To Capitol Hill!
I joined a group of advocates from all over the United States to talk to our senators and representatives about the ABLE Act. The current version of the Achieving a Better Life Experience Act was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses.
I'm terrible about remembering to take pictures, but I visited the offices of Senator John Cornyn, Senator Ted Cruz, and Representatives Stockman, Granger and Hinojosa. I met several other parents from Texas, and had a meeting with David Egan, an amazing self-advocate.
I even got to meet Sara Wolff, the woman with Down syndrome who has collected more than 200,000 signatures on Change.org in favor of the ABLE Act.
It was inspiring to spend a day on the Hill talking to people about the ABLE Act. This article explains the legislation a lot better than I can, but I'll try to share how the ABLE Act will impact our family. As the law now stands, people with disabilities are only allowed to save $2000 before they lose eligibility for needed governmental services, like Medicaid and SSI. As a parent, this means that I can save money for Evan and Corrie under their names (for college, or a car, or whatever) but I can't save any money in Ben's name. He's forced to remain in poverty in order to receive services. Keep in mind, he doesn't receive any of these services now. He's on our private insurance, and we pay a monthly co-pay for Early Intervention.
This was my message to our congressional representatives:
Ben has gifts, strengths, talents and opinions. I have hope and confidence that he will want to participate in our community life - and that he will be a valuable member of our community. Ben has so much to offer, and the ABLE Act will allow our family to save for his future just as we are saving for our other children. We have high expectations for all three of our kids, and I promise that we will do our best to give all three a great start.
Over 400 members of Congress are signed on as co-sponsors of the ABLE Act. If it came to a vote today, it would pass. We just have to get the bill to the floor.
I was astonished by the amount of people wandering the halls of Congress to talk about different causes. There were ladies from the Garden Club discussing environmental issues, young people addressing the need for suicide prevention, and more. I'm grateful to live in the United States and have access to our elected officials. Never in my wildest dreams would I have imagined that I would go to D.C. to advocate for my child and others like him. And yet, here I am.
This boy - and his future - are worth it!