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Family Voices is a national nonprofit led by families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family-led organizations across the United States that provide support to families of CYSHCN.
We promote partnership with youth and families at all levels of health care, from individual care to policy and decision-making, to improve policies and systems of care for children.
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-to-Family Health Information Center (F2F) or Family Voices Affiliate Organization (FVAO)
F2Fs and FVAOs in U.S. Territories:
F2Fs and FVAOs serving Tribal Communities:
Family Voices News
Other News, Information, and Resources (Washington Update, April 3, 2019)
From the Agencies: From the Agency for Healthcare Research and Quality (AHRQ) - A new mobile app for smartphones, tablets, and laptop computers to help patients prepare for medical visits. The AHRQ Question Builder app - available at no charge from iTunes and Google...
Your Input Sought/Of Possible Interest (Washington Update, April 3, 2019)
YOUR INPUT SOUGHT Survey to Improve Caregiver Hospital Experience The Massachusetts Institute of Technology (MIT) is analyzing the hospital visitor experience. If you are someone in the United States that has either visited a loved one in a hospital OR identifies as a...
Webinars from the Field (Washington Update, March 14, 2019)
Identifying and Serving Children with Health Complexity: Spotlight on Pediatric Care Together Thursday, March 14, 1:30-2:30 pm ET Lucile Packard Foundation for Children’s Health The webinar will be a discussion about the report, Identifying and Serving Children with...
The Administration (Washington Update, March 14, 2019)
President’s Budget Proposal On Monday, March 11, the president released his budget proposal for FY 2020, which begins on October 1, 2019. Among other things, his budget proposes to turn Medicaid into a state block grant, and mandate that states establish work...
Congress (Washington Update, March 14, 2019)
Medical Expense Deduction On March 4, Senators Chuck Grassley (R-IA) and Ron Wyden (D-OR), Finance Committee Chairman and Ranking Member, respectively, introduced the Tax Extender and Disaster Relief Act of 2019 (S. 617). The bill would extend, for an additional two...