Watch this short video or read below to learn more about how Family-to-Family Health Information Centers help families of children with special health care needs/disabilities.

What are F2F HICs?

Family-to-Family Health Information Centers (F2F HICs) are family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN) and the professionals who serve them.  F2F HICs provide support, information, resources, and training around health issues.

Staff from Exceptional Children's Assistance Center (ECAC, the F2F HIC in North Carolina) helping conference participantsF2F HICs are uniquely able to help families because they are staffed by family members who have first-hand experience navigating the maze of health care services and programs for CYSHCN.  This intimate understanding of  the issues that families face make F2F staff exceptionally qualified to help families navigate health systems and make informed decisions. 

Some F2F HICs are independent nonprofits; others are part of collaborative nonprofit organizations or state agencies. All F2F HICs have a strong commitment to and expertise about CYSHCN.

How are F2F HICs funded?

The Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) provides the primary funding support for F2F HICs, authorized by the Family Opportunity Act (FOA) in 2006 (part of the Deficit Reduction Act). This funding is currently authorized through the Affordable Care Act (ACA).  Through this funding, HRSA's MCHB currently supports F2F HICs in all states and the District of Columbia. This federal funding is blended in some states with oher federal or state specific funding to support F2F activities..

This funding enables F2F HICs to provide free assistance to families.

How do F2F HICs help?

Each F2F HIC is unique, reflecting the needs and character of the community and state that it serves. Organizational structure, locations, partnerships, and specific initiatives may vary.  However, all F2F HICs provide:

  • Assistance to families and professionals in navigating health care systems
  • Information, education, training, support and referral services
  • Outreach to underserved / underrepresented populations
  • Guidance on health programs and policy
  • Collaboration with other F2F HICs, family groups, and professionals in efforts to improve services for CYSHCN
  • Evaluation and outcome assessment

What are typical questions that a parent or professional might ask an F2F HIC?

  • Is there a health insurance program that will pay for my child's medical needs?  How do I enroll?
  • How will the Affordable Care Act affect me?
  • Medicaid has denied payment of some of my child's services. What do I do now?
  • My child is very medically complicated. How can I best work with her doctors?
  • My baby is being released from the NICU.  What will happen next?  Can you tell me about early intervention services?
  • Should my child receive the flu vaccine?
  • Where can I find a support group for families of children with my child's disability?
  • How can you help us to develop a Family Advisory Committee at our hospital?
  • Do you have materials appropriate for our growing immigrant community?
  • We'd like to set up a family-faculty training program. Can you help?

Example of one state's F2F HIC activities:

We are working closely with families and project partners as health care reform rolls out in our state; bringing the needs of CSHCN to the forefront . We are intensely involved with the disability community as our state Medicaid agency plans a mandatory Medicaid managed care pilot program for SSI recipients ,something which has major implications for youth transition; we have shared our state MCH Block Grant comments with leaders advocating for children's health and have developed new relationships with some of them.Our new Medicaid eligibility/enrollment brochure for children and adults with disabilties, as well as our new Diaper Fact Sheet, are "flying off the shelves", both on our website and at outreach events. We are gearing up for a Health Reform and CSHCN seminar in October.

Summary of activities of The  ARC of Illinois F2FHIEC  (July 2010)

Additional Reports about F2F HICS:

Innovative Strategies for Strengthening Family to Family Health Information And Education Centers (2006)
A 35-page report prepared for CMS by Thomson Medstat, Research and Policy Division, that provides a brief overview of the F2F HICs and examples of grantees' strategies focused on such areas as developing partnerships, enhancing communication with families, serving culturally diverse populations, facilitating the transition to adulthood and ensuring sustainability.

Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees (2006)
A 55-page paper prepared for CMS that describes the activities of the 19 Grantees funded in fiscal year 03 and 04 from CMS and six Grantees funded in fiscal year 02 by the Maternal and Child Health Bureau (MCHB), providing information about grant activities, implementation challenges, and accomplishments of the F2F HICs.