Imagine you’re 28 and have suffered a spinal cord injury in a car accident. Or you’re 35, a veteran dealing with the physical toll of fighting for your country. Or you’re 42 and diagnosed with multiple sclerosis.

Now, possibly unable to return to work, your ability to support yourself or save for retirement could be strained. These challenges are particularly great given the many expenses that come with living with a disability.

In 2014, President Barack Obama signed the landmark Achieving a Better Life Experience Act (ABLE). The law allowed people with disabilities and their families to save without running afoul of a $2,000 federal asset limit. They can accumulate up to $100,000 in an ABLE account, contributing up to $20,000 a year, without endangering their Supplemental Security Income or Medicaid.

The accounts, however, were only available to people who became disabled before age 26. The ABLE Age Adjustment Act that took effect this year could help an estimated 6 million Americans who acquired their disability before turning 46. About 250,000 disabled Illinois residents are now eligible for ABLE accounts, allowing them to save and invest to increase independence and improve quality of life.

Earnings and withdrawals are tax-free when used for a broad range of qualified expenses. ABLE accounts also allow family members to transparently support a loved one without creating problems. Before ABLE, a well-intentioned relative might leave money or their home to a person with a disability and accidentally endanger their benefits because of the $2,000 SSI limit. Now, people can simply contribute to a loved one’s ABLE account.

Illinois has 8,500 people with ABLE accounts who have saved $121 million so far. Work by researchers from the University of Chicago and Colgate University documented the value of ABLE accounts but also showed practical challenges that have limited their reach.

Most importantly, we must get the word out. A 2023 survey of people with disabilities and their loved ones indicates that just 7% of respondents were familiar with ABLE accounts.

Another obstacle is the understandable, though misplaced, fear ingrained in the disability community that people will lose their SSI benefits if they accumulate more than $2,000. The University of Chicago and Colgate team also found widespread confusion regarding how people are permitted to spend funds. We must get the word out that these funds can be used for pretty much anything that promotes independence and well-being. Maybe that expense is a front-door ramp. Maybe it’s a bus pass for work. Maybe it’s food and rent, so a young user of a wheelchair can live in their own apartment.

Many Illinois families are desperate to support their loved ones with disabilities. The researchers found that the most widely cited barrier to opening an ABLE account was people’s limited income and resources. People with disabilities and their families from more prosperous backgrounds are much more likely to participate in programs such as ABLE, which easily match the grooves of upper-middle-class life.

Places such as Naperville and the North Shore have the highest rates of ABLE account ownership, while Chicago’s South and West sides have few ABLE accounts despite being home to plenty of SSI recipients who could benefit. These patterns are particularly concerning, as the U. of C.-Colgate survey showed that many Illinois residents in modest circumstances believe they would benefit from ABLE accounts once they learn about them.

We’ve both seen firsthand how ABLE accounts can help. I, Harold Pollack, am a co-guardian of an adult with an intellectual disability helped by an ABLE account. I, Michael Frerichs, have met many families whose anxieties were eased by these accounts, including a mother concerned that her son wouldn’t be able to visit the dentist after she passes away because Medicaid reimbursements were so low the services weren’t provided.

Expanded access is helping Lynn Ludaway of Evanston, who was diagnosed with MS at 36.

“The savings and asset protection benefits are obvious, but the benefits also include growth opportunities and future planning,” she said. “Families of disabled people deserve to be able to save money for expensive treatment, which usually require out-of-pocket expenses.”

There’s more work to do on SSI’s punitive asset cap. There is a reasonable argument for some asset limit to focus public benefits on people who most need them, but $2,000 is ridiculously low. If the SSI asset cap for unmarried persons were merely left at its 1974 level and indexed for inflation, the cap would be more than $10,000 today. The cap prevents people from maintaining reasonable reserves to address life’s routine contingencies and financial emergencies.

The ABLE age increase was long overdue. And Illinois has raised its game by creating a new program to help more people to help themselves and working to improve how it’s done.

If you or a loved one lives with a disability, don’t put off opening an ABLE account. Starting early is an essential way to safeguard a loved one’s future and to make compound interest your friend to meet future needs.

These accounts are there for you. Learn how they can help.

Michael Frerichs is state treasurer for Illinois. Harold Pollack is the Helen Ross distinguished service professor at the Crown Family School of Social Work, Policy, and Practice at the University of Chicago.

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