PALO ALTO – Four new grants from the Lucile Packard Foundation for Children's Health focus on advancing health equity for children and youth with special health care needs (CYSHCN), while five additional grants are designed to educate and support families of CYSHCN – along with health system administrators, community health workers, legal advocates, and providers – to prevent lapses in health coverage as the Public Health Emergency ends.
“The impact of health inequities is multiplied for children and youth with special health care needs, and these inequities can be further magnified based on factors such as race, language, geography, and disability,” said Holly Henry, director of the foundation’s Program for Children with Special Health Care Needs. “Our new grants aim to address these issues, as well as to prepare families to negotiate the complex changes in health care coverage.”
Assessing Family Friendly Care in Realizing Self-Management (AFFIRM) California
University of California, San Francisco, Center for Excellence in Primary Care
This grant will fund a large, statewide study to understand the degree to which families of children and youth with special health care needs are receiving tools, support, and education from health care providers to improve their ability to provide medical care at home, a practice known as self-management. Researchers will refine an existing survey to ensure that the out-of-hospital needs of the hardest-to-reach families, including low-income and Spanish-speaking households, are identified and addressed.
Ensuring Protections for California’s Families at a Critical Time
National Health Law Program (NHeLP)
The National Health Law Program will use grant funds to continue providing independent oversight and monitoring of California’s Department of Health Care Services (DHCS) to ensure that families have appropriate legal protections - including appeal and fair hearing rights - as well as clear guidance and communications about accessing programs and services under Medi-Cal and the California Children’s Services program. This work, which will have a focus on equity, also will assist advocates and families who are navigating the ending of the COVID-19 Public Health Emergency.
Influencing Public and Policy Discourse by Amplifying the Voices of CYSHCN
California Health Report
This grant will support reporting on how children and youth with special health care needs and their families are faring. The stories will reach a broad audience across the state, helping raise awareness of the challenges and inequities that persist for these children, with a particular focus on ethnic media partnerships and telling stories from and with communities speaking languages other than English. Topics under consideration also include new legislation affecting access to palliative and hospice care, and the new Medi-Cal Enhanced Care Management benefit and the difference it could make in the lives of families.
Children Now has long served as a conduit between family support organizations and policymakers by providing technical assistance to families and advising state officials on the benefits of family engagement. This grant will formalize that role and provide a forum to enable a broad representation of culturally and linguistically diverse California families to work across health care system issue areas on a collaborative agenda.
Grant funds also will allow agencies to develop collaborations to assist families in retaining health coverage as national and state policies change:
Family Voices will activate member organizations to identify the information and assistance families need to navigate the changes that are occurring because of the end of the PHE. Family Voices will manage a portfolio of mini grants to the affiliates to support their state efforts, including providing educational materials and targeted technical assistance through a partnership with Manatt. A cultural responsiveness committee will review and translate materials as needed to ensure that the efforts are meeting the needs of a wide range of culturally and linguistically diverse families.
Ensuring Access to Health Care for Medicaid and CHIP Enrolled Children Beyond the PHE
Manatt will provide targeted technical assistance to state family support organizations related to the impact of and opportunities for policy advocacy relevant to the PHE unwinding and the end of continuous Medicaid coverage. The team will attend quarterly meetings of the state organizations convened through Family Voices and also will serve as a resource to The Children’s Partnership. This is a continuation of funding to Manatt that focused on preparing for the end of the PHE.
Protecting Child Well-Being During the PHE Unwinding
The Children’s Partnership (TCP)
The Children’s Partnership (TCP) work will be divided into two components: core funding for a Medi-Cal continuous coverage campaign and logistical support for the National Health Law Program’s virtual stakeholder forum. TCP will work to ensure that policymakers are aware of the impact of continuous coverage on children and families, disseminate new and updated materials on the renewal process to families and advocates, coordinate and provide outreach to key stakeholders for the monthly virtual forum, and provide translation and dissemination services for all activities.
Improving the California Children’s Services Program: Forum on Medi-Cal Continuous Coverage Unwinding
National Health Law Program (NHeLP)
In collaboration with The Children’s Partnership, NHeLP will develop and launch a monthly virtual forum to learn from a broad group of California stakeholders who are assisting individuals and families navigating the unwinding and end of continuous coverage. NHeLP will share real-time issues that individuals, families, and advocates are experiencing directly with the Department of Health Care Services, engage in administrative advocacy as appropriate, and provide timely updates on those efforts and the unwinding back to the broad group of stakeholders.
Solutions Journalism: Stories and Columns on CYSHCN and the PHE Unwinding
California Health Report
California Health Report will develop news stories, as well as first-person columns from its family journalist, describing how families of children and youth with special health care needs are being affected as flexibilities adopted in California during the Public Health Emergency come to an end. At least one article will focus on the long wait times families are facing at county offices trying to complete the Medi-Cal renewal processes. Articles will provide policy solutions and guidance for families.
The Lucile Packard Foundation for Children’s Health unlocks philanthropy to transform health for all children and families - in our community and our world. Through its Program for Children with Special Health Care Needs, the Foundation invests in creating a more efficient and equitable system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. Learn more at lpfch.org/CSHCN