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.
These grants center on:
- Creating a first-of-its-kind, gold standard measurement tool to assess ableism in pediatric health care, and
- Developing a state health policy center to provide critical support services and a virtual learning community for state health officials across the country, at a time of unprecedented funding cuts to Medicaid and other public health programs.
The grants:
Grantees: University of Utah (Lead), University of Wisconsin-Madison, and University of Pittsburgh
Widespread ableism has been identified in pediatric health care including withholding treatment, ignoring family preferences, lack of flexibility, and providers making broad generalizations about disabilities. Despite growing evidence of how ableism harms CYSHCN and their families, researchers and administrators lack adequate tools to measure it and its impact. Over the past three years, the Foundation has funded research to better understand and drive progress on addressing ableism in pediatric health care, an historically underrecognized issue. Building off previous research, this grant will identify domains of ableism to develop a pivotal, first-of-its-kind measurement tool of ableism in pediatric health care. The researchers will apply psychometric methods to ensure the tool is valid and reliable. Designated professional Lived Experience Partners, who are members of the research team at each of the involved universities, will inform and engage in the entire process.
State Health Policy Center for Children with Chronic and Complex Needs
Grantee: National Academy for State Health Policy (NASHP)
State programs that provide vital support and services to CYSHCN are facing steep federal budget cuts. To maintain and strengthen access to high-quality care for CYSHCN during this critical time, NASHP will support state health officials in identifying strategies and policy solutions in an evolving policy landscape, and establish a State Health Policy Center. The Center will focus on three priority areas: 1) improving access to care; 2) advancing high quality health care delivery models; and 3) supporting public financing of programs, services, and supports for CYSHCN. A key activity of the grant is engaging and guiding 25 states in leading cross-sector policy and programmatic strategies, using a nonpartisan and inclusive approach.
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