Trapped in a Social Safety Net
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I'm Ayesha Roscoe, and this is a Sunday Story. When you think about Social Security, you might think about someone who's retired, getting a check, you know, living on a fixed income with help from Social Security. But Social Security includes a wide range of programs that make up the social safety net in the U.S.,

Growing up, I knew of extended family or friends of family who depended on these monthly checks because they had disabilities or children with disabilities or they didn't have a lot of money and they needed this money to survive. My mom actually worked for Social Security in the 80s and she helped a lot of people get these benefits.

Today, we're going to focus on a program that supports people with disabilities and Americans who are very, very poor. It's called Supplemental Security Income, or SSI, and it serves some of the most vulnerable Americans. NPR correspondent Joseph Shapiro has been reporting on this program over the last year. He recently published a series of investigative stories on NPR about SSI.

We sat down to talk about the ins and outs of this program, and he told me a lot of stories, including one about Karen Williams, a 63-year-old woman in Philadelphia.

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. And I was just making a dollar not only holler, but make it scream. And that's what I was doing. I knew how to juggle money and save and put up and all that.

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. It's really tiresome.

Today on the Sunday Story, how a program designed as a safety net for the poor and disabled has kept many in poverty instead. More on correspondent Joe Shapiro's investigation when we come back.

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You're listening to the Sunday story. I'm here with correspondent Joe Shapiro talking about the Supplemental Security Income Program. So, Joe, tell me about the SSI program. Like, who is it meant to serve?

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. Okay. Well, you know, I definitely know people who had little or no income and they relied on these checks to get by.

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. So it does sound like it could be a really good tool to fight poverty. But you led an NPR investigation into the program and you found a very different reality. And you called SSI the forgotten safety net. Why?

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.

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. Its rules are frozen in place at standards from 40 to 50 years ago. OK, so let's take a closer look at these rules and regulations. Like, where should we start on this? 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. Yeah, $2,000 in today's dollars doesn't, I mean, that's really low. Right. If SSI's asset limit had kept up with inflation, instead of being $2,000 today, it would be $10,000 today.

So given these outdated guidelines, I would imagine that a lot of people are being kicked off or having to really live in terrible conditions to stay under that $2,000 limit. 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. He said he felt trapped living in what he told me was a rundown 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. 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 Buletti. 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. So he battled for years to get onto SSI. He kept getting turned down because of something he told SSI that he owned. They said, did you get rid of the timeshare? A one-week vacation timeshare in the Pocono Mountains in Pennsylvania. I said, no. He says, then don't even file again.

That's what I was told by my caseworker there. Don't even, because you still have the timeshare, you're ineligible. Period. Have a nice day. But Letty said the timeshare was worthless. He didn't use it and he couldn't sell it. And I can't even give it away. One reason he owned it with his ex-wife.

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. Belletti's ex-wife. I'm sure his ex-wife is lovely, but, you know, you may not want to spend your vacation with her. You know what I'm saying? You have to...

Work that out with her. So, I mean, that's a really wild story. I'm sure there are better timeshare offers on the market. Yeah, yeah. I heard so many stories like this that just seem to defy common sense. And so, I mean, it just seems like these stories, these people are really struggling and really need this money. And they're getting held up over these kind of technicalities, it almost sounds like.

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. Yeah, yeah. I love that. 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. I wanted to make sure that I had insurance.

So my children wouldn't have to go through some of the things that I've seen, heard, and know, you know, with people that had to put their house up, borrowing money, asking for money, go from me pages. To be honest with you, I wanted to, when I leave this earth,

I wanted to leave it with dignity. She was just trying to do the right thing financially for her family. I didn't want to be a burden to anyone. And that's why I got the insurance policy. 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. Ooh, Jesus. How are you? God bless. 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. You know, I grew up down south.

And down south, people have life insurance. My grandmother used to have her insurance policy nailed on the door.

and she would put the money inside this little jacket, and every week or two weeks, whenever the insurance guy came, he would mark the book and take the money out. With the little book, that brings back memories. Oh, my gosh, yeah, people did that. Yeah. It was probably 50 cents a week, but they had it. That's how people paid their life insurance.

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. We see that all the time. 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. They come to me, say, ooh, you owe $20,000. $20,000? I mean, that's a lot of money for anybody. She now owed $20,385.85, to be exact.

because Social Security was counting all the SSI checks, the several hundred dollars a month they had sent to her in the two years that she'd been over the limit. 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

It gave her 30 days to pay it back. And I mean, a lot of people ain't going to have $20,000. A lot of people are not going to have $20,000 in 30 days. 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. 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. It's really tiresome. I am so, so tired.

through with this. And I can believe that a lot of people just give up. The impact of it is just cruel. 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 and

She's written about raising the asset limit or ending it altogether. We know that saving is good. We know that we can use savings to invest in things that can make people's lives better, for example, education or safe and stable housing. We know that saving is necessary for that. And yet we're prohibiting some of the poorest, most vulnerable people from doing just that.

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. 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. 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. How can you even get a receipt for something like that? I mean, that just seems so extreme. 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.

You know, it seems like for a lot of this, the obvious solution would be to just raise the asset limit because it hasn't changed since 1989. And there has been all of this inflation. Why is it stuck at $2,000 and who can change it?

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. Well, I mean, why if it has, like, bipartisan support? 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, 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. 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.

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We're back with the Sunday Story, here with NPR correspondent Joe Shapiro. Repeal the marriage penalty! Repeal the marriage penalty! Ayesha, last year I went to a protest against what disabled people called SSI's marriage penalty. If there is anyone here who thinks that disabled people should not be married, speak now or shut it.

This is Patrice Jetter. Thank you. 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. And to promote disabled marriage equality. 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. All right, here we go. We are now going to recite our vows. 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. Repeat after me. We would like to get married. We'd like to get married.

And be able to go to the doctor. Be able to go to the doctor. We would like to get married. Like to get married. And be able to pay rent and bills. Be able to pay rent and bills. And end up not living. And not living. In a cardboard box. In a cardboard box.

By the powers invested in me, I pronounce you all together. You may kiss, hug, high-five, handshake, fist bump, whatever works. Amen.

So, Joe, if people can't get married and still keep their SSI benefits, what do they do? 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, all

altogether because they can't afford to fall in love with someone and risk losing their SSI. 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.

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. I mean, that, I can't.

I can't imagine having to live that way and needing to lie about, you know, one of the most important relationships in your life and always being worried about getting caught or, you know, somebody maybe telling on you. That's something you would have over your head. For sure. The people I talk to say that they're blocked from a right that's given to everyone else. And

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.

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.

I thought that if you had SSI, you wouldn't be able to work. Isn't that like one of the things, right? 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. 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.

And that's just for making more than $65 a month? I don't even know how you make $65 a month. I mean, that's like no money. 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. Living to my age already is a huge win. She's 40. Medical breakthroughs, new medicines make a longer life possible. 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.

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. Okay, but how does Tabby Haley get SSI if she has a corporate salary? 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. Uh,

So she doesn't get a check, but she needs to stay eligible for SSI in order to keep her Medicaid coverage. So when Tammy Haley first started working, SSI gave her a waiver. It set aside her earnings from the asset limit, and with her income, she pays income tax, just like everyone else. Okay, so it's not about her getting a check. She's not getting a check in the mail each month, but she needs that health care, which that's what's critical for her. 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 AIDS to assist her day and night to help her move her arms and legs, to bathe, to get dressed, to eat. Hand to the left.

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. Can you move the towel one more time? It's going to just push it all the way down. All right. That's better? Yeah. Thank you. With Haley's fingers placed on a large trackpad, she can control the computer and run her meetings.

John, did you happen to put together what we talked about? 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. 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. It's like my foundation's falling apart.

My medical expenses are so much. Hundreds of thousands a year. 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 could just not work and collect money.

which is what Haley says staff at Social Security suggested, that she quit working, that she retire and take disability benefits instead. So basically what Tabby is arguing is, look, if I work, I actually am paying into these programs that I'm using. But it sounds like the way the system is set up, it's different.

It's designed more for her to just take the hundreds and thousands of dollars and really millions of dollars in care that she needs without actually being what she wants to be, which is like a taxpaying member of society.

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.

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. So you've said that there are ways to fix SSI. But what can we expect in a Trump administration?

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. 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. So they're left to get around all these traps, the absurdities, the indignities of SSI's

out-of-date, and overly complex rules. Joe, it's really powerful to hear all of these stories from people who are just trying to live and doing the best that they can. I really appreciate it. And I appreciate you, Ayesha. Thank you.

This episode of The Sunday Story was produced by Justine Yan. It was edited by Jenny Schmidt. Kwesi Lee mastered the episode. The Sunday Story team includes Andrew Mambo and our senior supervising producer, Liana Simstrom. Irene Noguchi is our executive producer. I'm Aisha Roscoe. Up First is back tomorrow with all the news you need to start your week. Until then, have a great rest of your weekend.

This message comes from NPR sponsor Merrill. Whatever your financial goals are, you want a straightforward path there. But the real world doesn't usually work that way. Merrill understands that.

That's why, with a dedicated Merrill advisor, you get a personalized plan and a clear path forward. Go to ml.com slash bullish to learn more. Merrill, a Bank of America company. What would you like the power to do? Investing involves risk. Merrill Lynch, Pierce, Fenner & Smith Incorporated, registered broker-dealer, registered investment advisor, member SIPC.

This message comes from NPR sponsor Merrill. Whatever your financial goals are, you want a straightforward path there. But the real world doesn't usually work that way. Merrill understands that. That's why I'm here.

That's why, with a dedicated Merrill advisor, you get a personalized plan and a clear path forward. Go to ml.com slash bullish to learn more. Merrill, a Bank of America company. What would you like the power to do? Investing involves risk. Merrill Lynch, Pierce, Fenner & Smith Incorporated, registered broker-dealer, registered investment advisor, member SIPC.