A mother has been able to care for her son with SSI. But the program also limits them

The government program called Supplemental Security Income has lots of outdated rules that harm the people it’s supposed to help, like people with significant disabilities and their caregivers.

AILSA CHANG, HOST:

Every month, a federal benefits program sends checks to some of the poorest disabled and elderly Americans. But then, months or years later, this program tells them that there’s been some mistake and that they need to pay back the money. Often, that means tens of thousands of dollars that these people don’t have because they are so poor. Now, for the first time, the Social Security Administration, which runs the program, is conceding that it is often at fault. NPR investigative correspondent Joseph Shapiro explains.

JOSEPH SHAPIRO, BYLINE: When a child is born with a significant disability, it changes a family’s life, like for Valerie Smith.

VALERIE SMITH: When I had Courteze, I said, Lord, if you allow Courteze to live, I’ll do whatever I have to do to take care of him and to help him to live.

SHAPIRO: Her son was born with spina bifida – his spinal cord open.

SMITH: The doctors and them – they all kind of, like, gave up. But I didn’t give up. I kept going in every day, praying over him while he was in a tube and everything.

SHAPIRO: The baby stayed in the neonatal intensive care unit for one month.

SMITH: And he lived. And they were saying that he wasn’t even supposed to live as long as he’s living now.

SHAPIRO: For 29 years, Valerie Smith has been her son’s caregiver seven days a week. It’s not easy, although it’s often rewarding. It’s only been possible because of a government program run by Social Security called Supplemental Security Income – or SSI.

SMITH: Tell him what you had brought Sunday.

COURTEZE GOODS: I had bought a T-shirt. One of my friends – he’s a minister, and he owns his own shirt line. So I bought a shirt from him just this past Sunday.

SHAPIRO: From the time he was born, Valerie Smith’s son, Courteze Goods, got a monthly check from SSI. It’s a cash payment to help the family buy food, pay for medical supplies and equipment not covered by insurance – several hundred dollars a month – to afford the rent on the first floor of this subsidized townhouse in Baltimore with a ramp for her son’s wheelchair.

And, with SSI, Courteze became eligible for health insurance through Medicaid, which pays for aids to help him get in and out of bed. With the monthly checks, Smith and her son could live together, go to church frequently, where Courteze is a deacon, and save a little money to buy an inspirational T-shirt.

GOODS: It says…

(Reading) Your challenges in life are designed to change you. It’s not to break you. Keep growing.

SHAPIRO: The average monthly check from SSI is just under $700, sent to 7.5 million people. When SSI was created 51 years ago, the purpose was to lift some of the nation’s poorest people out of poverty, only an NPR investigation finds its rules are so out of date and so complex that the program keeps people in a cycle of poverty. Recipients like Valerie Smith and her son constantly face being penalized by Social Security for confusion over the rules.

(SOUNDBITE OF CAR HORN HONKING)

SHAPIRO: Two years ago…

SMITH: June 6, 2022.

SHAPIRO: Social Security made a mistake and sent Smith’s son an extra SSI check. Smith noticed the mistake right away.

SMITH: (Reading) You should keep this receipt as proof that you made this payment. Your receipt number is…

SHAPIRO: She paid a friend to drive her to the strip mall to the local Social Security office here.

SMITH: I handed them the money order – two money orders that totaled $841.

SHAPIRO: The Social Security worker handed her two receipts. But that wasn’t the end of it. Today, two years later, Social Security keeps sending her collection notices for an overpayment.

SMITH: Correct.

SHAPIRO: What are they saying?

SMITH: No, they just keep sending me threatening notices, saying that I didn’t pay the money back.

SHAPIRO: Even after she kept calling and coming back to the Social Security office and showed them the receipts they wrote to her.

SMITH: And now they’re taking money out my son’s check.

SHAPIRO: One hundred and twenty dollars a month. It’s the money Smith and her son need to survive. This is a common story. Social Security told us there are some $4 billion a year in overpayments. Recently, the new Commissioner for Social Security, Martin O’Malley, told Congress that 1 out of every 6 people who rely upon SSI got an overpayment notice last year.

(SOUNDBITE OF ARCHIVED RECORDING)

MARTIN O’MALLEY: The injustices that we have done to our neighbors when it comes to overpayments…

SHAPIRO: The new Social Security commissioner announced first steps to reduce overpayments and make it easier for people to challenge them. Attorney Debora Wagner at Cornell University’s Institute on Employment and Disability says the problem is with SSIs rules.

DEBORA WAGNER: People don’t understand the rules. They’re very complicated. Or Social Security made the mistake.

SHAPIRO: Wagner notes that people on SSI are required to report – every month – their sources of income. If someone on SSI works – almost always it’s part-time – they’re allowed to earn no more than $65 a month. That limit hasn’t changed since SSI started back in 1972. Anything above $65, social security will take half of it. That’s like a 50% tax on some of the poorest people in America.

When a beneficiary sends in those reports with paystubs and receipts, someone at the agency often needs to type the information into a case file. Social Security’s computer system is long out of date. The agency is understaffed. The rules are complex. Mistakes get made. But Wagner says it might take Social Security months, even years, to notice.

And then one day I get a letter in the mail that says…

WAGNER: That you’ve been overpaid.

SHAPIRO: And I owe what?

WAGNER: I’ve had overpayments pretty standardly in the $30- to $50,000 range.

SHAPIRO: What?

WAGNER: And, occasionally, I’ve had them over 100,000.

JACK SMALLIGAN: The various different types of overpayments – it basically discourages behavior that’s in a beneficiary’s self interest and is ultimately good for the person.

SHAPIRO: Jack Smalligan at the Urban Institute says overpayments are a problem because they penalize people for finding work, for saving money for an emergency, for a house repair. Smalligan, an expert on welfare programs, suggests reform, like figuring out someone’s assets once a year – not every month – and raising the asset limit on how much someone can own and save. It’s just $2,000. It hasn’t changed since 1989.

(SOUNDBITE OF DISHES CLINKING)

SHAPIRO: Back home, Valerie Smith gets lunch for Courteze.

SMITH: A turkey cold-cut sandwich.

SHAPIRO: Caregiving is hard, physical work, with lifting and pulling. When her son was a kid, there were times when, after hip and knee replacement surgeries, he’d be in a heavy, full-body cast. They lived on a second floor then.

SMITH: I would have to carry him up the steps – 16 steps – and bring him down 16 steps.

SHAPIRO: Because Smith left jobs that paid to care full-time for her son, she doesn’t qualify for Social Security retirement income.

SMITH: I had hernias and dislocated disks in my back.

SHAPIRO: She’s 59.

SMITH: I had a stroke. I have a lot. I have rheumatoid arthritis.

SHAPIRO: Wow.

SMITH: I have…

SHAPIRO: Now, after decades of caregiving for her son, she’s disabled. Last year, Valerie Smith qualified for Supplemental Security Income for herself. Now, her benefit checks keep her going as she takes care of her disabled son.

Joseph Shapiro, NPR News.

(SOUNDBITE OF SHYGIRL SONG, “HEAVEN (FEAT. TINASHE)”)

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