If you’re like many families, birthdays and holidays often bring gifts from friends and loved ones far and wide. As my son just celebrated his fourth birthday, he would tear through packages in the hope of finding a new Lego set or Ninja Turtle. He was a bit less interested in the envelopes that accompanied the gifts but patiently waited as Mommy read the cards to him and announced who each gift was from. And the concept of monetary gifts was a bit lost on him. The card containing only a piece of paper meant little to him, but made Mommy’s face light up with gratitude. “A check for your savings account, Honey!” A blank stare came back at me from across a birthday blow horn.
While understandably an abstract concept to a 4 year old boy, a savings account for a child should not be an abstract concept to lawmakers. But it turns out that – in this country – the concepts of having a disability and being able to earn an income and plan for financial security are mutually exclusive. In other words, if my 4 year old son had a disability I would not be able to deposit his birthday checks into a savings account or open a 529 account to save for his educational expenses without the existence of that account risking him to be considered ineligible for much-needed disability benefits.
But this is about so much more than gifts at the holidays. This is about empowering families to be able to plan for their children’s financial futures (disability or not). Within our community, men with Duchenne are outliving their parents – and long before that are aging into adulthood and a time when they should be moving away from home, seeking employment, considering having families of their own. And while there are hundreds of men in our community who are graduating from college and graduate school, the opportunities around employment and independent living become much more limited due to an absence of funding options for resources to support independence such personal care attendant supports, assistive technology, and community mobility.
Somewhere along the line, it was decided that to receive federal and state resources to support your disability, you had to live below the poverty line. Not sure how the math on that worked – not even going to get started on all of the reasons the system is flawed. For now, am going to focus on the first forward-looking solution that our collaborative disability community has found to begin to address the inadequacies. And – today – for the first time in our nation’s history, we are on our way to having a law that acknowledges that people should be able to qualify for disability benefits and have financial independence.
Now, we are one step closer to the reality that families will soon be able to plan for the financial futures of all of their children - those with Duchenne and those without.
An 'ABLE account' could fund a variety of expenses including education costs, personal caregiver support costs, assistive technology, housing, medical and dental care not covered through health insurance, 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.
So, we say “thank you to the House of Representatives” for voting in favor of civil rights for Americans with disabilities today by passing the ABLE Act! The Senate has committed to moving the companion bill (S. 313) during the lame duck session this month. With legendary bipartisan support, the ABLE Act amends Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. This landmark bill aims to ease financial strains faced by people with disabilities by making tax-free savings accounts available to cover expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
While not the answer to all obstacles in our community, this bill is a massive step forward in breaking down barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program. A landmark moment for our community.
The ABLE Act now moves to the Senate and will then be sent to the President to be signed into law. States would have the option to establish an ABLE program, under which eligible individuals with disabilities could start an ABLE account, modeled after current Section 529 savings accounts. Eligible individuals must be severely disabled before turning age 26.
We also take a moment to recognize the many years of hard work, and passion that it took to get us to today. The congressional champions in the House who have led this effort Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris-Rogers (R-WA), and Pete Sessions (R-TX) who were unwavering in their leadership. But also -- a tip of the hat and deep bow of respect to our organizational partner the National Down Syndrome Society (NDSS) for leading the ABLE Act effort and convening the broad coalition of disability community partners that garnered the support of more than 85% of Congress – that’s 450 Members so far! To all of our Duchenne community advocates who reached out to your members over the last 8 years – THANK YOU!
So… stash those holiday checks from “Dear Aunt Millie” away because the ABLE Act has passed the House and is on its way to the Senate!