The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
800-221-4602
[email protected] 

Other Legislation

In addition to advocating for the Accurate Education for Prenatal Screenings Act, state pro-information bills and the 21st Century Cures Act, NDSS supports the following health-related legislation. 

The Advancing Care for Exceptional (ACE) Kids Act of 2015 

Introduced in January 2015, the Advancing Care for Exceptional (ACE) Kids Act of 2015 (S 298 and HR 546) is bipartisan legislation to improve care for children with medical complexity on Medicaid, while helping to contain costs. It was introduced in the Senate by Senators Charles Grassley (R-IA) and Michael Bennet (D-CO) and in the House by Representatives Joe Barton (R-TX) and Kathy Castor (D-FL).  

The 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.

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.

Congenital Heart Futures Reauthorization Act of 2015

The Congenital Heart Futures Reauthorization Act of 2015 (S 2248/ HR 3952) would direct the CDC to enhance and expand their research and surveillance infrastructure for congenital heart disease, which is a very common health problem in individuals with Down syndrome.

For More Information

For more information, please contact NDSS at [email protected].

Page last updated: September 26, 2016

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