Family Voices of California is involved in several projects and works in partnership with agencies, advocates and other professionals concerned with addressing the needs of families of children with special health care needs.
The online versions of all of the reports here are available in PDF format. Download free PDF viewer here.
In 1998 Family Voices of California was actively involved with Family Voices National and Abt and Associates, Inc. in a survey of 954 parents of children with special health care needs in California. This survey identified parent concerns and the obstacles they face in obtaining health care services for their children. Click your choice of the following:
Along with the "Your Voice Counts!" survey of families in 1998, Family Voices of California worked with Family Voices National to collect further information about health care issues facing families by conducting interviews with managed care organizations. Seventeen 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.
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
Family Voices of California has developed a job description for a Parent Health Liaison. Parent Health Liaisons work closely with families and medical institutions around health issues. They are the "point person" on health care issues for their regions and are instrumental in developing local plans.
This document was developed by Family Voices of California to help families of children with special health care needs get the information they need to take care of their child when they come home from the hospital. The questions were designed by families of children with special needs. Families are encouraged to use the questions as a guide or prompt to get the information they might need and to ensure they understand the information before they leave the hospital. There are a total of 41 questions divided into 5 categories:
There is also a medications chart to help families keep track of the medications their child is taking and the amount to take, when to take it, side effects, impacts on their child etc.
This guide provides families and professionals 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.
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, chat rooms, listserves, a glossary of terms and an extensive list of Web Links.
This is a computer listserv that families, advocates, and professionals who are interested in children with special health care needs may join to ask questions, get information, learn about new programs, ideas, research and much more.
Family Voices of California in partnership with Protection and Advocacy Inc. and the National Health Law Program has provided training on Medi-Cal for Family Resource Centers, advocates, agencies, and professionals in California in May 2000, February 2001, and August 2001.
The Health Summit resulted from a partnership with Protection and Advocacy
Inc., the National Health Law Program, Area Board 5, Center for the Vulnerable
Child, and Pediatric Management Group. The summit brought together families,
advocates, agencies, funders and providers to discuss the health care
system for children with special health care needs and to develop strategies
to overcome some of the obstacles faced by families, health plans, public
programs and private agencies.
Health Summit 2008
Health Summit 2005
Health Summit 2004
Health Summit 2003
Health Summit 2001
Family Voices of California is partnering with California Children Services (CCS) to review program materials for CCS to ensure they are family-centered and easy to understand. The project will focus on the materials that are sent out through the computerized system used by CCS, CMS-Net.
Family Voices of California
November 14, 2011