The Lucile Packard Foundation for Children’s Health announces the latest grants awarded through its grantmaking and advocacy program, which focuses on transforming health care systems to work better for children and youth with special health care needs (CYSHCN) and their families.
The work funded by these grants centers on:
- Supporting and empowering Black caregivers of children with medical complexity
- Advocating for policies to address inequities in services provided for children with disabilities in California
- Strengthening organizational infrastructure and building capacity for CYSHCN family engagement work at the national level
- Expanding and diversifying hospital and clinic sites for a statewide study of self-management support in pediatric care for CYSHCN in California
“CYSHCN often face barriers to care,” said Holly Henry, director of the Foundation’s Program for Children and Youth with Special Health Care Needs. “For CYSHCN from marginalized communities, those barriers are compounded by discrimination and systemic racism. These projects will help inform and advance our health care system toward more equitable, family-centered care that meets the needs of CYSHCN and their families.”
The grants:
Connect and Empower Caregivers: Improving Outcomes for Black Children with Medical Complexity
Grantee: Duke University School of Medicine
Caregivers of Black children with medical complexity (CMC) experience barriers to accessing care for their children due to systemic racism and disability-based discrimination. At the same time, Black caregivers are underrepresented in the development of interventions designed to improve care for CMC. Through this grant, a joint community-academic project team will adapt an existing health care communication coaching and resource navigation program to the needs of Black caregivers of CMC. The team will then conduct a feasibility study to determine if the adapted intervention could be successful in promoting Black caregiver self-efficacy and reducing acute care use by Black CMC.
The El Arc de California Statewide Equity Project
Grantee: The Arc of California
California’s 21 regional centers provide crucial services for people with developmental disabilities, but research has shown significant disparities in delivery of those services. Latinx clients often receive only half the services that White clients receive, despite being the largest ethnicity served (representing nearly 41% of all clients and 45% of all clients under age 21). El Arc de California will use this grant funding to develop legislation that will provide insight into these racial and ethnic disparities and to train and mobilize its coalition of disability stakeholders and Spanish-speaking families across the state to advocate for its adoption.
General Operating Support
Grantee: Family Voices
This grant will enable Family Voices to execute on its five-year strategic plan to continue driving family engagement for CYSHCN, ensuring that families are full, ongoing participants in policy and systemwide efforts to improve care for CYSHCN. The strategic plan is focused on four key pillars: systems integration, research, training and technical assistance, and health equity.
Assessing Family Friendly Care in Realizing Self-Management (AFFIRM) California – Amendment
Grantee: Regents of the University of California San Francisco
Through a previous grant from our Foundation, the AFFIRM team began recruiting California pediatric hospital and clinic sites to participate in a study about self-management support services for CYSHCN. After meeting its original goal of eight sites, the AFFIRM team will use the grant amendment to bring on eight additional sites, providing a more complete picture of the extensive diversity and experiences of California’s CYSHCN families.
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