ACHIEVING a BETTER LIFE EXPERIENCE [ABLE ACT]

The Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S.1872) continues to gain support in both the  U.S. House and Senate. Cosponsors have reached 141 in the House and 16 in the Senate. The ABLE Act still needs more cosponsors, and we need your help!

  

On April 25, NDSS joined forces with many other national disability organizations to host National ABLE Act Call-In Day to build additional support for this important legislation. Thank you to all who called their Senators and Representatives and encouraged them to become cosponsors. For those who haven't yet, it's not too late to take action and reach out! 

Please see the lists below to find out if your elected officials have already signed on.

Click here to view the list of Senate cosponsors.

Click here to view the list of House cosponsors.

Here are three ways that you can make a difference right now:

1) Call and/or write your Senators and Representative using the provided templates and ask them to cosponsor the ABLE Act now. If they are already cosponsors, reach out to thank them!

- Click here to view the call-in template.

- Click here to view the email template.

2) Set up a meeting with your Senator and/or Representative during their state/district work period.

- Click here to view the Senate/House's Congressional calendar so you can find out when your members of Congress are back in your state/district.

- Click here for more information and a letter template to set up a district meeting. (If you cannot copy the template from the PDF, click here to visit the ABLE Act section of our website and click "ABLE Act District Meeting Request Template" for a Word version.)

3) Participate in the ABLE Act Webinar co-hosted by NDSS and Dads Appreciating Down Syndrome (D.A.D.S.) National on May 22 at 7:00 PM ET. 

- Click here to register.

NDSS WEBINAR - "How You Can Help Us Pass the ABLE Act Today."

NDSS WEBINAR MAY 22 @ 7 PM ET

"How You Can Help Us Pass the ABLE Act Today."

In May, NDSS will co-host a webinar with Dads Appreciating Down Syndrome (D.A.D.S.) National titled "How You Can Help Us Pass the ABLE Act Today." The webinar will be on Tuesday, May 22 at 7:00 PM ET. The Achieving a Better Life Experience (ABLE) Act (S. 1872/HR 3423), when passed into law, will provide individuals with Down syndrome and their families the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts and individual retirement accounts.

Speakers will include Steve Beck, NDSS Board Member and VP of the Down Syndrome Association of Northern Virginia; Joe Meares, D.A.D.S. National Chair; Sara Hart Weir, NDSS VP of Advocacy and Affiliate Relations and Darin Yoder, D.A.D.S. National - National Public Policy Advisor. The Down syndrome community has a real chance at getting the ABLE Act signed into law this year but we still need your help! Participate in this webinar and learn how you can do your part to pass this bill today.

Click here to register. 

ABLE ACT

The Achieving a Better Life Experience Act (ABLE) of 2011 was reintroduced in the U.S. Senate and House on November 15.  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.

ACTION REQUIRED:

We need your help! We need you to call your two Senators and Representative. Click here and input your zip code for your Members and ask them to be an original cosponsor of the ABLE Act of 2011.

We've included a call script and all the information you need to make your phone calls.

**Note: Double check to see if your two Senators and Representative signed onto the bill in the last Congress (see below)

Please click here to Take Action Now.

21 ACT PACKAGE

21 Act Package

The 21 Act package was introduced on July 29th, 2011 in the US House of Representatives by Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Chris Van Hollen (D-MD).  The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

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.

The creation of the six Down Syndrome Centers of Excellences would focus on integrating basic and translational research and move findings efficiently toward clinical applications in Down syndrome.  Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions.  Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.

For more information, please contact Sara Weir, Policy Advisor, NDSS at sweir@ndss.org.

History

The Children's Health Act of 2000 (Public Law 106–310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy).  However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade.  The 21 Act Package attempts to 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) and will foster a better understanding of Down syndrome.

Contact your representative here.


Visit the NDSS to read more!

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