Author: Leah Janke, Executive Director, Down Syndrome Alliance of the Midlands

When I first found out about the passage of the Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014 (better known as the ABLE Act), I was ecstatic. I was thrilled for the disability world, for the national Down syndrome groups who had become the face of the campaign, and for my son – who could now have a savings account in his name.

Nebraska became one of the first states to offer such a savings plan with the Enable Savings Plan – tax-advantaged savings accounts for individuals with disabilities and their families. The beneficiary of the account is the Account Owner, income earned by the account grows tax-free, and funds may be withdrawn tax-free for qualified expenses. Up to $15,000 can be contributed to the account per year – and even more than that from certain employed Account Owners – and the first $100,000 in an Enable Savings Plan account is disregarded when determining eligibility to receive Supplemental Security Income (SSI).

As Executive Director of the Down Syndrome Alliance of the Midlands, I get to see the behind the scenes of disability savings, independence, and employment struggles. These things hit me hard as an advocate in the disability world and as a parent. I am a mother to three amazing kids – Wyatt (10), Hazel (8), and Clay (7), who has Down syndrome. Yep, 10, 8, 7! This means all three will graduate from high school within four years!

I was shocked to learn that opening a non-Enable savings account or a 529 (college savings plan account) for my child with Down syndrome would risk his qualification for Medicaid and Social Security as an adult. Having more than $2,000 to Clay’s name would disqualify him from receiving assistance as an adult in one of these accounts – which is not the case with an Enable account.

Don’t get me wrong, I would love for Clay to have a full-time job and not need Medicaid or SSI assistance as an adult. Unfortunately, only 44% of adults with intellectual disabilities (ID) aged 21-64 are in the labor force and they are often employed part-time and paid a lower wage than their colleagues without a disability.

I don’t know what the future holds for Clay; will he go to college? Live independently? Get a driver’s license? The Enable Savings Plan gives me peace of mind that we can be financially prepared for what the future holds, and let’s be honest – that is the best we can do at trying to predict the future for any of our children.