Trisomy 21 Research Centers of Excellence Act of 2011
(HR 2695) and the
Trisomy 21 Research Resource Act of 2011 (HR 2696)
 

The initial bill was introduced by Congresswoman Cathy McMorris Rodgers(R-WA) and Congressmen Pete Sessions (R-TX) in the House and former Senator Sam Brownback (R-KS) and Senator Sherrod Brown (D-OH) in November 2008 during the 111th Congress.

In July 2011, Reps. Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX) and Chris Van Hollen (D-MD) reintroduced the bill as a package of two bills in the 112th Congress. The bills — The Down Syndrome Research Resources Act and the Centers of Excellence in Down Syndrome Translational Research Act — would incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to foster a better understanding of Down syndrome.

The first bill, the Trisomy 21 Research Resource Act of 2011 (HR 2696), will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The second bill, the Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695), will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.

If you haven’t done so already, please respond to the National Down Syndrome Society (NDSS) Action Alert encouraging Members of Congress to sign onto to these important bills. Click here to take action!

Achieving a Better Life Experience Act (ABLE) of 2011
(S. 1872/H.R. 3423)
 

The Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423) was introduced on Nov. 15th in the 112th Congress (2011-2012 Congressional cycle). The bill is being led by a bipartisan, bicameral set of Congressional champions, including Senator Robert Casey, Jr., (D-PA), Senator Richard Burr (R-NC), Congressman Ander Crenshaw (R-FL), Congressman Chris Van Hollen (D-MD), and Congresswoman Cathy McMorris Rodgers (R-WA). 

The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. 

The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.

The ABLE Act currently has 6 cosponsors in the Senate and 40 in the House. If your Member hasn’t signed on, please take a few moments and email your Rep and two Senators by clicking here.