The ACC on Aug. 25 sent a letter of support for H.R. 4930, the Advancing Care for Exceptional (ACE) Kids Act of 2014 which would create nationally designated networks of physicians, children’s hospitals and other providers to care for children with medical complexity under a Medicaid Children's Care Coordination program. This legislation, which was introduced by Reps. Joe Barton (R-6-TX) and Kathy Castor (D-14-FL), would facilitate more seamless care for Medicaid children who see multiple providers across state lines. Co-sponsors are being sought for the bill and ACC has developed a model grassroots letter that members can use to ask their House Representatives to co-sponsor the bill. Send a letter to your member of Congress.

In addition to establishing a network, the ACE Kids Act would also enable the gathering of national level data on complex conditions to determine best practices and drive continued improvement in care. In its letter of support, the ACC noted that congenital heart defects (CHDs) affect nearly 1 percent of – or about 40,000 – births per year in the U.S. The ACE Kids Act of 2014 would address a critical issue, as there are more than two million children with exceptional health care needs enrolled in Medicaid. While that number represents only about 6 percent of all pediatric Medicaid enrollees, these patients account for roughly 40 percent of Medicaid spending on children. Please contact your representative and urge him/her to cosponsor this legislation.

A Senate version of the bill is being crafted but has not yet been introduced. The program, if passed by Congress and signed by the president, would be voluntary with state Medicaid agencies and providers "opting in" to reduce costs and paperwork burdens.

Keywords: Hospitals, Pediatric, Heart Defects, Congenital, Pediatrics, Medicaid, Health Services Needs and Demand, Cost of Illness, Child Care

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