The Amputee Coalition of America recently signed a letter to Senate appropriators asking that funding be provided for Family-to-Family Health Information Centers (F2F).  The F2F centers assist families in securing and financing health care for their special needs children.  The program has been funded for the past three years through a provision in the Deficit Reduction Act (DRA), bypassing the need for a provision in the appropriations bills.  The DRA funding runs out at the end of FY 2009, so we are seeking an appropriation of $10 million.  Without this federal funding, most of the 51 centers (one in each state and DC) 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. 

__________________________________

July 10, 2009

The Honorable Tom Harkin, Chairman

Subcommittee on Labor, Health & Human          Services and Education Appropriations

United States Senate

Washington, DC  20510

The Honorable Thad Cochran, Ranking Member

Subcommittee on Labor, Health & Human Services and Education Appropriations
United States Senate
Washington, DC  20510

Dear Mr. Chairman and Ranking Member:

The undersigned national and state-based organizations respectfully request that the Subcommittee provide $10 million in funding for Family‑to‑Family Health Information Centers (F2F-HICs) in the FY2010 Labor-HHS-Education appropriations bill.  In FY2009, F2F-HICs received $5 million in Federal funds through the Deficit Reduction Act of 2005 (DRA), but no funding was provided for future years.  Without an appropriation for this program, most of the 51 centers in the country will need to close their doors, adversely impacting children with special health care needs and their families. 

F2F-HICs are statewide, parent-run information and referral centers that provide families with information about how to obtain and finance health care for their children/youth with special health care needs (CYSHCN), such as disabilities and chronic medical conditions.  The DRA mandated that federal grants be provided ($3 million in FY2007, $4 million in FY2008, and $5 million in FY2009) to create a F2F-HIC 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 needs of CYSHCN are chronic and complex and, thus, securing and paying for their care is often a struggle.  F2F-HICs provide life-altering information to families in crisis; simply enrolling in Medicaid for a newborn in need of expensive critical care can be an arduous task.  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 health care 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 health care professionals.  The centers also aim to ensure that each child has a “medical home,” and that partnerships are built between health care 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 health care providers; to expand training and technical assistance to grantees; and to make these valuable services available to additional regions.

Thank you for your consideration of our request to continue funding for this extremely valuable program, thereby helping to ensure optimal health care for our nation’s most vulnerable children.

Sincerely,

American Academy of Pediatrics

American Association of People with Disabilities 

American Network of Community Options and Resources

Amputee Coalition of America

Bazelon Center for Mental Health Law

Brain Injury Association of America

Council of Parent Attorneys & Advocates 

National Association of State Head Injury Administrators

National Down Syndrome Congress

National Respite Coalition

United Spinal Association