Family Voices of California at Support for Families of Children with Disabilities (SFCD)
Contact Information
Juno Duenas
(415) 282-7494
jduenas@supportforfamilies.org
Ron Nieberding
(415) 282-7494
rnieberding@familyvoicesofca.org
Family Voices of California (FVCA) helps
families of CYSHCN through a network of regional
FVCA Council Member agencies, coordinated by
Family Voices at Support for Families (San
Francisco). These family-run member agencies are
funded by a number of sources, including: First 5
County Commissions, US Department of Education,
DDS Early Start, California Children’s Services,
State Council on Developmental Disabilities, CA Department of Education, private
and corporate foundation grants and others.
HIGHLIGHT: Focus on Youth
FVCA started a Youth Advisory Council this past year for youth ages 14-24 yrs. Youth
participants meet via conference call once a month and face-to-face 4 times per year.
In these meetings to date they have developed ground rules for participation and
identified projects to work on. Currently, the Youth Advisory Council is working on
developing a survey of youth with special health care needs to obtain information
about their needs and experiences of youth and the agencies serving them. This is a
dynamic group of young people who speak up and take very seriously their role
on the Advisory Council!
Building Leadership:
FVCA is completing a Leadership
Manual that will be used to train
families to take on leadership rolls in
their communities and advocate for
CSHCN. Trainings will begin in May,
2007.
BUILDING PARTNERSHIPS: Families and Policy-Makers
FVCA held its annual Health Summit in the state capitol, bringing together families,
legislators, advocates, and speakers from George Washington University, Families
USA, legislators, advocates and state agency representatives. This was followed by a
Legislative Day, during which families from across the state met with their state
Senate and Assembly members to discuss CYSHCN and the impacts of budget and
policy proposals on them.
ADVOCACY IN ACTION:
Last year, FVCA:
- Provided assistance to families & professionals over 12,000 times, on average, each quarter
- Logged over 5.1million web hits, on average, each quarter
- Participated in 832 meetings attended by over 8,000 family members & professionals
WORKING TOGETHER FOR CYSHCN:
Here’s a sample of the many activities in which FVCA partnered with others
last year:
- Developed a Parent Health Liaison (PHL) Network to identify and track emerging trends and issues for families
- Through the PHL network, developed a Hospital Discharge Questionnaire to ensure families have the information needed to care for their child at home upon discharge
- Collaborated with several child health advocacy groups to develop ‘Core Principles for CSHCN’, a set of guidelines for healthcare reform
Useful Links
- The Golden State
- Healthy Families Program
- California Department of Developmental Services (DDS)
- California Developmental Disabilities Netlink
- Medi-Cal
- Department of Mental Health
- Parents Helping Parents
- State Council on Developmental Disabilities
- Protection and Advocacy, Inc.
- Department of Rehabilitation
- Special Education Division
- The Major Risk Medical Insurance Program (MRMIP)
- USC University Affiliated Program
- CAL-TASH
- DREDF (Disability Rights Education and Defense Fund)
- Latino Coalition for a Healthy California
- Medi-Cal Policy Institute
- Prader-Willi California Foundation
