Many of us with DMD need greater access to personal finance tools

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy  Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy (DMD), written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.

Personal finance is something that many people in our community overlook for various reasons. It takes a long time to understand things and can be incredibly intimidating. But having that knowledge can change the course of your life.

Even if you live on supplemental security income and don’t plan to work, it’s important to learn about credit, trusts, ABLE accounts, individual retirement accounts (IRAs), brokerage accounts, interest, investing, and taxes. Schools should teach these things to every student so that they’ll be fully prepared for adulthood. DMD parents should be familiar with these things as well, because life is already incredibly tough for families with DMD.

Alan Chaulet, vice president of All Wheels Up, attends a recent public engagement. (Courtesy of Alan Chaulet)

It’s shocking to me that every day, I see disabled people who don’t know about ABLE accounts. Although they’re still relatively new, ABLE accounts enable us to save money and live more independently. They’re even better than 401(k)s and IRAs, because we can withdraw from them at any time. And they’re incredibly easy to open compared with trusts, which are expensive and can be an absolute nightmare. Who wouldn’t want to avoid Social Security and Medicaid assets?

Many big bipartisan changes, such as dramatically increasing the asset limits, are on the verge of becoming a reality, and our advocacy is needed now more than ever. For example, the ABLE Age Adjustment Act, which goes into effect on Jan. 1, 2026, expands the age of eligibility for ABLE accounts to people who have a disability that began before age 46 rather than 26. This will give an estimated 6 million more Americans access to these accounts. It’s so heartening to see many advocacy organizations like the Muscular Dystrophy Association making this such a huge priority. We hope to do the same at the Parent Project Muscular Dystrophy’s Adult Advisory Committee.

Hopefully, legislation that allows us to invest in individual stocks will be introduced and passed one day, because disabled people deserve to be able to invest in more options without losing their benefits. Many of us miss out on so many investing opportunities, including in companies working to treat DMD. We should be able to invest our own money to help us climb out of poverty.

Thinking more about your personal finances will make an enormous difference in your life. The “disability tax” — which means we spend more money to live our lives than able-bodied people do — is a real phenomenon, and squeezing every penny is a constant priority.