Transcript of Trapped in a Social Safety Net

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 US. Growing up, I 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 eighties 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 1 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 you 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. 1 of her health care providers, told her about this program called SSI, so she applied. And the monthly benefit, she got several $100 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.

This is Eric Glass. On this American life, we like stories that surprise you. For instance, imagine finding a new hobby and realizing

To do this hobby right according to the ways of the masters, there's a pretty good chance that you're gonna have to bend the law to get the materials that you need. If not break it? Yeah. To break international laws.

Your life stories, really good ones, This American Life.

Ho ho ho. Santa here, coming to you from the North Pole where the elves in our podcast division have just completed work on this season's best gift for public radio lovers, NPR Plus. Give the gift of sponsored free listening and even bonus episodes from your favorite NPR podcasts, all while supporting public media. Learn more at plus.npr.org.

How much can 1 person change in 4 years? The answer comes down to who he puts in charge. Trump's Terms is a podcast where you can follow NPR's coverage of the people who will shape Donald Trump's first 100 days in office and what their goals are. We will track his cabinet picks, his political team, his top military leaders to understand who they are, what they believe, and how they'll govern. Listen to Trump's terms from NPR.

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, whether 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, that you know, I definitely know people who had little nor 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 it does sound like it could be a really good tool to fight poverty, but but you led an NPR investigation into the program, and you found a 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 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 1 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.

Okay. So so let's let's take a closer look at these rules and regulations. Like 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.

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 we 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 gonna 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 Balletti. 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 1 week vacation timeshare in the Pocono Mountains in Pennsylvania.

I said no. He says then don't even file again. That's what he I was told by the my caseworker there. Don't even because you still have the timeshare, you're ineligible, period. Have a nice day.

Balletti said the timeshare was worthless. He didn't use it, and he couldn't sell it.

And I can't even give it away.

1 reason he owned it with his ex wife. He could sell only half of his share, 3 and a half days a year, And whoever bought it would need to spend their vacation the same week as mister Belletti's ex wife.

I'm sure his ex wife is lovely, but, you know, you may not wanna spend your vacation with her. You know what I'm saying? You have to work that out with her. So, I mean, that's the that's a really wild story.

And to have that better time share, 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 it just seems like these stories, these people are really struggling and really need this money, and they're getting held up over these kinda technicalities, it almost sounds like.

Yeah. And I I wanna tell you about Karen Williams, the woman who told me she do 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 served generations of black families. And as 1 funeral service was ending, we met Gregory Burrell, the funeral home director.

Oh, Jesus. I know. 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 2 weeks, whenever the insurance guy came, he would mark the book and take the money out.

With the little book Oh. That brings back memories. Yeah. People did. Yeah.

It was probably 50¢ 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 bought the kind of insurance policy that had a modest cash value, that she could cash it in for $1900. To SSI, that counted as an asset. Yeah.

Yes. Good lord. So we see that all the time.

Is that right? 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 $100 that she'd saved in the bank. As a result, she'd gone over the asset limit by about a $160 and had been for the last 2 years.

They come to me, say, oh, 0, you owe $20,000.

$20,000? I mean, that's 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 the several $100 a month they had sent to her in the 2 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 gave her 30 days to pay it back.

And and, I mean, a lot of people ain't gonna have 20 dollars,000. A lot of people are not gonna have $20,000 in 30 days.

Right. It 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 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. 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, 1 in 6 people on SSI got overpayment notices last year. So that's about 1,000,000 people on SSI just in 1 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 1 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 it should end.

You know, it it it seems like for a lot of this, the obvious solution would be to just raise the asset limit Yes. Because it hasn't changed since 1989. And and there has been all of this inflation. Mhmm. 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 so 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 $10,000,000,000 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 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.

You're listening to the Sunday story. We'll be right back.

What happens to democracy when 1 political party has near complete power? That's the question at the heart of super majority. The series the New Yorker just named 1 of the 10 best podcasts of 2024. Listen and hear what all the hype is about. It's season 19 of NPR's embedded podcast.

I'm Jesse Thorn. 2024 is almost over. But before it's gone, come laugh with us at the best stand up comedy of the year on Bullseye. We'll hear from Tig Notaro, Kyle Kinane, Kimberly Clark, Lori Kilmartin, and many, many more. You might even hear your next favorite stand up.

That's on Bullseye for maximum fun dot org and NPR.

Have you ever been on a date with someone and suddenly found yourself disgusted by something they did? Well, you might have gotten the ick. On It's Been a Minute, we're asking the big questions about dating, like what's actually happening when we get the ick, and is it about them or about you? To find out, listen now to the it's been a minute podcast from NPR.

We're back with the Sunday story here with NPR correspondent Joe Shapiro.

Repeal 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 Jeter.

Thank you.

Jeter 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, DC. 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 1 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. Alright. Here we go. We are now going to recite our vows. Give it a whoop whoop.

The US capital 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.

The cardboard box.

By the powers invested in me, I pronounce you all together. You may kiss, hug, high 5, handshake, fist bump, whatever works.

So,

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

Well, I spoke to about 3 dozen people. 1 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. 1 woman told me she felt forced to divorce her husband in order to keep the health care that came with her s s I 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 I can't imagine having to live that way and and needing to lie about, you know, 1 of the most important relationships in 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 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, 3 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, 1 of the things? Right?

Right. So 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 1 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 I don't I don't even know how you make $65 a month. I mean, that's like no money.

Right.

It's totally out of out of date. Ayesha, I wanna 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 wanna be able to live each day, you know, being able to do, what I wanna do, which is work. 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 but how does Tabby Haley get SSI if she has a corporate salary?

Right. Well, she's 1 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 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 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 1 more time? It's gonna Mhmm. Forward her back. All the way down. Alright.

That's better? Yeah.

Thank you. With Haley's fingers placed on a large trackpad, she can control the computer and run her meeting.

John, did you happen to, like, put together what we talked about?

She says some of her colleagues on the call know she's disabled, but almost no 1 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, 100 of 1,000 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.

Which is what Haley says staff at Social Security suggested that she quit working, that she retire, and take disability benefits instead.

So 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 it's designed more for her to just take the 100 and 1,000 of dollars and and and really 1,000,000 and dollars, like, in care that she needs, without actually being what she wants to be, which is like a tax paying member of society.

That's right. Our benefit system, it was set up to take care of 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 1 of the only options for someone who needs hours and hours of care. And Medicaid, they'll they'll pay for that.

So you've said that there are ways to fix SSI, but 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 US 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 the new Trump administration. The social safety net is gonna be a target for budget cuts. The bottom line is that people on 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.

Jill, 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. Quaisee 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 BetterHelp, working to make therapy more convenient, flexible, and affordable. Better Help is committed to helping people manage their well-being and mental health through therapy. Visitbetterhelp.com/npr for 10% off your 1st month.

Hey, everybody. It's time to join NPR's All Songs Considered as we celebrate a very tolerable Christmas with a mix of seasonal songs and special guests.

Yeah. We're in for, like, the saddest Christmas ever. Stuck with Robin who is basically a lump of coal in the shape of a man.

Hear new episodes of All Songs Considered every Tuesday wherever you give podcasts.

Tis the season for rich meals, twinkly likes, and New Year's resolutions. At Life Kit, NPR's self help podcast, we're here to help you make those resolutions less of a December and January thing and more like a year long affair. We've got shows that'll help you draw plans to meet your goals, whatever they are. Get the tools you need all year round with the LifeKit podcast from NPR.