Families of children and youth with special health care needs (CYSHCN) have had significant real-world experiences that could help make health care policies and administration more family-centered and culturally competent. However, many lack the training and experience to make their voices heard. Family Voices of California’s (FVCA) Project Leadership was designed to increase the capacity of families to partner in the development and oversight of services, systems and programs upon which they and their children depend. Project Leadership features a comprehensive training curriculum, paired with mentoring and support, that prepares families to build partnerships with professionals and engage in public policy advocacy on behalf of CYSHCN. An independent evaluation found that program graduates from diverse backgrounds showed significant improvement in leadership skills and confidence in their ability to advocate. In the project’s first two years, 79 family members of CYSHCN completed the training and began active participation on a variety of committees and planning bodies; they gave testimony at state and local hearings and had their stories featured in the media.
Project Leadership: Effecting Change, One Parent at at Time [pdf]