Family-To-Family Health Information Centers

Authorizing Legislation - Section 501(c)(1)(A) of the Social Security Act.

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

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