History of Family Voices 
Family involvement is a core value and principle of systems of care for children with special health care needs. Family Voices has, over the last decade, transformed that vision into concrete action at the service, management, and policy-making levels. The leadership, wisdom, and warmth of the Family voices family has served as a beacon for those striving to build meaningful partnerships with families.
Before 1992
Family leaders work individually on health issues in their states. Surgeon General Koop introduces idea of family-centered care. Federal Division of Services for Children with Special Health Care Needs (DSCSHCN) funds family-centered care projects that bring family leaders together. Little information about children with special health care needs is available; certainly no definition or data.
Fall 1992
A Clinton/Bush Presidential Campaign focus: national health care reform. Throughout the fall, Polly Arango, Julie Beckett, and Josie Woll explore possibility of national family-run organization about children with special health care needs, plan gathering of family leaders in DC. Kathy Bishop and Merle McPherson offer encouragement.
December 6, 1992
Close to 20 family leaders meet in Washington, DC. Agree to: Establish national grassroots network of families and friends speaking on behalf of children with special health care needs; base it in the states; let everyone volunteer; delay incorporation; have office in New Mexico. CALL IT FAMILY VOICES! All accomplished in less than one day.
Fall 1993
Start to work! Three founders find volunteer family leaders in each state (coordinator network). We write, distribute 1-pagers to families, sign up members, make Family Voices known, develop partnerships, participate in national health reform. We build it as we fly it. Everyone is a volunteer.
1994
Health reform crashes, but our kids and issues are more visible and understood. Robert Wood Johnson Foundation (RWJ) and the Division of Services for Children with Special Health Care Needs (DSCSHCN) give FV small grants to reimburse state coordinators, pay for travel, copies, mailing, phone, first FV training conference in Washington, DC. Office moves from Arango home to old adobe bar in Algodones, New Mexico.
1995
FV incorporates as nonprofit with national Board of Directors. Volunteer dad sets up books, database, writes grants. Part-time staff handles phone calls, information flow. One-pagers: Title V, managed care, Medicaid, SSI. Successful second FV conference was held in DC. Families serve on national task forces, including first definition of children with special health care needs. Arango volunteers as Executive Director. 5,000 members.
1996
Robert Wood Johnson grant supports development of state FV organizations. Third FV conference held in DC. Part-time staff in NM and Boston grows. Strategic planning, involving entire net-work, begins. Annie E. Casey Foundation funds small survey on family experiences with health systems. Partners in Communication (PIC) grant supports work with professional groups, brings voice of families to Bright Futures pediatric guidelines. Family leaders invited to give keynote addresses, presentations at important national meetings.
1997
Expand materials, presentations, cultural diversity, and outreach work. Organize regional coordinator network. FV sees Congress vote managed care protections; SCHIP (State Children's Health Insurance Program); Family-to-Family Health Information Centers language. FV mom from LA helps save SSI cash program. FV receives McQueen Award; we accept with stories from coordinators - a hit! Many federal officials attend fourth FV conference. 7,000 members.
1998
First Friends of Family Voices Awards presented at fifth conference. Families review Maternal Child Health state block grants. Packard Foundation supports FV and Brandeis University first national survey of family experiences with health systems. Robert Wood Johnson funds FV sites in RI, TN, UT, LA, ME, NH, NJ, NC. We are family partners in National Policy Center for Children with Special Health Care Needs, producing Managed Care brochures and first annual Voices From Home state-by-state report from network coordinators. 15,000 members.
1999
Congress includes language in Family Opportunity Act (FOA) for Family-to-Family Health Information Centers, leading to FV national network planning project. SCHIP and Kids as Self-Advocates (KASA) projects begin. FV publishes Leadership Handbook, Quality Health Care Guide. "One Heart, Many Voices" video debuts at sixth conference. FV website up and running. 25,000 members now reflect everyone's hard work and dedication.
2000
Family Survey results presented at FOA congressional forum. Family Survey Report sent to more than 5,000 families, researchers, policymakers, agencies, with results analyzed, presented at professional meetings. We start Bright Futures guide for families. Family-to-Family Health Information Centers, funded by MCHB, piloted in FL, TN, IL, CA, RI, UT. After annual conference, FV helps coordinator network get on-line, establishes FV Listserv for coordinators, staff, board. FV Board holds first retreat.
2001
Congress again attempts to pass FOA to allow families to purchase Medicaid and to fund family health information centers. FV sites test idea of national network of family information centers, determine importance of data collection. First formal FV chapters established in TN, LA, NJ, KY, CA, ND, FL, VT, CO, MA, OH. KASA sets up website, holds its first Board meeting. Arango steps down as Executive Director; Jennifer Cernoch hired as new Executive Director. 40,000 members strong!
2002
Network coordinators meet in all 10 regions, sharing issues, expertise, and excitement. 42 states in FV network collect data demonstrating importance of information centers. Survey on families in Title V almost complete. FV has major role in first national survey on CSHCN. FV partners with March of Dimes, Medical Home in projects. Bright Futures family materials are beautiful, practical. FOA gets caught in Congressional battles. FV presents at International Congress in Argentina. 45,000 members and growing!
2003
10th Conference and Anniversary Celebration held in Washington, DC. We celebrate 10 years of families and friends speaking on behalf of children and youth with special health care needs with one heart and many voices! And then we get back to work.
2004
By 2004, Family to Family Health Information Centers are funded in 25 states, helping families to make informed decisions and to assure family-centered, community-based, culturally competent care for their children. KASA project (Kids As Self Advocates) receives a Youth Leadership Grant from the Administration on Developmental Disabilities.
2005
FV receives funding from MCHB to become the National Center on Family/Professional Partnerships for CYSHCN providing leadership in implementing the 6 performance outcomes for CYSHCN as part of the President’s New Freedom Initiative. FV raises over $28,000 for families effected by Hurricane Katrina in Georgia, Alabama, Missouri, Florida and Louisiana. FV launches its Legislative Action Center (LAC) to inform families and strengthen their political impact.
This page was last modified on 5/30/2006
