|Family Voices, Inc.
|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 organization has served as a beacon for those striving to build meaningful partnerships with families.
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 information about children with special health care needs is available; certainly no
definition or data.
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 All
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
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.
Family Voices is represented in every state, as well as Washington D.C., Puerto Rico, and the Virgin Islands. Family to Family Health Information Centers funded
in 40 states. This network of families and friends is over 50,000 and growing.
Family To Family Health Information Centers funded in all 50 states of US.
Family Voices has designed a new infrastructure with the purpose of creating a dynamic and effective structure based on a strong network of family-led
organizations. The plan established experienced family leaders as National Field Coordinators (NFCs) and Regional Field Coordinators (RFCs) to assist in the
strengthening/development of family-led organizations in each state, organized within four regions.
Additionally, a brand new membership program was instituted. At the state level, State Affiliate Organizations (SAOs) are permitted to assume the title
"Family Voices of (their state)" and serve as the Family Voices representative in that state. One SAO per state is accepted in addition to tribal SAOs.
To date, there are 19 SAOs (NHFV is one), while 16 other family-led organizations have declared their intention to apply to become their state's SAO.
Most of the current SAOs are also the Family-to-Family Health Information Centers (F2F HICs) in their states.
Family Voices is on its way to having a more solid and stable infrastructure. With the strengthening of the SAOs, each state will increase its ability to raise
funds and compete for more grants so they can serve children and youth with special health care needs/disabilities and their families for a long time to come.
The 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.
The Family Voices network of family leaders and friends suffered a tremendous loss on Saturday, June 26, 2010
with the sudden, unexpected passing of our founding Executive Director, Polly Arango.
Many have written eloquently about Polly's personal and professional impact on their lives and work. Polly's dedication,
wisdom, generosity and multiple talents will be deeply missed. Among Polly's many skills were her ability to conceptualize
and communicate ideas in elegant and simple language, her ability to align diverse groups to accomplish a common goal and her capacity to mentor
others. These gifts played a critical role in the formation and development of the national Family Voices organization and the Family-to-Family
Health Information Centers, now funded in every state and the District of Columbia
When President Clinton began work on health care reform in 1992, there was no national strategy to engage families in the debate. Out of this need,
Family Voices was born. Polly became the first Executive Director and brought compelling skills to the role. She was a passionate advocate who
power of language. To be convincing, Polly thought, we must be able to express our ideas in straightforward, simple words. No fluff allowed! Every
week Polly produced a "one pager" with key ideas about the needs of children with special needs and health care reform. These were disseminated
to thousands by fax and mail. These excellent pieces built the reputation of Family Voices as a trusted resource.
Polly believed in the power of a story to deliver a message. Family Voices represented the power of thousands of these stories. We were
(and still are!) real people delivering messages from real life. It is a unique and much-needed perspective. Polly had a special talent for nurturing
and cultivating this voice. Polly's vision of family was wide and inclusive. She believed in the strength of all families to nurture themselves and their
children and to partner in improving health care. She conveyed this message with conviction from kitchen tables to board rooms and negotiating
tables, as well as to state, national and international audiences.
Polly, along with her husband John, was an experienced community organizer. She knew the value of shared responsibility and of building common
goals. Polly was a skilled listener, who recognized that everyone's concerns were important, and who also knew how to create consensus when needed.
Polly was a mentor who was superb at identifying other family leaders' skills and interests and engaging them in areas they cared about. As Polly was
invited to state and national arenas, she often brought local families along to learn the ropes and experience the national scene. Polly believed in
family professional partnerships as a core principle of family-centered care. She was expert at building common ground with professional partners
and working together to advance shared goals.
The health care reform of the 1990s was not successful, yet, the idea that families had key roles to play in partnering to improve health care had
gained a firm foundation. The need for Family Voices as an organization to give voice to families, to support and connect family leadership and to
promote the concepts of family-centered care was clear. Polly's extraordinary skills had led the way. Polly led the Family Voices organization for
10 years through the development of pilot Family-to-Family sites and the writing of federal legislation to fund Family-to-Family Health Information
Centers. Polly continued to contribute to Family Voices in multiple formal and informal roles throughout her retirement. Polly was generous in all that
Thank you, Polly. Your vision of a vibrant national network of connected families, encompassing families from all races, cultures and backgrounds,
with the skills and support to help other families and to partner with professionals working toward family-centered, community based,
comprehensive, coordinated, culturally competent health services is in place. The work will continue. Your legacy will live on in the hearts, minds
and work of generations to come. Your spirit will forever be our guide.
|Family Voices for Families of Children and Youth with Special Health Care Needs