduate Medical Education (ACGME)–accredited Pediatric Rehabilitation Fellowship; chief of pediatric rehabilitation medicine at the Children’s Hospital of Pittsburgh, University of Pittsburgh Medical Center; and medical director of the Rehabilitation Institute. Dr. Houtrow’s clinical focus is caring for children with disabilities to optimize health, function, and well-being. Her research evaluates opportunities to improve outcomes for children with disabilities, how children and families are impacted by disability, and how health care delivery can better meet the needs of children with disabilities. She serves on the editorial boards of Disability and Health and Archives of Physical Medicine & Rehabilitation. For the American Academy of Pediatrics, she serves on the Executive Committee for the Council on Children with Disabilities, the Taskforce on Addressing Bias and Discrimination, and the Project ECHO Zika Advisory Committee. She holds a number of leadership positions for the American Academy of Physical Medicine and Rehabilitation, including chair of the Performance and Quality Measures committee and is co-chair of the Technical Advisory Committee to Develop Quality Measures for Rehabilitation, and will be assuming a position on the academy’s board of governors. For the National Academy of Medicine, she served on the consensus Committee to Evaluate Supplemental Security Income (SSI) Disability Programs for Children with Mental Disorders and is a member

of the Standing Committee of Medical Experts to Assist Social Security on Disability Issues. Dr. Houtrow completed her medical degree at Michigan State University and her residencies in physical medicine and 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 pediatrics at the University of California, San Francisco, and she earned a Ph.D. with distinction in medical sociology in 2012.

Paula Allen-Meares, M.S.W., Ph.D., served from 2009 to 2015 as chancellor of the University of Illinois at Chicago (UIC) and from 2010 to 2015 as vice president of the University of Illinois. She is currently executive director of the Office of Health Literacy and is John Corbally presidential professor emerita and professor of medicine in the UIC College of Medicine. She also holds faculty appointments on both the Chicago and Urbana-Champaign campuses. Dr. Allen-Meares served as dean of the University of Michigan School of Social Work from 1993 to 2008, and is a professor emerita and Norma Radin collegiate professor at the University of Michigan. 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. Dr. Allen-Meares is a member of the National Academy of Medicine (NAM). She was appointed chair of Section 10 of the Institute of Medicine (IOM) in 2009; co-chaired Section 10 for another 2 years; and has served on a number of IOM committees. She has played key roles in a range of other organizations, including the American Council on Education’s Commission on Inclusion, the Coalition for Urban Serving Universities, The New York Academy of Medicine, the William T. Grant Foundation, the Society for Social Work and Research, and the Council on Social Work Education. She also was editor-in-chief for the Journal of Social Work Education, which later became the Children’s Journal. She has been invited to participate in conferences at the White House regarding student success and affordability in higher education. Dr. Allen-Meares continues to serve on a number of editorial boards and has published more than 170 articles, as well as chapters, several books, essays, editorials, and commentaries. She has received numerous grants, including a $1.4 million grant from the National Institutes of Health on workforce development in the behavioral and biomedical sciences; multiple grants from the Skillman Foundation on community building in Detroit communities; and

$5.1 million in grants over a 10-year period from the National Institute of Mental Health on poverty, risk, and mental health.

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. His research has focused on integrating pediatric providers across the care continuum to improve care planning and health outcomes for children with medical complexity. As 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 a member of the Pediatric Research in Inpatient Settings executive council, he has a long-standing history of collaboration and data sharing with hospitals throughout the United States that serve children with medical complexity. Dr. Berry received his M.D. from the University of Alabama School of Medicine in 2001; completed his pediatrics residency at Primary Children’s Medical Center, University of Utah, in 2004; and 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 [Healthcare Cost and Utilization Project] 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 the Journal of the American Medical Association, Health Affairs, PLOS Medicine, U.S. News & World Report, and The Wall Street Journal, as well as on Massachusetts Public Radio.

Claire Brindis, Dr.P.H., is professor of pediatrics and health policy, director of the Philip R. Lee Institute for Health Policy Studies, and co-director of the Adolescent and Young Adult Health National Resource Center, all at the University of California, San Francisco. Her research interests focus on adolescent and young adult health policy and women’s health, as well as the impacts of risk-taking behaviors and social, health, and economic disparities. More recently, Dr. Brindis’s research has focused on the implementation of the Patient Protection and Affordable Care Act and its impact on young people, particularly those who have previously been marginalized from access to health insurance, as well as on the health needs of young people eligible for the Deferred Action for Childhood Arrivals (DACA) program living in California. As a bilingual, bicultural researcher, Dr. Brindis

has special expertise in diverse Latino/a populations, migration and health, and acculturation. She conducts community- and clinic-based, multisite, qualitative and quantitative studies; participatory research; and research on quality improvement/program management use of evaluation findings. Dr. Brindis participated on the steering committee of the Centers for Disease Control and Prevention’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 with the federal Maternal and Child Health Director’s Award in recognition of her contributions to improving the health of infants, mothers, children, adolescents, and children with special health care needs. Among her multiple publications, she co-authored a monograph on implementing the 21 Critical Health Objectives of Healthy People 2010 and a book titled Advocacy and Policy Change Evaluation: Theory and Practice (Stanford Press, 2017). Dr. Brindis also focuses on the translation of research into policy using academic and nonacademic channels, films, briefs, webinars, and training curricula and materials. She was elected to the National Academy of Medicine in 2016. Dr. Brindis received a doctorate in public health and behavioral sciences from the University of California, Berkeley, and a master’s degree in public health from the University of California, Los Angeles. A native of Argentina, she is fluently bilingual in English and Spanish.

Stephen M. Camarata, Ph.D., is professor of hearing and speech sciences and psychiatry at Vanderbilt University School of Medicine and 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 the center’s acting director from 1999 to 2002). Dr. Camarata received his Ph.D. in 1984 at Purdue University with a major in audiology and speech sciences and a minor in statistical methods. He held postdoctoral appointments at the University of Arizona (in speech and hearing sciences) and at the University of California, San Diego (in cognitive science). Dr. Camarata held faculty positions at The Pennsylvania State University and in the Autism Research Center at the University of California, Santa Barbara, before coming to Vanderbilt in 1990. His research is focused on the identification and treatment of speech and language disorders in children with disabilities. Populations of interest include children with autism, Down syndrome, speech and language disorders, and pediatric cochlear implants. He is currently a permanent member of the National Institutes of Health (NIH) study section on Communication Disorders Review Committee and is former chair of the NIH study section on psychopathology and developmental disabilities.

Wendy Coster, ORT/L, Ph.D., has had a distinguished career in rehabilitation outcome measurement. She is professor and chair of the Boston University Department of Occupational Therapy. She is co-author of the Pediatric Evaluation of Disability Inventory (PEDI) and the 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. Most recently she led the development of a measure of participation and environment that could be used in population-level survey research on the participation of children and youth with disabilities and the barriers and supports in the environment that affect their participation. 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; and a recipient of the A. Jean Ayres Research Award, the Sargent College Award of Merit, and the 2007 Eleanor Clarke Slagle Award. She also has served as chair of the board of trustees of the American Occupational Therapy Foundation. Dr. Coster received her M.S. in occupational therapy from Boston University and her Ph.D. in psychology from Harvard University.

Maryann Davis, Ph.D., is research associate professor of psychiatry (psychology) and director of the Systems and Psychosocial Advances Research Center (SPARC) and the Transitions Research and Training Center (RTC) at the University of Massachusetts Medical School. She is a clinically trained research psychologist with a distinguished career studying transition-age youth and young adults with serious mental health conditions. This research has focused on those who have received or should receive services from public systems, such as mental health, special education, foster care, and justice systems. Her research informs, develops, and tests interventions, and informs policy and system change. Dr. Davis has received grant funding from the National Institute of Mental Health; the National Institute on Disability, Independent Living, and Rehabilitation Research; the National Institute on Drug Abuse; and the Substance Abuse and Mental Health Services Administration. In much of this research, she has accumulated significant experience in developing real-world strategies for successful and genuine partnerships with transition-age youth and young adults with lived experience of mental health conditions in the design, conduct, and

dissemination of research. As director of the Transitions RTC, Dr. Davis has gained extensive experience in effective strategies for sharing research-based knowledge with key stakeholders, including transition-age youth with lived experience of serious mental health conditions and their families, administrators, policy makers, and service providers. She has shared her expertise in testimony before Congress, through her appointment to multiple committees of the National Academies of Sciences, Engineering, and Medicine, and with the Federal Interdepartmental Serious Mental Illness Coordinating Committee. She is also a founding member of the International Association for Youth Mental Health and the International Youth Mental Health Research Network.

Elena Fuentes-Afflick, M.D., M.P.H., is professor and vice chair of pediatrics and vice dean for academic affairs at the University of California, San Francisco (UCSF). She completed 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 Philip R. Lee Institute for Health Policy Studies. She completed an M.P.H. in epidemiology 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 recently worked on a project studying 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 is currently president of the American Pediatric Society (2017–2018). She was a member of the National Advisory Council of the National Institute for Child Health and Human Development, the National Advisory Council of the Agency for Healthcare Research and Quality, 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 National Academy of Medicine (NAM). Within the National Academies of Sciences, Engineering, and Medicine, she serves as a member of the Board on Children, Youth, and Families and chairs the NAM Membership Committee.

James E. Martin, Ph.D., is Zarrow family professor and endowed chair at the University of Oklahoma, Department of Educational Psychology, and is director of the university’s Zarrow Center for Learning Enrichment. He earned his Ph.D. in special education from the University of Illinois, with a focus on secondary transition. His professional interests focus on the transition of youth with disabilities from high school into postsecondary education and the workforce and on what must be done to facilitate success in high school and postsecondary environments. He examines approaches to 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. Dr. Martin has authored several books, numerous chapters and journal articles, several curriculum lesson packages, and instructional assessments. Most recently he and colleagues co-authored the online Transition Assessment and Goal Generator (TAGG) and wrote supporting materials. He just received another major federal research grant to extend the methods used to develop the TAGG to a new assessment for secondary-aged students with cognitive disabilities. His research, demonstration, and writing activities have been funded by federal, state, and private sources. Dr. Martin has made presentations and conducted professional development workshops across the United States, Canada, and Europe. The Council for Exceptional Children’s (CEC’s) Division on Career Development and Transition honored him with the Oliver P. Kolstoe Award for his efforts to improve the quality of and access to career and transition services for people with disabilities, and most recently his students nominated him for the University of Oklahoma’s graduate student mentoring award. He also recently served as president of CEC’s Division on Career Development and Transition.

James Perrin, M.D., FAAP, is professor of pediatrics at Harvard Medical School, former director of the Division of General Pediatrics and associate chair of pediatrics at the Massachusetts General Hospital for Children. He holds the John C. Robinson chair in pediatrics and founded the Massachusetts General Hospital Center for Child and Adolescent Health Policy, which he directed for more than 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 the 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. He headed the Clinical Coordinating Center (based at the Massachusetts General Hospital) 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 founding editor of the journal Academic Pediatrics (formerly known as Ambulatory Pediatrics). An elected member of the National Academy of Medicine (NAM), he has served on a number of committees for the Institute of Medicine. He also served on the National Commission on Childhood Disability and the Disability Policy Panel of the National Academy of Social Insurance. His experience includes 2 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, and he 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, M.D., Ph.D., is professor and associate dean for research at the School of Social Work at Rutgers University. Before coming to Rutgers, he was at Washington University in St. Louis, with a primary appointment at the Brown School and a secondary appointment in the Department of Psychiatry at the School of Medicine. Dr. Raghavan conducts mental health services research on the needs of vulnerable children, with a specific focus on 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 and 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, on 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 care for the mental health needs of children with emotional disorders. Dr. Raghavan 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, U.S. Department of Health and Human Services. He was also a member of the Committee to Evaluate the Supplemental Security Income (SSI) Disability Program for

Children with Speech Disorders and Language Disorders of the Institute of Medicine (predecessor to the National Academy of Medicine). 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, Ph.D., FAAIDD, is a professor in the Department of Special Education, senior scientist in the Life Span Institute, and director of the Kansas University Center on Developmental Disabilities. Her research focuses on self-determination and systems of support for people with disabilities, and she has a specific interest in the multiple, nested contextual factors that impact outcomes. Dr. Shogren has published more than 130 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, as well as the Supports Intensity Scale–Children’s and Adult Versions. She has received grant funding from several sources, including the Institute of Education Sciences and the National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Shogren is co-editor of Inclusion and Remedial and Special Education.

Ruth E. K. Stein, M.D., is a pediatrician who works in research and advocacy for children, especially those with chronic physical and mental health conditions. She is professor of pediatrics at the Albert Einstein College of Medicine/Children’s Hospital at Montefiore and has subspecialties in developmental and behavioral pediatrics. Her research has been supported by the Maternal and Child Health Bureau, the National Institute of Mental Health, the Office of the Assistant Secretary for Planning and Evaluation (ASPE), the Health Resources and Services Administration (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 more than 235 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 and currently is a member of the National Academies of Sciences, Engineering, and Medicine’s Committee of Medical Experts to Assist Social Security on Disability Issues. She served as cochair of a Board of Children, Youth, and Families study on the evaluation of child health, safety, and well-being and as a consultant for the board’s report on mental disorders and disabilities among low-income children.

Maureen van Stone, Esq., M.S., is associate director of the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute and founding director of Project HEAL (Health, Education, Advocacy, and Law), an MCDD community-based program. Project HEAL is Maryland’s only comprehensive medical–legal partnership, providing advocacy and legal services to children with disabilities who receive clinical services at Kennedy Krieger Institute. Ms. van Stone is also faculty in 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. She is a member of Kennedy Krieger Institute’s ethics committee and vice chair of the board of directors for the Council of Parent Attorneys and Advocates, Inc. Ms. van Stone earned a bachelor’s degree in psychology at the University of Southern California, a master’s degree in developmental psychology at Johns Hopkins University, and a juris doctor at Whittier Law School with a concentration in children’s legal issues. Prior to law school, she worked as a clinician in the Neurobehavioral Unit of the Department of Behavioral Psychology, Kennedy Krieger Institute, for 6 years. Ms. van Stone 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 award, 2014 Very Important Professionals award, 2013 Maryland’s Top 100 Women award, 2012 Leadership in Law award, and 2011 Leading Women award.

John Walkup, M.D., is chair of the Department of Psychiatry, Ann and Robert H. Lurie Children’s Hospital of Chicago. Previously, he was professor of psychiatry, DeWitt Wallace senior scholar, vice chair of psychiatry, and director of the Division of Child and Adolescent Psychiatry, Weill Cornell Medical College and New York-Presbyterian Hospital. Prior to joining the faculty at Weill Cornell, he spent 20 years at the Johns Hopkins School of Medicine serving as professor of psychiatry and behavioral sciences, deputy director in the Division of Child and Adolescent Psychiatry, and associate faculty and director of behavioral research in the Johns Hopkins Center for American Indian Health. He remains an adjunct professor at the Johns Hopkins Bloomberg School of Public Health, with an

appointment in the Center for American Indian Health. After receiving his undergraduate and medical degrees from the University of Minnesota, Dr. Walkup completed his residency in psychiatry and fellowships in child and adolescent psychiatry and research at Yale University School of Medicine. Dr. Walkup is an international authority on Tourette syndrome and has extensive experience as a principal investigator in National Institutes of Health (NIH)-funded treatment trials in child and adolescent psychopathology. His areas of interest also include the development and evaluation of treatments for the major psychiatric disorders of childhood and interventions to reduce the large mental health disparities facing Native American youth. Dr. Walkup has received a number of awards for this work. 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. In the recent past, Dr. Walkup was chair of the Medical Advisory Board of the Tourette Association of America. He is also deputy editor for psychopharmacology for the Journal of the American Academy of Child and Adolescent Psychiatry, and was recently elected councilor-at-large of the American Academy of Child and Adolescent Psychiatry. His research has been published in major medical journals, including the Journal of the American Medical Association and the New England Journal of Medicine, an unusual accomplishment for a child and adolescent psychiatrist.

David Wittenburg, Ph.D., 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. Dr. 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 assessing the efficacy of return-to-work interventions for people with disabilities. Having joined Mathematica in 2005, he 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.

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