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Family Voices is a family-led nonprofit organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. Family Voices works with organizations and initiatives to build their capacity for engaging youth and families in their work. We developed an evidence-based framework for youth and family engagement that we apply to the training and technical assistance we offer.
Family Voices also supports a network of family-led and family-serving organizations across the country to meet the needs of their communities. These organizations are in all 50 states, 5 U.S. territories, and 3 tribal nations. If you are looking for support for your child with special health care needs, please scroll down to search for the Family Voices Affiliate Organization or Family-to-Family Health Information Center in your state or territory.
Do you have a child or teen who has special health care needs or disabilities? Find support in your local community.
¿Tiene un niño o adolescente que tiene necesidades especiales de salud o discapacidades? Haga clic aquí para buscar ayuda.
Find help in your community
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Family Voices Affiliate Organizations (FVAOs)
What are Family Voices Affiliate Organizations?
A Family Voices Affiliate Organization (FVAO) is a statewide/territory-wide/tribal, parent/family-led non-profit organization, with a Board composed of a majority of family members of CYSHCN, that meets the requirements of an FVAO and works to advance the mission, vision, and principles of Family Voices. FVAOs are a critical part of our collective effort to keep families at the center of children’s health care.
There is an FVAO in most states, and only one FVAO is approved per state. In many cases, the FVAO is the same organization that serves as the Family-to-Family Health Information Center (F2F) in that state, though not in all cases.
FVAOs stay connected through a listserv, national meetings, monthly national calls, and quarterly regional calls. The affiliate network works with the Family Voices policy team to inform our policy work and take collective action.
If your organization is interested in becoming a Family Voices affiliate, please contact Ian Whitney for more information and an application.
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Family-to-Family Health Information Centers (F2Fs)
What are F2Fs?
Family-to-Family Health Information Centers (F2Fs) are family-led organizations that support families of children and youth with special health care needs (CYSHCN). Family Voices provides technical assistance to the F2Fs through the Family Engagement and Leadership in Systems of Care grant, funded through 2028 through the Health Resources and Services Administration (HRSA) Maternal Child Health Bureau.
The Maternal and Child Health Bureau (MCHB) funds F2Fs in every state, the District of Columbia, five US territories, and three F2Fs serving American Indians and Alaska Natives.
Each F2F is staffed by highly skilled, knowledgeable families with first-hand experience of the challenges faced by CYSHCN and their families. These uniquely qualified staff provide critical support to families caring for CYSHCN, particularly families of children with complex needs and those from communities that experience worse outcomes.
F2Fs also help healthcare providers, state and federal agencies, and legislators understand and respond to the needs of CYSHCN and their families.
Find a Family Voices Affiliate Organization (FVAO) or Family-to-Family Health Information Center (F2F)
F2Fs and FVAOs in U.S. Territories:
F2Fs and FVAOs serving Tribal Communities:
Family Voices News
Washington Update, December 11, 2019
This week Members of Congress unveiled several bills that could affect families of children and youth with special health care needs. A conference agreement on the defense authorization bill would provide paid parental leave to all federal employees. This bill is...
Washington Update December 4, 2019
Congress is struggling to agree on funding for the federal government beyond December 20, when the temporary funding measure expires. It is unclear whether there will be resolution on legislation to address the thorny issues of surprise medical billing and...
Washington Update, November 20, 2019
Congress is still working away on FY 2020 appropriations, and legislation to address surprise medical billing and prescription drug prices. Meanwhile, the Centers for Medicare and Medicaid Services (CMS) has been very busy. The agency released a significant proposed...
Washington Update, October 31, 2019
Not all cooperation between the political parties has ceased in DC. During recent days, the House passed five health bills applauded by both Democrats and Republicans. These bills address the pediatric health care workforce, the nursing workforce, and palliative care....
Washington Update, October 24, 2019
Not a whole lot is new on the health front this week, except that the Centers for Medicare and Medicaid Services (CMS) released data showing that health insurance premiums have come down and the number of health plan choices has gone up. (See the ACA section, below.)...























