Tabi Haly defies expectations. She's a woman with a progressive muscular illness; she can't move her body and she needs round-the-clock care from aides. She wasn't expected to go to college, or to get a job — much less become a vice president at the banking giant JPMorgan Chase.
Even staying alive and healthy defied expectations. "People with spinal muscular atrophy like myself, living to my age already is a huge win," says Haly, who is 40.
Haly's success as a software engineer in New York City was made possible by a government program called Supplemental Security Income, or SSI. It gives Haly access to crucial medical coverage.
But now that same program is threatening to bring her success crashing down.
In July, Haly got a letter that shocked her. The Social Security Administration, the agency that runs the federal benefits program, wrote that she was not eligible for SSI, even though she'd relied upon SSI for almost 19 years.
By losing SSI, she would also lose Medicaid, her health insurance. Medicaid provides medical care — from round-the-clock personal care aides to an expensive medicine — that keeps her healthy and allows her to build a career.
"It's like my foundation's falling apart," says Haly. She appealed the decision to end her SSI. But she worries that without it, the career she's achieved will end. Even with a high-paying job, she says she can't pay for 24-hour aides and other high-cost medical care on her own.
She faces a big fall — from a successful career to needing full-time care from family or, more likely she fears, moving into a nursing home.
SSI exists to provide a minimum income, and often health insurance, to people with significant disabilities. But an NPR investigation found that SSI often fails people with disabilities because its rules are long out of date and overly complex.
As a result, recipients like Haly run into decisions that seem bureaucratic and inconsistent but that threaten their ability to stay out of poverty, live independently and keep access to medical care.
Debora Wagner at Cornell University's Yang-Tan Institute on Employment and Disability says Haly's frustration is not uncommon and shows the need to modernize SSI. "My question is 'Who benefits in this situation? What's the benefit for us as a society of making it impossible for people with disabilities to work?'"
Even her co-workers don't know
Haly is a software engineer and a team leader on development and coding projects for JPMorgan Chase & Co..
On an early morning this summer at her apartment in Manhattan, Haly, in her motorized wheelchair, prepared to lead back-to-back meetings on a new software project. Her personal care aide, Palone Ruddock, spent about 10 minutes getting Haly positioned in front of her computer.
Haly can't move her body. She needs an aide to help her move her arms and legs.
But with Haly's fingers placed on a large trackpad, she can control the computer and run her meeting.
Some of her work colleagues on the call know she's disabled. None, she says, have any idea of how disabled she is. Nor did any of the outside consultants this day at a second meeting, where she presented the coding project.
Haly needs assistance from personal care aides 24 hours a day. "That's who gets me into my wheelchair," she says. "They're my hands and feet."
Those aides move her body several times an hour so she doesn't get painful bedsores. They suction the secretions out of her weakened lungs to keep her healthy.
Haly says those aides, seven days a week, cost about $300,000 a year.
Only Medicaid, the state and federal insurance for people with limited income that Haly gets through SSI, will pay for them.
Her company's health insurance wouldn't. The insurance that people get through their jobs doesn't cover long-term, in-home aides. Nor does Medicare, the government insurance for older people and some younger people with disabilities.
As a vice president at JPMorgan Chase, Haly makes a good salary. But even with a six-figure paycheck, she says she can't afford the health care that she needs.
In addition to the aides, Haly ticks off a list of her other medical expenses. Medicaid pays for a new, breakthrough medication for spinal muscular atrophy. She says that medicine alone, which she must keep cooled in the refrigerator, costs about $350,000 a year.
If she went on her employer's health insurance, a company spokesperson says it might pay for some or all of the medicine.
But there are other big expenses an employer's health insurance won't pay at all, like Haly's customized power wheelchair. At $35,000, it's as expensive as a small car.
In addition, Medicaid pays for wheelchair repairs and tens of thousands of dollars a year in physical, occupational and speech therapy.
"I would have to be a multimillionaire to pay for all this stuff myself," Haly says.
Ari Ne'eman, an assistant professor at the T.H. Chan School of Public Health at Harvard who researches disability income programs, says: "If you lose access to SSI, you lose access to the Medicaid services that keep you alive and thriving in the community. It's a question of life and death."
People with significant disabilities weren't expected to work
SSI was created in 1972 to provide monthly benefit checks for millions of impoverished disabled and elderly Americans. In 2024, the monthly benefit is capped at $943 for one person and $1,415 for a couple. In addition, most who are eligible for SSI then qualify for health insurance through state Medicaid programs.
Today, SSI is a key benefit to 7.5 million people.
But SSI was created before the Americans with Disabilities Act of 1990 protected people with disabilities from discrimination in public places and at work. It was created before the 1975 law — the Individuals with Disabilities Education Act — that, for the first time, gave a right to a public school education for children with disabilities. Before then, some 1 million children with disabilities, the last group to get the right to schooling guaranteed, were excluded from many schools.
As the experiences and expectations for disabled Americans changed, SSI failed to keep up.
SSI was started with the assumption that recipients couldn't or wouldn't work in jobs where they could support themselves.
As a result, its out-of-date rules discourage work. Today, fewer than 10% of people on SSI do work, although many say they'd like to work and many would like to make enough to get off SSI.
Very few, like Haly, manage to build a career.
The rules make it hard to take even a part-time job. One rule says you can own only $2,000 in assets — like bank savings or property. That limit hasn't changed since 1989.
For a couple, the asset limit is $3,000, creating a "marriage penalty" that forces many on SSI to avoid marriage or to try to hide it when they marry.
As a result of the cap on accruing assets, Haly, for example, is unable to contribute part of her salary or take her employer's match in the company 401(k) plan. Those retirement plans, which are now used by 70 million Americans, didn't exist when SSI and the asset limit were first created.
Over the years, Social Security and the Internal Revenue Service have set up programs where people on SSI can shield part of their income from the asset limit. But these programs — ABLE accounts, Ticket to Work, PASS accounts — are often complicated to set up and limited in their scope. The result: Only a tiny fraction of people on SSI use them.
In recent months, the Social Security Administration has simplified some rules about counting income, like excluding the government assistance someone on SSI receives for food and rent. But Social Security Commissioner Martin O'Malley noted to NPR that only Congress can make the most significant reform to SSI.
There's a fix to the asset limit that's been proposed, but stalled, on Capitol Hill. The SSI Savings Penalty Elimination Act would raise the asset limit to $10,000 for an individual and $20,000 for a couple, in line with what the thresholds would be if they had kept up with inflation.
The bill has bipartisan co-sponsors in Congress and has been endorsed by business leaders, including Jamie Dimon, chairman and CEO of JPMorgan Chase. But the bill wouldn't address other outdated SSI rules.
One rule says that someone on SSI can't earn more than $65 a month. After that, a recipient loses $1 of benefits for every $2 they earn — in effect, a tax of 50%.
"That's a higher tax rate than anyone faces on their federal income tax," says Ne'eman of Harvard. "But when it comes to the most impoverished disabled Americans, that is the level of taxation functionally that people are facing when they try and enter the workforce."
That $65 limit is the same as it was first set in 1972.
When Microsoft in 2020 decided to raise the minimum wage for its lowest paid employees to $25 an hour, the company was surprised to find that disabled workers — largely ones with intellectual disabilities working in the cafeteria, as administrative assistants and other low-level jobs — suddenly faced losing their SSI benefits.
Microsoft hired private benefit managers to advise every employee on SSI, according to Rylin Rogers, the company's disability policy director.
Many of those workers thought they'd need to "step away from those jobs, good jobs that they had had for a very long time, which would have been a shame," says Dan Rutten with the Washington Initiative for Supported Employment, the nonprofit benefits advisory firm that was called in to help. Most of those disabled employees, guided by the advisers, found waiver programs or cut their work hours to balance their salary increases with SSI's rules.
Fifty years ago, when SSI started, making $65 a month got a person close to the poverty limit. "It was already inadequate in 1972, but it wasn't laughable," says Ne'eman. "Today we have a situation where the income offset really is frankly insulting."
People on SSI who "are having the greatest success working" are the ones who run into the most problems with SSI's rules, says Jack Smalligan, who studies income benefits for the Urban Institute. "So the message to beneficiaries is, essentially, that working doesn't pay."
A catch-22
Haly makes too much to take a monthly SSI benefit check. She's one of a tiny number of beneficiaries who need to qualify solely to keep her Medicaid.
But this summer, Haly learned that she was about to lose that health insurance.
At first, Haly thought it was a simple clerical error.
Every year, she gets recertified for Medicaid. Haly says a caseworker for New York state comes to her home and asks a series of questions to determine that she is still disabled. Haly considers the process "intrusive," given that she has a progressive neuromuscular condition that is incurable.
Usually, the process is automatic. But this spring, when the notice of her coverage renewal arrived, the line that she expected to say that her insurance would last until 2025 said 2024 instead.
The state of New York wasn't extending her Medicaid coverage, even though Haly was currently on SSI, which qualified her for that health insurance.
(A spokesperson for New York's Medicaid agency said rules around confidentiality limited its ability to discuss Haly's case. A spokesperson for Social Security noted confidentiality rules, too.)
Haly went to the Social Security office to straighten it out.
"They had no idea what I was talking about," she says. "Zero."
She says they offered to help her stop working and sign up for a separate benefit program, Social Security Disability Insurance (SSDI), for people who can no longer work because of a disability.
She recalls: "The person said, 'I can make you an appointment for SSDI, do you want to claim disability?' I said, 'No, I do not want to collect SSDI.'"
It took several weeks, she says, until she got an appointment to talk over her problem with a Social Security caseworker. Haly says he advised her that she needed to reapply for SSI.
She was reluctant to apply for a benefit that she already held, and had without question, for years. But the staffer was insistent, so she did.
Shortly after, she got a letter from Social Security with a short denial. It said she made too much money to qualify.
SSI's regulations are complex and confusing. Often, recipients find it necessary to hire a lawyer or a benefits manager with specialized expertise to negotiate the rules to stay eligible.
"The rules are so complicated that even the most educated, professional people cannot understand and follow the rules. It's heartbreaking," says attorney Wagner at Cornell.
For years, Social Security said Haly qualified for an exception to SSI's earnings limit, called a 1619(b) waiver. It refers to a part of the Social Security law that lets some disabled people earn money over the limit and still qualify for Medicaid.
Social Security's denial this summer turned all that upside down.
It ended her eligibility for SSI because of her growing income, which previously was excluded by the waiver. When she lost SSI, she lost the waiver that went with it. She can't use the waiver now or even reapply for it because the waiver is available only to people who Social Security says are eligible for SSI.
"It's a catch-22," says Haly, frustrated.
To be eligible again, Haly would need to impoverish herself and give up the aides and medical care she is unlikely to afford on her own, especially if she can no longer work.
Even then, to reapply for SSI and maybe get the waiver again could take months or even years.
So she's asked Social Security to reverse itself and return to what had been the status quo for years and allow her to stay on SSI, to keep her Medicaid and to keep working.
"My medical expenses are so much, hundreds of thousands a year," says Haly. "Do you not want me to work then? Because I can be a VP at JPMorgan Chase. I pay a lot of taxes being a VP at JPMorgan Chase. Or I can just not work and collect."
While Haly waits for a decision on her appeal, her Medicaid insurance is in place — for now.
"It's a ticking time bomb," she says.
She's frightened, and with good reason.
For a few days in early summer, without Medicaid, everything stopped. Her medicine was delayed. When her medical providers saw her insurance was halted, they canceled her physical therapy sessions and her wheelchair repair.
There would be few options, Haly says, if she loses her appeal to the Social Security Administration. She could stop working and apply for Social Security Disability Insurance. That comes with Medicare. But it would take at least two years to get it.
"Someone like me," she says, "who is a person with a disability who needs full-time care, the only way to get that is in a nursing home."
Popcorn with a personality — and a work limit
For businesses, there's a growing recognition of the value of hiring more workers with disabilities. One trend: The creation of cafes, coffee shops and other small businesses as places where disabled people can be hired to work alongside others without disabilities.
In St. Paul, Minn., attorney Shamus O'Meara opened a specialty popcorn business this year with his 26-year-old son Conor, who is autistic.
Conor O'Meara makes the popcorn and greets customers when they come in.
"When they see Conor," his father says, "it's like, 'Conor, how are you!' It's a true joy to have him here. Everyone knows him. They call him the Mayor of St. Paul."
The goal of Highland Popcorn (motto: "Popcorn with Personality") is to create a place where disabled people can find work.
But Shamus O'Meara says they quickly ran into barriers with SSI. Because of the $65 limit on monthly earnings and the $2,000 limit on assets, many of their employees, including Conor, need to limit their work to just a few hours, a few days a week.
That required Shamus, who hires both disabled and nondisabled workers, to find many extra employees to cover all the shifts.
Work is important to Conor, for social interaction and for the money he can earn.
He takes the bus to two other part-time jobs. At a nearby bowling alley, he cleans the scoring screens and sweeps up the cigarette butts outside. At a pizza restaurant, he buses dishes and wraps silverware in napkins. In addition, he volunteers at a community radio station and hosts a show where he talks about his life and about Minnesota's professional sports teams.
Conor says he'd like to work even more. "I think Social Security should end that one limiting how many hours you work."
A workforce issue, not charity
Tabi Haly's bosses, too, are confounded by SSI's complex and stale rules — and by the idea that a valued worker would go from a company vice president to having her career ended and possibly needing to move to a nursing home.
"Tabi contributes to our business in a very meaningful way. She's top talent," says Bryan Gill, who runs JPMorgan's office of disability inclusion. "And I want more of Tabi's time contributing to our business."
Gill says the financial services company makes an effort to hire people with disabilities because it's a way to find talented workers in a tight labor market.
"We do a lot of charity," he says. "We have a lot of philanthropic efforts. This is not one of them. This is a business strategy imperative to the long-term success of this company."
Haly also writes songs and has recorded two CDs. She started singing as a form of speech therapy to strengthen her weakened lungs.
In the lyrics to one song, "Waiting in the Wings," she asks: "Do they judge me by my talent? ...Treat me less than a human being? Is that what our life's meant to be?"
"Waiting in the wings means we're waiting backstage," she says, waiting for rights. "What that means here in the States is that we have the liberty to pursue our dreams and live them. And not feel like there are all these barriers to get there."
Haly says she only wants the chance to keep working and to keep her independence. But she needs to keep her SSI and Medicaid to make that remain her reality.
Copyright 2024 NPR
