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Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop (2022)

Chapter: Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers

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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Appendix B

Biographical Sketches of the Planning Committee Members and Workshop Speakers

PLANNING COMMITTEE

Amy Houtrow (Chair) is a professor of physical medicine & rehabilitation and pediatrics, the endowed chair for Pediatric Rehabilitation Medicine in the department of physical medicine and rehabilitation at the University of Pittsburgh School of Medicine, the vice chair for Quality, as well as the director of the Leadership Education in neurodevelopmental disabilities program at the University of Pittsburgh. For the UPMC Children’s Hospital of Pittsburgh, Houtrow serves as the chief of Pediatric Rehabilitation Medicine and Neuropsychology. Her research focuses on health care access and outcomes for children with disabilities with special emphasis on health equity. She has authored over 130 manuscripts, written and edited textbooks, developed training programs for physicians and other health care professionals, as well as serves as a leader for numerous foundations and academic societies. She was elected into the National Academy of Medicine. She was honored by the American Academy of Pediatrics Council on Children with Disabilities with their lifetime achievement award, by the Academic Pediatric Association with their Health Care Delivery Award and by the American Congress of Rehabilitation Medicine with their Women in Rehabilitation Award.

Emily Hotez is an assistant professor of medicine and developmental psychology researcher at the University of California, Los Angeles David Geffen School of Medicine. She currently serves on the leadership team of the Autism Intervention Research Network on Physical Health, a

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

15-million-dollar HRSA award focused on promoting the physical health of autistic individuals. Hotez’s research focuses on chronic stress: persistent and cumulative stressful experiences over the life course, including lifelong stigma and marginalization across interpersonal, educational, and healthcare contexts. The COVID-19 pandemic magnified health disparities for individuals with disabilities due to chronic stress and much of her work over the past year responded to these disparities. She served as the Principal Investigator on two consecutive AUCD-CDC-funded grants to understand these disparities and identify strategies for supporting those with multiple marginalized intersectional identities. Hotez received her B.A. in psychology from George Washington University and her Ph.D. in developmental psychology from the Graduate Center of the City University of New York.

Chanda Jones serves as the senior case coordinator for the Jacksonville Health and Transition Services program at UF Health Jacksonville in Jacksonville, Florida. Jones has the honor and privilege daily to serve youth and young adults with special health care needs. The opportunity fuels her ongoing passion for advocacy for disability policy and social justice and welfare. Her primary role is to support, educate and identify non-medical services to assist youth and young adults with special health care needs and their families. She has executive committee membership roles with two statewide initiatives that support empowering youth and young adults with special health care needs and their families (Florida Family Leadership Network and Children’s Medical Services Transition Work Group). In, April 2018 she completed her B.A. in sociology (concentration in social welfare) with a minor in psychology at the University of North Florida in Jacksonville, FL.

Yetta Myrick is the mother of a young adult diagnosed with autism spectrum disorder and intellectual disability. She is the Founder and President of DC Autism Parents, a 501(c)(3) non-profit organization in the District of Columbia (DC), where she oversees daily operations and has created programs for children and youth diagnosed with autism and their families. Myrick serves as the Centers for Disease Control and Prevention’s (CDC) Act Early ambassador to Washington, DC. She is leading the DC Act Early COVID-19 Response Team Project funded by the CDC and the Association of University Centers on Disabilities. She was appointed by DC Mayor Muriel Bowser to serve as a member of the DC Developmental Disabilities Council and is a member of the Got Transition® National Family Health Care Transition Advisory Group. Myrick holds a B.A. in communication studies from the Catholic University of America.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Natasha Strassfeld is an assistant professor of special education in the department of special education at the University of Texas at Austin. Her research examines the ways in which parents navigate the special education and accommodations processes via legal and policy mechanisms, racial/ethnic disparities in how students are (mis)identified for special education placements and services, and special education and related services within the juvenile justice system. Her work has been generously funded by the Spencer Foundation and by the Robert Wood Johnson Foundation. She obtained her J.D. degree from the University of Wisconsin School of Law and her Ph.D. in special education from Pennsylvania State University.

Marc J. Tassé is a professor in the department of psychology and department of psychiatry and behavioral health at The Ohio State University. He is also the director of the Ohio State Nisonger Center, a University Center for Excellence in Developmental Disabilities. Tassé has a focus on the assessment and intervention of co-occurring mental/behavioral health concerns, supporting individuals with disabilities and their families, and diagnostic issues. His publications include over 165 articles in peer-reviewed journals, book chapters, and books. He has been recognized by the American Association on Intellectual and Developmental Disabilities, the Exceptional Service Award, the American Psychological Association, the John W. Jacobson Award, and for his contributions to the field of intellectual and developmental disabilities in the U.S. Tassé also was the president of the American Association on Intellectual and Developmental Disabilities.

WORKSHOP SPEAKERS

Rishi Agrawal is a professor of pediatrics at Lurie and La Rabida Children’s Hospitals in Chicago who focuses on the care of children with medical complexity. He founded the Academic Pediatric Association Complex Care Special Interest Group, and currently serves on the Executive Committee of the American Academy of Pediatrics Council on Children with Disabilities.

Renée Boynton-Jarrett, a pediatrician and social epidemiologist, is an associate professor at Boston Medical Center and Boston University School of Medicine. She is the founding director of the Vital Village Networks, which uses a trauma-informed lens to improve community capacity to promote child wellbeing and advance equity through dedicated collaborative partnerships, research, data-sharing, and community leadership development in Boston and nationally through the NOW Forum and CRADLE Lab. Boynton-Jarrett’s scholarship has focused on early-life adversities as life course social determinants of health. She has a specific concentration on psychosocial stress and neuroendocrine and reproductive health outcomes,

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

including obesity, puberty, and fertility. She has received numerous awards for teaching, clinical care, and public health including the Massachusetts Public Health Association Paul Revere Award for outstanding impact on public health. Boynton-Jarrett received her A.B. from Princeton University, her M.D. from Yale School of Medicine, and Sc.D. in social epidemiology from Harvard School of Public Health, and completed her residency in pediatrics at Johns Hopkins Hospital.

Kristen Choi is an assistant professor of nursing and public health at UCLA. She is a health services researcher studying mental health, trauma, and violence among vulnerable populations. Her research includes studies on health services for children with autism and developmental disabilities, adverse childhood experiences, and homelessness and serious mental illness. In addition to her role at UCLA, Choi practices as a psychiatric registered nurse at a safety net hospital in Los Angeles. She is an adjunct investigator in the Department of Research & Evaluation at Kaiser Permanente Southern California and an Associate Director of Nursing for the UCLA National Clinician Scholars Program.

Emily Cowen is a member of self-advocacy groups Kids as Self-Advocates, Youth as Self-Advocates, and People First of Connecticut and is the Youth Coordinator for Kids as Self-Advocates. She is a student at Sacred Heart University, majors in psychology, and is a young adult who has cerebral palsy.

Helen DuPlessis is an accomplished physician executive with leadership experience in health management, program and policy development, practice transformation, public health, maternal and child health, community systems development, medical training, performance improvement, and managed care. She is currently a principal with Health Management Associates, bringing her broad expertise to health plans and systems, state and local governments, national health organizations and programs, community clinics and provider groups, community-based and other health and human services programs.

Ian Ferguson is an associated professor for clinical pediatrics at Yale University School of Medicine and completed pediatrics training at St. Christopher’s Hospital for Children in Philadelphia, later moving to Children’s Hospital of Pittsburgh for a pediatric rheumatology fellowship. He has been practicing pediatric rheumatology at Yale and treats inflammatory disease ranging from inflammatory arthritis to vasculitis in children, adolescents, and young adults.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Angel Fettig is an associate professor in special education at the University of Washington. Her research and teaching focuses on supporting the social-emotional development and reducing challenging behaviors for young children with or at risk for disabilities. Specifically, she examines factors that influence implementation and intervention fidelity for education professionals and caregivers in implementing evidence-based practices. Fettig is committed to utilizing mixed methods research approaches to examine mechanisms that promote culturally responsive, family-centered practices in early childhood settings to maximize children’s learning opportunities in natural environments.

Carolyn Foster is an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine and an attending physician at Ann & Robert H. Lurie Children’s Hospital of Chicago in primary and complex care. She focuses on developing and evaluating health care delivery interventions for children with chronic complex illness and disability that maximizes their health outcomes and participation within a family context. As co-research lead of Lurie Children’s Care Connect digital health programs, Foster helps guide evaluation of the use of emerging health technologies across the pediatric health care continuum with a focus on care at home. She has funding from the National Heart Lung and Blood Institute to develop remote patient monitoring in care for children dependent on home mechanical ventilation as well as funding from the Lucile Packard Foundation for Children’s Health to improve quality measurement for pediatric home health care. Foster received her M.D. from Harvard University and her health services research fellowship training from the University of Washington and Seattle Children’s Hospital.

Molly Fuentes is an assistant professor and Pediatric Rehabilitation Medicine fellow at Seattle Children’s Hospital. Her clinical interests include traumatic brain injury including concussions, cerebral palsy, functional impairments related to other medical conditions or developmental disorders, and spinal cord injury. Fuentes’s research includes health disparities in American Indian and Alaska Native children with disabilities, disparities in access to rehabilitation services, culturally relevant rehabilitation, and functional outcome measures and interventions.

Nichole Goble is the current associate director for Community Initiatives at Caregiver Action Network (CAN). She works with colleagues to develop and implement the many tools and resources for family caregivers that CAN makes available. Goble brings to her role a unique perspective of being an individual born with a rare condition and being a caregiver for members of her family.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Kasey Hodges was hired by Arkansas Support Network (ASN), where she taught acting and helped build a community garden for the individuals supported with ASN. She has lived with a disability all her life and it has impacted everything she does. Hodges daily choice is to speak up for herself: about who she is, what she wants, and how she wants to be treated. As a result, she has gotten to serve on the Arkansas Governor’s Council on Developmental Disabilities and, most recently, become the Ethics and Mission Integration Director at ASN.

Margarita Hunnefield after college was a targeted case manager for Northeast Florida State Hospitals Community Behavioral Health in Macclenny, Florida and BJC Behavioral Health in St. Louis, Missouri. During her time at Northeast Florida State Hospital Community Behavioral Health, she was an emergency services evaluator for individuals held in the hospital or jail that required an evaluation to determine admittance to the hospital for mental health treatment. Hunnefield has a son who was diagnosed at age four with Attention Deficit and Hyperactivity Disorder and has a brother who was diagnosed as an infant with Spina Bifida. She has made it her mission to advocate for those with disabilities as it touches her individual life in many ways. Hunnefield also has a disability, determined to have a congenital cataract in her left eye, which left her legally blind on that side. Once provided with corrective glasses, she increased her reading ability and pursued her education and career.

Caprice Knapp is the North Dakota Medicaid director. She brings to the position experience working on Medicaid and CHIP in the private sector, state and federal policymaking, and academics. She was the federal policy director for Molina Healthcare, Inc., an associate professor in the department of health outcomes and policy at the University of Florida (where she conducted external quality review activities for Texas and Florida Medicaid and CHIP programs as well as maternal and child health research), and she worked in the Governor’s Office of State Planning and Budgeting in Colorado as well as the U.S. House of Representatives Energy and Commerce Committee as a Robert Wood Johnson health policy fellow. Knapp’s career has been focused on vulnerable populations, delivery system reform, and global health. Her global health projects also focus on maternal and child health and have been conducted in Africa, Asia, Europe, and South America. At the University of Florida, Knapp earned a Ph.D. in economics and completed postdoctoral training in health services research.

Dennis Z. Kuo is an academic pediatrician practicing both general and developmental pediatrics. He is the chief of developmental and behavioral pediatrics at University of Rochester, associate professor of pediatrics at

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

the University at Buffalo, as well as division chief of general pediatrics and interim chief of developmental pediatrics and rehabilitation at UBMD Pediatrics/Oishei Children’s Hospital. Kuo’s academic work has focused on family-centered care and family-identified health care needs of children with disabilities and medical complexity, early childhood systems, care coordination design and health care system reform. During the COVID-19 pandemic, he was responsible for designing and implementing telemedicine services and served as author, consultant, and speaker on school safety, support for children with disabilities, and telemedicine services. Kuo is the immediate past chair of the American Academy of Pediatrics Council on Children With Disabilities.

Kristina Lopez is an assistant professor in the school of social work at Arizona State University. Lopez was previously an assistant professor at California State University, Long Beach in the School of Social Work. She is an expert in Latinx children with autism spectrum disorders (ASD) and their families. Lopez has worked with children and youth with ASD and helped educate parents raising children with ASD. Her research interests include family experiences raising children with autism, the development and implementation of culturally informed autism intervention for Latinx families, and ecological and socio-cultural perspectives of disparities in age of diagnosis and treatment access among underserved populations. A vital aspect of her research is the integration of community resources to advance the design of culturally informed models of intervention that foster child outcomes, parent-child interactions, autism awareness, receipt of services and community involvement among Latino families. Many of her projects are multi-site intervention studies to understand the feasibility of psycho-education programs for parents of children with ASD and identify them as evidenced-based practice. Lopez received a B.A. and M.A. in psychology from California State University, Northridge, as well as a M.S.W. and M.S. in psychology, and her Ph.D. in social work and psychology, from the University of Michigan.

Marcia Montague is a clinical assistant professor in special education at Texas A&M University. Her research and service interests focus on equity in access for individuals with disabilities, including family empowerment, disaster preparation, and disaster recovery. Montague has supervised field practicum, internships, and clinical teaching of undergraduate and graduate students. She also has special education experience in public schools where she taught students with various disabilities. Montague engages in dedicated efforts to develop and maintain solid partnerships with surrounding school districts. This work has included leading efforts in mentoring, tutoring, developing and implementing academic and social skills camps,

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

and providing professional development training. Outside of the school setting, Montague has worked with many Local Authorities on Intellectual and Developmental Disabilities in Texas. She has provided numerous trainings to disability service providers, emergency managers, mental health care providers, rehabilitation professionals, disaster case managers, aging and disability groups, and families. Montague earned her Ph.D. from the Texas A&M University department of educational psychology with an emphasis on special education leadership and interagency collaboration.

Shasta Kearns Moore is a public interest journalist who has been widely published in her home state of Oregon as well as in newspapers in France and Russia. Her identical twin boys survived being born three months early, resulting in a host of disabilities. Blending her years of daily caregiving experience with her knowledge of government systems and interest in public policy, she now writes a weekly newsletter that offers researched news and information to those raising disabled children, found at www.MedicalMotherhood.com.

Rita Nathawad is a social pediatrician in Jacksonville, Florida. She is also an assistant professor of pediatrics in the division of community and societal pediatrics at the University of Florida (UF), College of Medicine-Jacksonville. She completed her pediatric residency training and pediatric infectious disease fellowship training at SUNY Downstate Medical Center in Brooklyn, NY. She is medical director for the Bower Lyman Center for the Medically Complex Child and the Jacksonville Health and Transition Services programs, providing care to Jacksonville’s most fragile high-risk children, youth and young adults. As an expert in health care transition, the shift from pediatric to adult based care, Nathawad continues to play a key leadership role in this area. She is also the associate program director of the Pediatric Residency Program. Her clinical, education, research and advocacy work are all grounded in the principles of child rights, health equity and social justice and she has given multiple workshops, presentations and developed curricula on these topics.

Denise Nunez is a pediatrics trained Preventive Medicine physician from University of California, Los Angeles (UCLA). She is a faculty physician at the Leadership for Neurodevelopmental and Related Disabilities Clinic at UCLA. Nunez also directs Addiction Prevention initiatives at the Department of Medicine and leads the UCLA Anti Vaping Champions task force. She is of Latinx background and supports her local communities via advocacy for health and wellness for children and adults residing in greater Los Angeles.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Jean Leclerc Raphael is division chief for Academic General Pediatrics, professor of pediatrics, and vice chair for Clinical Affairs in the department of pediatrics at Baylor College of Medicine and Texas Children’s Hospital. He is a nationally recognized health services researcher with a focus on health equity and improving systems of care for underserved children. He has been funded by the National Institutes of Health, Patient-Centered Outcomes Research Institute, and Health Resources and Services Administration. Raphael’s research is complemented by policy efforts toward improving the care of vulnerable populations. He is founding director of the Center for Child Health Policy and Advocacy at Texas Children’s Hospital. He is also the president elect for the Academic Pediatric Association. Raphael is a past appointee of the Lieutenant Governor to the Texas Health Disparities Task Force. His awards have included: the Research Mentorship Award from the Department of Pediatrics at Baylor College of Medicine, Health Advocacy Award from Doctors for Change, and Meritorious Service Award from the Texas Health and Human Services Commission. Raphael is a practicing primary care pediatrician, serving vulnerable children throughout Houston. He received his B.A. from Williams College, M.D. from Harvard Medical School, and M.P.H. from the Harvard School of Public Health. He completed his pediatric training at the Boston Combined Residency in Pediatrics and he completed the Commonwealth Fund Harvard University Fellowship in Minority Health Policy.

Leslie Rogers works as the accessibility/disability services coordinator for Umpqua Community College. His daughter Gloria was born in 2013 and was diagnosed in her first year of life with de novo Cardio Facio Cutaneous Syndrome and Infantile Spasms. Gloria receives disability services through Children’s In-home Intensive Services. Rogers is an advocate for the developmental disability community, and his experience growing up with his special needs adopted siblings helped prepare him well for life as an advocate at the regional, state, and national level. Rogers has been the director of the Student Support Services Federal TRiO grant and has taught several courses at Umpqua Community College. He has also worked as a junior high and high school teacher, as well as a football coach at an inclusion-focused early college Kindergarten-12 school in California. Rogers is a credentialed teacher in Oregon and California. He was appointed to the State Interagency Coordinating Council (0-5 Special Education Council) and the Oregon Universal Healthcare Taskforce by Governor Brown in Oregon and he serves as a board member of Cardio Facio Cutaneous Syndrome International and serves on the Disability Services Advisory Council for his region. Rogers holds a B.A. in economics and a M.P.A. from California State University.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Roseani Sanchez has dedicated her time to family engagement. Over that time, she supported families of children with special needs to access health services and education appropriate for their needs. In her direct work with children who have autism and related disorders, she has supported families to improve access to services and participation during the process. She is currently a program director at Family Voices National, where she focuses on organizational development across different projects that support underserved communities’ inclusion in all aspects of family engagement and family-centered practices. She has a M.S. in curriculum and instruction from Arizona State University, specializing in autism from Complutense University in Spain, and a bachelor’s degree in psychology and mental health from the University of Puerto Rico.

Rebecca Seltzer is an assistant professor of pediatrics at the Johns Hopkins School of Medicine, division of general pediatrics, with joint faculty appointments at the Berman Institute of Bioethics and Bloomberg School of Public Health. Her research focuses on the intersection of pediatric medical and social complexity, with a particular focus on improving care delivery and well-being for children with medical complexity in or at risk of entering the child welfare system. In order to inform practice and policy change, her research actively engages parents of children with medical complexity and stakeholders from various systems of care (e.g., health care, child welfare, Medicaid, housing) to better understand the unique challenges that arise when caring for this population, including gaps in supports, services, and placement options. Seltzer is an attending physician at the Harriet Lane Primary Care clinic. She teaches clinical ethics to medical trainees at Johns Hopkins. Seltzer received her B.A. from the University of Virginia as an Echols scholar, received her M.D. from the Perelman School of Medicine at the University of Pennsylvania, completed pediatric residency training at the Children’s Hospital of Philadelphia, completed fellowship training in academic general pediatrics and ethics at Johns Hopkins, and received an M.H.S. from the Johns Hopkins Bloomberg School of Public Health.

Rebecca Shaffer is a clinical psychologist and associate professor of Pediatrics at Cincinnati Children’s Hospital. She is also the director of psychological services for the Cincinnati Fragile X Center and creator of the Regulating Together intensive outpatient program for autistic youth. She specializes in autism spectrum disorder (ASD) and fragile X syndrome and has a strong interest in emotion regulation intervention. Shaffer believes in empowering families and youth with the skills they need to manage stress and strong emotions, particularly those impacted by disparities. She currently provides telehealth services for fragile X and ASD. She also leads a wide range of studies related to ASD including funding from Simons

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Foundation, Department of Defense, and the Autism Care Network. Additionally, she is a co-investigator for several fragile X studies funded through NIH and industry partners.

Karrie A. Shogren is director of the Kansas University Center on Developmental Disabilities (a University Center for Excellence in Developmental Disabilities), senior scientist at the Schiefelbusch Life Span Institute, and professor in the department of special education all at the University of Kansas. Shogren’s research focuses on assessment and intervention in self-determination and supported decision making for people with disabilities. She has led multiple grant-funded projects, including assessment validation and efficacy trials of self-determination interventions in school and community contexts. Shogren has published over 200 articles in peer-reviewed journals and is the author or co-author of 10 books. She has received grant funding from several sources, including the Institute of Education Sciences and National Institute on Disability, Independent Living, and Rehabilitation Research.

Maurice Sholas is the principal for Sholas Medical Consulting, LLC. In this capacity, he solves operational challenges for hospitals and health care agencies. In addition he is a subject matter expert on children with special health care needs. Sholas previously served as a senior medical director for multiple Children’s Hospitals and has founded multiple programs in Pediatric Rehabilitation Medicine. His work, whether clinical or administrative, is focused on optimizing function and advocating for the marginalized. For college, he attend Southern University in Baton Rouge for a B.S. in Biology and an emphasis in Spanish. He then moved on to the M.D. and Ph.D. program at Harvard Medical School. In addition to Medical Education, this program allowed Sholas to receive a terminal degree in the study of neuroscience. He then moved onto graduate medical education in physical medicine and rehabilitation at the University of Texas, Health Science Center at San Antonio. Sholas also completed subspecialty training at the Rehabilitation Institute of Chicago (Shirley Ryan Ability Lab) in pediatric rehabilitation medicine.

Tina Smith is the telehealth director for the University of Florida, college of medicine department of pediatrics. She is a member of the University of Florida’s, Jacksonville, Telehealth Task Force Committee, Continuing Medical Education Committee, SPROUT member, and AAP Section on Telehealth member. Smith’s interests include helping facilitate new programs in utilizing telehealth to improve access to care and patient outcomes. She holds a B.S. from Le Moyne College in Syracuse, NY, and also holds certifications as a certified telehealth liaison and certified telehealth coordinator.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

Kristin Sohl is a professor of clinical child health at the University of Missouri, school of medicine. She is the founder and executive director of ECHO Autism and the medical director for MU Missouri Telehealth Network and the MU Office of Continuing Medical Education. She is a pediatrician with extensive experience in medical diagnosis, evaluation, and longitudinal support of people with a question of autism and other developmental/behavioral disorders. She founded ECHO Autism which is an innovative framework to increase community capacity to care for people with autism. It is viewed as the leading model in expanding equitable access to best practice screening, evaluation, diagnosis, and longitudinal support for autistic people particularly in underserved and rural populations. Sohl is the president of the American Academy of Pediatrics, Missouri Chapter. She is the chair of the American Academy of Pediatrics, Autism Subcommittee within the Council on Children with Disabilities. She completed medical school and pediatric residency at the University of Missouri.

Christopher Stille is a professor of pediatrics and section head of general academic pediatrics at the University of Colorado, school of medicine and Children’s Hospital Colorado. He leads a group of pediatric faculty, practices and teaches primary care pediatrics, and conducts pediatric health services research and quality improvement focused on improving systems of care for children and youth with special health care needs (CYSHCN) in the Medical Home. He is principal investigator of a MCHB-funded national network to conduct health systems research for CYSHCN, CYSHCNet (www.cyshcnet.org). He is a co-chair of the Standing Committee on Patient Experience and Function of the National Quality Forum. He is membership chair and a member of the Executive Committee of the Council on Children with Disabilities of the American Academy of Pediatrics.

Laura Stough is professor of educational psychology, assistant director at the Center on Disability and Development, and faculty fellow at the Hazards Reduction and Recovery Center at Texas A&M University. Her professional career has focused on the equitable provision of psychological, educational, and social services for people with disabilities. Stough has been investigating how environmental hazards affect individuals with disabilities and other historically marginalized populations. She leads Project REDD: Research and Education on Disability and Disaster, which provides research-based training and outreach to emergency managers, voluntary organizations, and individuals with disabilities. Stough has authored over 60 scholarly publications and presented at over 140 professional conferences. She is chair of the Special Interest Group on Emergency Preparedness for the Association of University Centers on Disabilities and former chair of the Disability Task Force for the Division on Emergency Management for

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

the State of Texas. She served as a U.S. Peace Corps volunteer in Nicoya, Costa Rica, and with the Peace Corps Crisis Corps in response to Hurricane Katrina.

Emily Shea Tanis is currently associate research professor at the Kanas University Center in Developmental Disabilities, Life Span Institute, University of Kansas. She is nationally recognized for her expertise in applied technology solutions, Technology First, cognitive accessibility features in technology, and advancing the rights of people with cognitive disabilities to technology and information access. Tanis also serves as a principal investigator for the State of the States in Developmental Disabilities Longitudinal Data Project of National Significance funded by the U.S. Office on Intellectual and Developmental Disabilities and is a co-author on The State of the States in Developmental Disabilities Monograph. She is the sibling of a man with a traumatic brain injury and is past chair of the National Sibling Leadership Network and co-founder of the Colorado Sibling Leadership Network Chapter. Tanis received her Ph.D. from the University of Kansas, department of special education, and B.A. from Brown University in psychology.

Doris Tellado is the mother of two children, with her youngest son being diagnosed with Larsen syndrome and Autism. Since his birth, Doris and her husband have been navigating his complex medical care and education. Doris works as a family resource specialist for the University of Florida North Central Early Steps where she shares her experiences with other parents and professionals and helps families as they learn to navigate early intervention, and other systems of care.

Allysa Ware is the associate director of programs and strategies with Family Voices. Ware has spent the last decade working to improve access to education, medical services, and community supports for children with special health care needs and their families. She is licensed by the Association of Social Work Boards as a licensed graduate social worker in Washington, D.C. and Maryland. Ware also has a 19-year-old daughter with an autism spectrum disorder. She received her master’s degree in social work from The Catholic University of America (CUA) and is currently pursuing her Ph.D. in social work at CUA with a research focus of autism diagnosis and treatment in the African-American community.

Lauren Ware is a junior at University of Maryland Baltimore County studying flute performance and minoring in social welfare. She has spent her life engaged in the arts but has pursued playing the flute as her passion. Additionally, Lauren has spent her teenage years advocating for African

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×

American youth with disabilities through various organizations and public engagements including developing a webinar for the National Institute of Mental Health on healthcare transition. Lauren also is a youth leader on the Family Voices United to End Racism for CYSHCN and Their Families Advisory Board with Family Voices.

Ani Whitmore is a research psychologist with nearly a decade of quantitative and qualitative research, evaluation, and project management experience. She has expertise in child development and school-based mental health, developmental disabilities, and research methodology. Whitmore received her B.A. from Spelman College, her M.A. and Ph.D. (developmental psychology) from Georgia State University, completed a program evaluation postdoctoral fellowship at the Centers for Disease Control and Prevention, and is a certified project management professional.

Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Page 99
Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×
Page 100
Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
×
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Page 102
Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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Suggested Citation:"Appendix B: Biographical Sketches of the Planning Committee Members and Workshop Speakers." National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26702.
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An estimated 10 percent of children in the United States are living with disabilities, including a disproportionate number of children living in poverty and children of marginalized racial and ethnic groups. During the pandemic, children with disabilities suffered disproportionately compared to their peers without disabilities. To learn more about what policies and practices might be sustained or implemented beyond the pandemic to support children with disabilities and their families, the Board on Children, Youth, and Families hosted a workshop on June 13-15, 2022. Workshop presenters included service providers, researchers, government leaders, youth with disabilities, and caregivers of children and youth with disabilities. In this workshop, practices were identified that could improve the system of care for children with disabilities as well as improve access to services for underserved and marginalized populations.

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