Federal disability insurance is forcing some Vermonters with disabilities to make an impossible choice — between keeping their benefits and working full time. Why aren’t there better options?
That’s what Matthew LeFluer of Alburgh asked Brave Little State, VPR’s people-powered journalism project. Our show answers listener questions about Vermont, our region and its people — because we think our journalism is better when you’re a part of it.
“Why is this the way it is?” LeFluer asked about the federal benefits. “Why is the system not transparent the way it is? And they have the tools and technology to fix it, but why aren’t they fixing it?”
To answer LeFluer’s questions, Brave Little State takes a dive off the edge of a complicated financial cliff.
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Tracy Dorman loved her job. It involved doing medical coding for a local rescue squad in southern Vermont.
“I loved the work — reading the calls, you know, you had to decipher what the proper codes are for the billing and all of that,” she says.
Dorman’s job was only part-time, but she says her work felt important.
“It just gave me purpose. It was fulfilling for me. And that job was really great for me.”
And then one day, her bosses gave her some exciting news.
“They said OK, this job is going to become full-time,” she recalled.
Going full-time. And they wanted Dorman to take the position.
But instead of popping a bottle of champagne to celebrate her promotion, Dorman had to start running some complicated financial calculations.
“And I really had to make that decision,” she says. “Is it possible for me to earn this much money, with my benefits plus my earnings?”
That benefit Dorman’s talking about? It’s from a federal program called Social Security Disability Insurance, or SSDI.
It’s for people who develop a disability that forces them to leave work, which is exactly what happened to Dorman about 20 years ago. She’s been an amputee since she was 11 years old. But she says it didn’t really interfere with her day-to-day until later on in life, when her physical condition became more painful.
So, Dorman went on SSDI. But, like a lot of people who enroll in that program, Dorman’s condition improved —enough that she felt like she could reenter the workforce.
Which is how she ended up at the rescue squad, and how she got that full-time job offer. And Dorman really wants to be able to accept the position.
There’s a catch, though: if she goes full-time with the rescue squad, she’s going to make too much money to qualify for her disability benefits. At the same time the extra income from those extra hours is less than the value of the benefits she’ll lose if she goes off SSDI.
And so Dorman has to decide: Can she afford the financial hit she’s going to take if she accepts this full-time position?
“And they gave me three months advance notice. And when it came to the time, they said, ‘OK, it’s time, we need this to go full-time.’ I said, ‘I can’t do that. I just can’t do it,’” she recalls. “And they said, ‘OK, your job ends March, April 5.’ And that was really hard for me. Because I really want to work as long as I possibly could.”
This dilemma Dorman faced has a name. It’s called the “benefits cliff.”
A voicemail that our question-asker, Matthew LeFluer, left on the BLS hotline led us to the edge of this benefits cliff. It’s a place where Vermonters who rely on disability benefits face an impossible choice: Do I work more and lose these benefits? Or do I not work as much and maintain these benefits?”
One in seven Vermonters lives with a disability. And if you’re not one of them, and think this doesn’t affect you, there’s a good chance you’re wrong.
Because according to federal statistics, more than one in four of today’s 20-year-olds will be out of work for at least a year during their working life, due to a disabling condition.
But if you come to rely on certain benefits, like SSDI, they can kind of...trap you.
Meet Matthew
Matthew LeFluer moved to Alburgh, Vermont from Council Bluffs, Iowa when he was 5. So most of his memories are from his time here in Vermont.
LeFluer works with kids and serves on a local town committee in Alburgh. And in March, he ran for school board and select board. Civic engagement comes naturally for him.
“For me, it’s something I want to do for my community. I understand what other people are feeling,” he says.
And he says he understands what people are feeling because he’s had a unique life experience himself. LeFluer has some disabilities, including autism and dyslexia. So he says he knows how to face challenges, and can help other people tackle theirs.
And one of the challenges LeFluer’s trying to overcome is the reason he called Brave Little State’s hotline, where you can leave a message with your question. (You can call: 802-552-4880).
Just like Tracy Dorman, Matthew has come up against the benefits cliff.
“Basically, the state says pretty much if you take a full-time job, any full-time job, you lose your health insurance and your benefits, plain and simple. … So that's not much of a career for people with disabilities in Vermont to ... have a career or a life that they want,” he said in his voicemail to us.
“I’m like everybody else,” he says. “I pay rent, heating bills, phone. So right now the things that you would lose if you got a full-time job. The important things are the $900 a month and the health care benefits.”
“For me, it’s just, if I didn’t have that barrier, you know, I wouldn’t have to worry about my professional career,” he adds. “ I would like to fulfill that dream going forward, and helping not only serve my town and my community, but serve a state in a way that, you know what, this person who has this disability is actually serving for the people of Vermont.”
So what professional opportunities would Matthew try to pursue if he didn’t have to worry about the benefits cliff?
“Oh, working with children,” he says. “I have that—it’s the younger generation, it’s the children… The children have been a big deal for me, because most people don’t think of it as the way I do. But if you talk to them and you listen to them, they can teach you. Children can teach you, believe me.”
Matthew helped shape the reporting for this story, and even joined some of our interviews. We’ll meet up with him later, and we’ll also meet some more Vermonters who live at the edge of this cliff we’re learning about. But first...
SSDI and SSI: The context
This benefits cliff seems like such an obvious flaw in the system. So why does it exist in the first place? And, why hasn’t anyone done anything about it?
James Smith, who works at the Division of Vocational Rehabilitation — part of the Vermont Agency of Human Services — says it's been studied ... a lot.
“It’s sort of a classic situation, where there’s a policy decision to be made, but each time Congress has sort of said, ‘Well, let’s study it more,’” Smith says. “Because, if you tweak anything with Social Security, because it’s so huge, there’s always a billion-dollar potential [cost increase] with any change in any kind of rule or policy.”
For the last 30 years, a big part of Smith’s job has been helping people safely rappel down the benefits cliff. But he says it’s not always possible.
And to understand why, you need to understand a little more about the federal programs at play here.
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First, you have the Social Security Disability Insurance program we’ve been talking about (SSDI). It’s been around since 1956. If you’re working right now, you actually pay into this program. You’ve probably seen the deduction on your paycheck, for Social Security.
SSDI is there to help you if you ever develop a disability that prevents you from working.
Then, there’s another program, called Supplemental Security Income (SSI). That program was created in 1972. And it provides benefits to people with disabilities who have never been able to work, and haven’t been paying into SSDI.
Lots of acronyms — but even if you can’t keep track of which is which, Smith says there’s a structural flaw to both of them:
“Both programs are based on what I would consider an outdated notion, that you’re either completely disabled or you’re not. But we know that disability is far more fluid than that.”
Which means the programs don’t do a very good job of acknowledging the earning power of people with disabilities. And creates incredibly punitive consequences for people who do want to work.
So that’s where the benefits cliff comes from. Why hasn’t anyone done anything about it? Smith says a lot of smart people have been trying for a very long time.
For this, we go back to 1999:
“It really started with the 1999 Ticket to Work and Work Incentives Improvement Act, which was actually sponsored by [Vermont] Sen. [Jim] Jeffords at the time,” Smith says.
Jeffords teamed up with Massachusetts Sen. Ted Kennedy to update the Social Security program, and basically get rid of some of the barriers we’ve been talking about.
“And at the time, we recognized that the cash cliff was a problem, and we really hoped that legislation would provide an alternative," Smith says. "That didn’t happen.”
Didn’t happen, because instead of fixing the benefits cliff, that bill we talked about decided instead to... wait for it... study how to fix the benefits cliff.
“And it is not an exaggeration to say they have done three separate tests, the third of which is still just finishing up this year, over a 20-year period,” he says.
But here’s the thing: Smith says these tests the feds are running, where they look at what happens if they get rid of this cliff, all run into the same problem.
“The actuaries, the Social Security actuaries, the folks who predict how much things are going to cost, have suggested that if we do that, it’ll make the program too attractive, and so people who have severe disabilities may be induced to then apply for Social Security Disability, to then take advantage of this work incentive,” he says.
In short, they’re worried about people gaming the system. Maybe you’ve heard this critique, or fear: That if benefits are too generous, people will try to exploit them. James Smith says that simply doesn’t add up.
"It doesn’t pass the straight-face test,” he says.
Because in order for people to pull that off, here’s the series of hoops they’d have to jump through:
- Quit the job they have now
- Stop working for at least a year
- Go through a rigorous eligibility process that denies half the people who apply
And then, if they succeed in getting the Social Security benefit, they’d have to find another job.
Instead of calculating the potential costs of fraud or abuse, some Vermonters wish the experts would focus on something else: the toll the benefits cliff is taking on our economy.
Meet Nate
Nate Besio lives in Colchester with his wife and their 6-month-old baby, named Reece.
Besio uses a wheelchair. He’s lived with disabilities since he was paralyzed in a diving accident when he was a teenager. But he didn’t encounter the benefits cliff until well into adulthood.
He’d gone to college, then gotten a master’s in business. And landed a good-paying, full-time job at the University of Vermont, as a business manager.
“Then in 2010, I had some injuries," Besio says. "I had got some pressure sores, which caused me to have to leave work."
It was a serious medical situation. And because he couldn’t work, Besio had to go on Social Security Disability Insurance, SSDI, to pay the bills. He says it took him a couple years to recover, but once he did, he wanted to go back work full-time, as he had before.
“But what I found out was, that if I worked full-time, and if I earned a certain amount of money, it would push me off my benefits,” he says.
For Besio, it wasn’t just money he’d lose if he got a full-time job. At this point, he also relied on Medicaid benefits for major costs related to his ongoing medical care. He’d lose a big portion of those benefits, too.
“I would have to pay a patient share to Medicaid to keep my benefits," he adds. "That was basically what I was earning while I work, so basically, I would be volunteering.”
So for the past seven years, this guy with a master’s degree in business has been working part-time.
“Not because I don’t think I can’t work more than that, not because I don’t want to work more than that, but if I do work more than that, it’s going to push me off this benefits cliff,” he says. “In a way, I’m kind of stuck. Do I work more and lose these benefits? Or do I not work as much and maintain these benefits? But because working full-time would cause all these other problems, I can’t do it.”
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Over the course of reporting this story, I’ve come to think of the benefits cliff as an actual geological feature. A place where people like Nate Besio, and Matthew LeFluer, and Tracy Dorman wheel or walk to. Where they peer off the edge, and try to judge the distance, and calculate how bad their injuries are going to be if they make the leap.
And that precipice is a disturbingly crowded place.
According to a report published last year by the Vermont Center for Independent Living, there are 94,000 Vermonters who live with a disability. That’s one in seven of us.
Of those 94,000 Vermonters with a disability, about half are of working age. But of those 43,000 or so working-age Vermonters with a disability, fewer than half are actually working.
James Smith, at the Division of Vocational Rehabilitation, says the benefits cliff isn’t entirely responsible for that shortfall. But he says the cliff is definitely preventing the state from tapping the full value of that workforce — preventing people with disabilities from pursuing their ambitions:
“It’s just the kind of foolishness of a program structure that is basically designed to make it very, very difficult for people on SSDI to exit the rolls.”
Smith says there’s a number that makes this clear: One-half of 1% of people on SSDI leave the program each year because they’ve decided to work full-time. Just 3% of SSDI beneficiaries leave the program over their lifetimes because of work.
“So pretty much, most people when they go into the program, never come out because of work,” Smith says. “And that to me is slam-dunk evidence that the program’s not designed correctly, and that there has to be a better way.”
"A continued narrative"
Our question-asker Matthew LeFluer suggested we interview Kiah Morris for this episode. Morris is a former state representative who now works as director of movement politics at an organization called Rights and Democracy.
At Rights and Democracy, Morris recruits non-traditional candidates for local and statewide offices, and then helps them with their campaigns.
“The work that we’re really trying to do has always been centered on the spirit of collective liberation, and moving folks that are from the margins of the centers and seats of power into those spaces and places of decision-making power,” Morris says.
We should disclose here that Rights and Democracy endorsed LeFluer’s run for school board earlier this year. LeFluer had to fill out a long questionnaire to earn that endorsement. Today though, LeFluer’s asking the questions.
“The system itself is so not current or up to date. Why is this the way it is?" he says in a Zoom interview with Morris. "Why is the system not transparent the way it is? And they have the tools and technology to fix it, but why aren’t they fixing it?”
“I appreciate that so much," Morris says. "And this is so key — what you were asking before is what does transparency mean, when we’re talking about policies that are actually supposed to lift people out of poverty, give people a dignified way of living. As a nation, we have much reckoning to do around that.”
Morris adds the benefits cliff is the product of a much deeper problem in Vermont and the country. It’s a structural and systemic problem that has devalued people with disabilities.
Last month, for example, the Vermont House of Representatives passed a resolution apologizing for the state’s role in the eugenics movement. Less than 100 years ago, lawmakers in Vermont passed a law that effectively sanctioned the forced sterilization of hundreds of Vermonters.
People with disabilities were disproportionately targeted by that sterilization program.
“We have as a culture, as a nation, determined that if there are individuals who are not wanted, that they literally do not deserve a life to live,” Morris says. “They should not have an opportunity to reproduce, and that their visibility essentially needs to be reversed.”
And Morris notes there is an undeniable connection between the historically inhumane treatment of people with disabilities, and the systems we purportedly use to help them today.
“There are so many ways and spaces within the policy that we do not support our disability community, and we enable for a continued narrative that there aren’t that many people that are affected, and that their needs are not salient,” she says.
And LeFluer says he’s begun to realize that this fight against the benefits cliff is about more than the benefits cliff.
“It leads into something much bigger than that — it’s basically the system itself. And for me, that’s in that system, there’s no way out. For me, I look at the system as, is there a way I can really make a difference here?” he says. “I don’t like fighting, but I have to because it ain’t just my rights that I’m fighting for, it’s everybody’s rights that I’m fighting for. The children’s rights with disabilities I’m fighting for. The seniors, the veterans.”
A solvable problem?
James Smith says there’s some solid evidence emerging that the benefits cliff at least is a solvable problem.
In 2005, the Social Security Administration agreed to let Vermont do a controlled study. They took 600 SSDI beneficiaries and put half of them in a group with standard rules, and half in a group that had a graduated earnings offset.
Based on that study, which was later replicated in Utah and Connecticut, when people can work more without losing benefits, they do. Beneficiaries with the earnings offset took in significantly more income than the people who didn’t get it.
“We were able to show that people earn more when they were in the alternative rules,” Smith says.
Another pilot project is in the works right now. Thanks to some funding from a private foundation, Vermont is testing a concept that replaces lost SSDI benefits with cash.
Smith says solving this problem once and for all is going to take statutory change at the federal level. But in the meantime, he says this pilot program may offer a way to provide some relief:
“We could create our own on-off ramp for folks instead of waiting for federal legislation that may never happen.”
And Smith argues there’s real urgency to doing something sooner than later. Because right now, he says, there’s just so much value the state is missing out on.
“The economic costs are that you have a lot of people who are not in the workforce, or are participating at a level that is below their capacity, which is just bad for Vermont and bad for the economy," Smith says.
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That’s something I heard from Tracy Dorman, too. She’s the woman we met at the beginning of the story, who had to quit when she got promoted to full-time.
“And if they could just comprehend that [workers with disabilities] become taxpayers,” she says. “They’re paying into the system. They’re being productive citizens of their community. They’re participating in life. And the state of Vermont is missing out on a lot of talent, a lot of educated professional people.”
I checked back with Matthew LeFluer a few days after we finished most of our reporting — to hear his reflections, and get his guidance on what this episode should sound like. What he wanted people to take away.
And he tells me there’s something Kiah Morris said that’s he’s had stuck in his head:
“It’s what she said about, with the system, are we truly free, pretty much. And that resonated with me in many ways,” he says. “We’re not truly free until we get a handle on these situations … try to remove some of these barriers for people with disabilities and others to be able to live our lives out in a meaningful way.”
And here’s another takeaway LeFluer has — something he’s taking with him as he continues his own push to reform the benefits cliff:
“Speak up. Speak up, tell your story. Tell the true fact story of your life, because the more information the person gets about you, the more in tune they’re going to be with their feelings about how to address it in a way that’s meaningful.”
And, once they’re in tune, LeFluer hopes they’ll get involved. Because if it’s not already clear, this isn’t just about how much money a person with disabilities can make.
“For me, it’s not all about the money at the end, you know?” he says. “It’s about doing what is right and what is just, and what do you want to do with your life? And how do you want to let others perceive you as?”
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Special thanks to Sarah Launderville, Executive Director of the Vermont Center for Independent Living, and to Matthew LeFluer for the great question. If you want to call our BLS hotline, our number is 802-552-4880.
Our website is bravelittlestate.org. That’s where you can sign up for the BLS newsletter, and vote on the question you want us to tackle next. We are on Twitter and Instagram at @bravestatevt.
This episode was reported by Peter Hirschfeld, with help from Angela Evancie. Mix and sound design by Josh Crane. Digital production by Myra Flynn and Elodie Reed. The Brave Little State team is Myra Flynn, Josh Crane, Elodie Reed, Lynne McCrea and Angela Evancie.
Ty Gibbons composed our theme music; other music by Blue Dot Sessions.
Brave Little State is a production of Vermont Public Radio. We have support from VPR sustaining members — you can become one of those at bravelittlestate.org/donate.Or just tell your friends about the show.
We’ll back soon with more people-powered storytelling. Until then, remember: Be brave. Ask questions.
