Carolyn Allshouse is Executive Director of Family Voices of Minnesota and member of the Parent-to-Parent USA alliance. She has worked on projects to improve care for CYSHCN at the CARE Award with the Children’s Hospital Association, the Center of Excellence on Quality of Care Measures for Children with Complex Needs at Seattle Children’s Research Institute and Achieving a Shared Plan of Care for CYSHCN, funded by the Lucile Packard Foundation.
Debbie Chang, MPH
Debbie I. Chang, M.P.H, is Senior Vice President of Policy and for Nemours Children’s Health System. Ms. Chang was the founding Executive Director of Nemours Health & Prevention Services, an operating division devoted to using a comprehensive multi-sector, place-based model to improve children’s health and well-being in Delaware. She serves on the National Academy of Sciences (NAS) Board on Children, Youth and Families and NAS Roundtables on Population Health and Improvement and Obesity Solutions, the National Center for Children in Poverty, Winter Park Health Foundation Board, Asian Pacific Islander Health Forum and the University of Michigan Griffith Leadership Center Board. Ms. Chang has held key government positions including Deputy Secretary of Health Care Financing at the Maryland Department of Health and Mental Hygiene, with oversight for Maryland’s Medicaid program and National Director of State Children’s Health Insurance Program (SCHIP). Ms. Chang holds a master’s degree in Public Health Policy and Administration from the University of Michigan and a bachelor’s degree in Chemical Engineering from the Massachusetts Institute of Technology.
Mallory Cyr, MPH
Mallory holds a Bachelor of Fine Arts in Creative Writing. She has worked on Healthy and Ready to Work, the federally funded National Center on Health Care Transition, and as the Youth Coordinator for the State of Maine’s Children with Special Health Needs Program. Mallory serves on Got Transition‘s Cabinet Executive Team. She has also served on advisories for Youth Move National, the Catalyst Center, and the National Genetics Alliance. Mallory has provided keynote presentations and technical assistance in many states, on the topics of transition to adulthood, youth engagement and self-determination for young people with special health needs and disabilities. In 2015, Mallory graduated with her Master’s in Public Heath from Boston University School of Public Health, and currently works in state policy in Denver, Colorado.
Christopher Forrest, MD, PhD
Dr. Forrest is Professor of Pediatrics at the Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania. He is the Director of the CHOP Applied Clinical Research Center, which is devoted to advancing multi-institutional clinical and health services research in routine pediatric healthcare settings. Dr. Forrest serves as the Principal Investigator of the PEDSnet (pedsnet.org), a national consortium of children’s hospitals (>6 million children) that conducts patient-centered outcomes research among children and youth.
Amy Houtrow, PhD
Dr. Houtrow is a pediatric rehabilitation medicine physician and health services researcher. She is an Associate Professor and Vice Chair in the Department of Physical Medicine and Rehabilitation for Pediatric Rehabilitation Medicine at the University of Pittsburgh School of Medicine. She directs the Pediatric Rehabilitation Medicine Fellowship and is the Chief of Pediatric Rehabilitation Medicine Services and the Medical Director of the Rehabilitation Institute at the Children’s Hospital of Pittsburgh. Dr. Houtrow’s main clinical focus is caring for children with disabling conditions to help to improve functioning and quality of life to the greatest degree possible. Her research focuses on improving how children with disabilities and their families access health care to optimize health care delivery.
Siem Ia, CPNP, MS, RN
Siem Ia is a Pediatric Nurse Practitioner for the Pediatric Medical Home Program at UCLA. The program provides primary care services and care coordination for children, adolescent, and young adults with medical complexity. Siem has participated in research and quality improvement projects that aim to improve health outcomes for children with medical complexity and enhance family partnerships to support the health of the child and promote family well-being. She has served as a Practice Transformation Facilitator for the UCLA complex care clinic and a local partnering community primary care clinic in a national collaborative. She is a trained Care Transitions Intervention Coach. Siem is the co-chair for the National Association of Pediatric Nurse Practitioner Pediatric (NAPNAP) Children and Youth With Special Health Care Needs Special Interest Group and as co-president for the NAPNAP Los Angeles Chapter. Siem received her Masters of Science in Nursing and PNP from Columbia University School of Nursing.
Jennifer Kyle, RN, MA
Jennifer Kyle is the Senior Director of Product Development for the Special Needs Initiative at United Health Care. She creates strategic vision and brings that to life through program design and development. Her role includes advising and collaborating internally and externally on projects to ensure the delivery of high quality, meaningful services that support children with special health care needs and their families. She works with a particular focus on the development of a portfolio of strategic care delivery solutions that seek to engage and collaborate with a variety of key stakeholders including families, provider organizations, advocates as well as public and private sector champions for children and youth with special health care needs. Prior to joining UHC Ms. Kyle worked at Children’s Minnesota for 15 years providing direct care to children and families in a variety of acute care settings. During her tenure at Children’s Minnesota, she served as a leader for the Minnesota Nurses Association and worked on behalf of nurses at Children’s and across the Twin Cities.
Jennifer is a member of the national workgroup for system standards of care for CYSHCN convened by AMCHP and NASHP. Her work as an advocate for the safety of caregivers and patients, earned her the Minnesota Nurses Association State Health and Safety Award in 2006. Her work on that topic was published in 2010 in the Journal of Pediatric Nursing.
Jennifer Lail, MD
Dr. Jennifer Lail serves as AVP for Chronic Care Systems in the James Anderson Center for Health Systems Excellence at CCHMC. Dr. Lail is a primary care pediatrician in CCHMC’s Complex Care Clinic, and leads Strategy and Quality Improvement with the Complex Care population. Implementation of practice strategies that improve care for children and youth with chronic conditions has been her interest, including development of clinical registries, care coordination programs, family engagement, pre-visit care planning, improved communications with subspecialists and transition planning for CSHCN. She is a current member of the AAP’s Council on Children with Disabilities, the Advisory and Strategic Committees of the National Center for Medical Home Implementation, Quality Improvement Innovation Network, and CCHMC’s Ambulatory Leadership Council. She serves as faculty advisor for both the OHIO Perinatal Quality Collaborative and the Sickle Cell Treatment and Outcomes Research in the Midwest groups, as well as the Collaborative for Improvement and Innovation Network to Advance Care for Children with Medical Complexity.
Lisa Lambert is the Executive Director of Parent/Professional Advocacy League, a family-run organization focused on children’s mental health. She has created a statewide peer to peer network for family partners and instituted monthly “content” trainings, which are highly successful, as well as using highly effective social media strategies to connect families and share information. She has created numerous guides, including a guide for law enforcement and a handbook for parents of transition age youth. She serves on several state and national committees and speaks widely across her state and nationally. Ms. Lambert authored several studies which collected data from families on topics ranging from privacy and electronic health records to access to services and is the co-author of several papers focused on the key role of families.
Beth McManus, ScD, MPH, MS
Dr. Beth McManus is a child health services researcher whose research focuses on systems of care for very young children with special health care needs. She is particularly interested in access to, effectiveness, and cost-effectiveness of Part C early intervention services for infants and toddlers with developmental delays and disabilities. Beth received her ScD in Developmental Epidemiology from the Harvard School of Public Health and an MPH in Maternal and Child Health and a MS in Physical Therapy from Boston University. She is a former Robert Wood Johnson Health and Society Scholar at the University of Wisconsin-Madison. Currently, she is an Associate Professor in the Department of Health Systems, Management and Policy at Colorado School of Public Health. Beth also maintains an active clinical practice as a pediatric physical therapist in the Neonatal Intensive Care Unit at Children’s Hospital Colorado.
Megumi Okumura, MD, MAS
Megumi Okumura, MD MAS FAAP is Associate Professor of Pediatrics and Internal Medicine at the University of California, San Francisco. She is a health services researcher, dual boarded in internal medicine and pediatrics. She was a Robert Wood Johnson Clinical Scholar, completed a fellowship in Health Policy at UCSF and received her Master’s in Implementation and Dissemination Sciences at UCSF. Her studies are aimed at formulating interventions that will address barriers and facilitators to chronic illness care for children with special health care needs as they transition from pediatric to adult-focused health care. Dr. Okumura’s research goal is to generate rigorous evidence to improve the quality of health care provided to patients through implementation of interventions that integrate patients, health care providers, health care systems and community organizations. She is also the scientific co-chair of the Healthcare Transition Research Consortium. In addition to her research work, she sees patients in her primary care internal medicine practice, focusing on adults with childhood-onset chronic conditions transferring from pediatrics to adult focused health care.
Edward Schor, MD
Edward Schor, MD is Senior Vice President at the Lucile Packard Foundation for Children’s Health whose grantmaking focuses on health care system improvement for children with special health care needs. There he initiated the development of national consensus standards for systems of care for children with special health care needs, supported the development of guidance for care planning, and promoted a statewide family advocacy training program to increase family engagement in health care and health policy. Dr. Schor, a pediatrician, has held a number of positions in pediatric practice, academic pediatrics, health services research, and foundations. He served as medical director and policy director for the Iowa Department of Public Health where he led the development of the Iowa Survey of Children and Families, the basis for the National Survey of Child Health. Dr. Schor received post-doctoral training in social and behavioral sciences and has a special interest in the social determinants of child health and family functioning. He published Family Pediatrics, the report of the Task Force on the Family of the American Academy of Pediatrics.
Edwin Simpser, MD, FAAP
Dr. Edwin Simpser is President & CEO of St. Mary’s Healthcare System for Children in New York. St. Mary’s is a Pediatric post-acute healthcare system providing inpatient, day patient, preschool, case management and homecare services to over 2000 Children with Special Healthcare Needs. Dr. Simpser is a Pediatric Gastroenterologist whose early academic career focused on GI & Nutrition care for children with all disease states and he quickly development a focus and expertise in the care for children with Medical Complexity. Dr. Simpser is a tireless advocate for services and program development for medically complex children and their families. He has been involved in numerous local, regional, and national committees and processes around this population. The unique nature of St. Mary’s provides him a broad perspective on the healthcare continuum and on the needs of these children and their families.
Renee Turchi, MD, MPH, FAAP
Renee is the Section Chief of General Pediatrics at St. Christopher’s Hospital for Children. She is Medical Director of the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital for Children in Philadelphia, where she oversees a primary care practice dedicated to CYSHCN, including an FASD program/NICU primary care follow up program and grants. Her faculty appointments include: Associate Professor at Drexel University School of Public Health (Department of Community, Health and Prevention) and Drexel University College of Medicine (Department of Pediatrics). She is the Medical Director of the Pennsylvania Medical Home Program and transition program, a statewide program for pediatric and family practices across Pennsylvania. Her research and clinical work around care coordination, medical home, and children and youth with special health care needs have been presented and published in multiple national forums.
Patience White, MD, MA
Patience H. White, MD, MA, FAAP, FACP is co -Director of Got Transition, the federally funded national resource center on transition and Professor of Medicine and Pediatrics at George Washington School of Medicine and Health Sciences. Throughout her career, she has been active in academic medicine, clinical care, research, and public policy. As part of her work at Got Transition, she is actively involved in providing technical assistance to integrated health care delivery systems, health plans, Title V agencies, pediatric and adult primary and specialty care practices, patient organizations and health provider professional societies. She has published many peer reviewed articles on transition, was a co-author of the 2011 AAP, AAFP, and ACP joint clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home” and is leading the update of the AAP/ACP/AAFP Clinical Report to be published in 2018. She received her MD degree from Harvard Medical School and her master’s in education from GWU School of Education.