ABLE accounts are designed to help disabled people save money for now—and the future.
Update 4/7: A previous version of this story erroneously stated Roy’s mother was born with an anoxic brain injury. It was, in fact, Roy’s aunt.
It seems every month has a cause with it. April is Financial Literacy Month.
For the majority of disabled people, financial anything often is fraught with stress. If one were to bottle ableism’s essence, it may well be society’s rules and regulations surrounding the disability community and money. In a nutshell, the expectation is people with disabilities are destined to live in squalor forever: earning and especially saving any amount of money is perilous due to the risk of becoming disqualified for social services that one would otherwise be fully entitled to receiving. This issue pushes against other common activities that most people take for granted, such as getting married and owning property. It is possible for us to partake in these things, but isn’t without its drawbacks. It’s a “measure a million times and maybe cut once” scenario. As with everything in our lives, consideration is key. At its core, the rules essentially signal society doesn’t believe members of the disability community to be competent and capable contributors to the world.
It’s important to note not all disabled people are destitute. Indeed, there are many disabled people in the world—particularly those who work in Silicon Valley—who make more than a living wage. The point is merely that, by and large, disabled people are decidedly not high earners—if they actually earn anything at all.
The aforementioned tech workers are the proverbial exception to the rule. To help disabled people shed their life of impoverishment stigma, ABLE accounts are designed help those in the community save money for whatever is necessary. ABLE, which is an acronym for Achieving a Better Life Experience, came into existence by the passage of the eponymous Achieving a Better Life Experience Act of 2014. According to the National Resource Center’s website, ABLE accounts recognize the fact “living with a disability is often associated with significant amounts of extra costs” and are meant to act as “tax-advantaged savings accounts that can fund disability expenses.” Beneficiaries can save, depending upon the state, between $235,000 to $550,000—up to $17,000 per year—in an ABLE account, numbers that are exponentially higher than the $2,000 in liquid assets necessary to maintain monthly government benefits such as Social Security. Eligible holders must have become disabled at age 26 or sooner, although recently-passed legislation (going into effect in 2026) raises the eligibility age to 46 to account for people who become disabled later in life. To date, only 137,192 people, with a cumulative $1.25 billion saved, are active ABLE account holders.
(Full disclosure: those figures includes an account held by this reporter.)
One of the first people in the United States to get an ABLE account is Carol Akers. Akers, who lives in Columbus, Ohio, is the primary caretaker for her severely disabled 38-year-old son named Dustin. His father, who’s no longer living, shook him when he was four months old. As a result, Dustin is blind, has cerebral palsy, and is developmentally delayed. He requires assistance in all aspects of day-to-day life. Socioeconomically, Dustin had been on and off Social Security benefits due to his mother’s income, and authorities would regularly tell her she couldn’t keep meaningful savings as they would potentially harm his earnings potential in terms of benefits. This led Akers to worry constantly about leaving a nest egg for Dustin’s care in a future where she may not be around to give him the help he needs.
“I think it lessens the value of people with disabilities,” Akers said of the rigid monetary rules in place for disabled people. “They’re not treated equally for the government or other entities to say, ‘I’m sorry that you’re not allowed to save money.’ If you were without disabilities, you could save all kinds of money: you could invest, you could do so many things. But because you have a disability, we’re going to limit you. I understand that Medicaid pays for Dustin’s waiver and pays his medical [insurance], and that’s wonderful. But in a perfect world, if Dustin was a typical 38-year-old, by now he would have had his college degree, he would be driving car, he would have a family. He wouldn’t need the assistance that I give him physically or financially. It [the government’s rules] bothers me.”
For Mark Raymond, he couldn’t agree more with the frustration over the rules.
“It’s frustrating as an individual with a disability that had to confront all of these rigid laws and rules on how much money I can have or save,” he said in an interview with me last month via videoconference. “I understand their perspective, as they’re trying to prevent fraud and prevent people from abusing the system. But I don’t feel like having such rigid restrictions on people’s financial health is really accomplishing that goal of preventing fraud. That’s a challenge, and I think that’s where we, as disabled community members, have to confront our public officials and elected officials and leaders to [get them to] rethink these restrictions. I will say, I think that ABLE is another tool in the tool chest: it doesn’t solve all the problems. If you need a hammer, it’s not a hammer, but it’s a good screwdriver.”
Raymond, who works with ABLE Today as its national outreach lead and is founder and chief executive of the Split Second Foundation, became disabled on the Fourth of July in 2016 after breaking his neck’s C5 vertebrae in a diving accident, leaving him paralyzed from the waist down. The sudden thrust into the disabled life was a jolting experience for Raymond, not the least of which financially. He was “inundated” with the intricacies of the healthcare system, quickly realizing he’d need to renovate his home so as to be accessible to a newly-minted wheelchair user after his discharge from the hospital. He’d also require mental health support to emotionally navigate his new reality as much as it was pragmatically necessary. It was during this time he became inspired to found his foundation, telling me “going through that situation and feeling isolated [and] feeling denial [over his disability] was what drove me to my passion and purpose.”
Another problem facing Raymond was a technicality. He was 27 when his accident happened. That meant just missing the cutoff for ABLE eligibility.
Undeterred by missing the cut by a trip around the sun, he nonetheless jumped at the opportunity to join ABLE Today’s leadership team after program director Eric Ochmanek extended an offer. Raymond said his mindset was clear: he wanted to help Ochmanek and team “do this work to give the gift of this information [on ABLE] to as many people as we can… to make people aware that this is an option for them,” he said. ABLE Today, Raymond explained, is “basically housed” by the National Association of State Treasurers. The goal of Raymond and company is to “[raise] awareness to support the other ABLE programs nationwide.” 46 of the nation’s 50 states are participants in the ABLE program, including Akers’ home state of Ohio, Raymond’s in Louisiana, and this reporter’s home in California.
A person of particular import to how ABLE efforts are administered and managed is Stacy Garrity, whom Raymond told me is the inaugural chairwoman of the so-called ABLE Savings Plan Network, or ASPN for short. Garrity currently is the state treasurer of Pennsylvania. A 30-year veteran in the Army Reserves with three combat deployments, Garrity has spent the last two years serving the “great people of Pennsylvania,” she said to me in a recent interview via videoconference. The work she does with ASPN is important to her because, she told me, prior to ABLE’s advent “saving money was almost impossible for people with disabilities” and that disabled people shouldn’t lose access to crucial benefits merely because they’re trying to stow away for a rainy day. Pennsylvania has ben part of the ASPN network since 2016, with the first accounts opening the next year. The mission is also deeply personal for Garrity, whose brother-in-law (who lives in another state) has muscular dystrophy and has struggled in his life with savings and benefits.
“The overall goal [of ABLE] is to give people with disabilities the freedom to save, without stressing them out about losing access to benefits they need,” Garrity said of ABLE’s reason for being. “ABLE stands for ‘Achieving a Better Life Experience’ and that’s exactly what the accounts aim to do.”
As a practical matter, ABLE accounts are managed by users via the web. In California, for instance, interested parties and current account holders can log into the official site to learn more about the program and to access their information. People can go online and link bank accounts for adding and withdrawing funds, as well as set up recurring deposits into ABLE. In addition, people can identify beneficiaries and other pertinent details. There are downloadable resources, as well as toll-free telephone support and an email address. In California, CalABLE has social media presences on Facebook, Twitter, LinkedIn, and YouTube.
In terms of what ABLE funds can be used for, the money is meant for any needed expenses. A disabled person—or their legal guardian, like Akers is to Dustin—can use funds towards things like an electric wheelchair, pay for a caregiver or respite care, and more. Money can also be used for devices meant for accessibility, such as communication boards or an iPad or other computer. And of course, the money can just sit and be accumulated over time with an eye towards long-term care.
Joining Akers, Raymond, and Garrity in the cacophony of boos for the current infrastructure around disabled people’s ability to earn and save money is Ms. Wheelchair America, Karen Roy. Roy was 19 years old in 1987 when an armed robber shot her in the back; the injury left her with a T10 complete spinal cord injury as a result. A manual wheelchair user, her path to disability—and to the ABLE program—is a similar one to Raymond’s, insofar as both became disabled later in their lives. It wasn’t Roy’s initial exposure to disability, however. Her aunt developed an anoxic brain injury during birth, as the umbilical cord was wrapped around her neck during the birthing process. In the years since becoming disabled, Roy has dedicated much of her life to advocating for people with disabilities, which she described to me as “making lemonade out of lemons.”
Roy echoed the sentiments shared by Akers, Raymond, and Garrity on how crucial ABLE accounts are for disabled people to just live their lives. To wit, Roy’s experience as a social worker in addition to her status as a disabled person has taught her how expensive things can be for disabled people and their prospective needs. She was gifted an ABLE account with $2,000 in it as a prize for winning Ms. Wheelchair America in 2019, and told me it was a great starting point for her. Moreover, Roy is supportive of the new law that raises the eligibility age for ABLE, but feels the current $100,000 maximum is “pretty low” for many disabled people.
A hundred grand can evaporate quickly depending on expenses, she added.
The common thread running through the conversations I had with the four people for this story is fairness. In their own voices, Akers, Raymond, Garrity, and Roy all expressed the same feeling: it isn’t fair to effectively hold the financial futures of disabled people hostage with the asinine regulations on earnings and savings. To do so, the interviewees told me, dehumanizes the community by robbing them of autonomy and independence. As Raymond told me, ABLE is but one step towards reclaiming that power; it’s but one tool in the toolbox. As ever with those in the tech industry working on accessibility and assistive technologies, there’s lots more work yet to be done. Accessibility is evergreen—the work is never truly finished.
“Clearly the people that wrote these laws don’t have a disability,” Roy said.
As for the future, both short- and long-term, the overarching goal of ABLE is to raise awareness. Similarly to the punitive nature of the existing rules and regulations, Akers, Raymond, Garrity, and Roy were all in agreement that more outreach and publicity is needed to make people—disabled or not—cognizant of ABLE’s existence. Most people don’t even know ABLE is a resource that exists at all. For Raymond’s part, the social workers who spoke with him prior to leaving the hospital had no idea about ABLE. “That [information] wasn’t presented to me from from the social workers or anyone that I was being engaged by in the hospital when I was there,” he said. “It wasn’t available resource.” Raymond went on to say it would’ve given him “a little bit more hope when I was in a very gloomy place trying to figure out how I can navigate my own independence.”
Given social media’s prevalence, awareness campaigns should be relatively trivial to put together and distribute. As well technologically, there’s room for further innovation in interacting with one’s ABLE account through a native app, akin to how you interact with your bank today. One advantage of this approach would be deeper integration with system accessibility software on iOS and Android, not to mention the Mac and Windows if desktop apps are still en vogue with users.
Akers is all aboard the ABLE awareness train going forward.
“I am hopeful that it will expand a lot and that more and more people will understand it and engage in it. I spoke with some parents earlier in the week and they have some misconceptions about it,” she said of the future. “They’re not sold on the idea, because they said, ‘This is just another thing I have to report to the court about.’ Maybe there are rules in their county that are different from mine. But really, I want more parents to be aware there are people with disabilities born every day, people that come into the system, the disability world every day, and they’re not aware of it. They’re not aware that there is a tool there that can benefit them in the long run. I want them to hear about it. I want them to know.”
