30/10 - Milestone Birthdays for My Son and the ABLE Act

Birthdays and anniversaries are special moments.  A few months ago, I celebrated the thirtieth birthday of my autistic son Zak, and soon I will be celebrating the tenth anniversary of the ABLE Act.  These two milestones share a connection for my family. 

When my wife and I gathered with family and friends to mark Zak’s transition to adult life, there was the usual birthday pleasure of a shared meal filled with reminiscences.  During dinner I recited the lyrics of “Forever Young,” Rod Stewart’s love song for his children.

“In my heart you’ll always stay forever young” 

I also recited the words of a ditty more meaningful to Zak, “I Love You,” the Barney the Dinosaur song.  As Zak enters the fourth decade of his life, Barney remains a favorite.

Although some things remain the same for Zak, much has changed over his lifetime.  I recall an earlier birthday attended by one of Zak’s relatives, a Holocaust survivor who delighted in giving children crisp new bills to mark their special day.  Of course I appreciated his generosity, but at the same time, I worried about getting into the habit of putting money aside for Zak.  Excess assets might mean that Zak would not qualify for programs like Medicaid and Supplemental Security Income (SSI).  His younger, non-autistic brother could save for the future, but for Zak that could have disastrous consequences.

I was hardly alone in facing this inequity.  Families besides mine in the autism community and in the broader disability community shared the same fear and the same frustration over being able to save for one child but not another with possibly greater needs. This tie led Autism Speaks to partner with the National Down Syndrome Society and other disability groups in advocating for a new type of savings account, something like the popular college savings accounts but meeting the broader life needs of individuals with disabilities.

Like most start-ups, this venture took time to deliver results. There were years of meetings and countless drafts, new ideas, revised ideas, stagnation, and progress.  All the while, the bonds, personal and professional, among advocates and champions on Capitol Hill stregthened.  The visionary Stephen Beck, the father of a child with Down Syndrome, led with his passion for fairness and desire for a world where both his daughters would have similar opportunities for happiness and prosperity.

In 2014, what became known as the ABLE (for “Achieving a Better Life Experience”) Act passed Congress by overwhelming margins and was signed into law.  The law allowed states to create special savings accounts for disability-related expenses that would not jeopardize eligibility for means-tested benefit programs (like SSI and Medicaid, among others).  To date, 46 states have created ABLE programs, and individuals in all 50 states have the ability to open an account.  According to ISS Market Intelligence, as of September 30, there were 187,210 ABLE accounts nationwide with $2.189 billion in assets under management.  For more information on ABLE accounts, please go to ABLE today.

The 10th ABLE anniversary celebration will be held at the Capitol on December 4, 2024.

I’ll catch up with old friends and discuss new ideas to strengthen the ABLE program.  Just as for my son Zak, an ABLE account holder, for the ABLE program the best is yet to come.