The Department of Health and Human Services recently announced $4.9 million in new funding to support families of children with special health care needs.  The funding for the grants was made available through the new health reform law.  Grants were awarded to state Family-to-Family Health Centers. For some of these groups, this is new funding and for others it is ongoing to support the work they do to assist families of children with special health care needs to obtain health care coverage, locate providers, and in general, navigate a complex myriad of systems to meet their children’s needs.  A unique and effective aspect of Family-to-Family organizations is that they are staffed and run by families of children with special health care needs.  If you aren’t familiar with the Family-to-Family organization in your state, you can find it here.

The Family-to-Family organizations are part of a larger national network, Family Voices, who has been active in supporting efforts to improve access to health care services for children with special health care needs.  Along with assisting families to access services for their children, Family-to-Family organizations along with Family Voices, can attest to the vital role that Medicaid plays in the lives of children with special health care needs and their families.  

This is of particular significance now, given the major threats to Medicaid being considered by Congress ranging from elimination of the stability protections (or Maintenance of Effort) to the possibility of caps or block grants, to deep cuts to Medicaid funding.  Close to 30 percent of children with special health care needs rely on Medicaid for some portion of their health care and the impact to these children and their families could be devastating if such measures were enacted by Congress.