Family Engagement Insights
July 10, 2014

Family Voices of California: Strengthening Parent Advocacy for Children with Special Health Care Needs

By: Pip Marks

In an effort to remedy the striking absence of parent leaders on health care committees and planning bodies that influence services for children with special health care needs, Family Voices of California (FVCA) last year launched Project Leadership. Today, 30 family members have graduated from this training and mentoring program, and many are participating on various health-related boards and committees, meeting with legislators, and giving legislative testimony.

With a grant from the Lucile Packard Foundation for Children's Health, FVCA Project Leadership has provided families with convenient, locally focused training; ongoing support and mentoring; linkages to involvement opportunities; and information to assist them to become effective public policy advocates.

The seven-session curriculum covers:

  • Knowing the Past to Change the Future: History and Purpose of Advocacy
  • Rules of the Road: Systems, Laws, and Entitlements
  • Becoming a Mover and Shaker: Working with Decision-Makers for Change
  • Playing Well with Others: Enhancing Communication
  • Telling Your Story: Developing and Presenting Stories to Others
  • Ways You Can Serve: Participating on Decision-Making Bodies
  • Solidifying Partnerships: Connecting with Local Change Makers

With this training and support, families with experience navigating health care systems and services have tremendous potential to advocate for improvements and effect change on both local and state levels.

Training sessions are dynamic and interactive, offering parents the opportunity to learn with and from one another.

Thirty family members is a good start, but it is critical to continue to expand this pool of advocates to provide more diverse perspectives and to ensure that more California policymakers and administrators can hear directly from families.

Examples of Project Leadership family participation include:

  • Twelve graduates attended the 2014 Health Summit and Legislative Day in February and visited with their county legislators.
  • Three graduates gave powerful legislative testimonies regarding their concerns for the potential changes to the CCS program at a committee budget hearing at the state Capitol.
  • Four graduates and FVCA staff are participating as key stakeholders on the Title V (CCS) Needs Assessment Committee, which is overseen and facilitated by the Family Health Outcomes Project (FHOP) at University of California, San Francisco.

As one Project Leader graduate wrote:

Project Leadership training has allowed me to further build my confidence as an advocate. I have progressively taken on the role as the advocate for my daughter’s special health care needs but always felt "stuck" when it came to further advancing. This training has given me the tools, information, and necessary leadership skills to further my advocacy voice for Mia, my daughter, and other families. I am very interested in expanding this training for other families to find their voices in advocating for their children's needs; most especially reaching out and training for the Latino/Hispanic community.

Project Leadership aims to improve and ensure quality health care for children and youth with special health care needs (C/YSHCN); more families and youth with special health care needs must learn how to build partnerships and be able to advocate for high quality, family-centered and coordinated health care. The systems serving C/YSHCN are complex and require coordination and a family-centered approach.

Policymakers are not always aware of the impact of their decisions, but families using these complex systems know what works, and what doesn't. This model will prepare families and youth with the skills, support, tools and confidence to build partnerships with professionals and engage in public policy advocacy on behalf of children and youth with special health care needs.

Currently the FVCA Project Leadership training will be offered to families in the San Francisco Bay Area by the Family Resource Network (Bananas Building) at 5232 Claremont Ave., Oakland.

The next series of trainings will begin in September 2014, with another series starting in early 2015. Families in the San Francisco Bay Area, specifically in the East Bay, who are interested in participating in a Project Leadership training, please contact Lilian Ansari via email or call 510-547-7322, ext. 122.

photo credit: Pip Marks