Skip to content
stock photo of a hand providing soil to a seedling in the ground

The Lucile Packard Foundation for Children’s Health is thrilled to announce the newest cohort of researchers and organizations receiving grants through its Program for Children and Youth with Special Health Care Needs (CYSHCN). The seven grants will fund groundbreaking research and program support to drive changes to our health care system, as well as enable advocacy and family engagement initiatives to elevate the lived experiences of CYSHCN.

The projects funded by these grants will focus on:

  • ableism in pediatric health care,
  • home modifications so children with disabilities can live safely at home,
  • transition from pediatric to adult health care,
  • family-led medical education,
  • and other critical topics.

“One in five children in the United States has a special health care need, and children who are multiply marginalized face many barriers accessing care,” said Holly Henry, director of the Program for Children and Youth with Special Health Care Needs. “Unfortunately, our health care systems were not designed with CYSHCN and their families in mind. These new grants will address critical components of our system that need to be improved to meet the needs of a diverse range of children and families.”

The grants:

Supporting State Innovations for Equitable Systems of Care for CYSHCN
Grantee: National Academy for State Health Policy (NASHP)
Many states are just beginning the work of creating equitable systems of care for CYSHCN, often in challenging political climates. State leaders need strategies, models, and support for moving health equity initiatives forward. In a previous Foundation-funded project, NASHP identified several state strategies and policy levers that support health equity for CYSHCN. In this new grant, NASHP will host roundtable events and a national summit to foster cross-state sharing of successful strategies and provide states with support for adapting and implementing strategies.

Development of a Novel Measure of Ableism in Pediatric Health Care
Grantee: University of Utah Department of Pediatrics
Ableism, which is disability-related discrimination, negatively impacts health. Our current understanding of its prevalence and effects is based on research with adults. Adults with disabilities report experiences such as inappropriate clinical assessments, unnecessarily limited treatments, denial of coverage or treatment, and dehumanization. We know very little about how ableism impacts children and their families. This project aims to address this knowledge gap by collecting, organizing, and analyzing information about how children with disabilities and their families have experienced ableism in pediatric health care, and laying the groundwork for developing a reliable and valid measure that can be used in future research, advocacy, and policy development.

Lost in Transition: Gaps in Care as Teens with Special Health Care Needs Transition from Pediatric to Adult Care Systems
Grantee: University of Chicago
Of the more than 13 million CYSHCN in the United States, 750,000 of them age out of pediatric care each year. Yet only 22% successfully transition to adult care. For youth who don’t transition successfully, the result can be gaps in care, which increase the risk of negative health outcomes. This grant will support the first-ever population-level analysis of the experience of transition for CYSHCN covered by Medicaid. The research team will produce national estimates of age-related changes in outcomes such as Medicaid access, primary care availability, and health care and long-term care usage and spending. This work will provide foundational knowledge for future policy interventions and research, with the long-term goal of ensuring that more young adults with special health care needs transition smoothly to adult care.

Optimizing the Home Environment for Children with Disabilities: Understanding Policies and Planning for the Future
Grantee: Johns Hopkins University
Many families of children with disabilities (CWD) lack the equipment and home modifications needed for their children to live safely at home. Even though public programs such as Medicaid provide support for home modifications, families may not qualify or know how to access it. This project will evaluate the current national landscape of programs and policies that promote accessible, adequate, and equitable housing for CWD and their families. The work will include interviews with key informants from 10 states to shed light on current programs and policies, how these programs and policies are being implemented to improve home environments for CWD, and the factors that affect successful implementation. The research team will also develop a proposal for a national convening to create a policy agenda on optimizing the home environment for CWD and their families.

Family-Led Academic Grand (FLAG) Rounds for Pediatrics
Grantee: The Board of Regents of the University of Wisconsin System and Bluebird Way Foundation
Medical training on the care of children with medical complexity (CMC) is usually delivered by health care professionals in grand rounds sessions, with a focus on medical diagnosis and treatment. Families’ experiences are typically included on an ad hoc basis only, leading to a disconnect between families and providers. Family-Led Academic Grand (FLAG) Rounds are designed to flip the traditional grand rounds model by preparing families and youth to be primary medical educators. This FLAG Rounds pilot series will focus sessions on different aspects of ableism in pediatric health care and the impact on CMC and their families. The project will provide important information on the feasibility, training methods, and next steps for FLAG Rounds expansion.

Project Leadership Phase VII: Engaging Diverse Families for Health Care Systems Improvement
Grantee: Family Voices of California
The Project Leadership program helps train California parents and family members to be advocates for CYSHCN and systems change. Graduates from the program serve on boards and committees, participate in media interviews, and testify at legislative hearings, providing critical representation for CYSHCN and their families within their communities and with local and state governments. This grant will support the program’s expansion, as well as an initiative to increase diversity among family advocates.

Got Transition
Grantee: National Alliance to Advance Adolescent Health
A smooth, successful transition from pediatric to adult health care care is critical for youth with complex medical needs. This grant will support ongoing activities of Got Transition, the only national resource center focused on improving the health care transition, particularly for youth from communities that have been economically and socially marginalized.

Learn more about resources, events, and grants from the Program for Children and Youth with Special Health Care Needs.