This guest post is by music producer, songwriter and Autism Speaks Board Member Billy Mann.
Parents of children with autism can be a powerful network. My wife and I have learned over the years that while we can ask doctors, therapists, teachers, administrators, advocates and “experts” for advice, the real insights come from other parents. We have learned, like an underground intelligence agency, how to communicate locally, nationally and globally to share best practice, to whistle blow and to come to one another’s aid. But all this being said, for those of us whose children are low-functioning, whose children will unlikely have a future living independently let alone develop the basic ability to express their emotions in chat rooms or at meetings, we all share one major similar concern: what will happen to our children (adults or any age) after we die? And moreover, in the face of rising costs and the daily pressures that even typical families free of disabilities face, how can we prepare financially, if not emotionally and psychologically for the uncertainties of the future. Finally, after years of lobbying by Autism Speaks and hundreds of other organizations representing the diverse needs of the disabled, we have a start: The ABLE Act.
For parents of typical children, the US tax code provides a superb vehicle for saving for your kids’ future education: the 529 account. Each year you can put away money tax-free for your child’s education so that, when they come of school age, you have prevented a financial crisis. After all, college tuition ain’t cheap and for most of us, myself included, scholarships, grants and loans help but the latter can sometime last a lifetime. The 529 gives parents/guardians a safe haven that can help lighten their future student stars from the sometimes heavy economic weight that goes along with getting their degrees; this is just plain smart. But what happened to us? Families who have children with autism so severe that there are little to no chance of them going to college get left out and the tragic irony is that these families (like mine) are the ones who face the hardest economic burden. For when that average responsible college graduate completes their degree, hopefully they have acquired the skills to navigate their way into the workforce and slowly take on their loans, eventually working through them as they grow intoadulthood. But for my son who will age out of the available programs at—say—19, then what? And worse, until now my family had no tax vehicle to prepare any savings with the same benefit as a typical child. Not only is this discrimination in my view, but moreover (and as I said directly and plainly to Speaker Boehner in his Congressional office), notpassing the ABLE Act would be simply un-American. And thanks to the vision, leadership and indefatigable commitment from US Senator Bob Casey (PA), the incredible hard work of the Autism Speaks advocacy team inspiring our network of families (and so many other organizations around the country), we got it!
We have a lot more work to do. Autism numbers are skyrocketing. No one can deny the increase, even as we wrestle with why and how and the shortfall of treatments and programs. But however fragmented the world can be, families might get, and communities might feel, the ABLE Act was a win. And we have to take the wins when we get them and encourage each other to do more.
It didn’t make me happy that the government and/or tax payers had to take on the financial and living responsibilities of my son or any child with a disability without my family contributing towards it. No parents want that. No parents even want to contemplate such issues surrounding their child. We want dignity for our kids who will sooner than we expect become adults even as so many families often times reluctantly recognize that we are going to need help.
The ABLE Act provides dignity, opportunity and relief to families and individuals facing autism and I exhale a little knowing that even in the most lock-jammed Washington environment of my lifetime, something just and logical can happen.
Now it's time to push our Governors to put logic into action for us all.