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 services paid?

Most services provided by F2F HICs are free to families and professionals. The F2F HIC grant program was established in all States and DC by the Family Opportunity Act of 2005 and subsequent laws funded F2Fs through FY 2017. Funds are awarded by the Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) through a competitive grant process.

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

How have F2F HICs made a difference?

In FY 2015, F2F HICs served almost one million family members and 350 thousand professionals. Families report the positive impact of F2F HIC services: 92% of families feel the assistance and training they received has made them better able to partner in decision-making and better able to navigate services, and 90% feel more confident about getting health care services their child needs.

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?
  • Can you help me understand the ACA?
  • 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?
  • 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 continue to increase our outreach to minority and underserved populations, with new collaborative efforts being established with the University of Arkansas for Medical Sciences, the Little Rock school district and the Arkansas Minority Health Commission. We continue to provide resource information and training on the ACA-related activities happening in our state, particularly the health insurance exchange and the Medicaid Payment Improvement Initiative. We have also further strengthened our relationship with the Arkansas Title V program, which has maintained its increased funding support to the F2F program, as well as increasing our project collaborations, particularly in the areas of youth health care transition to the adult health care world. We also continue our strong relationship with Arkansas Children's Hospital and their research division, ACHRI. They are also a on-going funding source for us, currently funding three different projects right now. These projects include a sub-contract on the HRSA funded Autism Implementation grant, a TRI Transition project, and our on-going Neo-natal family support project. We continue to work closely with the state UCEDD, on projects such as health care insurance exchange training and awareness programs and on the LEND project.

Summary of activities of Arkansas Disability Coalition, the F2F HIC in Arkansas  (June 2014-May 2015)

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.