Family-to-Family Health Information Centers: Connecting Families and Professionals to Resources

By Diana L. Denboba
Branch Chief, Maternal and Child Health Bureau

The Family-to-Family Health Information Centers (F2Fs) grant program was originally established for the Health Resources and Services Administration Maternal and Child Health Bureau by the Family Opportunity Act as a part of the Budget Deficit Reduction Act of 2005 (P.L. 109-171). Since 2006, 51 centers have been funded. The Patient Protection and Affordable Care Act of 2010 extended F2F funding through fiscal year 2012. This initiative supports grants that ensures families of children (and youth) with special healthcare needs (CSHCN) participate in decision making at all levels and are satisfied with the services they receive by providing peer support to families, and providing information, training, and technical assistance, to families and the professionals who serve them.

Most F2Fs have been operating for several years and all are expected to collaborate with their state Title V programs – helping with needs assessments and quality improvement; providing the family perspective; and, helping states link with partners, traditional and non-traditional.

For example, Parents’ Place of Maryland, the Maryland F2F, in partnership with the state CSHCN program, conducted a statewide needs assessment survey of parents, most of whom had CSHCN, including those in rural parts of the state. The top issues for the state included families having to cut back or stop work because of their child’s condition and having an unmet health care need. This information will assist the state in talks with policymakers and insurance providers. The Wyoming family friendly walk-through survey tool is used as a continuous quality improvement mechanism where families provide input directly to clinics around Americans with Disabilities Act compliance and the "family friendliness" of staff receiving/greeting families. Information and support were provided to families through the California F2F in Spanish, Cantonese, Mandarin, Hmong, ASL, Vietnamese, Hindu, Urdu, Farsi, Hebrew, Japanese and Tagalong. The New Jersey F2F has developed a family support group specifically for Hispanic families.

Many of the centers are the leading voice for advocacy in their state, sharing personal stories and data to reflect the value added by Title V programs. The F2Fs can help train and unite a variety of current and potential partners for Title V so that they can develop shared goals around CSHCN. The Iowa F2F developed a 40-hour baseline competency training for all family support staff of the Family Governance Council agencies, made up of more than 20 state family organizations. The New Hampshire F2F works closely with early childhood service providers to help connect the health and support needs of CSHCN with early childhood services. The Colorado F2F educates Federally Qualified Health Centers on what medical homes should be for CSHCN. The Vermont F2F trains medical students and residents in family-centered care, and others match them with parents of CSHCN to get a better understanding of what families experience daily.

A review of all the centers shows that the top issues addressed this past year with families AND professionals, included financing challenges, inadequate insurance/ payment for health services needed, being uninsured and navigating systems/finding resources. Eighty percent of surveyed families report that F2Fs helped them better partner – in decision-making with their children’s providers; 90 percent of surveyed families report that F2Fs helped them find or navigate community services. For more information about the F2Fs or to find one in your state, visit their website or contact the F2F Project Officers, LaQuanta Smalley and Sylvia Sosa.