FVCA has produced materials and publications in partnership with other agencies to assist families of children and youth with special health care needs.
Project Leadership: Effecting Change, One Parent At A Time
Families of children and youth with special health care needs 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. FVCA’s Project Leadership program 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 children and youth with special health care needs. An independent evaluation found that program graduates from diverse backgrounds showed significant improvement in leadership skills and more confidence in their ability to advocate. In the project’s first two years, 79 parents completed the training and began actively participating on a variety of committees and planning bodies. In addition, they gave testimony at state and local hearings and were covered by the media.
California’s Service System For CYSHCN: Analysis And Recommendations For A Service System That Works For Children And Families
This report begins with an overview of all related systems designed to serve children with special health care needs. This includes publicly and privately funded services as well as those specific to certain populations. Detailed information about each service system is located in the appendices at the end of the report. The next section consists of an analysis of the strengths and gaps within the current service system and the impact on families. The report ends with a summary and recommendations for addressing some of the primary concerns in the current system of care.
(Contracted through Lucile Packard Foundation for Children’s Health, December 2009. More info)
Your Voice Counts!
In 1998, FVCA worked with Family Voices National and Abt and Associates, Inc. to conduct a survey of 954 parents of children with special health care needs in California. This survey identified primary parent concerns and the obstacles many face in obtaining health care services for their children.
Beginning the Conversation
Along with the above Your Voice Counts! survey, FVCA also worked with Family Voices National to collect further information about health care issues facing families by conducting interviews with managed care organizations. 17 interviews in ten states were conducted, two from California. This report examines questions that were asked, why they were asked, responses from managed care organizations, and comments from families.
Report: Beginning The Conversation
Parent Health Liaison Manual
The Parent Health Liaison Manual was developed to as an easy-to-use guide that addresses family centered care through the provision of Parent Health Liaison services. The manual:
- Identifies a common vision of Parent Health Liaison services.
- Sets standards for quality.
- Builds consistency and uniformity for staff providing Parent Health Liaison services.
- Serves as a training tool for staff providing Parent Health Liaison Services.
- Clarifies the role of Parent Health Liaison services for health care agencies.
Hospital Discharge Questions
This document was developed by FVCA to help families of children with special health care needs prepare for a hospital discharge. Families are encouraged to use the questions as a guide or prompt to ensure they understand all information before they leave the hospital. There are a total of 41 questions divided into five categories:
- Medical care.
- Equipment and supplies.
- Respite and transportation.
Health Care Connections Plan Guide
This guide provides families and professionals with a description of managed care plans, private health care plans, and public programs for which children with special health care needs may be eligible. There are tips on choosing the right plan and health care provider, working with your child’s care providers, keeping records, and advocating for your child when things go wrong.
Your Guide to the Internet
This guide is designed to give families the information needed to use a computer to search for health related information on the internet. It contains information on using a home computer, finding a computer in a public place, how to get online, using browsers and search engines, communicating through e-mail and chat rooms. It also has a glossary of terms and an extensive list of websites.