The Advancing Care for Exceptional Kids Act (you can find a summary of the act here) was designed to improve care for children in Medicaid who have complex medical needs.  The ACE Kids act has been making some very exciting progress in the past few days, passing through both the House and the Senate as part of the Medicaid Services (H.R. 1839) Act of 2019!

If the ACE Kids act is signed, it will improve Medicaid services for kids with complex medical conditions, such as Kabuki Syndrome.  The act addresses challenges many parents face while trying to coordinate care for this children, and will aim to ease the process of working with multiple clinics, services, and even gaining access to out of state care.  States will now have the ability to create ‘health homes’ specifically designed for medically complex children that will provide coordinated care plans from providers and health teams and increase access to necessary specialty care.

The Roya Kabuki Program thanks the members of the U.S. Senate and House, as well as the co-sponsoring Senators, for their support and dedication to this act.  We are excited about the future positive impacts the ACE Kids act may have for the Kabuki community and are eager to see the final outcome as the bill makes its way to the White House.