Family-to-Family Health Information Centers

Family-to-Family Health Information Centers (F2F HICs) receive mandatory appropriations to provide support and information to families of children and youth with special health care needs (CYSHCN). Currently, the F2F HIC program receives mandatory appropriations through December 31, 2026. The President's FY2027 budget does not propose further funding for the program.

F2F HICs 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 HICs 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). The extent to which HHS restructuring proposals may affect the program is unclear.

Overview

The current program supports 59 F2F HICs in delivering patient-centered information, education, technical assistance, and peer support. Additional requirements 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.

Competitive grants ranged between $48,932 and $96,750 in both FY2025 and FY2026. Figure 1 displays average grant totals from FY2014 to FY2026.

Figure 1. Average Funding, per Grantee

Source: HHS Budget Justifications. Notes: Data for FY2014-FY2025 reflect final funding totals; FY2026 data reflect the enacted total.

CYSHCN

According to the 2023-2024 National Survey of Children's Health, over 15.5 million children (21.5%) ages 17 and younger have special health care needs. CYSHCN are a diverse population with wide ranges of physical, mental, and behavioral health needs. Some research indicates that national estimates may not account for all children with functional difficulties or complex needs. Expanded estimates suggest that over one-quarter (27% percent, or 19.6 million) of children ages 17 and younger may have special health care needs. Families of CYSHCN often experience chronic stress and adverse health or social-emotional outcomes.

According to HRSA, F2F HICs served over 169,000 families and 86,000 health professionals in FY2024. Grantee data indicate that the information received from F2F HICs met clients' needs (90% of families; 91% of health professionals) and that the services provided by F2F HICs helped clients work better with health professionals (86% of families) and with families of CYSHCNs (89% of health professionals).

Funding History

From FY2002 through FY2006, HHS funded F2F HICs in 36 states using a combination of program authorities and direct appropriations. The Deficit Reduction Act of 2005 (P.L. 109-171) authorized mandatory appropriations under Section 501 of Title V of the Social Security Act (P.L. 74-271), provided incremental funding, and required F2F HICs to be developed in all states by FY2009 (see Table 1).

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.

Policy Considerations

In the 119^th Congress, two bills would extend F2F HIC funding past December 31, 2026 (H.R. 1435; S. 3714). The President's FY2027 budget does not include further funding. In addition to the status quo, other policy considerations include the following:

• F2F HIC funding has remained relatively consistent since the program's enactment in 2005; in recent years, the program received multiple partial-year appropriations (see Table 1). Congress could consider whether this funding approach, or others (e.g., multi-year authorization), would best support program goals. Congress may also consider whether statewide services are sufficiently supported by current funding levels.
• FY2024 grantee data indicate that the program did not achieve its target number of families reached or health professionals trained. Congress may consider what factors contribute to this and whether additional efforts focused on outreach are needed to achieve program targets.
• Although program data demonstrate that clients are satisfied with F2F HIC services, CRS was unable to locate any relevant program evaluations. Congress may consider whether the program has been sufficiently evaluated and whether a funding renewal should consider an evaluation.