Our People
Leadership Team
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 Director, CYSHCNet National Coordinating Center, University of Colorado Anschutz Medical Campus, Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS)
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.
Program Manager, CYSHCNet National Coordinating Center, University of Colorado Anschutz Medical Campus, Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS)
Dr. Shelton is the program manager for the CYSHCNet National Research Network (CYSHCNet). She directs the network’s Family Engagement program and co-directs the Emerging Investigator training program. Her research interests are in the area of youth, family, and patient involvement as research partners. She and her colleagues published the Standard of Compensation for Youth & Family Partners, currently the only guide of its kind in the U.S. As a former critical care nurse, Dr. Shelton worked in the trauma center and NICU at LAC-USC Medical Center and was part of the case management team at AIDS Project Los Angeles. She holds masters degrees in sociology and public administration and a PhD in Health & Behavioral Sciences.
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.
Network Director of Patient and Family Engagement,
Family Voices
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.
Steering Committee
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.
University of Utah Health
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’.
Director of Research, General Academic Pediatrics, Children’s Mercy Kansas City
Dr. Colvin’s research focuses on the intersection of the social determinants of health, child health (especially in children with medical complexity), and policy or interventions to address unmet social needs in the healthcare setting. His research is funded by the National Institutes of Health and has been published in Health Affairs, Pediatrics, and JAMA Pediatrics. He was named to the Public Policy and Advocacy Committee of the Academic Pediatrics Association and to the Research Advisory Committee of SIREN, the Social Interventions Research and Evaluation Network (sirenetwork.ucsf.edu), a group of leading researchers examining health care’s response to the social determinants of health. Dr. Colvin co-founded Children’s Mercy’s Center for Family and Community Connections and the KLS Legal Services Clinic at Children’s Mercy.
Senior Project Director, Center for Innovation in Social Work and Health,
Boston University
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.
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.
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 care
Carolyn Foster received her a medical doctorate from Harvard University and health services research fellowship training from Seattle Children’s Hospital after a year as chief resident. As a physician-investigator, she holds both foundation and NIH-level funding to improve home and community-based services for children with medical complexity and their families, which spans intervention development, examination of factors affecting family wellbeing, and analyses of how state-level policies impact care provision.
Neal deJong, MD, MPH:
University of North Carolina Health
Neal deJong, MD is a general pediatrician whose primary research interests are issues of communication, coordination, and integration of care that center on parents and link services and screening based in the family centered medical home with related service providers for children with serious chronic conditions. His principal completed projects evaluated systems of care for children with complex health needs, and how these systems affect the quality of care that physicians provide and that families perceive.
Assistant Professor of Pediatrics, Vanderbilt School of Medicine; Director of Family, Community and Referring Network Engagement for Program for Children with Medically Complex Needs
Katie Freundlich is an Assistant Professor of Pediatrics at the Vanderbilt University School of Medicine, where she serves as the Director of Family, Community and Referring Network Engagement for the Program for Children with Medically Complex Needs. She received her medical doctorate from Baylor College of Medicine and completed pediatric residency and chief residency at the University of Michigan. She is also board-certified in Pediatric Hospital Medicine. Dr. Freundlich works primarily as a clinician dedicated to the care of children with medical complexity and their families but maintains a strong interest in improving the health systems which support their care. Her specific focus as the Director of the CYSHCNet Dissemination Core is to help research results reach a broad audience of stakeholders.
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.
Chief, Division of Developmental and Behavioral Pediatrics,
University of Rochester Medical Center
Dr. Dennis Kuo is a primary care pediatrician with a special interest in children with disabilities and medical complexity. He is Division Chief of Developmental and Behavioral Pediatrics at URMC and an attending physician at Golissano Children’s Hospital in Rochester, 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, University of Buffalo,
Chief, Division of General Pediatrics,
Interim Chief, Division of Developmental Pediatrics & Rehabilitation and Jack H. Skirball Endowed Chair in PediatricsVice Chair for Clinical Affairs, David Geffen School of Medicine at UCLA.
Dr. Lerner is a practicing pediatrician and the Medical Director for the Pediatric Medical Home Program at UCLA, providing comprehensive primary care for children with medical complexity. Dr. Lerner’s research interests include health care delivery and health system redesign, with a focus on children with medical complexity, and the use of clinical informatics to advance population health.
David Ming, MD
Duke University School of Medicine
David Ming, MD is Assistant professor in the department of Medicine, Pediatrics, & Population Health Sciences at Duke University. He is an internal medicine and pediatric hospitalist whose research is focused on two primary areas: 1) development, implementation, and evaluation of innovative care delivery models for children with medical complexity (CMC), and 2) use of implementation science research methods within a learning health model to improve health for complex patient populations.
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.
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).
Dr. Sanders is a health-literacy scholar, teacher in human-centered design, and director of Stanford’s Complex Primary Care Clinic. After completing residency and research fellowship at Stanford, he spent 11 years on faculty at University of Miami, where was an RWJF Generalist Physician Scholar and where he served as regional medical director for Florida’s Title V Program. As a clinician scientist, he conducts scholarly work to understand the interaction between chronic-illness management and health literacy, as a lens for system change to advance child health equity.
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 Fellowship Program Director
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.
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Advisory Committee
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.
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.
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.
Principal Consultant
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.
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.
Emerging Investigators
Ecologic Momentary Assessment of Outcomes after Critical Illness in Children with Medical
Complexity
Dr. Heneghan received her medical degree from the Warren Alpert Medical School of Brown University in 2013. She completed her pediatric residency training at Rainbow Babies & Children’s Hospital and subspecialty training in pediatric critical care at Children’s National Medical Center. During fellowship, Dr. Heneghan additionally earned a master’s of science in clinical and translational research from the George Washington University School of Medicine and Health Sciences.
Dr. Heneghan’s research interests include the long-term outcomes of critically ill children, particularly those who are supported by medical technology, as well as the use of novel analytic techniques and biomedical informatics in pediatric critical care research.
Caregiver Decision-Making and Advice Regarding Tracheostomies in Preterm Infants with Severe
Bronchopulmonary Dysplasia
Rachel Macak is currently Chief Resident in Pediatrics at University of Utah. She completed medical school at University of Florida in Gainesville and pediatric residency at University of Utah. She is looking forward to a career in Pediatric Palliative Care where she will work with medically complex children frequently, and is currently applying for a fellowship to begin in 2023. Her research interests include qualitative research and medical decision-making, particularly among children with special healthcare needs.
A Socioecological Approach to Social Complexity, Family Functioning, and Community-Based Systems of Care Among Children with Medical Complexity
Jennifer Peralta is a general pediatrician and a second-year Scholar in the National Clinician Scholars Program at UCLA where she is completing a health services research fellowship and her Masters in Health Policy and Management at the Fielding School of Public Health. Her research interests focus on addressing disparities and structural determinants of health among children with medical complexity through multisector systems redesign that is family-centered and equity and value-based. She aspires to pursue an academic research career that includes impactful collaborations with public and private-sector stakeholders, policymakers and family and community partners.
Telemedicine Use in Children with Medical Complexity
Marie Pfarr is a third year Pediatric Hospital Medicine and General Pediatric Research Fellow at Cincinnati Children’s Medical Center. She completed her Medicine-Pediatric Residency and Chief Residency at the University of Michigan. She is currently pursuing her Masters of Clinical and Translational Research at the University of Cincinnati. Her clinical research interests are focused on care delivery models for children with medical complexity and telehealth utilization in this patient population.
Early Introduction of Palliative Care among Families of Children with Medical Complexity
Dr Aryee is pediatric research fellow at the MassGeneral Hospital for Children. His current research interest is in healthcare disparities with a focus on children with medical complexity and their families. His long-term career plan is to establish himself as a leading academic physician scientist working on research that will serve as the foundation for state and national policies addressing healthcare disparities in vulnerable populations such as medically underserved minority populations. His goals include generating knowledge that will allow necessary stakeholders to craft policies that reduce negative outcomes for socioeconomically disadvantaged children as well as designing, implementing, and evaluating interventions to address gaps in healthcare for this population.
Examining Factors Associated with Increased Physical Trauma for CYSHCN
Denise Lillvis, PhD, MPA is a Research Assistant Professor of Surgery and Health Services Policy and Practice at the University at Buffalo, SUNY. Denise is also a Trauma Research Associate with Oishei Children’s Hospital. She received her PhD from the University of Michigan in 2017 and was a T32 postdoctoral research fellow in health services research and implementation science in the Department of Family Medicine at the University at Buffalo. Her research focuses on maternal and child health, spanning topics such as childhood vaccine policy, gun violence prevention, and the detection and management of chronic conditions. She is also interested in how organization-level policies influence healthcare delivery. Prior to returning to graduate school, she served as the executive director of a patient advocacy nonprofit.
BAD Med: Burden Alleviation using Deprescribing of Medications in CMC
Abby Musial is a pediatric hospital medicine fellow at Cincinnati Children’s Hospital Medical Center. Her long-term career goal is to improve the quality of life and health of children with medical complexity (CMC), and to provide their caregivers with the support and resources to do the same. Her scholarly work in fellowship thus far has focused on standardizing and improving care for CMC. Her current research focuses of family and health care provider perspectives toward polypharmacy, as well as elucidating medications in the medication lists of CMC that could be unnecessary, burdensome, or harmful with an ultimate goal to formulate a conceptual framework to decrease medication burden in CMC.
Characterizing integrated behavioral health services for young children with medical complexity and their caregivers in primary care
Verenea Serrano is an assistant professor with the University of Colorado School of Medicine and integrated clinical psychologist with the Children’s Hospital of Colorado. Dr. Serrano’s clinical work is focused on providing integrated behavioral health services in primary care to children with complex medical needs and their families. Her research and clinical interests include increasing access to quality behavioral health services among underserved populations, early childhood and caregiver mental health, and the psychological well-being and adjustment of medically complex children and their families.
Assessment of caregiver experiences and unmet healthcare needs following discharge home after a critical illness in a CYSHCN
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’.
Use of Durable Medical Equipment and Supplies in CYSHCN
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.
Understanding the effects of chronic medical procedures in children with Inflammatory Bowel Disease (IBD)
Creation of an Adaptive Taxonomy of Barriers and Facilitators to In-Home Care of Children with Cerebral Palsy
High Quality Health Care, IDEA Services, and Adverse Family Impact for US CSHCN: The Role of Prematurity in Early Childhood
Youth & Family Research Partners
Teresa lives in Salt Lake City, UT and is married with 4 children ages 14-22. She currently serves on the Family Advisory Council at Primary Children’s Hospital and participates in the youth to adult healthcare transition committee as well as the behavioral health transition committee. She is passionate about advocacy work and being a voice for people who struggle to find their own. She loves learning and is in school with a goal to become an art therapist. Her most valuable education, though, has been through hardships she has faced helping her child through chronic physical and mental illness as well as all of the life lessons she had learned as a mother.
My name is Elizabeth Marsh. I am a licensed practical nurse. I currently work as a Parent Support Navigator with Family Voices of Minnesota helping families raising children with disabilities and extra needs navigate services within Minnesota. I live in eastern Minnesota with my husband and our two daughters Allison and Madison. I am familiar with the ongoing challenges of having a child with complex medical needs and cognitive delays. I enjoy spending time with my family and friends. During the summer we like to go camping and spend time on the lake whether kayaking, fishing or swimming. I enjoy meeting new people and helping others.
I was born in Ecuador and moved to USA 20 years ago. I have worked as a bilingual parent consultant for a non-profit organization for the past 7 years, helping families navigate special education services. I am dedicated to providing families of children with disabilities trainings to acquire advocacy skills. I am a mother of two children, my 16-year-old with Autism and my 9-year-old with Aspergers. I have navigated the health care system, early childhood services, and special education world for many years, and have participated in several studies in Delaware. I believe partnering on research studies gives me the opportunity to share my experience of raising 2 special needs children with others and allows me to share all the barriers I have experienced during this journey. Additionally, I serve on a committee for children aged birth to three. My family and I love to be outdoors and visit new places.
Maria Leadon has 15 years of experience working with children and families and a passion for helping others. Maria earned both her B.A. in African American Studies and her M.A. in Educational Studies from the University of Cincinnati. She has served as a 2-time ambassador family for March of Dimes, a cause dear to her heart since the premature births of her children, Jasmin and Lance. Because of her children’s conditions, Maria obtained her nursing degree to provide skilled nursing care to her children and help other special needs children meet their educational and quality of life goals. She served as an Adoption Recruiter for youth in foster care with the goal of finding forever families and/or permanent connections before the youth reached the age of 18. Now, as a full-time mom, Maria enjoys spending time with her family, traveling, writing and reading poetry, singing and dancing.
Tengo la bendición de ser la madre de mi hija de 21 años y mi hijo de 16 años, que tiene parálisis cerebral, problemas pulmonares, epilepsia y múltiples diagnósticos más. Continuamos aprendiendo los diagnósticos y tratamos de tener una vida lo más normal posible. Antes de que naciera mi hijo yo trabajaba para apoyar a mi familia, después de que nació se complicó por sus necesidades médicas. Lo más difícil para mí fue el inglés. Comprender los diagnósticos fue difícil. Traté de entender y aprender por mi cuenta. Una motivación para mí para participar en la investigación es tratar de apoyar a los investigadores y darles mi opinión para ayudar a mejorar los sistemas para comprender y ayudar a disminuir las barreras para que las personas con cualquier diagnóstico tengan derecho a tener una calidad de vida lo más normal posible. Gracias por la oportunidad de trabajar en este estudio y por su paciencia con el idioma, aprendí mucho
I am blessed to be the mother of my 21-year-old daughter and 16-year-old son, who has cerebral palsy, lung problems, epilepsy and multiple other diagnoses. We continue to learn about his diagnoses and try to have as normal a life as possible. Before my son was born I worked to support my family, but after he was born it was complicated by his medical needs. The most difficult thing for me was English. Understanding the diagnoses was difficult. I tried to understand and learn on my own. A motivation for me to participate in research is to try to support the researchers and give them my opinions to help improve the systems to understand and help decrease barriers so that people with any diagnosis have the right to have as normal a quality of life as possible. Thank you for the opportunity to work in this study and for your patience for the language, I learned a lot.
Sandra Clancy helped to establish the Coordinated Care Clinic at Massachusetts General Hospital for Children, a medical home for children with complex health issues. She served as its program manager for 15 years, as well as that of the Pediatric Palliative Care Service. Currently she oversees the close collaboration of these two services into the Center for Courageous Kids, a national model for the early introduction of pediatric palliative care for children with complex medical needs. She chairs the hospital’s Family Advisory Council and meets with hospital leadership on a regular basis to share the parent perspective and experience
Elisa Aucancela is a Bilingual Early Childhood Special Education Specialist, including infant and early childhood mental health and cultural and linguistic diversity, in Colorado with over 13 years’ experience working with young children and their families in school- and home-based services. She is the interim executive director for El Grupo Vida, a non-profit organization that provides support groups for Spanish speaking families with children or adults with different abilities or special needs. Elisa was born and raised in Puerto Rico. She obtained her BA in Education from the University of Puerto Rico; a Post Bachelor in Education Administration from Universidad Abierta de Santiago, Dominican Republic; a Master in Clinical Psychology from the Universidad Tecnológica de Santiago, Dominican Republic, and a Master of Early Childhood Special Education from the University Northern Colorado.
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.
I am a mother of two children, age 16 and 10. Both of my children were preemies with health problems and spent time in the NICU. They still both have numerous health problems that we are dealing with.
I work as a Special Education teacher in a rural public school district. Tianna attends school in person five days per week in the building where I teach. My undergraduate degree is in psychology and I have extensive experience with behavior support. I also teach classes at a gym three times per week.
We live in the southern tier and enjoy being outdoors, camping, day trips, and spending time with friends.
Cara serves on the National Research Agenda Care Models and National Research Agenda Finance writing groups and is on a Secondary Data Center study.
Debbi serves on the National Research Agenda Care Giving writing group and is on two Secondary Data Center studies.
I was born and raised in the South but presently I live in San Francisco with my husband and daughter. I have 16 grandchildren and a great granddaughter. With a rich sense of family, I work and volunteer in my community, serving on advisory groups for education, mental health and Adverse Childhood Experiences. I believe caretakers are the experts in their families and should be partners in all health decisions for their children. I am honored to be involved in a project to develop a multi-generational guide to help families learn how to advocate for their children.
I plan to become a family therapist to help families reach their full potential through setting and reaching goals. Guided by the phrase ‘Information is power’, I try to learn and share as much as I can.
Allison Loechtenfeldt currently works as a Summer Camp Director at the Muscular Dystrophy Association (MDA). Prior to her work at MDA, she was a clinical research coordinator at Cincinnati Children’s Hospital Medical Center (CCHMC). While at CCHMC, Allison also completed the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program. Allison’s interest in research and quality improvement for children and youth with special healthcare needs stems from her lived experience as a sibling to her younger brother, Christopher, who has striking medical complexity. Allison enjoys being a voice for her brother and an advocate for all individuals with disabilities.
I am blessed to be the mother of two amazing daughters, Jessica and Addison. Jessica was born with congenital hydrocephalus, developmental delay, epilepsy and 30 other diagnoses. We savor every moment she laughs with her infectious smile. These challenges and experiences have allowed us the opportunity to advocate for Jessica and other children with complex medical needs. A passion is educating Texas lawmakers on the issues children with complex medical issues face. I love networking with other medically complex families because uniting together provides support and brings new resources. I am excited to share our experiences, trials and successes to help further research that will make positive impacts on children like our daughter. I am looking forward to learning more from these research studies and making a difference.
Lisa Maynes lives in Vermont and has participated in research during her graduate studies, and while she worked at the University of Vermont. She is mom to two adults. Her son Patrick has a rare leukodystrophy and is now 24 years old. She also spent over a year caring for her husband during his cancer treatment. Her interest in research arises from these experiences with her son and husband, and reflects her desire to support collection of data on critical issues while ensuring that the voices of the patient and their families are an integral part of the process.
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.
Ms. Yetta Myrick is the mother of teenage son 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 Washington, DC. Ms. Myrick was the Community Outreach Coordinator at the Center for Autism Spectrum Disorders (CASD) at Children’s National from 2016 to 2020, where she worked with the research team to engage the local autism community. From 2013 to 2017, Ms. Myrick served as the Stakeholder Advisory Board Chair for CASD’s Patient-Centered Outcome Research Institute (PCORI) Grant, “A Community-Based Executive Function Intervention for Low Income Children with ADHD and ASD Research Project”. She is a newly appointed public member of the Interagency Autism Coordinating Committee.
Ali Perfetti, MsEd/SWD is a special education therapist for Early Intervention and Preschool through Liberty POST, a division of Liberty Resources. She is a Parent Leader with WNY ECCS-CoIIN. She has spent two decades advocating as a special-needs parent and encouraging others to advocate while facilitating a monthly support group for special needs families. She shares four very creative children with her husband, all of whom have ADHD. Her oldest also has high-functioning Autism and is just starting college. Looking ahead to pursue her Doctorate in Exceptional Education, hoping to focus her thesis work on the recent Teletherapy debate. When not being a Super Mom during a pandemic, she can be found at Universal Orlando.
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.
Natilie Wooldridge is a parent of four children, three identifying as having special healthcare needs, one of them passing from this life in 2019. She was a sandwich caregiver for several years. Natilie has decades of experience with volunteer programs as well as being employed in the disability arena and has worked in disability-related research both as a research participant and as part of a research team. She has delivered numerous presentations and trainings for personnel and strategic partners equipping them to serve the CHNC community. Her beginnings in research started in her collegiate years at Arkansas State University in the 1990s and continue to the present day.
Staff
Carie Behounek is a storyteller, communications consultant, and freelance writer. She has more than 20 years of experience as a communications professional. She’s ghostwritten hundreds of articles in academic medicine, focusing on quality improvement, patient safety, and provider/patient communication. She holds a master’s degree in communication from the University of Denver.
Jonah Stoller is a student at the Colorado School of Public Health pursuing a Masters of Public Health with a concentration in Population Mental Health and Well-Being. Jonah has several years of experience as a researcher and as a special educator, and is interested in program evaluation of population level mental and behavioral health interventions for children and adolescents.
