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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
The Administration (Washington Update, January 30, 2019)
New Federal Policy on Restraint and Seclusion in Schools On January 17, Secretary of Education Betsy DeVos announced a new department initiative to address the problem of restraint and seclusion of school children with disabilities. See U.S. Department of Education...
Congress (Washington Update, January 30, 2019)
Money-Follows-The-Person (MFP) Program Extended Temporarily On January 25, the president signed the Medicaid Extenders Act of 2019 (H.R. 259), which was approved in the Senate by unanimous consent on January 17. The Act provides $112 million for Money Follows the...
The Courts (Washington Update, January 30, 2019)
Kentucky residents have filed a lawsuit challenging the administration’s re-approval of a Medicaid waiver that would establish “community engagement” requirements for certain Medicaid beneficiaries. Eligibility for these individuals would be contingent on their...
Medicaid/CHIP News, Information, and Resources (Washington Update, January 30, 2019)
MEDICAID WAIVERS CMS Approves Arizona’s Medicaid Community Engagement Demonstration Amendment (CMS press release, 1/18/19). See CMS approves 8th state for Medicaid work requirement (Healthcare Dive, 1/22/19). WORTH REPEATING: Tennessee proposes to amend its...
Affordable Care Act (Washington Update, January 30, 2019)
OPEN ENROLLMENT The only jurisdictions that are still open for insurance-coverage enrollment are New York and the District of Columbia. In both, the enrollment period ends on January 31. NOTICE OF BENEFIT AND PAYMENT PARAMETERS (NBPP) On January 17, the Department of...