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Fifty-one years ago, the U.S. government created one of the largest benefits programs to help people with disabilities. But an NPR investigation found its rules are so complex and so out of date that the program ends up hurting people it's supposed to help, even putting their lives at risk. NPR investigative correspondent Joseph Shapiro explains.
JOSEPH SHAPIRO, BYLINE: This is a story about a woman who accomplished pretty much everything she ever wanted, against the most incredible of odds. But now a government program that was key to her success is threatening to bring everything crashing down. Meet Tabi Haly.
TABI HALY: People with spinal muscular atrophy like myself living to my age already is a huge win.
SHAPIRO: She's 40. Until recently, it was rare to live that long with her form of muscular dystrophy. Now medical breakthroughs make a longer life possible.
HALY: So I'm basically living on a thin line, and I want to be able to live each day, you know, being able to do what I want to do, which is work.
SHAPIRO: Work - it's central to Tabi Haly's identity. She's a software engineer, a team leader developing products for JPMorgan Chase, the banking giant. She's a vice president, so she makes good money.
HALY: Hand, hand to the left.
SHAPIRO: The day I visited, at her apartment in New York City, Haly's personal care aide spent about 10 minutes getting Haly positioned in front of her computer.
UNIDENTIFIED AIDE: Forward or backwards?
HALY: Just push it all the way down.
SHAPIRO: Haly can't move her body. She needs an aide to help her, in her wheelchair, move her arms and legs.
UNIDENTIFIED AIDE: That's good?
HALY: Thank you.
SHAPIRO: But with Haly's fingers placed on a large track pad, she can control the computer and run her meeting.
HALY: And then, Jones, I saw a bug yesterday in dev environment, but I reverted.
SHAPIRO: Some of her colleagues on the call know she's disabled. Almost no one has any idea of how disabled she is.
HALY: You're not going to be able to see the issue in dev right now because of how the...
SHAPIRO: Haly's success is possible because of a federal benefits program for people with significant disabilities called Supplemental Security Income, or SSI. She's depended upon SSI for almost 19 years and Medicaid, the health insurance that comes with it. But this summer, Social Security, the agency that runs SSI, sent Haly a letter that shocked her. It said, you don't qualify for SSI.
HALY: It's like my foundation's falling apart.
SHAPIRO: She's frightened, and with good reason, because if she loses her SSI, she loses her health insurance. Medicaid pays for her aides, her power wheelchair, her breakthrough medicine. Haly says, if she had to pay out of pocket, the aides would cost about $300,000 a year. The medicine is another 300,000. Her customized wheelchair is as expensive as a small car. If she went on her company's health insurance, it might pay for some of the medicine, but only Medicaid will pay for the wheelchair and the aides, which she needs 24/7.
HALY: I would have to be a multimillionaire to pay for all this stuff myself.
SHAPIRO: Her in-home caregivers lift her in and out of bed, bathe her, help her eat.
HALY: That's who gets me into my wheelchair. And they're my hands and feet.
SHAPIRO: Those aides move her body all day, so she doesn't get painful bed sores. They suction the secretions out of her weakened lungs to keep her healthy. Ari Ne'eman is an assistant professor of public health at Harvard. He researches disability income programs.
ARI NE'EMAN: If you lose access to SSI, you lose access to the Medicaid services that keep you alive and thriving in the community.
SHAPIRO: Keep you alive?
NE'EMAN: Yes. It's a question of life and death. If you need long-term services and supports, if you have particularly costly durable medical equipment or, in some cases, medication needs, Medicaid is invaluable in a way that cannot be replaced by private insurance.
SHAPIRO: If all this seems confusing, well, it is confusing. That's a big part of the problem with SSI. A yearlong NPR investigation found that SSI fails people with disabilities because its rules are so out of date and so complex.
It's not clear why Medicaid and Social Security suddenly cut off Haly this summer, after decades of coverage. Haly and her HR department and lawyers couldn't get an answer. We tried, too. At first, Haly thought it was a simple clerical error, so she went to the Social Security office.
HALY: They had no idea what I was talking about, zero.
SHAPIRO: Haly says staffers couldn't understand why someone so disabled would want to work, that they only offered to help her stop working and sign her up for a separate benefit program for people who can't work because of a disability.
To correct the problem with her health insurance, Haly says she was told she needed to file a new application for SSI. She was reluctant. She already had SSI. But she says the caseworker insisted, so she did. A few weeks later, she got that terse letter saying she was denied SSI because she makes too much money, even though she'd been on the program for decades.
HALY: My medical expenses are so much, hundreds of thousands a year. Do you not want me to work, then? - 'cause I can be a VP at JPMorgan Chase. I pay a lot of taxes being a VP at JPMorgan Chase, or I could just not work and collect.
SHAPIRO: SSI was created in 1972. Back then, someone with a significant disability like Tabi Haly wasn't expected to get educated, to go to college, to get a job. SSI's rules make it hard to take a job. One rule says you can own only $2,000 in assets, like bank savings or property. That limit hasn't changed since 1989. Haly got a waiver from it.
Another rule that hasn't budged since 1972 says you can't earn more than $65 a month. Then you lose $1 of benefits for every $2 you earn. In effect, a tax of 50% - that's why Haly makes too much to get a benefit check, but she still needs to qualify for SSI to get that health insurance. Haly's bosses, too, are confounded by SSI's complex and antiquated rules.
BRYAN GILL: Tabi contributes to our business in a very meaningful way. She's top talent.
SHAPIRO: Bryan Gill runs JPMorgan Chase's Office of Disability Inclusion. He says the bank makes an effort to hire people with disabilities because it's a way to find talented workers in a tight labor market.
GILL: We do a lot of charity. 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.
SHAPIRO: This has been a brutal summer for Tabi Haly. She's appealed the loss of her SSI.
HALY: I have so many medical needs, and talking about it right now sounds very sad. Like, I don't want to start crying, where I feel like I have to - maybe I shouldn't even be alive. Like, let's not go down that downward spiral.
SHAPIRO: A few weeks ago, she took a leave from her job at JPMorgan Chase while she appeals Social Security's decision to end her SSI. Joseph Shapiro, NPR News.
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