Joseph Shapiro
Appearances
Up First from NPR
Trapped in a Social Safety Net
Of all the monthly checks the Social Security Administration sends to Americans, SSI accounts for just 4%. But to run SSI takes up 38% of the agency's entire administrative budget.
Up First from NPR
Trapped in a Social Safety Net
Ayesha, last year I went to a protest against what disabled people called SSI's marriage penalty.
Up First from NPR
Trapped in a Social Safety Net
Jetter is a disabled woman from New Jersey. She was wearing a multicolored dress and a rainbow wig, and she was leading a marriage commitment ceremony on the National Mall in Washington, D.C. Only it wasn't to get people legally married, really. It was a protest to bring attention to SSI's marriage penalty.
Up First from NPR
Trapped in a Social Safety Net
Because SSI's asset limit makes it really hard to get married and still qualify for SSI. Remember, for one person, you're not eligible for SSI if you own more than $2,000 in assets. That's already low. But for a married couple, the asset limit is only $3,000.
Up First from NPR
Trapped in a Social Safety Net
But it wasn't enough. One of her health care providers told her about this program called SSI. So she applied. And the monthly benefit, she got several hundred dollars a month, was a relief. It made her life better. It helped her get by, at least for a while. Then the program turned into her nightmare.
Up First from NPR
Trapped in a Social Safety Net
Give it a whoop whoop. The U.S. Capitol was gleaming in the background over a stage with a large heart of red and pink flowers.
Up First from NPR
Trapped in a Social Safety Net
Well, I spoke to about three dozen people. One of the saddest things many people told me is that they make the painful decision to close themselves off from dating, from love, romance, altogether. because they can't afford to fall in love with someone and risk losing their SSI.
Up First from NPR
Trapped in a Social Safety Net
One woman told me she felt forced to divorce her husband in order to keep the health care that came with her SSI eligibility. They still live together without a marriage license, but even that could get them in trouble with Social Security. Social Security calls that holding out to live as if you're married, even though you're not legally married.
Up First from NPR
Trapped in a Social Safety Net
So even though they spend all their time together, they still need to rent separate apartments. And when a state caseworker visits, the woman told me she takes down all the photos around the house of her with her partner.
Up First from NPR
Trapped in a Social Safety Net
For sure. The people I talk to say that they're blocked from a right that's given to everyone else. And just to step back for a moment, there's been a revolution in the expectations for disabled people's lives since SSI was created in 1972. It wasn't until 1975, three years after SSI was created, that the first law passed to guarantee kids with disabilities could go to school.
Up First from NPR
Trapped in a Social Safety Net
And SSI was created almost 20 years before the Americans with Disabilities Act, which in 1990 banned discrimination against people with disabilities to make sure they could have the same ambitions as everyone else to be fully integrated into American life. And that includes, by the way, the right to find meaning in work.
Up First from NPR
Trapped in a Social Safety Net
Right. So to be clear, very few people on SSI are able to work. Less than 10% do work. And most of them are in low-paying part-time jobs. But some do work, and SSI has rules around work. And those are stuck in another era, too. So there's a limit on how much someone on SSI can earn in one month. It's just $65. More than $65 in a month? SSI reduces their benefit check.
Up First from NPR
Trapped in a Social Safety Net
It takes $1 for every $2 they earn. So, in effect, that's a tax of 50% on some of the poorest people in America.
Up First from NPR
Trapped in a Social Safety Net
Right. It's totally out of date. Ayesha, I want to tell you about someone else I met on SSI. Tabby Haley. She has spinal muscular atrophy, which weakens her muscles and her lungs.
Up First from NPR
Trapped in a Social Safety Net
She's 40. Medical breakthroughs, new medicines make a longer life possible.
Up First from NPR
Trapped in a Social Safety Net
Work. It's central to Tabby Haley's identity. Haley is a software engineer, a team leader on development and coding projects. She was a vice president at JPMorgan Chase, the financial services company.
Up First from NPR
Trapped in a Social Safety Net
Right. Well, she's one of a very, very small number of people who are on SSI but also make too much money to get a monthly benefit check. So she doesn't get a check, but she needs to stay eligible for SSI in order to keep her Medicaid coverage. So when Tabby Haley first started working, SSI gave her a waiver. It set aside her earnings from the asset limit and with her income,
Up First from NPR
Trapped in a Social Safety Net
Right. Medicaid is the only insurance that will work for her. It's the only health insurance that pays for the things she needs. Haley can't move her body. She depends upon aides to assist her day and night to help her move her arms and legs, to bathe, to get dressed, to eat.
Up First from NPR
Trapped in a Social Safety Net
This summer, I went to meet Tabby Haley at her apartment in New York City, and I watched as her personal care aide spent about 10 minutes getting Haley positioned in front of her computer.
Up First from NPR
Trapped in a Social Safety Net
With Haley's fingers placed on a large trackpad, she can control the computer and run her meeting.
Up First from NPR
Trapped in a Social Safety Net
She says some of her colleagues on the call know she's disabled, but almost no one has any idea of how disabled she is. Medicaid pays for her AIDS, her power wheelchair, and her medicine. No other insurance will do that. But she can only be eligible for Medicaid if she keeps her eligibility for SSI. And that worked fine for Haley for 19 years.
Up First from NPR
Trapped in a Social Safety Net
But earlier this year, her Medicaid didn't get renewed as usual. She didn't get a response at the Medicaid office, so she went to Social Security. And there, she says, a case manager told her, well, why don't you just reapply for SSI? And then Social Security sent her a rejection letter saying she made too much money to qualify for SSI.
Up First from NPR
Trapped in a Social Safety Net
Which is what Haley says staff at Social Security suggested, that she quit working, that she retire and take disability benefits instead.
Up First from NPR
Trapped in a Social Safety Net
That's right. Our benefit system, it was set up to take care of people, but not to help them get the support they need so that they can live independent lives, live in the community like Tabby Haley in her own apartment, and to have a job and a career. This summer, Haley took a leave of absence from her job while she appeals SSI's decision, and she's getting benefits for now.
Up First from NPR
Trapped in a Social Safety Net
But there's been no indication that SSI is going to reverse itself. And she's worried that she might end up in a nursing home soon. It's one of the only options for someone who needs hours and hours of care. And Medicaid, they'll pay for that.
Up First from NPR
Trapped in a Social Safety Net
SSI is run by the Social Security Administration. It provides financial assistance in the form of a monthly check, mostly to adults with physical disabilities or they're blind or they have mental health disabilities. Some checks go to disabled children and also to people 65 and older who are very poor.
Up First from NPR
Trapped in a Social Safety Net
Well, I think it's striking that right now there's this broad support for reform from Democrats and Republicans, from disability groups, of course, but also from big business, the U.S. Chamber of Commerce, the biggest banks like JPMorgan Chase, where Tabby Haley works, companies like Microsoft. They want disabled workers.
Up First from NPR
Trapped in a Social Safety Net
But the reform I've been writing about seems less likely to happen in a new Trump administration. The social safety net, it's going to be a target for budget cuts. The bottom line is that people in SSI, the disabled and elderly poor, they don't have political power. They rely upon a program that was created for them 52 years ago. And then the program and the people on it were forgotten.
Up First from NPR
Trapped in a Social Safety Net
So they're left to get around all these traps, the absurdities, the indignities of SSI's out-of-date and overly complex rules.
Up First from NPR
Trapped in a Social Safety Net
Yes, those SSI checks, those are lifelines to some of the poorest people in this country. And this year, the average SSI check is about $700 a month. The money helps people pay for everyday expenses, food, rent, medical costs, and it qualifies them in most states for health insurance through Medicaid.
Up First from NPR
Trapped in a Social Safety Net
Yes, so a forgotten safety net because SSI was this bold and innovative program when it was created back in 1972. And this may be surprising, but the idea started with President Richard Nixon. He proposed replacing the existing federal welfare system with a guaranteed basic income to impoverished Americans. They'd get monthly vouchers and they could spend the money how they wanted.
Up First from NPR
Trapped in a Social Safety Net
And Nixon got support on the right and from some on the left. But in the end, his plan failed. Just one part survived, a monthly check to poor, disabled, and elderly people. It was an easier case to make because these were considered among the most so-called deserving of the poor. And that's how SSI was created. But in 52 years, the program has been largely forgotten by lawmakers and policymakers.
Up First from NPR
Trapped in a Social Safety Net
Its rules are frozen in place at standards from 40 to 50 years ago.
Up First from NPR
Trapped in a Social Safety Net
So here's the biggest problem that I found. To be on SSI, there's a limit on how much money you can have or how much you can own. It's called the asset limit. But that number is from another era. It's just $2,000, the same as it was in 1989.
Up First from NPR
Trapped in a Social Safety Net
Right. If SSI's asset limit had kept up with inflation, instead of being $2,000 today, it would be $10,000 today.
Up First from NPR
Trapped in a Social Safety Net
Yeah. I heard dozens and dozens of stories from people who ran into that $2,000 asset limit. You know, people who get SSI, they're required to report everything they own to Social Security and to let the agency monitor their bank accounts and collect income data. I spoke to a man in Illinois.
Up First from NPR
Trapped in a Social Safety Net
He said he felt trapped living in what he told me was a run-down apartment with rodents in an unsafe neighborhood. So he went looking for a new apartment. He saved up to make the down payment. Social Security, though, saw the money in his bank account, and he was now over $2,000, and it sent him a letter saying it was going to kick him off of SSI. So he stopped saving, and he never moved.
Up First from NPR
Trapped in a Social Safety Net
I heard about a family whose roof collapsed. They took a small loan from a friend. Social Security counted the loan as an asset, and the family lost benefits for their disabled son. And on Long Island in New York, I met Peter Belletti. He drove tractor trailers, but loading and unloading those rigs left him with nerve damage. He had pain, numbness in his feet. He had to stop working.
Up First from NPR
Trapped in a Social Safety Net
So he battled for years to get onto SSI. He kept getting turned down because of something he told SSI that he owned.
Up First from NPR
Trapped in a Social Safety Net
A one-week vacation timeshare in the Pocono Mountains in Pennsylvania.
Up First from NPR
Trapped in a Social Safety Net
Beletti said the timeshare was worthless. He didn't use it, and he couldn't sell it.
Up First from NPR
Trapped in a Social Safety Net
One reason, he owned it with his ex-wife. He could sell only half of his share, three and a half days a year, and whoever bought it would need to spend their vacation the same week as Mr. Beletti's ex-wife.
Up First from NPR
Trapped in a Social Safety Net
I'm sure there are better timeshare offers on the market.
Up First from NPR
Trapped in a Social Safety Net
I heard so many stories like this that just seem to defy common sense.
Up First from NPR
Trapped in a Social Safety Net
Yeah. And I want to tell you about Karen Williams, the woman who told me she knew how to squeeze her money to make a dollar holler.
Up First from NPR
Trapped in a Social Safety Net
Right? Yeah. She, too, ran into a problem with the asset limit. It all started when she bought a life insurance policy to pay for her own funeral.
Up First from NPR
Trapped in a Social Safety Net
She was just trying to do the right thing financially for her family.
Up First from NPR
Trapped in a Social Safety Net
I went to Philadelphia to visit Karen Williams, and she brought me to the Terry Funeral Home. It's a fixture in West Philadelphia. It's served generations of black families. And as one funeral service was ending, we met Gregory Burrell, the funeral home director.
Up First from NPR
Trapped in a Social Safety Net
Burrell came down to the lobby to meet with us. And he and William started talking about how past generations of Black families had little access to savings, but how their own parents and grandparents put aside money to pay for their funerals
Up First from NPR
Trapped in a Social Safety Net
Karen Williams, she didn't have an envelope tacked to her door, but she put money aside to save up for her policy. What she didn't understand, though, was that she'd bought the kind of insurance policy that had a modest cash value, that she could cash it in for $1,900. To SSI, that counted as an asset. Yeah, Lord.
Up First from NPR
Trapped in a Social Safety Net
In 2019, Williams got a letter from Social Security telling her, you better come to our office. And that's where a staffer told her that Social Security found records of that insurance policy, plus the couple hundred dollars that she'd saved in the bank. As a result, she'd gone over the asset limit by about $160 and had been for the last two years.
Up First from NPR
Trapped in a Social Safety Net
It said she'd been given an overpayment and it was demanding all of that money back, even though Social Security only discovered the problem now. And it gave her 30 days to pay it back.
Up First from NPR
Trapped in a Social Safety Net
Right. It was impossible. She didn't have that kind of money. You know, after she lost her SSI check, she had to get by with help from her children and friends. She found a lawyer at Community Legal Services in Philadelphia who helped her challenge the big bill she got from SSI. And eventually, Social Security started sending her benefit checks again.
Up First from NPR
Trapped in a Social Safety Net
And it conceded that it made a technical mistake in the way it handled her case. Social Security said it would waive the money she owed, but it's still deducting money from her checks. So Karen Williams is still fighting the Social Security administration.
Up First from NPR
Trapped in a Social Safety Net
This is Kathleen Romig. When I spoke to her, she worked at a Washington think tank called the Center on Budget and Policy Priorities. Earlier this year, she went to work at the Social Security Administration. She's written about raising the asset limit or ending it altogether.
Up First from NPR
Trapped in a Social Safety Net
Karen Williams couldn't work because of a disability. She was struggling to pay for her everyday expenses. But she was proud of how she managed the little money she did have.
Up First from NPR
Trapped in a Social Safety Net
By Social Security's own reporting, one in six people on SSI got overpayment notices last year. So that's about one million people on SSI just in one year told they owed money back to Social Security. Now, we did reach out to Social Security, and we talked to Commissioner Martin O'Malley. He was appointed by President Biden, and actually, he just stepped down.
Up First from NPR
Trapped in a Social Safety Net
But when we spoke, O'Malley pointed out that he's done some things in the past year to try to make it easier for people to apply for SSI, also to follow some of these complex rules. And here's one of the most ridiculous rules.
Up First from NPR
Trapped in a Social Safety Net
If you are on SSI and, let's say, a family member took you out to lunch or invited you over to Thanksgiving dinner or Christmas dinner, you were supposed to give Social Security the receipt for the cost of the meal, the cost of your turkey, the cost of how much ham you ate at Christmas. And Social Security was supposed to then deduct the cost of that meal from your benefit check.
Up First from NPR
Trapped in a Social Safety Net
So Social Security just ended that just this past September. And there was a wide consensus that this rule didn't make sense and that it should end.
Up First from NPR
Trapped in a Social Safety Net
Well, not the Social Security Administration. Commissioner O'Malley told us that he, too, thinks the asset limit is long out of date, that it needs to be increased. But that's up to Congress. And there has been legislation supported by Democrats and Republicans, but it hasn't gotten very far.
Up First from NPR
Trapped in a Social Safety Net
Right. Well, cost is a big hurdle. Social Security's actuaries estimate that raising the asset limit to $10,000 would add almost $10 billion to the program over 10 years. But policy experts like Kathleen Romig, who we just heard,
Up First from NPR
Trapped in a Social Safety Net
argue that that's a pretty modest cost because it would make the system work a lot better, fewer recipients would get kicked off, and Social Security staff would spend less time trying to figure out who qualifies and who doesn't. SSI is just a small program. It's tiny compared to what we think of when we hear Social Security, right? The much larger retirement program.