Alexis Madrigal: Welcome to Forum. I’m Alexis Madrigal. Sometimes it’s hard to believe how our country works — not because it’s so wild and crazy, but because it can be so callous and cruel. Supplemental Security Income, or SSI, provides a monetary floor for people who cannot work. And because people need to work to live in our country, without this money they might not be able to lead decent lives.
It’s not a lot of money — some hundreds of dollars — and it is meticulously policed, policed in ways that we only subject the poor to. At a time when the Trump administration has requested one and a half trillion dollars for the Pentagon, we’ve got people filling out paperwork month after month so they can get a few hundred dollars to eke out a life. And right now, there’s a proposed change that could make life even tougher for poor families with disabled adult children, all to save what is essentially nothing in the scheme of the American budgetary fiasco.
We’re talking about a program that costs sixty-two billion dollars, about eighty-five percent of which goes to people with disabilities. So a teensy tiny fraction of what has been proposed for, for example, the military budget.
To tell us about this rule change, we’re joined first by Eli Hager, a reporter who writes about issues affecting poor and working-class people across the country for ProPublica. His recent article is titled “The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families.” Welcome to Forum, Eli.
Eli Hager: Thank you for having me.
Alexis Madrigal: Yeah. Thanks for joining us. So tell us about the lead character in your story, Shy’tyra Burton. Who is she, and what’s her life like?
Eli Hager: So we at ProPublica wrote about someone named Shy’tyra Burton, who lives in Philadelphia. She’s twenty-two years old. She had a difficult beginning to her life, to say the least. She was born two months prematurely. She was largely living in medical facilities and hospitals until age four. She was diagnosed with Tourette syndrome and several different intellectual disabilities that have left her with a documented IQ of below seventy.
Despite all of that, and also growing up in a poor family, she graduated from a special education program and went off to community college to try to learn about child development. She wanted to go into a career in that field to serve children like herself. But she struggled a lot with that and then couldn’t get hired at various jobs, including at McDonald’s.
Anyway, because she has been unable to support herself as a twenty-two-year-old due to her disabilities, she still lives at home with her father, and she relies on Supplemental Security Income, which she gets from the federal government. She had to go through various medical and psychological evaluations, and there was a hearing before a judge. So she went through all of that to get this basic income to support herself.
Alexis Madrigal: And her family is not a wealthy family. What does her father do?
Eli Hager: He’s a sanitation worker for the city of Philadelphia. He’s done various types of work within that role. He’s loaded and unloaded garbage trucks. He’s worked at the sanitation yard where the garbage trucks come in. At certain points, he was working overnight from eleven p.m. to seven a.m. So that’s been his work.
Alexis Madrigal: Yeah. So how much money does she get from this SSI program?
Eli Hager: She currently gets nine hundred ninety-four dollars a month.
Alexis Madrigal: And that’s supposed to be enough to live on? Or is it really just supplemental, right there in the name?
Eli Hager: Right. I mean, it’s supposed to be a sort of basic income for people who, due to a severe disability or being indigent in old age, are unable to support themselves. Obviously, given the prices of things now and what rent costs, nine hundred ninety-four dollars a month isn’t going to fully support someone. That’s why so many people who rely on SSI and who have disabilities live with their families.
Alexis Madrigal: If they didn’t live with their families, you can’t really pay for an apartment with that in most places in this country. So where would people live, or how would it work?
Eli Hager: Right. That’s one of the big questions here. If you’re unable to live with family, in part because perhaps your family can’t afford to have you in the household, some of the other options are group homes or nursing homes or other institutional facilities — for example, for adults with Down syndrome or types of autism that have left someone nonverbal, or different disabilities like that.
So Shy’tyra could potentially live in a group home or a nursing home operated privately or by the state of Pennsylvania.
Alexis Madrigal: But instead, she lives with her family, and her family qualifies for SNAP — food stamps, as people might know them. So how would this proposed rule change affect her life or her family?
Eli Hager: So there’s a simple answer and a complicated answer to that.
The simple version is that this rule change would cut her monthly SSI benefit by a third, which in her case would be about three hundred thirty dollars, and make it much more difficult for her to do the things that she currently does, like pay for her own cell phone and internet, help her dad with utilities in the household, and pay for her own meals.
The more complex version is that many SSI beneficiaries are actually already penalized for living at home with family. The idea being that if you’re getting a bedroom from your family, that’s a form of income that should be calculated against your monthly SSI benefit.
But those are generally more middle-class families, where the family really can support that person, and so their SSI benefit is reduced because they’re getting that help from family. With lower-income families — which the government determines based on whether they rely on public assistance programs like TANF, which used to be known as welfare, veterans benefits, or various other public assistance programs — you’re supposed to be exempted from that reduction to your SSI because the idea is that you’re in a low-income household. They can’t just support you, and you really need that full SSI amount.
What this Trump administration change would do is remove SNAP from the list of public assistance programs. SNAP is one of the largest public assistance programs, and so any household that receives SNAP will no longer be eligible for this exemption.
So Shy’tyra would now be penalized for living with her dad. She would have her support cut by about three hundred dollars, and she would also have to, potentially as often as every month, fill out paperwork and report to a Social Security field office if anything changes about her living arrangement — like how she splits utilities or whether one of her siblings helps her out with living expenses. She would have to report all of that to the federal government.
Alexis Madrigal: And how does one qualify for SNAP? What would the cutoff be there? I mean, these are people who already aren’t making much money at all.
Eli Hager: Right. Well, there are all kinds of cutoffs for SNAP. The Trump administration’s “One Big Beautiful Bill Act” will change those dynamics even more. But generally, you have to be low income to receive SNAP. Your income is repeatedly reviewed by the federal government to qualify, and there are also extensive work requirements and all the other changes that were made in that bill that passed last year.
So it’s already a very difficult barrier to clear to receive SNAP, and most of these families are very low income.
Alexis Madrigal: Wow. So how many people would be affected by this if the proposed change gets solidified?
Eli Hager: We used actuarial estimates from the Social Security Administration and estimated that over the next several years, as many as four hundred thousand Americans could have their SSI benefits reduced or cut entirely due to some of those administrative burdens. So that’s our estimate — as many as four hundred thousand people with disabilities and older people.
Alexis Madrigal: If you’re hearing about this for the first time, you might imagine families where there’s an adult child with Down syndrome, they’re already very low income, and the money being saved doesn’t really do anything to cut the federal deficit. So how do you contextualize why this is happening? Is there a large percentage of fraud in SSI? What’s the hypothetical reason here?
Eli Hager: Well, there are sort of two reasons.
One is that the Biden administration expanded the definitions of what was called a public assistance household to make more households eligible for the exemptions I was talking about before. The Trump administration came in — including Russell Vought, the White House budget director — with a lot of ideas for every agency about how they could reverse things the Biden administration had touched. So this generally falls into that category: something the Biden administration had affected and that the White House was interested in reversing.
The larger reason is that some conservative think tanks had made the case about this particular rule — that it would save the federal government money not to spend that extra three hundred dollars a month on somebody like Shy’tyra, which is accurate.
But if you look at the overall cost to taxpayers, if Shy’tyra were no longer able to live at home with her father because he couldn’t afford to support her anymore, she would likely end up in a group home, institutional facility, or nursing home. That would cost taxpayers much more, whether that facility is funded by Medicaid or otherwise.
We actually looked at the numbers in Pennsylvania. Taxpayers would save about eleven dollars a day from no longer providing this SSI income to Shy’tyra, but it would cost hundreds of dollars a day if she instead had to live in an institutional facility.
Alexis Madrigal: We’re talking about a proposed rule change to Supplemental Security Income, or SSI, and we’re going to expand the conversation out to talk about the history of this program and what it’s like for people here in the Bay Area who make use of it.
We’re joined first by Eli Hager, a reporter for ProPublica. The article that inspired the show is called “The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families.”
We want to hear from you. Do you use SSI? Does a loved one? What’s your experience been like? Could this rule affect your life or the lives of people around you?
Give us a call. The number is 866-733-6786. That’s 866-733-6786. The email is forum@kqed.org if it’s easier for you to share your story that way. Or, of course, you can find us on social media too — BlueSky, Instagram, Discord — we’re @KQEDForum.
I’m Alexis Madrigal. We’ll be back with more after the break.
