Author: Stuart Spielman, Autism Speaks Senior Policy Advisor and Counsel and father to a son with autism
It’s been almost ten years since my son, Izak (Zak for short), had his bar mitzvah. He’s since grown into a tall, slender young man with bright eyes, a sweet disposition, and no shortage of energy. He’s the kid (to me, he’ll always be a kid) whom everyone likes. That hasn’t changed since our family and friends celebrated at the synagogue.
Back in 2007 my wife, Mona, and I gently discouraged those who knew Zak from giving him cash gifts. We instead urged friends and family to give $18 or a multiple of $18 to Autism Speaks (in Hebrew, 18 or “Chai” symbolizes life). Let’s not get into the habit of putting money in Zak’s name, Mona and I thought - too dangerous. Doing so could hurt Zak by disqualifying him from Medicaid and supplemental security income.
That concern struck me as wrong at the time and still strikes me as wrong today. Why should any parent worry about bar mitzvah money or any other gift to a child, especially a child who, like Zak, has a disability? Yet Mona and I have worried that Zak would somehow lose federal benefits because of a well-intentioned misstep. Mona and I are not going to be around forever, and Zak will need lifetime care.
We can stop worrying now, because Congress passed and the President signed the ABLE Act into law. ABLE enables us to put aside money for Zak without fear. Mona and I can save for Zak’s disability-related expenses in much the same way we saved for our other son’s college education. ABLE helps us do more for Zak. That’s the personal side of ABLE for me.
I have another connection to ABLE as well. Beginning in 2005 as a volunteer and later as senior policy advisor and counsel for Autism Speaks, I’ve spoken to members of Congress, congressional staff, and other advocates about allowing families to save for the needs of their children – all of their children, disabled or not. I spoke about Zak at many of those meetings, just as my friend and fellow advocate Steve Beck of the National Down Syndrome Society spoke about his daughter Natalie. It took time, but our champions on Capitol Hill, working closely with the disability community, eventually framed a legislative proposal that succeeded in Congress, garnering 380 cosponsors in the House of Representatives and 78 cosponsors in the Senate. The ABLE Act was an idea whose time had come.
The enactment of the ABLE Act – now officially known as the Stephen Beck, Jr., ABLE Act of 2014, in honor of Steve, who passed away before the ABLE Act was enacted – is a victory for families and individuals with disabilities nationwide. For me, it’s a long overdue present for a young man who came of age some years ago and who continues to grow before my eyes.