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Project Leadership Coordination and Expansion: Phase V

Organization: Family Voices of California

Primary Contact: Elaine Linn

Grant Amount: $455,174 for 24 months

Date Awarded:

Date Completed:


Project Leadership is a community-based parent training program operated by Family Voices of California (FVCA) and designed to increase the number of family representatives of CSHCN who are able to effectively participate in public policy advocacy at the state and local level and have a voice in systems change and lasting reform. Building on previous grants, these funds will enable FVCA to expand its training program to include rural and underrepresented populations, thereby ensuring diverse parent leadership throughout the state. FVCA also will increase the level of leadership and advocacy activity by parent leaders to have greater impact in policymaking and intensify efforts to facilitate deeper engagement and partnerships with CSHCN stakeholders.

*Please note that this grant combines two separate projects; the awarded amount reflects funding for both grants.


Despite challenges brought on by the COVID-19 pandemic, Family Voices of California (FVCA) successfully continued its program expansion by increasing the number of family members of children with special health care needs in California who are prepared and supported to advocate for health systems improvement. At the completion of Phase V, FVCA had trained more than 130 facilitators from 71 organizations statewide and three additional states. Seven hundred and fifty parent graduates in 43 counties have participated in hundreds of leadership and advocacy activities at the local, state, and federal levels. Project Leadership alumni, trainers, and staff advocated on timely issues such as telehealth, vaccine prioritization, and caregiving challenges. At the onset of the pandemic, FVCA revised program planning to better meet the needs of training agencies and diverse families no longer able to implement in-person Project Leadership trainings. In an effort to address cultural responsiveness in program content and implementation, FVCA established the Equity through Inclusion and Connection (ETHIC) Advisory Group. As part of their partnership with the California Nurse-Led Hospital Discharge Learning Collaborative (CANDLE), FVCA coordinates the CANDLE Virtual Family Advisory Council that serves to provide input to site leaders of the collaborative member hospitals.