On December 19, 2014 the ABLE Act was signed into law by President Obama. ABLE was truly bipartisan, and had overwhelming support from both sides of the aisle in the House and Senate.

Now that it has become the law of the land, what does it mean for individuals with disabilities?


What is the ABLE ACT?

The ABLE Act is a new law that  amends the Internal Revenue Code to allow individuals with disabilities, like Fragile X, and their families to save money in ABLE Accounts.

  • The money saved in an ABLE Account is not taxed.
  • The money is also not counted as an asset when determining eligibility for government supports like Supplemental Security Income (SSI) and Medicaid.

Why is the ABLE Act Important?

  • Currently, all Americans can save for future college expenses or for retirement in tax-advantaged ways through 529 or 401K accounts. While individuals with disabilities can also use such accounts, until the passage of ABLE, such savings were counted as assets and thus they risked the loss of other supports like SSI and Medicaid.
  • Living with a disability can be expensive. Treatments, therapies, transportation and housings are just some of the thing that can be more expensive living with a disability. Saving in an ABLE Account will allow impacted individuals and their families to save for these added expenses without losing other supports and benefits.
  • Individuals living with Fragile X, autism spectrum disorder or nearly any other disabling condition can work and be productive, contributing members of society right alongside their non-disabled peers. However, the $2,000 asset limitation (above which all benefits like SSI would be cutoff) created a dis-incentive to work. Now, with the asset limitation removed, individuals can work as hard as they are able, become at least partially self-sufficient and continue to receive needed support.

What Does It Mean for My Family?

  • Grandparents, parents, other family and friends can leave money through a will or gift money to individuals living with disabilities without concern that it would eliminate their entitlement to benefits like SSI.
  • The mechanism for opening an ABLE Account will be as easy as going to your local neighborhood bank. Any cost associated with opening and maintaining such an account is likely to be minimal and thus ABLE Accounts should be accessible to all.
  • It may no longer be necessary to establish a Special Needs Trust{{1}}. This is a complicated and expensive process that requires a lawyer and may cost as much as $10,000.
  • Individuals living with a disability can actively seek work, contribute to their own support and save for their own future without fear of losing necessary support and services.
  • Individuals living with a disability will be encouraged to become active, productive and participating members of the workforce and of society. This will benefit everyone.

When Does the ABLE Act Go Into Effect?

Upon the President signing the bill, the ABLE Act became law. However, the IRS and Department of Treasury will now begin the process of establishing the rules and regulations for individuals and banks to follow. Banks will then need to implement those rules and regulations.

We are hopeful that by mid-2015 these rules will be in place and you’ll be able to open an ABLE Account.

How Do I Take Advantage of This New Opportunity?

If you already have an attorney that you’ve consulted with regarding future planning, you may want to let them know you’re interested in opening an ABLE Account. If you have a relationship with a banker, let them know you’re interested as well. Ask them to contact you as soon as the bank receives the guidance they need to open ABLE Accounts.

Stay up to date on ABLE by joining the NFXF Advocacy Group on Facebook and make sure you’re on the NFXF mailing list.

What’s Next? The Future of Fragile X and Public Policy

This is a perfect example that bringing about big change can take a long time. In the case of the ABLE Act, advocates have been making the case for its passage for eight years.

This is also a perfect example that your voice matters!

The next NFXF Advocacy Day is just around the corner. If you want to make a real difference for your family and all families impacted by a Fragile X mutation, join your fellow advocates in Washington D.C. on March 4-5, 2015.


Jeffrey CohenJeffrey Cohen
is the NFXF’s director of government affairs and advocacy. He has previously served as a member of the NFXF Board of Directors as well as the interim executive director of the NFXF. Jeffrey has two children living with FXS who are successfully transitioning into independent and productive adults. Jeffrey holds degrees in business administration and law.

[[1]]Consulting with an attorney is still recommended to make sure an ABLE Account will meet all of your needs.[[1]]