MARY LOUISE KELLY, HOST:
Over the past decade, there has been a dramatic drop in the number of poor and disabled children getting help from the federal government. A safety net program called Supplemental Security Income provides money and often health insurance to about a million of these kids. Studies show it lifts many of them out of poverty. But experts estimate that hundreds of thousands of the country's most vulnerable children are missing out on this help. As Gabrielle Emanuel of member station WBUR reports, the stakes are high.
GABRIELLE EMANUEL, BYLINE: Almost every night, Roberta Biscan calls her son, Connor, on FaceTime.
ROBERTA BISCAN: What did you have for supper tonight? Did you have ramen?
CONNOR: Yeah. Yeah, Yeah, I did.
BISCAN: I figured.
CONNOR: Hey, I love it.
EMANUEL: Biscan wishes she could make a home-cooked meal for her son, but he's at a residential school for kids with autism. When Connor was diagnosed as a toddler, Biscan says she felt sad and desperate. One big concern was financial. She'd always planned on working.
BISCAN: I couldn't work for the first 10 years of his life because I was just so busy with therapy appointments, doctor's appointments. I just had to be available. I was a single parent.
EMANUEL: Single parent of Connor and newborn twins. Biscan always lived near family in Massachusetts. She started working in customer service as a teenager, and she liked it. It was in her 30s, with Connor's diagnosis, that she stopped working.
BISCAN: I used to stay up till 1, 2 o'clock in the morning just researching supports and...
EMANUEL: And one night, she stumbled on what would become their lifeline - Supplemental Security Income or SSI. Connor's disability, plus the family's very limited income, qualified them for about $500 a month.
BISCAN: That money was really important so that I could give him some, you know, shelter and food and clothing.
EMANUEL: SSI is a $60 billion program. It dates back to the 1970s and President Richard Nixon. Over its 50-year history, SSI has never reached all the kids who are eligible. Many just don't know about the program. Yet lately, experts have noticed a new trend.
KATHLEEN ROMIG: Over the last 10 years or so, enrollment has declined.
EMANUEL: Kathleen Romig is with the nonpartisan Center on Budget and Policy Priorities.
ROMIG: In fact, in the last few years, SSI enrollment has reached all-time lows per capita.
EMANUEL: For older adults in the program, enrollment has just begun to rebound. But that's not true for kids. Their enrollment is down more than 20%, and applications are down by about half over the course of a decade. The Social Security Administration runs SSI. It declined interview requests. But says in a statement there are a lot of factors behind the falling enrollment, like the COVID shutdown and decreasing birth rates. But Romig thinks one of the biggest issues is money.
ROMIG: Between 2010 and 2023, SSA's customer service budget fell 17% after inflation. Over that same period, their staffing fell 16%.
EMANUEL: Fewer employees is a problem because you have to work with a representative to apply on behalf of a kid. Last year, the agency staffing was at the lowest level in 25 years.
ROMIG: It's been very difficult to get an appointment.
EMANUEL: So it's hard to get in at the front door. At the same time, for those inside, it's more likely they'll be shown the exit. When people get removed from the program, it's often part of something called continuing disability reviews. That's when SSI checks to see if people still qualify for assistance. David Wittenburg, a senior fellow at Mathematica, an analytics group, says for a while, SSI had very limited funding to do these checks.
DAVID WITTENBURG: And then they got administrative funding in 2015 and did a lot of continuing disability reviews.
EMANUEL: The funding to help people enroll in the program has dropped, but the process to remove people from SSI, that's well-funded. Wittenburg says sometimes it's legit to take people off SSI - their disability got better; they earn more money. But sometimes it's because of a mistake.
WITTENBURG: If you submit the wrong paperwork or if you don't file on time, you lose benefits.
BISCAN: So I walked into the house after a week away, with a pile of mail, and I opened it, and I read it, and my jaw dropped. I'm like, what?
EMANUEL: Biscan read that Connor's benefits had been terminated, and she had to repay many thousands of dollars. Her guess is that a bit of financial information was misrecorded. Without SSI, Biscan says she's had difficulty paying utility bills, and she's pulled her kids from recreational activities. For nearly three years, she's been trying to fix the mistake - emailing, faxing, calling.
BISCAN: Calling constantly - no callback, no acknowledgement. It's absolutely a nightmare.
EMANUEL: Other parents have similar frustrations.
DEBORAH HARRIS: You'll get a letter stating that your case might be terminated because they didn't receive the documents requested in a timely manner. And I'm like, that's not true because I've taken time to go get certified mail. So somebody had to sign for that mail.
EMANUEL: That's Deborah Harris of Maryland, who's navigating SSI on behalf of a grandchild. For Terri Farrel of Massachusetts, it's her son.
TERRI FARREL: You're told where to go, right? But instead of being given a 10-speed bike, you're given a tricycle with two wheels.
EMANUEL: Their concerns have reached Washington.
RON WYDEN: Let's at least get rid of the bureaucratic water torture.
EMANUEL: Senator Ron Wyden, a Democrat from Oregon, says a lot of SSI's bureaucratic problems do come down to money.
WYDEN: It's my job as chairman of the Senate Finance Committee to find additional resources, and I'm committed to doing it.
EMANUEL: Widen says another part of the problem is outdated and overly-restrictive requirements. He's drafted a bill to modernize the program.
WYDEN: It's time to bring SSI into the 21st century. It's not been updated in 40 years.
EMANUEL: But his bill's price tag, $500 billion over 10 years, making some experts skeptical about its prospects. Research shows the falling enrollment impacts everyone. When young people are removed from SSI...
MANASI DESHPANDE: A lot of them are turning to illicit activity. And that is then increasing the likelihood that they spend time in prison.
EMANUEL: Manasi Deshpande is an economist at the University of Chicago. She compared 18-year-olds who lost their SSI benefits to those who stayed on the program. When checks were cut off, she found a 60% increase in criminal charges for crimes that help make up for lost money.
DESHPANDE: For men, we see increases in drug distribution and burglary, whereas for women we see increases in prostitution charges and things like identity theft.
EMANUEL: By her estimates, the federal government saves as much money in taking young people off SSI as state and local governments pay out in policing and prison costs for the same people.
DESHPANDE: The big takeaway is that SSI has big benefits for young people and for society, and in particular, the first thing that SSI is doing is preventing crime.
EMANUEL: Experts are brainstorming how to boost SSI enrollment for kids. Some say enlist schools to help and coordinate with children's hospitals. Others say put the application online. The Social Security Administration says it's working on several fronts to reach out to families. For parents like Roberta Biscan, SSI is a lifeline, but a fragile one.
BISCAN: I feel like there has to be a change, a desperate change.
EMANUEL: She and others hope the program can become simpler and stronger for everyone's sake. For NPR News, I'm Gabrielle Emanuel.
(SOUNDBITE OF BUN B AND STATIK SELEKTAH SONG, "STILL TRILL") Transcript provided by NPR, Copyright NPR.