In addition to advocating for the Accurate Education for Prenatal Screenings Act and state pro-information bills, NDSS supports the following health-related legislation.

Congenital Heart Futures Reauthorization Act of 2017

The Congenital Heart Futures Reauthorization Act of 2017 (HR 1222 / S 477) would expand research on treatments for congenital heart defects and encourage lifelong, specialized care for patients. For details, see NDSS One-Pager on the Congenital Heart Futures Reauthorization.

This legislation was signed into law on 12/21/2018 and became Public Law No: 115-342. Thank you to all of our incredible advocates who made this possible! 

The Advancing Care for Exceptional (ACE) Kids Act (H.R. 1226/ S. 317)

The Advancing Care for Exceptional (ACE) Kids Act seeks to address obstacles to the coordination of care in state-based Medicaid programs for children, such as those with Down syndrome, with complex medical conditions who see many different specialists and may require care that takes them across state lines. It would drive the formation of tailored, intensive, pediatric-focused networks of providers to ensure children with medical complexity receive the best care possible while reducing unnecessary costs in the Medicaid program.

This legislation was introduced but failed to pass during the 114th Congress (see S 298 and HR 546).

In the 115th Congress, this legislation passed in the House 400-11  but died in committee in the Senate.

Click here to see NDSS’ letter of support for the ACE Kids Act that was sent to the original Congressional sponsors on December 3, 2015.

In the 116th Congress, ACE Kids Act was included in the Medicaid Services Investment and Accountability Act of 2019, which was signed by the President on April 18, 2019, and became Public Law No: 116-16.

Thank you to everyone who took action on this important issue for children with Down syndrome and other disabilities!