Network Director and NCC Director, Professor of Pediatrics and University of Colorado Denver (UCD) and Section Head, General Academic Pediatrics, Children’s Hospital Colorado (CHCO)
Dr. Stille is a general pediatrician with over 20 years of experience with CYSHCN. He practices primary care and outpatient complex care at Children’s Hospital Colorado. He has conducted primary care network research since 1999, with local networks as well as the national Pediatric Research in Office Settings (PROS) network. His major research interest is bringing researchers and practitioners together to improve systems of care for CYSHCN, and improving partnerships in the “medical neighborhood” between primary care practitioners, specialists and families. He is on several national working groups to improve care for patients and families, including the American Academy of Pediatrics and the National Quality Forum.
Associate Network Director and CRE Director,
Assistant Professor of Pediatrics, Boston Children’s Hospital,
Harvard Medical School Associate Network Director and CRE Director
As a general pediatrician and hospitalist, Dr. Berry’s 15 years of clinical, quality improvement initiatives, health services research, and policy work have focused on optimizing health outcomes and systems for children with medical complexity through proactive care planning, perioperative care coordination, integrated health information management, high quality discharge planning, and use of home and post-acute care services. His work has been published in JAMA, BMJ, and PLoS Medicine and has been awarded nationally by the Center for Integration of Medicine and Innovative Technology, the Agency for Healthcare Research and Quality, and Academy Health.
Network Director of Patient and Family Engagement,
Ms. Wells is Executive Director of Family Voices’ (FV) National Office, an internationally renowned entity striving to achieve family-centered care for all CYSHCN. FV provides families with resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and be a trusted resource on health care. In her 26 years with FV, Ms. Wells has trained and offered technical assistance to family leaders and professionals throughout the country, testified in Congress, and collaborated on advocacy, clinical, policy, and research projects with numerous pediatric clinicians and federal and private agencies. Ms. Wells and Family Voices will ensure active partnership with families at all Network levels.
Executive Committee Member, Project Director,
Ms. Hoover started advocating for patients, families, and quality healthcare shortly after her daughter’s diagnosis with cystic fibrosis in 2005. She served first as family faculty for residents and nursing students and later joined or co-founded three Advisory Councils supporting family-centered care at the University of New Mexico Hospital and Health Sciences Center. Ms. Hoover completed her Master’s in Public Health at the University of New Mexico. Ms. Hoover was a Pediatric Pulmonary Center Family Leadership Fellow, received the Young Maternal-Child Health Professional Award from the Association of Maternal-Child Health Programs, and completed the Georgetown University Leadership Institute for Cultural Diversity and Linguistic Competence. She is currently a project director for Family Voices, a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs.
Professor of Pediatrics and Harvard Medical School,
Founder of Massachusetts General Hospital for Children (MGHfC) for Child and
Adolescent Health Policy
Dr. Perrin is recent past President (2014) of the American Academy of Pediatrics and formerly led the Autism Intervention Research Network on Physical Health. His early work on childhood chronic conditions began with leadership of the Vanderbilt study of children with chronic conditions and their families. An elected member of the National Academy of Medicine, he has served on NAM panels on children’s disability. Founding editor of the journal, Academic Pediatrics, he has over 200 peer reviewed publications on CYSHCN, including 4 randomized clinical trials on children (e.g. disease education and stress management for children with asthma; payment model on physician practice behavior; EHR-decision support for children with ADHD).
Professor of Pediatrics and Health Policy & Management at UCLA,
Chief of General Pediatrics at UCLA Mattel Children’s Hospital
Paul J. Chung, MD, MS, is Professor and Chair of Health Systems Science at the Kaiser Permanente School of Medicine (KPSOM). He is also Adjunct Professor of Pediatrics and Health Policy & Management at UCLA and President of the Academic Pediatric Association. Prior to his appointment at KPSOM, he was Chief of General Pediatrics and Director of Health Services Research at UCLA Mattel Children’s Hospital, Associate Director of the UCLA National Clinician Scholars Program, and Chair of the Pediatric Policy Council, a federal child health policy consortium in Washington, DC. His personal research interests include (1) primary care redesign for medically and socially complex children, and (2) childhood determinants of adult health including early childhood development, educational environments, child and adolescent health behaviors, juvenile justice, and child poverty and adversity. His research has been funded by NIH, CDC, HRSA, RWJF, and other public and private agencies.
Associate Professor of Pediatrics,
MassGeneral Hospital for Children, Harvard Medical School
Dr. Kuhlthau is a nationally-recognized, health services researcher with a background in Sociology and Demography. Her 130 publications focus mostly on CYSHCN. She has strong quantitative and qualitative methodological skills, is senior faculty at the Harvard-wide Pediatric Health Services Fellowship, and received the Excellence in Mentoring Award from Harvard Medical School. She has been PI of the HRSA-funded Autism Intervention Research Network on Physical Health for the past four years and she co-directs the Clinical Coordinating Center for the Autism Treatment Network (ATN). She has strong experience involving families in multi-site research studies.
National Coordinating Center, University of Colorado Denver,
Adult and Child Consortium for Health Outcomes Research and Delivery Science
Dr. Shelton manages the National Coordinating Center’s administrative arm. She is a former critical care nurse with expertise in health literacy, social determinants of health, and underserved populations. She is a medical sociologist with a masters degree in policy and nonprofit management. In her spare time she teaches sociology at Metropolitan State University of Denver.
Director of Research Education,
Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine
Rishi Agrawal, MD, MPH is an Associate Professor of Pediatrics at Northwestern University Feinberg School of Medicine and is a pediatric hospitalist at Lurie and La Rabida Children’s Hospital in Chicago. He is co-chair of the Academic Pediatric Association Complex Care Special Interest Group and has a research interest in Children with Medical Complexity.
Senior Project Director, Center for Innovation in Social Work and Health,
Meg Comeau, MHA is a senior project director at the Center for Innovation in Social Work and Health at Boston University. She is a nationally recognized expert on the impact of Medicaid and federal health care reform on children with complex care needs. She brings more than 15 years of health care delivery and financing experience to her role as principal investigator for the Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC) and as principal investigator of the Catalyst Center, a project focused on insurance coverage for children and youth with special health care needs. Meg is a member of the Leadership Circle for the Institute for Professionalism and Ethical Practice (IPEP) at Boston Children’s Hospital and also serves as faculty for IPEP’s Program to Enhance Relational and Communication Skills.
Assistant Professor of Pediatrics, Chief of Hospital Medicine,
University of Wisconsin School of Medicine and Public Health
Dr. Coller is Assistant Professor of Pediatrics, Chief of Hospital Medicine at University of Wisconsin School of Medicine and Public Health, and an investigator at the University of Wisconsin Health Innovation Program. He is co-founder and co-director of the UW Pediatric Complex Care Program – a medical home for children with medical complexity. He completed medical school at Johns Hopkins University, residency and chief residency at Mattel Children’s Hospital UCLA, and fellowship through the Maternal and Child Health Bureau’s Child and Family Health Leadership Training Program at UCLA. Dr. Coller’s research focuses on eliminating hospitalizations for children with medical complexity. His research program’s long-term goal is to improve patient and family well-being by creating high-quality, safe, seamless experiences across the healthcare continuum. Dr. Coller is a member of the Editorial Board of Pediatrics, the National Quality Forum’s Patient Experience and Function standing committee, and co-author of Child Health: a Population Perspective.
Professor of Clinical Pediatrics,
Vanderbilt University School of Medicine
Dr. Hall is Professor of Clinical Pediatrics at Vanderbilt University School of Medicine and the Section Head and founder of the Program for Children with Medically Complex Needs at Monroe Carell, Jr. Children’s Hospital. Prior to coming to Vanderbilt, he directed the Complex Care Center at Cincinnati Children’s Hospital Medical Center. Dr. Hall is a general pediatrician and former children’s hospital medical director who saw first-hand the need for improvement in the care of children with medical complexity. He became an early advocate for this population and has been involved in health services research, studying their impact on health care utilization, readmissions, and children’s hospitals. In addition, he is a clinician and educator who provides direct care to children with medically complex illness on a daily basis.
Associate Professor of Pediatrics, University of Buffalo,
Chief, Division of General Pediatrics,
Interim Chief, Division of Developmental Pediatrics & Rehabilitation
Dr. Dennis Kuo is a primary care pediatrician with a special interest in children with disabilities and medical complexity. He is Associate Professor of Pediatrics at the University of Buffalo, Division Chief of General Pediatrics at UBMD Pediatrics and an attending physician at Oishei Children’s Hospital in Buffalo, NY. His academic work has focused on family-centered care and family-identified health care needs of children with medical complexity, and more recently has evolved to care coordination design and health care system reform. Dr. Kuo’s prior work funded by Health Services and Resources Administration includes the Arkansas System of Care State Implementation Grant for Children with Special Health Care Needs, the Maternal and Child Health Research grant, and the Early Childhood Comprehensive Systems project. He is the current Chair of the American Academy of Pediatrics Council on Children with Disabilities (COCWD), following six years of serving on the Executive Committee of the COCWD, and he is a member of the Board of Directors of Family Voices.
Associate Professor of Pediatrics,
Children’s Memorial Hermann Hospital
Dr. Ricardo A. Mosquera is an Associate Professor of Pediatrics and Pulmonary attending at Children’s Memorial Hermann Hospital and serves as medical director of the High Risk Children’s program (complex care program) at McGovern Medical School at UTHealth. Dr. Mosquera’s interest is to develop, assess, refine and promote advances in care for children with medical complexity (CMC). He conducted the first randomized clinical trial of an enhanced medical home for children with medical complexity. Published in JAMA, the trial demonstrated that comprehensive care delivered by the same complex care team who follow the patients in all settings, achieved the triple aim of improved healthcare outcomes (hospital utilization was reduced 47-69%), cost effectiveness (total clinic and hospital costs were reduced by $10 258 per child-year) and, improved patient experience of care (increased patient satisfaction). Dr. Mosquera and his team are developing a complex care fellowship program and have several ongoing clinical trials of health service interventions for CMC. Dr. Mosquera’s work is positioned to be rigorously tested and disseminated to multiple network sites.
Medical Director Minnesota Health Care Programs Department of Human Services Children’s Minnesota Emergency Medicine
Jeff is the medical director for Health Care Programs at the Minnesota Department of Human Services. His work focuses on the development of benefit policy, quality measurement, and advancement of improved care delivery models. He actively participates on the team overseeing Minnesota’s medical home program, accountable care demonstration pilot, and State Innovation Model. He oversees implementation of Minnesota Medicaid perinatal initiatives.
Associate Director for Child and Adolescent Health,
The Association of Maternal and Child Health Programs (AMCHP)
Kate Taft, MPH is the associate director for child and adolescent health at AMCHP, where she leads and supports the development, implementation, and evaluation of program activities related to child and adolescent health, including children and youth with special health care needs. Prior to this role, she led AMCHP’s work related to autism spectrum disorders and other developmental disabilities, including the State Public Health Autism Resource Center. Ms. Taft has over a decade of experience working on issues that affect children’s health, such as early childhood development, mental health, and injury prevention at the public health and individual levels. She also has coordinated the child fatality review team in Suffolk County, Ma. She received her MPH with a concentration in maternal and child health from the George Washington University and a BA in psychology from the College of William and Mary.
Pediatric Hospitalist and Researcher,
Cincinnati Children’s Hospital Medical Center
Joanna Thomson, MD, MPH, is a pediatric hospitalist and researcher at Cincinnati Children’s Hospital Medical Center. With a passion for caring for and improving the health outcomes of children with medical complexity, her clinical effort is focused on the inpatient complex care team at Cincinnati Children’s. Her research focuses on identification, implementation, and dissemination of best management practices for hospitalized children with neurologic impairment.
Senior Vice President of Healthy and Resilient Children, Youth and Families,
American Academy of Pediatrics
Debra Waldron, MD, MPH, FAAP, is the Senior Vice President of Healthy and Resilient Children, Youth, and Families at the American Academy of Pediatrics, where she oversees the following areas: Child Safety, Health and Wellness; Pediatric Population Health; Strategic Partnerships for Child and Family Health; Systems of Services for Children and Youth with Special Health Care Needs. Previously, Dr Waldron served as the Director of the Division of Services for Children with Special Health Needs at the Maternal Child Health Bureau in the US Department of Health and Human Services, Health Resources and Services Administration. Prior to joining MCHB, she was Vice Chair of Child Health Policy and Professor of Pediatrics at the University of Iowa. In that role, she oversaw the statewide system of services for children with special health care needs. Her areas of expertise are population health and family engagement.
Executive Director, Family Voices
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.
Bruno’s work has focused on the development of effective interventions for children with behavioral health and developmental challenges within community settings as well as on ways to empower youth and families in decision-making. His research aims to understand the factors underlying differences in access to and quality of health services for underrepresented minority populations anchored in community based participatory research principles.
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 Health from Boston University School of Public Health, and currently works in state policy in Denver, Colorado. Mallory serves on the National Research Agenda Transitions writing group.
Director, National Center for Cultural Competence Director, University Center for Excellence in Developmental Disabilities, Georgetown University Center for Child & Human Development, Assistant Professor, Department of Pediatrics Georgetown University Medical Center
Tawara Goode is an assistant professor in the Department of Pediatrics, Georgetown University Medical Center in Washington, D.C. She has been on the faculty of the Georgetown University Center for Child and Human Development (GUCCHD), for over 30 years and has served in many capacities. She has degrees in early childhood education, and education and human development. Professor Goode has extensive experience as a principal investigator for federal and private sector grants and contracts. She is the director of the National Center for Cultural Competence (NCCC) at CUCCHD. She is the new Director of the GUCCHD’s University Center for Excellence in Developmental Disabilities and focuses on national level efforts to advance and sustain cultural and linguistic competence in this field.
Professor, Department of Physical Medicine and
Rehabilitation for Pediatric Rehabilitation Medicine, University of Pittsburgh,
School of Medicine
Dr. Houtrow is a pediatric rehabilitation medicine physician and health services researcher. She is Professor and Endowed 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 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.
Pediatric Nurse Practitioner,
Pediatric Medical Home Program, UCLA
Siem la 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 Practitioners (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.
Senior Director of Product Development,
Special Needs Initiative at United Health Care
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 organisations, 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 work group 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.
Dr. Jennifer Lail served as AVP for Chronic Care Systems in the James Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center (CCMC) from 2012-2019. While also delivering primary clinical care for children with medical complexity there, she led strategy and quality improvement in their Complex Care Center, culminating in NCQA Patient-Centered Medical Home recognition in 2018. For 31 years prior, she practiced primary care in Chapel Hill, North Carolina with a particular interest in improving health care delivery for children with special health care needs (CSHCN). In her current consulting role, she partners with health systems, physicians, staff and families of children and youth, applying Quality Improvement methodologies to improve processes and outcomes in chronic and complex diseases.
Dylan Marcy is a Northern Colorado native and small business owner who has been active in advocacy for over a decade. He was born with Ellis van Creveld Syndrome, a short-limbed dwarfism that has radically altered his life and given him a passion for mentoring and speaking to others with rare genetic conditions. Dylan graduated from Colorado State University in 2016 with a BA in Cultural Anthropology. Anthropology’s emphasis on qualitative data analysis helped hone his advocacy efforts to focus on what his audience was interested in, and he hopes to attend graduate school future to develop those abilities further. Dylan serves on the National Research Agenda Child Health and National Research Agenda Family Health writing groups.
Associate Professor, Department of Health Systems,
Management and Policy, Colorado School of Public Health
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.
Associate Professor of Pediatrics and Internal Medicine,
University of California, San Francisco
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. Do. 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.
Senior Vice President,
Lucile Packard Foundation for Children’s Health
Edward Schor, MD is a consultant on child health systems and policy. Previously he has led the work of several national foundations to improve child health care systems and the adoption of functional health status measures. Dr. Schor has held a number of positions in pediatric practice, managed health care, academic pediatrics and health services research. 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 children’s health and family functioning.
President & CEO,
St. Mary’s Healthcare System for Children, NY
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 home care services to over 2000 Children with Special Health Care 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 developed 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.
Section Chief, General Pediatrics,
St. Christopher’s Hospital for Children
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. 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.
Co-Director, Got Transition, Professor of Medicine and Pediatrics, George Washington
School of Medicine and Health Sciences
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 masters in education from GWU School of Education.
Professional Research Assistant,
Children and Youth with Special Health Care Needs National Research Network (CYSHCNet)
Meg assists all research projects within the CYSHCNet, and is based at the National Coordinating Center in Denver, CO. Meg attained a Bachelor of Behavioural Science (Psychology) degree from Swinburne University of Technology, and built an extensive career in university research administration and management prior to moving to Denver from Sydney, Australia.
Arda Hotz is a general pediatrician in the Division of General Pediatrics at Boston Children’s Hospital. A recent graduate of the division’s General Pediatrics Academic Fellowship, she works seeing patients in the Complex Care Service (consultative care coordination for children with medical complexity) as well as the Rainbow Program (full primary care for children with medical complexity). Arda has a clinical interest in outpatient care management for children with medical complexity, especially those who rely on durable medical equipment to optimize their health and wellbeing. Her research interests involve using health services research to inform the clinical operations of care management for children with medical complexity.
Dr. Ames is a pediatric critical care physician and health services researcher focused on improving health outcomes for children with a critical illness through optimizing healthcare delivery and organization. She is interested in understanding and improving health care for children and youth with special healthcare needs following critical illness. Her current research focuses on family perspectives and unmet needs during the transition to home following critical illness. A better understanding of difficulties that arise during this transition will lead to interventions focused on supporting children and their families in order to improve health outcomes and quality of life. Stefanie’s project is ‘Assessment of caregiver experiences and unmet healthcare needs following discharge home after a critical illness in a child or youth with special healthcare needs’.
Youth & Family Research Partners
Lucia Bastianelli is a pediatric nurse practitioner in the Cerebral Palsy Center at Children’s Hospital specializing in perioperative care for children with complex neuromuscular conditions undergoing surgery for scoliosis and hip deformities. Together with Dr. Jay Berry, she received a national award from the Institute for Healthcare Improvement on patient and family engagement in research for CYSHCN. Lucia has a Masters in nursing from Regis College and over 20 years experience working with children with complex medical needs. As an active member of the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), Lucia is a strong advocate for children with complex special needs and brings a unique perspective as a mother of young adult twins with Cerebral Palsy and complex medical needs. Lucia is the family partner for Emerging Investigator Arda Hotz’s DME study and is on two Secondary Data Center studies.
Emily Chesnut is mom to four kids, including twin daughters, one of whom has Down syndrome and a congenital heart defect. In her first year of life, her daughter spent 4 weeks in the NICU and had open heart surgery. Her daughter has taught her what it means to advocate and educate herself on a variety of medical needs. Emily has been an active member of Family Advisory Council for Cincinnati Children’s Developmental and Behavioral Pediatrics, the Government Affairs Committee for the Down Syndrome Association of Greater Cincinnati, Clermont County Board of Developmental Disabilities and as a family representative for NIH DS Connect Research Committee. She finds passion in networking and connecting the dots to make someone else’s journey that much smoother. Emily serves on the National Research Agenda Transitions writing group.
Cara serves on the National Research Agenda Care Models and National Research Agenda Finance writing groups and is on a Secondary Data Center study.
Glenn Gabbard is the Associate Director of Development and Operations with Family Voices, a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. As a scholar practitioner, Glenn co-directed the New England Resource Center for Higher Education where he developed multiple projects focused on organizational change in college and universities to make them more socially just institutions for historically underserved populations. As a faculty member and administrator, he has developed and led community college and university programs in multicultural and developmental education, humanities, critical literacy, interdisciplinary first-year programs, and a state system of inclusive post-secondary programs for students with intellectual disabilities. His non-profit management and leadership experience includes national technical assistance to state and local agencies, providing training and technical assistance to family-driven organization focused on disability. He holds a doctorate in higher education administration.
Debbi serves on the National Research Agenda Care Giving writing group and is on two Secondary Data Center studies.
Alissa serves on the National Research Agenda Transition writing group.
Amanda Mueller is the mother of three daughters, one of whom is a teen born with lung-liver fusion. Her daughter spent four months in the NICU at birth, required two surgeries and became the first child in medical history to survive this birth anomaly past infancy. Since birth, she has required 2 4-week PICU admissions a few times a year to manage complications from her life threatening pulmonary hypertension. In addition to her personal experiences in the ICU, Amanda also has experience as an active member of the UCLA Parent Advisory Council. Her expertise as a parent, history of advocacy through her law practice, and connections through the Parent Advisory Council make her an excellent family research partner. Amanda serves as the family partner on Emerging Investigator Stefanie Ames’s study.
Allysa Ware, MSW is a Project Director with Family Voices. Allysa 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. Allysa 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. She is licensed by the Association of Social Work Boards as a Licensed Graduate Social Worker (LGSW) in Washington, DC, and Maryland. Allysa is also the proud parent of a 16-year-old daughter with an autism spectrum disorder. Allysa serves on the National Research Agenda Care Models writing group.