FVCA Projects

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.

PROJECTS

PARTNERSHIPS

"Your Voice Counts!"

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:

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Beginning the Conversation

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.

Click Here for the Full Report

Parent Health Liaison (PHL) 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/uniformity for staff providing Parent Health Liaison services
  • Is a training tool for staff providing Parent Health Liaison Services
  • Clarifies the role of Parent Health Liaison services for health care agencies

Parent Health Liaison (PHL) Job Description

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.

Click Here for the Job Description

Hospital Discharge Questions for Families of Children with Special Health Care Needs

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:

      1. medical care
      2. medications
      3. equipment and supplies
      4. insurance and
      5. respite and transportation.

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.

  • Click Here for document in English
  • Click Here for document in Spanish
  • Click Here for document in Chinese

 

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Health Care Connections: A Guide for Families of Children with Special Health Care Needs

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.

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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, chat rooms, listserves, a glossary of terms and an extensive list of Web Links.

Family Voices of California Listserve

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.

Click Here to Join

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Annual Health Summit

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 2009

Health Summit 2008

  • “We Can Do It” IV: Highlights of the March 2008 Conference (English version)
  • “We Can Do It” IV: Highlights of the March 2008 Conference (Chinese version)
  • “We Can Do It” IV: Highlights of the March 2008 Conference (Spanish version)

Health Summit 2005

  • “We Can Do It” IV: Highlights of the March 2005 Conference (English version)
  • “We Can Do It” IV: Highlights of the March 2005 Conference (Chinese version)
  • “We Can Do It” IV: Highlights of the March 2005 Conference (Spanish version)

Health Summit 2004

Health Summit 2003

Health Summit 2001

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