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Family-To-Family Health Information Centers
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FY
2007
Actual |
FY
2008
Enacted |
FY
2009
Request |
FY
2009 +/-
FY 2008 |
BA |
$3,000,000 |
$4,000,000 |
$5,000,000 |
+$1,000,000 |
Authorizing
Legislation - Section 501(c)(1)(A) of the Social
Security Act.
FY
2009 Authorization |
$5,000,000 |
Allocation
Method |
Competitive
grant/co-operative agreement |
Program Description and Accomplishments
The Family-to-Family Health Information Centers
supports grants to family-run organizations
to ensure families have access to adequate information
about health care, community resources and supports
in order to make informed decisions around their
children’s health care.
The program for FY 2009 will support centers
in approximately 50 states to: (1) Assist families
of children with special health care needs (CSHCN)
make informed choices about health care in order
to promote good treatment decisions, cost effectiveness
and improved health outcomes; (2) Provide information
regarding the health care needs of and resources
available for CSHCN; (3) Identify successful
health delivery models; (4) Develop with representatives
of health care providers, managed care organization,
health car purchasers, and appropriate State
agencies, a model for collaboration between
families of CSHCN and health professionals;
(5) Provide training and guidance regarding
the care of CSHCN; (6) Conduct outreach activities
to families, health professionals, schools and
other appropriate entities; and (7) Be staffed
by such families who have expertise in Federal
and State public and private health care systems,
and by health providers.
A four-year pilot of Family-to-Family Health
Information Centers of 6 centers which started
in June 2002, has documented improved family
and systems outcomes, addressing the above concerns.
Requests from families and providers have drastically
increased as services and financing options
change in states. Both groups report being satisfied
with the updated information the centers provide.
Family professional partnerships have increased
with agencies requesting center-trained families
on tasks forces, state and community committees
and on material review groups. Approximately
1/3 of the families are underserved and the
centers providing information for highly culturally
and linguistically diverse populations have
cultural brokers, interpreters and translated
materials, indicating that outreach to these
groups is effective. In some instances, more
CSHCN are keeping medical appointments, thereby
enhancing health outcomes. This is due to Centers
educating families in how better to partner
with providers and navigate across systems,
but is also due to how providers interact with
families. For example, some centers helped train
medical residents on how to be more family-centered
and culturally competent in their approaches
to providing care while others provided training
to “Medical Home” teams in their
States. Currently, all 30 centers are collecting
data on the issues facing families regarding
services and financing of those services while
working with Medicaid, Education, Title V and
other agencies to inform them of families needs.
Information about health care financing and
community resources were the most frequently
reported type of assistance provided. Although
funding only began in June 2007, aggregate data
for July through September of 2007 indicate
the following accomplishments: over 31,800 direct
encounters in response to requests from families
and 17,705 with providers; providing training/information
to over 64,700 people in sessions at conferences
and 365,000 by newsletters with an average of
34% being from underserved populations.
Funding includes costs associated with grant
reviews, processing of grants through the Grants
Administration Tracking and Evaluation System
(GATES) and HRSA’s electronic handbook,
and follow-up performance reviews.
Funding History
FY
2004 |
--- |
FY
2005 |
--- |
FY
2006 |
--- |
FY
2007 |
$3,000,000 |
FY
2008 |
$4,000,000 |
Budget Request
The Deficit Reduction Act of 2005 appropriated
$3,000,000 for this program in FY 2007, $4,000,000
in FY 2008 and $5,000,000 in FY 2009.
Data from the 2002 National Survey of Children
with Special Health Care Needs reflects the
health informational needs of families. As many
as 33% of families with children with special
health care needs (CSHCN) report dissatisfaction
with some aspect of care, with 19% of those
families not satisfied with the provision of
information and 12% feeling they are not listened
to. More that half of poor families report receiving
care that lacks at least one component of family
centered care and 47% of Hispanic and 43% of
non-Hispanic Black families report the same.
Only 57% of families with CSHCN report they
participate in decision-making and are satisfied
with the services they receive. Eighteen percent
of families surveyed have at least one unmet
need and 5% have at least one unmet family support
need. Data from the 2006 National Survey on
Children with Special Health Needs will be compared
with that from the 2002 Survey, in addition
to other data from the centers which will be
collected and aggregated by the National Center
on Family/Professional Partnerships to determine
if there were positive changes in States with
Centers.
Program is working with grantees, in collaboration
with the National Center for Family/Professional
Partnerships on monthly technical assistance
calls on enhancing program content and data
collection. A series of calls with other national
centers to provide expertise on the six directives
by Congress is currently underway. In addition,
program is leading an effort with a grantee
evaluation workgroup and a contractor on assessing
grantee data collection capacity in order to
implement any recommendation to ensure more
accurate data collection
# |
Key
Outcomes |
FY
2004 Actual |
FY
2005 Actual |
FY
2006 |
FY
2007 |
FY
2008
Target |
FY
2009
Target |
Out-Year
Target |
Target |
Actual |
Target |
Actual |
Long-Term
Objective: Promote access to, and appropriate
use of health care information |
15
III
C.2 |
The
proportion of families with CSHCN who received
services from the Family-to-Family Health
Information Centers reporting that they
were better able to partner in decision
making at any level (Developmental) |
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TBD |
TBD |
NA |
# |
Key
Outputs |
FY
2004 Actual |
FY
2005 |
FY
2006 |
FY
2007 |
FY
2008 Target/ Est. |
FY
2009 Target/ Est. |
Out-Year
Target/ Est. |
Target/
Est. |
Actual |
Target/
Est. |
Actual |
15III.C.1 |
Number
of families with CSHCN who have been provided
information, education and/or training from
Family-to-Family Health Information Centers
(Developmental) |
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a |
TBD |
TBD |
NA |
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Grants
to States |
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|
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30 |
41 |
51 |
NA |
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Appropriated
Amount ($ Million) |
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3 |
4 |
5 |
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Note:
a |
Data
will be available for FY 2007 in 2008. The
FY 2007 data will serve as the baseline
for setting FY 2008 and FY 2009 targets. |
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