The Region got some nice positive national attention for a change, when last weekend Lake Central High School graduate Olivia Longo contributed an excellent address to an already impressive commencement ceremony hosted by the school.
Olivia has Down Syndrome, and her inclusive theme of “sharing your table” imparted the message of appreciating all people for who they are. Her confidence and poise in front of thousands of fellow students, faculty and guests left no doubt about the incredible potential of every young person to make our world a better place.
The speech quickly went viral online and I enjoyed seeing people from other parts of the country sharing it with me on social media.
As the Dad of Ethan (or “E” as we call him), a 9-year-old with Down Syndrome, it’s hard to overstate the hope and joy brought by seeing Ms. Longo on the stage in this way. So, to Olivia and her family, thank you and congratulations.
Olivia validates the hope all parents share for their children. Regardless of the difficulties posed by any developmental challenge, the potential of all kids cannot be denied. As E’s Dad I understand his journey is likely to be different from his siblings', but like our other children, his journey will also surely involve discovery, adventure and his own flavor of glorious achievement.
The Dad in me is driven to financially plan for Ethan’s future in much the same way as I prepared for our other kids. But as a financial adviser and from my community work serving individuals with disabilities, I know the process is a bit more complicated.
As an individual with a diagnosed disability Ethan is eligible for public support programs that are likely to be important to his quality of life, health and independence as an adult. While it is a bit counter intuitive, some of these public benefits could be impacted or even eliminated by the financial planning we’ve done and taken for granted for our other children.
Things like saving for college, saving birthday, First Communion and Christmas gifts, and of course gifts or inheritances from grandparents, can all potentially impact his eligibility for public benefits. Eventually, when he gets his first job, saving money from his paychecks could quickly interfere with his benefits as well.
Fortunately, one of the more common sense pieces of legislation related to this issue was passed in 2014, giving us the ABLE account.
ABLE accounts are a version of the 529 plan designed for saving for college. These special accounts allow individuals living with disabilities to save money for college and other expenses in a tax-deferred account as a supplement to private insurance and public benefits. The great and innovative feature of the ABLE program is that the balance held in the ABLE account is not counted in the resource evaluation process for public benefit purposes.
Prior to the ABLE Act, if a person with a disability earned more than $700 per month or had savings or other assets in excess of $2,000 they risked having to forfeit eligibility for public benefit programs. To get around these issues, many families set up what is called a special needs trust, which could be costly and cumbersome. The result of this bad public policy was that there was little incentive for families or individuals to save, and many people with disabilities ended up living below the poverty level.
I’ve been using the Indiana ABLE account program for Ethan for some time now.
While there are things about the program “product” I feel could be improved, overall I’ve been satisfied. Of course there are “technicalities” related to the ABLE account program that need to be understood, but for families of loved ones living with a disability I would encourage looking into this well-conceived financial planning tool.