Family-to-Family Health Information Centers: Current Status and Policy Considerations

Family-to-Family Health Information Centers (F2F HIC) receive mandatory appropriations to provide information, education, technical assistance, and peer support to families of children and youth with special health care needs (CYSHCN). Currently, the program receives a mandatory appropriation through FY2024. F2F HIC aim to promote optimal health and well-being for CYSHCN and their families by advancing systems of care and ensuring that families and health professionals partner in all levels of shared decisionmaking. F2F HIC are nonprofit, family-led, and family-staffed organizations in all 50 states, six U.S. territories (including the District of Columbia), and three tribal communities. The program is administered by the Maternal and Child Health Bureau (MCHB) within the Health Resources and Services Administration (HRSA) of the Department of Health and Human Services (HHS). This Insight provides an overview of the current program, the national scope of CYSHCN, and the program's funding history. It also offers considerations for Congress regarding policy and funding options beyond FY2024.

Current Program

The current program supports 59 F2F HIC in delivering patient-centered information, education, technical assistance, and peer support. Additional legislatively required activities include

• assisting families of CYSHCN in making informed choices about health care in order to promote good treatment decisions, cost-effectiveness, and improved health outcomes;
• providing information regarding health needs of, and resources available to, CYSHCN;
• identifying successful health care models for CYSHCN;
• developing, with representatives of providers, managed care organizations, health care purchasers, and appropriate state agencies, a model for collaboration between families of CYSHCN and health professionals;
• providing training and guidance regarding the care of CYSHCN;
• conducting outreach activities for families, health professionals, schools, and other appropriate entities; and
• staffing F2F HICs with families of CYSHCN who have expertise in federal and state health care systems, and with health professionals.

The program aims to increase representation from underrepresented and diverse communities based on recent evidence that special health care needs are more common among non-Hispanic Black children and children living in a low-income household. Recently, the program also began implementing activities to address long-term impacts of COVID-19, primarily through education about telehealth and vaccination services.

Competitive grants awarded to individual grantees ranged between $49,000 and $96,750 in FY2023. Any domestic public or private entity is eligible to apply for funds up to an estimated maximum. Table 1 displays average funding per grantee from FY2014 to FY2023.

National Scope: Families and CYSHCN

According to the 2019-2020 National Survey of Children's Health (NSCH), over 14 million children in the United States have a special health care need, with substantial geographic variation. Further, more than one in four families (28.6%) had at least one CYSHCN. Families of CYSHCN often experience chronic stress and are at risk for additional adverse health and social-emotional outcomes.

According to HRSA, F2F HIC provided services to over 204,000 families and 103,000 health professionals in FY2021. Grantee data indicate that service recipients report a high level of satisfaction with the information and services provided by F2F HIC.

Funding History

From FY2002 through FY2006, HHS funded F2F HIC in 36 states using a combination of various program authorities and direct appropriations. The Deficit Reduction Act of 2005 (DRA, P.L. 109-171) authorized mandatory appropriations under Section 501 of Title V of the Social Security Act (P.L. 74-271). The DRA provided incremental funding from FY2007 through FY2009 (see Table 2) and required F2F HIC to be developed in all states by FY2009.

The program received a mandatory appropriation of $5 million from FY2009 through FY2017. The program's geographic reach was expanded by the Bipartisan Budget Act of 2018 (P.L. 115-123), which required that additional centers be developed in all territories and at least one tribal community. This law also increased annual appropriations to $6 million from FY2018 through FY2019. The F2F HIC program was most recently extended through FY2024 under the Sustaining Excellence in Medicaid Act of 2019 (P.L. 116-39).

Policy Considerations

Legislation has not been introduced to extend funding for the F2F HIC program. Should Congress decide to extend funding, Congress may face multiple policy questions, including the following:

• Are statewide services sufficiently supported by current funding levels? Funding has remained relatively consistent since the program's enactment in 2005 (see Table 2).
• Does the $1 million increase from 2018 adequately support the program's expanded geographic reach and focus?
• Generally, each state/territory receives a similar funding level. Should the distribution of funds weigh other factors, such as the statewide prevalence of families with CYSHCN, or state population?
• CRS was unable to locate any relevant program evaluations; Congress may wish to consider whether the program has been sufficiently evaluated and whether a funding renewal should consider a program evaluation.