The Amputee Coalition Champions Family-to-Family Health Information Centers

By: Morgan Sheets

Family-to-Family Health Information Centers (F2F-HICs) are statewide, parent-run information and referral centers that provide families with information about how to obtain and finance healthcare for their children/youth with special healthcare needs (CYSHCN), such as disabilities and chronic medical conditions. The Deficit Reduction Act of 2005 (DRA) mandated that federal grants be provided ($3 million in fiscal year 2007 [FY2007], $4 million in FY2008, and $5 million in FY2009) to create a center in every state and the District of Columbia. As of June 2009, this goal had been achieved through grants administered by the Health Resources and Services Administration.

The F2F-HICs received their funding through the DRA, bypassing the need for a provision in the appropriations bills, but no funding was provided for future years. The DRA funding runs out at the end of FY2009.

The Amputee Coalition recently joined a coalition of organizations in seeking an appropriation of $10 million in the FY2010 Labor-Health and Human Services-Education appropriations bill to continue the work of the centers. Without this federal funding, most of the 51 centers will have to close. They are very small operations, receiving federal grants of less than $100,000 each. Yet, they are of immense help to families in desperate situations.

The needs of CYSHCN are chronic and complex, and securing and paying for their care is often a struggle. F2F-HICs provide life-altering information to families in crisis. For example, simply enrolling in Medicaid for a newborn in need of expensive critical care can be an arduous task, and the centers can assist families in this process. Most of the staff at F2F-HICs are members of families with special needs children. This unique perspective allows them to provide advice, offer a multitude of resources, and tap into a network of other families and professionals for support and information. In addition, they help healthcare providers to understand the various public programs available for their patients and assist in dealing with private insurers. In fact, about one-third of requests to F2F-HICs are from healthcare professionals. The centers also aim to ensure that each child has a “medical home” where partnerships are built between healthcare professionals and the families of CYSHCN, thereby improving the quality of care.

At the present level of funding, $5 million, each site receives only $95,700 per year. Although hundreds of thousands of families are being served by F2F-HICs, the level of funding is not sufficient to serve all of the families and providers who need assistance in each state. An increase to $10 million is needed in FY2010 to assist more special-needs children, their families and their healthcare providers to expand training and technical assistance to grantees and to make these valuable services available to additional regions.

The Amputee Coalition is proud to be part of the efforts to continue funding for this extremely valuable program, thereby helping to ensure optimal healthcare for our nation’s most vulnerable children.

Sheets is the national advocacy director for the Amputee Coalition. The Amputee Coalition is involved in a diverse range of legislative efforts to ensure that amputees are able to meet their full potential. To find our more or to get involved, visit our Web site at www.amputee-coalition.org/advocacy/index.html