If any of you have ever felt frustrated by the lack of opportunity for people with Down syndrome (and a variety of other disabilities) to save money for their future- this may be your best chance to do something about it. A revised version of the ABLE (Achieving a Better Life Experience) act was introduced into the House by Rep Crenshaw (R-FL) and in the Senate by Senator Casey (D-Pa.) on November 15, 2011. The good news is that it has 7 co-sponsors in the Senate and 60 in the House. The bad news is two – fold, 1) it requires many more co – sponsors to increase its chances of being passed and 2) only one of the co- sponsors is from Illinois – thank you Rep Daniel Lipinski (3rd district).

What is the purpose of the ABLE act?

The goal of the ABLE act is to allow and encourage people with qualifying disabilities and their families to save private funds that can be used to provide an increase in the beneficiary’s quality of life; heath care and independence. This is a significant improvement than what we can do now because this savings account will not interfere with the beneficiary’s ability to receive Medicare and SSI.

The ABLE act is modeled after the 529 college savings plans and will be included as a new subsection of the529 section of the Internal revenue code. In light of this the ABLE act will take on some of the same qualities of a college savings 529. Some of the restrictions and provisions include: there is a $13,000 cap for tax free contributions each year; it will be easy to open and available in each state and roll overs to other 529 accounts are allowed. In addition; if the account reaches $100,000 the SSI benefits will be suspended until the account drops back below $100,000. Even in this case the individual will not lose Medicare and he or she will not need to reapply for SSI when the account balance allows them to receive it again. Also like a college savings plan the will be certain expenses which will be allowed and others that may not be. As always good record keeping will be a good idea.

Updates since the Newsletter

There are now 74 co-sponsors in the House. Rep. Randy Hultgren IL-14 and Rep. Jesse Jackson, IL. -2 joined Rep. Daniel Lipinski IL. -3
Thank you to these Representatives.

There are now 8 co-sponsors in the Senate. None of these are from Illinois.

What can I do?

  • The most important thing to do if you have any questions is to seek out information.
  • If you have any questions about this please go to the NDSS website (www.ndss.org). They have all the information you will need and more to further educate yourself about the ABLE act.
  • Help to get Illinois senators and representative on board. Contact Senators Kirk and Durbin and your district Representative. Let them know that this is important to your family and why it is important. If you happen to live in the 3rd, 14th or 2nd districts please contact your representative to call and thank him for supporting our families.
    If you do not know your representative or contact information for your Senators go to www.votesmart.org (information for all states) or http://www.ilga.gov/ (for Illinois only) –
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