Author: Sherri Harnisch, President, Down Syndrome Alliance of the Midlands
Our daughter, Macy, has been to Capitol Hill six times.
She has played basketball with the House Majority leader. Taught all of our Nebraska members of Congress how to give knucks...specifically, the jellyfish. Last week she, and her big sister, gave speeches to each of our Nebraska representatives. Why do we pull our kiddos out of school and regular activities to gallivant the halls of Congress?
Because there is important work to be done and meaningful stories to be heard...Macy’s included! My daughter Macy, who was born with down syndrome, is now seven. She is beautiful, smart, and so very silly. To Macy, the ABLE Act means less dependence on the government and more dependence on herself. Now that Macy is allowed the opportunity to work, earn, SAVE, and spend her OWN money...just as every other American is able to do, thanks to ABLE.
The recent passage of the ABLE Act is the most significant step to positively impact the disability community in 25 years, since the Americans with Disabilities Act in 1990. Macy and I were in Washington DC in early December 2014 to meet with members of Congress about the ABLE act, urging lawmakers to advance this landmark bill to the floor for a vote. We were at the Capitol, sitting up in the House gallery, witnessing the debates and final votes on rules...and were present when the ABLE Act passed in the House of Representatives. It was truly awesome! The ABLE Act then moved over to the Senate, where it was passed a few days later, sent to the Oval Office at the White House, and President Obama signed the ABLE Act into law of the land on December 19th, 2014.
Recently, ABLE 2.0, a series of ABLE Improvement bills aimed at serving more people, were introduced to the House and the Senate. It's no secret that our society has come a long way...but we still have a long way to go. People with down syndrome are living longer, healthier, more fulfilling lives. This is not the result of a change in this extra chromosome. NO, there was no magical change. This is the direct result of intervention. Both educational and medical.
I have been doing my best to empower and encourage other local families to speak up...make their voices heard, make phone calls, send letters, type emails, and post social media messages to our lawmakers. We all have a voice, every voice matters, and in the case of ABLE, I strongly feel that every voice was heard. Persistence really does payoff.