Trapped in a Social Safety Net

Summary

Summary of "Trapped in a Social Safety Net"
Up First from NPR – The Sunday Story
Release Date: December 8, 2024

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Introduction

In the December 8, 2024 episode of NPR's Up First, titled "Trapped in a Social Safety Net," host Aisha Rascoe delves deep into the intricacies and challenges of the Supplemental Security Income (SSI) program. Through investigative reporting by NPR correspondent Joseph Shapiro, the episode sheds light on how SSI, intended as a lifeline for the most vulnerable Americans, has become a system fraught with outdated regulations and bureaucratic hurdles that often exacerbate the very issues it aims to alleviate.

Understanding Supplemental Security Income (SSI)

Aisha Rascoe opens the discussion by broadening the common perception of Social Security beyond retirement benefits. She emphasizes that Social Security encompasses a variety of programs forming the U.S. social safety net. Specifically, the episode focuses on SSI, a program designed to support adults and children with disabilities and elderly individuals facing severe financial hardship.

Joe Shapiro provides a foundational understanding of SSI:

"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."
(04:05)

With an average monthly benefit of about $700, SSI aims to help recipients cover essential expenses such as food, rent, and medical costs, and qualifies them for Medicaid in most states.

Historical Context and Forgotten Foundations

Joe Shapiro traces the origins of SSI back to 1972 under President Richard Nixon, who initially envisioned a comprehensive federal welfare system replacing existing programs with a guaranteed basic income. While Nixon's broader plan failed, the component providing monthly checks to the poorest, disabled, and elderly persisted. However, over the past 52 years, SSI has largely been overlooked by lawmakers and policymakers, with its rules remaining stagnant since the late 1980s:

"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."
(05:49)

Outdated Asset Limits and Their Consequences

One of the most critical issues highlighted is the asset limit, a threshold determining eligibility based on the amount of money and resources an individual possesses. Set at a mere $2,000, this limit hasn't kept pace with inflation since 1989:

"If SSI's asset limit had kept up with inflation, instead of being $2,000 today, it would be $10,000."
(06:29)

This outdated cap forces recipients into precarious situations where even minor financial changes can jeopardize their benefits. Shapiro shares numerous heartbreaking stories illustrating this predicament:

• Karen Williams' Struggle
  Karen Williams, a 63-year-old from Philadelphia, initially found relief in receiving SSI when she couldn't work due to her disability. However, her prudent financial decisions to secure her family's future inadvertently led to her downfall. She purchased a life insurance policy with a modest cash value of $1,900, unknowingly pushing her over the asset limit:

  "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... I wanted to leave it with dignity."
  (09:14)

  Upon discovery of her slight excess, Social Security deemed her over the limit and demanded repayment of over $20,000—a sum unattainable for someone on SSI. Despite eventual concessions from Social Security, Williams continues her battle, highlighting the systemic failures:

  "It's really tiresome. I am so, so through with this, and I can believe that a lot of people just give up."
  (14:10)

• Peter Belletti's Timeshare Nightmare
  On Long Island, New York, Peter Belletti's ownership of a timeshare became a barrier to his SSI benefits. Despite the timeshare's negligible value and impracticality, Social Security classified it as an asset, rendering Belletti ineligible:

  "Don't even file again... because you still have the timeshare, you're ineligible. Period."
  (08:15)

  Belletti's story underscores the rigid and often nonsensical application of asset limits, trapping individuals in inadequate living conditions to maintain their benefits.

Impact on Housing and Mobility

The stringent asset limits have dire repercussions on recipients' ability to improve their living situations. For instance, a man in Illinois faced unsafe living conditions but was unable to save for a new apartment without exceeding the $2,000 limit, resulting in his inability to relocate:

"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... 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."
(06:43)

The Marriage Penalty and Its Ramifications

A particularly poignant aspect discussed is the marriage penalty within SSI. For single recipients, the asset limit is $2,000, but for married couples, it's only $3,000:

"For one person, you're not eligible for SSI if you own more than $2,000 in assets. But for a married couple, the asset limit is only $3,000."
(19:00)

This discrepancy forces disabled individuals to make heart-wrenching choices regarding relationships. During a protest on the National Mall, Patrice Jeter, a disabled woman from New Jersey, led a symbolic marriage ceremony to highlight how SSI's marriage penalty undermines disabled marriage equality:

"We would like to get married and be able to go to the doctor... and end up not living in a cardboard box."
(21:25)

Participants in similar situations often resort to living separately or concealing their relationships to retain benefits, sacrificing personal happiness and social connections:

"People 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."
(21:59)

Barriers to Employment and Economic Participation

SSI's outdated employment rules further hinder recipients from improving their financial standing. The program imposes an earnings limit of just $65 per month:

"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."
(24:09)

This effectively acts as a 50% tax on additional income, discouraging recipients from pursuing better-paying opportunities. Nevertheless, a small fraction attempts to work:

• Tabby Haley's Balancing Act
  Tabby Haley, a 40-year-old software engineer and vice president at JPMorgan Chase, exemplifies the few who manage to balance employment with SSI. Despite her corporate salary, she retains SSI not to receive monthly benefits but to maintain essential Medicaid coverage necessary for her severe disability:

  "Medicaid pays for her aids, her power wheelchair, and her medicine. No other insurance will do that."
  (26:30)

  However, changes in SSI policies recently jeopardized her benefits, forcing her to consider leaving her career or risking her healthcare:

  "She was told to just quit working, to retire, and take disability benefits instead."
  (28:51)

Haley's story highlights the program's failure to support those who wish to contribute economically while managing disabilities, trapping them in a cycle of dependency without avenues for advancement.

Policy Reform and Political Challenges

Kathleen Romag, a policy expert and former Washington think tank employee, advocates for raising or eliminating the asset limit. Despite bipartisan support, significant obstacles remain:

"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 argue that's a modest cost because it would make the system work a lot better."
(17:09)

The main impediment to reform is political will. While administrative figures like the former Social Security Commissioner Martin O'Malley acknowledge the need for updates, actual legislative changes have stalled:

"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."
(16:49)

Moreover, the SSI program, although accounting for only 4% of Social Security's monthly checks, consumes 38% of the administrative budget, revealing inefficiencies that could be addressed with policy adjustments.

Reform Prospects Amid Political Shifts

Despite broad support for SSI reform—from Democrats, Republicans, disability groups, and major businesses—the potential for change appears bleak under a Trump administration, which is likely to target the social safety net for budget cuts. This shift underscores the precariousness of SSI recipients' reliance on a program that has been largely neglected and underfunded:

"A lot of people are being held up over these kind of technicalities. It almost sounds like... The Social Security Administration's own reporting, one in six people on SSI got overpayment notices last year."
(15:03)

Personal Stories: The Human Face of SSI's Flaws

The episode effectively humanizes the systemic issues through personal narratives:

• Karen Williams' Persistence
  Despite facing substantial overpayment debts, Karen Williams continues to fight for her rightful benefits, embodying resilience amid bureaucratic adversity.

• Tabby Haley's Advocacy
  Haley's efforts to maintain her employment while securing necessary healthcare illustrate the systemic failures that impede disabled individuals from achieving independence and economic participation.

• Patrice Jeter's Protest
  Jeter's symbolic marriage protest stages a powerful critique of SSI's discriminatory practices, emphasizing the need for inclusive policies that respect the rights and dignity of disabled individuals.

Conclusion

Trapped in a Social Safety Net offers a compelling and comprehensive examination of SSI's current state, highlighting how outdated policies and rigid regulations undermine the program's foundational goals. Through poignant personal stories and expert analysis, the episode underscores the urgent need for policy reform to ensure that SSI can effectively support America's most vulnerable populations. Without such changes, SSI risks continuing to entangle recipients in a web of poverty and dependency, rather than serving as the safety net it was intended to be.

Notable Quotes

• Karen Williams:

  "I was just making a dollar, not only holler, but make it scream. I knew how to juggle money and save and put up and all that."
  (01:35)

• Joe Shapiro on Asset Limits:

  "If SSI's asset limit had kept up with inflation, instead of being $2,000 today, it would be $10,000."
  (06:29)

• Patrice Jeter at Protest:

  "We would like to get married and be able to go to the doctor... and end up not living in a cardboard box."
  (21:25)

• Joe Shapiro on Program Relevance:

  "Our benefits system 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."
  (29:27)

Implications for Listeners

For those unfamiliar with the intricacies of SSI, this episode serves as an eye-opening exploration of how well-intentioned social programs can falter without ongoing oversight and adaptation. It calls listeners to consider the importance of policy reform and the human impact of bureaucratic rigidity, fostering a deeper understanding of the challenges faced by disabled and impoverished Americans relying on SSI.

Transcript

[Aisha Rascoe]

I'm Aisha Rascoe and this is the 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.

[Joe Shapiro]

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.

[Aisha Rascoe]

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.

[Joe Shapiro]

But it wasn't enough. One of her healthcare providers told her about the 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.

[Aisha Rascoe]

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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[Aisha Rascoe]

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?

[Joe Shapiro]

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.

[Aisha Rascoe]

Okay. Well, that, you know, I definitely know people who had little normal income and they relied on these checks to get by.

[Joe Shapiro]

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.

[Aisha Rascoe]

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?

[Joe Shapiro]

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 want. 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.

[Aisha Rascoe]

Okay. So let's take a closer look at these rules and regulations. Like where should we start on this?

[Joe Shapiro]

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 a another era. It's just $2,000. The same as it was in 1989.

[Aisha Rascoe]

Yeah, $2,000 in today's dollars doesn't. I mean, that's really low.

[Joe Shapiro]

Right. If SSI's asset limit had kept up with inflation, instead of being $2,000 today, it would be $10,000.

[Aisha Rascoe]

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.

[Joe Shapiro]

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 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. So he battled for years to get onto ssi. He kept getting turned down because of something he told SSI that he owned.

[Aisha Rascoe]

They said, did you get rid of the timeshare?

[Joe Shapiro]

A one week vacation timeshare in the Pocono Mountains in Pennsylvania?

[Aisha Rascoe]

I said, no. He says, then don't even file again.

[Joe Shapiro]

That's what he I was told by.

[Aisha Rascoe]

My caseworker there, don't even, because you still have the timeshare, you're ineligible. Period. Have a nice day.

[Joe Shapiro]

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

[Aisha Rascoe]

And I can't even give it away.

[Joe Shapiro]

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. Belletti's. Ex wife.

[Aisha Rascoe]

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. And to have.

[Joe Shapiro]

I'm sure there are better timeshare offers on the market.

[Aisha Rascoe]

Yeah, yeah.

[Joe Shapiro]

I heard so many stories like this that just seem to defy common sense.

[Aisha Rascoe]

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.

[Joe Shapiro]

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.

[Aisha Rascoe]

Yeah. Yeah. I love that.

[Joe Shapiro]

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.

[Aisha Rascoe]

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. GoFundMe pages. To be honest with you, I wanted to. When I leave this earth, I wanted to leave it with dignity.

[Joe Shapiro]

She was just trying to do the right thing financially for her family.

[Aisha Rascoe]

I didn't want to be a burden to anyone, and that's why I got the insurance policy.

[Joe Shapiro]

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 one funeral service was ending, we met Gregory Burrell, the funeral home director. Oh, Jesus.

[Aisha Rascoe]

I know.

[Joe Shapiro]

How are you?

[Aisha Rascoe]

God bless.

[Joe Shapiro]

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.

[Aisha Rascoe]

And down south, people have life insurance. My grandmother used to have her insurance.

[Joe Shapiro]

Policy nailed on the door, and she.

[Aisha Rascoe]

Would put the money inside this little jacket.

[Joe Shapiro]

And every week or two weeks, whenever.

[Aisha Rascoe]

The insurance guy came, he would mark the book and take the money out with the little book that brings back memories. Yeah, it was probably 50 cent a week, but they had it.

[Joe Shapiro]

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 doll to SSI. That counted as an asset.

[Aisha Rascoe]

We see that all the time.

[Joe Shapiro]

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.

[Aisha Rascoe]

They come to me say, oh, you owe $20,000, $20,000. I mean, that's a lot of money for anybody.

[Joe Shapiro]

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 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 gave her 30 days to pay it back.

[Aisha Rascoe]

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.

[Joe Shapiro]

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.

[Aisha Rascoe]

It's really tiresome. I am so, so through with this, and I can believe that a lot of people just give up.

[Charles Schwab]

The impact of it is just cruel.

[Joe Shapiro]

This is Kathleen Romag. 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 all together.

[Aisha Rascoe]

We know that saving is good.

[Charles Schwab]

We know that we can use savings.

[Aisha Rascoe]

To invest in things that can make.

[Charles Schwab]

People'S lives better, for example, education or.

[Aisha Rascoe]

Safe and stable housing.

[Charles Schwab]

We know that saving is necessary for that.

[Aisha Rascoe]

And yet we're prohibiting some of the.

[Charles Schwab]

Poorest, most vulnerable people from doing just that.

[Joe Shapiro]

By Social Security's own reporting, one in six people on SSI got overpayment notices last year. So that's about 1 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.

[Aisha Rascoe]

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

[Joe Shapiro]

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.

[Aisha Rascoe]

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?

[Joe Shapiro]

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.

[Aisha Rascoe]

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

[Joe Shapiro]

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.

[Aisha Rascoe]

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

[Charles Schwab]

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[Aisha Rascoe]

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[Aisha Rascoe]

Back with the Sunday Story here with NPR correspondent Joe Shapiro. Repeal the marriage penalty.

[Joe Shapiro]

Repeal the marriage penalty. Aisha Last year I went to a protest against what disabled people called SSIs marriage penalty.

[Aisha Rascoe]

If there is anyone here who thinks that disabled people should not be married.

[Joe Shapiro]

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, 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.

[Aisha Rascoe]

All right, here we go. We are now going to recite our vows.

[Joe Shapiro]

Give it a whoop. Whoop. The US Capitol was gleaming in the background over a stage with a large heart of red and pink flowers.

[Aisha Rascoe]

Repeat after me. We would like to get married. We'd like to get married and be able to go to the doctor.

[Joe Shapiro]

Be able to go to the doctor.

[Aisha Rascoe]

We would like to get married.

[Joe Shapiro]

Like to get married and be able.

[Aisha Rascoe]

To pay rent and bills.

[Joe Shapiro]

Be able to pay rent and bills.

[Aisha Rascoe]

And end up not living and not living in a cardboard box.

[Joe Shapiro]

Cardboard box.

[Aisha Rascoe]

By the powers invested in me, I pronounce you all together. You may kiss, hug, high five, handshake, fist bump, whatever works. So, Joe, if people can't get married and still keep their SSI benefits, what do they do?

[Joe Shapiro]

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. 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.

[Aisha Rascoe]

I mean, that 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.

[Joe Shapiro]

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. 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.

[Aisha Rascoe]

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

[Joe Shapiro]

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.

[Aisha Rascoe]

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?

[Joe Shapiro]

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.

[Aisha Rascoe]

Living to my age already is a huge win.

[Joe Shapiro]

She's 40. Medical breakthroughs, new medicines make a longer life possible.

[Aisha Rascoe]

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, work.

[Joe Shapiro]

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.

[Aisha Rascoe]

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

[Joe Shapiro]

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 Tammy Hailey 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.

[Aisha Rascoe]

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 healthcare, which that's what's critical for her.

[Joe Shapiro]

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.

[Aisha Rascoe]

Hand to the left.

[Joe Shapiro]

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.

[Aisha Rascoe]

Can you move the towel one more time? It's gonna forward or back? It's all the way down. All right, that's better. Yeah. Thank you.

[Joe Shapiro]

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

[Aisha Rascoe]

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

[Joe Shapiro]

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.

[Aisha Rascoe]

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.

[Charles Schwab]

Or I could just network and collect.

[Joe Shapiro]

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

[Aisha Rascoe]

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 hundreds and thousands of dollars and really millions in dollars in care that she needs without actually being what she wants to be, which is like a tax paying member of society.

[Joe Shapiro]

That's right. Our benefits 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 one of the only options for someone who needs hours and hours of care and Medicaid. They'll pay for that.

[Aisha Rascoe]

So you've said that there are ways to fix ssi, but what can we expect in a Trump administration?

[Joe Shapiro]

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 is 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 SSIs out of date and overly complex rules.

[Aisha Rascoe]

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.

[Joe Shapiro]

I really appreciate it and I appreciate you, Aisha. Thank you.

[Aisha Rascoe]

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

[Charles Schwab]

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