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

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

INSIGHTi

Family-to-Family Health Information Centers:
Current Status and Policy Considerations
February 6, 2024
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
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• 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 to $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.
Table 1. F2F HIC Funding per Grantee, FY2014-FY2023
Average
Fiscal
Grantee
Difference From
Year
Amount
Prior Fiscal Year
FY2023
$89,136
-$1,381
FY2022
$90,517
$1,242
FY2021
$89,275
$164
FY2020
$89,111
-$7,647
FY2019
$96,758
$8
FY2018
$96,750
$7,107
FY2017
$89,643
-$3,530
FY2016
$93,173
-$1,143
FY2015
$94,316
-$1,384
FY2014
$95,700
$ 0
Source: CRS analysis of HRSA’s Congressional Budget Justifications, FY2014-FY2024.
Note: HRSA’s FY2024 Congressional Budget Justification is available on HRSA’s Budget page.
National Scope: Families and CYSHNs
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 CYSHCNs 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.

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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).
Table 2. F2F HIC Legislation and Appropriation History
Mandatory
Appropriations
Law
(millions)
Changes
Deficit Reduction Act of 2005 (P.L. 109-
$3
Authorized incremental funding increases for FY2007-
171)
$4
FY2009; established statewide program under Title V of
$5
the Social Security Act
Patient Protection and Affordable Care
$5
Authorized funding for FY2010-FY2012
Act (P.L. 111-148)
American Taxpayer Relief Act of 2012
$5
Authorized funding for FY2013
(P.L. 112-240)
Bipartisan Budget Act of 2013 (P.L. 113-
$2.5
Authorized funding for FY2014 (half-year)
67)
Protecting Access to Medicare Act of
$2.5
Authorized half-year funding for both FY2014 and
2014 (P.L. 113-93)
$2.5
FY2015
Medicare Access and CHIP
$5
Authorized funding for FY2015-FY2017; struck partial
Reauthorization Act of 2015 (P.L. 114-10)
funding for FY2015
Bipartisan Budget Act of 2018 (P.L. 115-
$6
Authorized funding for FY2018-FY2019; required F2F
123)
HIC to be developed in all territories and at least one
developed for tribal communities.
Sustaining Excellence in Medicaid Act of
$6
Authorized funding for FY2020-FY2024
2019 (P.L. 116-39)
Source: CRS analysis of legislation on Congress.gov.
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.

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Author Information

Alexandria K. Mickler

Analyst in Health Policy

Disclaimer
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