Author: Sherri Harnisch, President, Down Syndrome Alliance of the Midlands

My daughter is brave. I wish I were half as brave as she. I have had friends tell me I'm brave. I don't think so...but I suppose that assumption just goes with the territory of being a special needs momma.

 

The popular saying though, does hold true: "You never know how brave you are, until being brave is the only choice you have.” I found myself in this situation about 71/2 years ago when my daughter Macy was diagnosed with down syndrome. We were quickly informed that this extra chromosome, along with a huge list of high likelihoods for various medical conditions, brings with it intellectual and physical disabilities.

Watching our children resort to a life of poverty is most certainly NOT in line with the dreams ANY parent has for the future of their child. It’s crazy to think that up until just a few years ago...as a result of outdated policy, this was the future that was in store for my daughter. We knew something needed to change. So, we joined the fight.

Something I'm most grateful for, is realizing we have the chance to advocate, not just locally, but nationally, on behalf of legislative issues that impact Macy, and other people living with disabilities. Our family became involved early on with Down Syndrome Alliance of the Midlands, of which I currently serve as President of the Board.

We are so excited and grateful that after several years of fierce advocacy, a vital piece of "life changing" legislation, finally picked up the momentum it deserved, and gained the overwhelming support of 480+ members of Congress, the ABLE (Achieving a Better Life Experience) Act is said to be the most historic piece on bipartisan legislation in our nation's history.  

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. 

The ABLE Act allows Macy, and other individuals with disabilities, the opportunity to open a “529-style" savings account, of which they can tap into for qualified expenses.

Now that Macy has her own Enable account, she will no doubt be a gainfully-employed, contributing member of society. She, just like the next person, deserves to work, earn a fair wage, and have the ability to save and spend her own money, just like anyone else. It's only fair. Resigning to a life of poverty and dependency is not going to be her only option!  

I am especially grateful for our Nebraska Treasurer Don Stenberg and First National Bank of Omaha for working so diligently to make ABLE a reality, and to be among the first in the country to implement our very own Enable Savings Program. 

Macy tells us she wants to be a photographer, a doctor, a dance teacher, a mommy, and an airplane driver when she grows up. The sky’s the limit kid! Get to school. Try your best. And strive to be ANYTHING you want to be. To our family, Macy’s Enable account means so much more than just a savings tool...it's a promise for a brighter tomorrow.