Woods, 51, said she had rented a three-bedroom house she shared with her adult son and grandson until March 2022, when the government terminated her disability payments without notice.

According to letters sent by the Social Security Administration, the agency determined it had been overpaying Woods and demanded she send back nearly $58,000.

Woods couldn’t come up with the money. So, until February 2026, the agency is withholding the $2,048 in disability she would have received each month.

“I still don’t know how it happened,” said Woods, who has requested a waiver and is seeking a hearing. “No one will give me answers. It takes weeks or months to get a caseworker on the phone. They have made my life unbearable.”

Kilolo Kijakazi, acting commissioner of the Social Security Administration, told a congressional subcommittee in October that her agency notifies recipients when they have received overpayments and works to “help those who want to establish repayment plans or who seek waiver of the debt.”

But relief from overpayments goes to only a relatively small number of people. And many others face dire consequences: Some become homeless, are evicted from rental housing, or see their mortgages fall into foreclosure.

The SSA has a painful legacy of excluding Black people from benefits. Today the agency’s own published research shows its overpayments most often hit Black and Hispanic people, the poorest of the poor, those with the least education, and those whose medical conditions are unlikely to improve.

Woods is one of millions who have been targeted in the Social Security Administration’s attempt to claw back billions of dollars it says was wrongly sent to beneficiaries. Years can pass before the agency catches a mistake, and even the little bit extra it might send each month can add up.

In reclaiming it, the government is imposing debts that can reach tens of thousands of dollars against those least able to pay.

(WHIO, Dayton)

‘Wreaking Havoc in People’s Lives’

KFF Health News and Cox Media Group reporters interviewed people who have received overpayment notices and nonprofit attorneys who advocate for them and reviewed SSA publications, policy papers, and congressional testimony.

A 64-year-old Florida man said he could no longer afford rent after his Social Security retirement payments were garnished last year because he allegedly had been overpaid $35,176 in disability benefits. He said he now lives in a tent in the woods. A 24-year-old Pennsylvania woman living with her mother and younger siblings in public housing lost the chance to buy her own home because of an alleged $6,063 overpayment that accrued when she was a child.

“Social Security overpayments are wreaking havoc in people’s lives,” said Jen Burdick, an attorney with Community Legal Services of Philadelphia, which represents clients who have received overpayment notices. “They are asking the poorest among us to account for every dollar they get. Under their rules, some people can save up money for a funeral burial but not enough to get housing.”

Woods has lupus and congestive heart failure and struggles to walk, but she started working part-time after her benefits were rescinded. She said she makes $14 an hour transporting railroad crew members in her 2015 Chevy Equinox between Savannah and Jacksonville, Florida, when she can get assignments and her health allows it.

The SUV costs $386 a month — a large portion of her income — but without it, Woods said, she would not have a job or a place to sleep.

“My life is just survival now,” Woods said. “Sometimes I feel like I am just waiting to die.”

The Social Security Administration has said it is required by law to attempt to recover overpayments. Notices ask beneficiaries to repay the money directly. Authorities can also recoup money by reducing or halting monthly benefits and garnishing wages and federal tax refunds.

Agency officials describe an orderly process in which they explain to beneficiaries the reason for the overpayment and offer the chance to appeal the decision and have the charges waived if they cannot afford it. One way to qualify for a waiver is if “paying us back would mean you could not pay your bills for food, clothing, housing, medical care or other necessary expenses,” according to a letter sent to one recipient.

Those most impacted by Social Security’s decisions, including people with disabilities and widows receiving survivors’ benefits, paint a different picture. They talk about having their benefits terminated without explanation or warning, an appeals process that can drag on for years, and an inability to get answers from the SSA to even basic questions.

Nancy Altman, president of Social Security Works, a group that pushes for the protection and expansion of the program, recalled how stressful it was when a colleague’s mother received an overpayment notice.

“After weeks of nonstop phone calls, he was able to get the matter resolved, but not before it put his mother in the hospital,” Altman said. “One can just imagine how much worse it would be for someone for whom English is not their native language, who lacks a high school education, and who is unassisted by such a knowledgeable and caring advocate.”

Problems surrounding the Social Security Administration are aggravated by congressional actions, including funding shortages that brought agency staffing to a 25-year low by the end of fiscal year 2022. Even so, advocates for people with disabilities say the agency does far less than it could to help people who have been overpaid, often through no fault of their own.

They said challenges faced by beneficiaries underscore how overpayments disproportionately impact Black people and other minority groups even as President Joe Biden and Social Security leaders promise to fix racial inequity in government programs.

Most overpayments are linked to the Supplemental Security Income program, which gives money to people with little or no income who are disabled, blind, or at least 65. The majority of SSI recipients are Black, Hispanic, or Asian people.

“Congress has turned a blind eye to this,” said David Weaver, a former associate commissioner for research, demonstration, and employment support at the SSA. Politicians “just want to save money. It is misplaced priorities. It is completely inexcusable.”

The Social Security Administration did not make its leaders available for an interview. Spokesperson Nicole Tiggemann declined to answer questions about the cases of Woods and other beneficiaries, citing privacy laws.

In a written statement, Tiggemann acknowledged that receiving an overpayment notice can be “unsettling,” but said the agency helps beneficiaries navigate the process and informs them of their rights if they believe they were not at fault or cannot repay the debt.

“Even if they do not want to appeal or request a waiver, the notice says to contact us if the planned withholding would cause hardship,” Tiggemann said. “We have flexible repayment options — including repayment of as low as $10 per month. Each person’s situation is unique, and we handle overpayments on a case-by-case basis.”

Critics say fighting an overpayment notice is not that simple.

Beneficiaries — many challenged by physical, mental, or intellectual disabilities — often are overwhelmed by complex paperwork or unable to find financial documents that may be years old.

The Social Security Administration has the authority to waive overpayments if officials determine recovering them would violate “equity and good conscience,” or the disputed amount falls below certain thresholds. The agency’s guidance also says collecting an overpayment “defeats the purpose” when the “individual needs substantially all of their current income to meet their current ordinary and necessary living expenses.”

Advocates for people with disabilities contend most overpayments arise from delays in processing paperwork and errors by the Social Security Administration or recipients making innocent mistakes. The agency can waive overpayments when the beneficiary is found not at fault.

But in fiscal year 2023, the Social Security Administration collected about $4.9 billion in overpayments with an additional $23 billion yet uncollected, according to an agency report. Just $267 million was waived, the report said.

David Camp, the interim chief executive officer of the National Organization of Social Security Claimants’ Representatives, which advocates for improvements in federal disability programs, said the Social Security Administration is a “broken structure.”

The agency sometimes tries to claw back overpayments from people falsely accused of failing to provide required documents, Camp said.

“Dropping off forms at their field offices is not a guarantee” paperwork will be processed, he said. “Mail is slow, or it doesn’t get opened. We see it so many times you are left with the idea that has to do with the structure.”

(WFXT, Boston)

Left Destitute

Advocacy groups and others said they don’t know how many people become homeless after their benefits are terminated, but they say anecdotal accounts are common.

A study found that more than 800,000 disability applicants from 2007 to 2017 experienced homelessness. Advocates say it only makes sense that overpayments could lead more people to become homeless, since nearly 40% of people receiving disability benefits experience food insecurity and cannot keep up with their rent and utility bills, according to research.

Ronald Harrell sleeps in the woods near Wildwood, Florida, about 50 miles northwest of Orlando. He said he shelters in a tent, cooks his meals on a small grill, and showers at a friend’s house.

Harrell, 64, said he rented a room in a house for $125 a week until last year, when the Social Security Administration cut off his retirement benefits.

A letter the SSA sent him, dated Feb. 6, 2023, says his benefits are being withheld because of overpayment of $35,176 that accrued when Harrell received disability payments. The letter acknowledges he has asked the agency to lower his payments.

“I don’t know how they are doing this to me,” Harrell said. “I did everything by the law.”

Harrell said he once worked as an HVAC technician, but nerve damage left him unable to work sometime around 2002.

He said he collected disability benefits until about 2009, when rehabilitation allowed him to return to the workforce, and he said he reported the information to the federal government. Harrell said he applied for early Social Security retirement benefits last year when his health again declined.

“I started working when I was 16,” Harrell said. “I never thought my life would be like this.”

Kijakazi, the acting Social Security commissioner, and others have said overpayments stem at least partly from low staffing and budget cuts.

From 2010 to 2023, the agency’s customer service budget dropped by 17%, after inflation, according to a report by the Center on Budget and Policy Priorities, a think tank that conducts research on government programs.

At the same time, the report says, the number of Social Security beneficiaries grew by nearly 12 million people, or 22%.

Jonathan Stein, a former attorney with Community Legal Services of Philadelphia who has participated in workgroups and meetings with federal officials about access to Social Security payments for vulnerable populations, said budget cuts cannot fully account for the agency’s penchant for denying applications and terminating benefits.

Officials suspended Supplemental Security Income benefits for about 136,540 people in 2019 for “failure to furnish report,” which means they did not meet deadlines or paperwork requirements, Stein said, despite knowing many of those people were unable to contact the agency because they are homeless or have been evicted and lost access to phones and computers.

That’s more than double the number in 2010, he said.

“They have an implicit bias for denying benefits,” Stein said. “It is a very skewed view of integrity. It reinforces a culture of suspicion and prosecution of applicants.”

The 24-year-old Pennsylvania woman who received Supplemental Security Income as a child because of a learning disability described her ordeal on the condition that her name not be published. A letter from the Social Security Administration says she received an overpayment notice for more than $6,000.

“It was frustrating,” the woman said. “You are dealing with nasty people on the phone. I couldn’t get any answers.”

In November 2022, she contacted a nonprofit law firm, which helped her file an appeal. One year later, she received another letter from Social Security saying the overpayment had been waived because it was not her fault. The letter also said officials would not seek repayment because she could not afford basic needs such as food and housing without the monthly benefits.

The woman had already paid a price.

She lived in public housing and the Philadelphia Housing Authority had offered her a chance to fulfill a long-held goal of owning a house. But when the overpayment appeared on her credit report, she said, she could not obtain a mortgage.

“I was excited about getting my own home,” she said. “That’s what everybody wants. Losing it is not a good feeling.”

David Hilzenrath of KFF Health News, Jodie Fleischer of Cox Media Group, and Ben Becker of ActionNewsJax in Jacksonville, Florida, contributed to this report.

Do you have an experience with Social Security overpayments you’d like to share? Click here to contact our reporting team.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

Testing at the time “was outside of communities of color,” said the Rev. Jordan Boyd, pastor of Rockwell AME Zion Church in Charlotte. For Boyd, pandemic losses were personal: Covid-related complications killed a brother-in-law who worked as a truck driver. “We saw what was happening with our folks.”

Mandy Cohen, who led the state’s pandemic response as secretary of North Carolina’s health department, had said widespread testing was one of “our best tools to keep our community safe and to protect our frontline workers.” But the state was failing to get tests to its most vulnerable people, with grim consequences: Black people in North Carolina were getting sick and dying from covid-related causes at far higher rates than white people, data show.

California Healthline analyzed and confirmed publicly available data, including the location of testing sites that Cohen’s office directed the public to in mid-May 2020 in Mecklenburg County, home to Charlotte, the state’s largest city. Just 1 in 4 fixed sites stood in more disadvantaged areas with significant Black populations, including what is known as the Crescent, neighborhoods reaching west, north, and east of downtown that for generations have had elevated rates of diabetes, high blood pressure, lung disease, and other conditions that can cause life-threatening complications from covid. Far more testing was available in south Charlotte and suburban areas — the whiter, wealthier neighborhoods.

Life in the Crescent is marked by higher rates of poverty, crowded housing, and less access to health care, transportation, and internet service — factors that fueled transmission of the virus and created barriers to testing.

“There were a lot of hurdles that you had to go through,” said Boyd, who helped spearhead the effort to bring testing to Black churches.

President Joe Biden and others in political and health policy circles have praised Cohen’s pandemic leadership in North Carolina. Biden in June cited her “proven track-record protecting Americans’ health and safety” when elevating Cohen to run the Centers for Disease Control and Prevention, the nation’s top public health agency.

Those on the ground in North Carolina’s most vulnerable communities, including Cohen’s admirers, tell another story — about living with the downsides of the state’s emergency response. These include advocates for groups that were disproportionately harmed during the public health crisis, including minority and immigrant communities, people with disabilities, and families of nursing home residents.

Corine Mack, president of the Charlotte-Mecklenburg NAACP, recalled that in late 2020 she and others complained to Cohen about public money going to white-led organizations instead of Black-led ones working in minority neighborhoods.

“I said we had to send resources tomorrow, not next month,” Mack said. “She started crying. I was so passionate about our people dying. Once she understood the severity of the situation, she did what she had to do.”

The challenges Cohen faced in North Carolina were exacerbated by structural inequities in and outside the health care system, problems that are too large for any one person to fix. Still, Cohen now faces the same challenges on a national scale, as she’s charged with fixing the CDC after its pandemic missteps.

Cohen, through her spokesperson at the CDC, declined multiple requests for an interview.

A report in January called “Building the CDC the Country Needs,” which was signed by dozens of health policy experts, urged an agency overhaul. Among the priorities cited: more quickly collecting data on racial, ethnic, economic, and geographic factors that is “foundational to improving equity of access to services.”

For most of the pandemic, Black, Hispanic, and Native Americans fared worse than whites across the country.

In North Carolina, critics and allies alike say Cohen heeded concerns. She relied heavily on data and followed federal guidance closely, they said. And Cohen showed vigilance when she interpreted rules, like those on nursing home visitation and mask mandates, even in the face of criticism.

She also repeatedly urged personal responsibility to contain the spread of the virus, underscoring how public health messaging often focuses on choice rather than societal constraints, said Anne Sosin, a researcher at Dartmouth College who focuses on health equity.

“Many of the people and communities hardest-hit by the pandemic had little choice in their exposure” because they got covid where they lived or worked, Sosin said. “Limiting our focus on the choices that people make — rather than on the broader structural and social forces that shape risk — really will set us up for the same failures in the future.”

With more than 1 million residents, Mecklenburg County has become a symbol both of North Carolina’s economic rise and of its struggles to overcome a long history of racial discrimination and disparities. A short drive from the headquarters of Fortune 500 companies, such as Bank of America and Honeywell, sit minority neighborhoods plagued by poverty. A national study on social mobility found that, among the 50 largest cities, Charlotte was the hardest place for a child to move from poverty to the upper class.

Researchers from North Carolina’s health agency and the University of North Carolina found that access to tests during the first three months of the pandemic — between March and June 2020 — was not evenly distributed across racial and ethnic groups, with inadequate access for Black and Latino residents.

On May 14, 2020 — two months after the national emergency was declared — Cohen’s agency directed clinicians to prioritize testing for people from “racial and ethnic minority groups disproportionately affected by adverse COVID-19 outcomes,” and officials recommended using mobile testing for “vulnerable populations,” documents show.

The disparities persisted. In Charlotte, the difference in testing sites underscored the inequity people of color often face in health care, as they were left to depend on a few mobile units whose routes and hours varied by the day. Meanwhile, wealthier areas had an abundance of well-resourced, fixed sites with regular hours.

Critics say the state was slow to address glaring and predictable problems. Mecklenburg County Commissioner Pat Cotham, a Democrat, said it took authorities precious time to shift testing to the hardest-hit neighborhoods. Cotham said officials should have more quickly enlisted Black ministers and others who had established trust with residents. Instead, she said, even elected representatives of those areas were often locked out. “I remember getting information from press releases or TV,” she said.

North Carolina initially failed to prioritize testing for people who were exposed to covid because of where they live or work, said Jeanne Milliken Bonds, a professor of social impact investing at the University of North Carolina. She co-authored a white paper that criticized the national pandemic response, saying, “We are ignoring the critical impact of systemic racism in vulnerabilities to the deadly virus.”

Black people, immigrants, and ethnic minorities disproportionately hold jobs that governments deemed essential — in food processing plants, retail stores, and nursing homes — and they were unable to isolate and work from home, Milliken Bonds said.

Charlotte had one of the biggest disparities in access to testing in the nation, according to a study of 30 large cities by researchers at Drexel and Temple universities. Only Austin and Houston in Texas fared worse.

In 2020, Black people in North Carolina died from covid at a higher rate than white people, although the disparity was slightly less pronounced than in the U.S. overall. A California Healthline analysis of CDC data shows that 112 of every 100,000 non-Hispanic Black residents in the state died, compared with 89 per 100,000 non-Hispanic white residents. North Carolina’s death rates for all racial and ethnic groups that year were lower than those nationally.

“The driving factor for testing and vaccination was, ‘Let’s get older people and let’s protect our health care workers,’” Milliken Bonds said. “You end up losing the health equity lens. There was a course correction later in 2020. They looked at the data and said, ‘Oh my God!’ They were missing people of color.”

Tensions Rose

In April 2020, when covid tests were scarce nationally and states had little federal support, Cohen’s Department of Health and Human Services convened a work group to increase testing. The initiative began as Democratic Gov. Roy Cooper indicated he would ease the restrictions he’d put in place in March to limit covid’s spread.

The group included state employees, consultants, local officials, and representatives from major hospital systems, community health centers, and commercial labs, North Carolina HHS news releases and state documents show. Officials set priority groups for testing, including hospitalized patients, health care workers and first responders, and people in long-term care or correctional facilities, according to meeting minutes from April 24. The last item: “additional emphasis on equity and ensuring communities of color have access to testing.”

The state also received guidance from experts focused on equity.

“We know that there’s more covid-19 out in our communities than gets captured by what’s in our lab data,” Cohen said April 30, during one of Cooper’s pandemic briefings.

Of the covid test results reported to North Carolina’s health department at that time, a smaller share were coming back positive relative to prior weeks, and covid hospitalizations were level — developments Cohen hailed as progress. But tensions were brewing.

By May 5, Disability Rights North Carolina filed a civil rights complaint with the U.S. Department of Health and Human Services about a proposed state emergency plan. The advocacy group said the plan — which determined who would get lifesaving treatments in hospitals if supplies were scarce — would put people with disabilities in the “back of the line” and lead to a disproportionate death toll among people of color or with low incomes.

As the state began reopening businesses in early May, officials knew testing levels were not adequate, according to a review of public documents, interviews, and Cohen’s public remarks. Hundreds of sites were up and running, “but there’s more to do,” Cohen said May 20.

In a letter in the North Carolina Medical Journal, North Carolina HHS employees and a consultant with Accenture said “testing was difficult to access outside of a hospital” that month. “Of the tests being performed early in the pandemic, the majority were in White populations even though we could already see differences in poor outcomes in Black/African American, American Indian/Alaskan Native, and Latinx populations infected with the virus around the country,” they wrote.

Kody Kinsley, who worked for Cohen and succeeded her as health secretary, said the state’s response was stymied by factors beyond its control, including supply chain shortages. “We were essentially riding the backbone of the existing health care network with inadequate supplies,” Kinsley said. The department tried to contract with outside firms to boost testing access in historically marginalized communities, but “resources weren’t available.”

Boyd, the pastor, said it was “difficult times.” To reach hard-hit communities across the state, “you have to be able to do that through connections on the ground,” he said. “Otherwise it’s not going to happen. But that takes time.”

In Charlotte, he said, fixed testing sites at hospitals and elsewhere, which required appointments, weren’t as accessible for those in the city’s poorest neighborhoods. “You had to go online and sign up,” he said.

Black residents were desperate for testing: When a mobile van run by Atrium Health, the dominant hospital system in Charlotte, arrived at Boyd’s church in early May, “Cars were lined up around the block at 4 or 5 o’clock in the morning,” he said.

Atrium’s mobile testing started in April, circulating in minority communities where data showed emerging hot spots. While people could walk up to get a test, locations shifted daily, according to internet archives, social media posts, and other announcements. Between mid-April and early July, the units stopped at many Black churches only once.

“We were last on the list. We lost a lot of people,” said Vilma Leake, a Democratic member of the Mecklenburg Board of County Commissioners. Leake said she never received a satisfactory answer when she asked why people of color were not prioritized for testing given the South’s long history of racial exclusion and wide disparities in health, education, and income. “History is repeating itself. It is always a fight for some people,” she added.

Kinsley said the state’s response “was intentionally designed to be conscious of class and race and ethnicity,” which he said informed its guidance for essential workers and efforts to push businesses to provide paid leave and on-the-job covid tests.

By late spring, the state’s testing data, which captured only a fraction of infections, painted a troubling picture. As of May 26, Black residents made up 31% of cases and 35% of deaths despite being 22% of the state’s population. Latinos made up 9.6% of the state’s population and 35% of covid cases.

That same day, Cohen stood at Cooper’s pandemic briefing. While she described the state’s efforts to improve safety for workers at meat processing plants, she again called for personal responsibility.

“Our ability to continue to ease restrictions and get back to work as safely as possible hinges on all of us working together to protect each other,” Cohen said, adding, “We want to save lives. And we can do that with simple individual actions.” By that time, North Carolina had allowed restaurants, pools, and personal care businesses such as barbers to open at 50% capacity.

The state’s response “was not adequate for protecting essential workers,” said the Rev. Rodney Sadler, the director of the Center for Social Justice and Reconciliation at Union Presbyterian Seminary.

“It was targeted toward those who had resources, who had a knowledge base, who had greater freedoms, who had the ability to work from home,” he said, adding that it’s important to “think about how this hits differently for poor Black and brown people in inner-city communities than it does for wealthier, white communities in the suburbs.”

The Rev. Greg Jarrell helps lead QC Family Tree, a social justice organization in Enderly Park, a Black neighborhood near downtown Charlotte that is gentrifying. He said people often waited hours for testing at a site near his neighborhood, even with appointments.

“We saw the severe limitations of the whole system,” he said. “Who has got time to sit in line for three hours? Not an hourly employee.”

If you don’t set up “race-conscious and class-conscious policy,” Jarrell said, “the system is always going to serve people who have more resources.”

Throughout June, as North Carolina’s covid infections and hospitalizations climbed, the state focused more intensely on Black, Latino, and Native American residents. It took until July 7 for officials to announce they would deploy 300 free temporary testing sites in underserved communities across the state.

The state’s covid death toll had reached 1,420 people, and 989 more were hospitalized. The trajectory, Cohen said, was “moving in the wrong direction.”

A Bigger Challenge at the CDC

Political leaders, public health experts, and advocacy groups say Cohen is well suited to run the CDC.

She has navigated vast government agencies — experience her predecessor, Rochelle Walensky, lacked. Cohen has political acumen, having worked effectively in a politically divided state “with a range of views about public health,” said Tom Inglesby, director of the Johns Hopkins Center for Health Security and a former senior White House adviser on covid response. “She is super bright and a very clear communicator about the issues on the table.”

During the Obama administration, Cohen, a physician, climbed the ranks to become chief operating officer and chief of staff at the Centers for Medicare & Medicaid Services, which has more than 6,000 employees and oversees government programs like Medicare and Medicaid that insure millions of Americans. In 2017 Cooper appointed her North Carolina health secretary. She stepped down at the end of 2021.

Cohen’s time “in North Carolina will inform the practical, on-the-ground work that will make a big difference at the CDC,” Kinsley said, citing efforts to minimize racial and ethnic disparities in covid vaccination.

According to CDC data comparing covid mortality rates by state, North Carolina had the 12th lowest age-adjusted death rate in 2020. But the state’s fortunes changed in 2021, when it dropped to 30th place. North Carolinians said Cohen listened to their perspectives, but their calls for help were punctuated by a drumbeat of deaths.

Mecklenburg County Commissioner Mark Jerrell, a Democrat, said the pandemic exposed how North Carolina is still reeling from centuries of racial discrimination. Even as Cohen “became a trusted community voice,” he said, “there was a disconnect between the discussion of equity and the application of equity.”

He worries that painful lessons of those early pandemic months seem forgotten, saying, “We don’t even hear this conversation now.”

Data reporter Hannah Recht contributed to this story.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

The former Louisiana state office worker struggled at times to write her name or carry a glass of water. Powell, then 62, believed she could no longer work, and she was worried about how to pay for medical care with only a $433 monthly pension.

Although the Social Security Administration agreed that Powell’s condition limited the work she could do, the agency rejected her initial application for Supplemental Security Income. She had the choice to appeal that decision, which could take months or years to resolve, or take early retirement. The latter option would give her $302 a month now but might permanently reduce the full Social Security retirement payment she would be eligible for at age 66 and 10 months.

“I didn’t know what to do. These decisions are not easy,” said Powell, who lives in Alexandria, Louisiana, about 200 miles northwest of New Orleans. She decided to appeal the decision but take early retirement in the meantime.

“I had to have more money to pay my bills,” she said. “I had nothing left over for gas.”

Every year, tens of thousands of people who are disabled and unable to work consider taking early retirement benefits from Social Security. The underfunded federal disability system acknowledges that it is stymied by delays and dysfunction, even as over 1 million people await a decision on their benefits application.

The United States, which has one of the least generous disability programs among developed Western nations, denies most initial claims, leaving applicants to endure a lengthy appeals process.

At the same time, Social Security agents may neglect to explain the financial downside of taking retirement benefits too early, said attorneys who help patients file disability claims. The result is a growing population of vulnerable people who feel stuck between a proverbial rock and a hard place — to live with little money while they wait it out or agree to a significantly lower payment for the rest of their lives.

“They don’t have the luxury of waiting,” said Charles T. Hall, a disability attorney based in Raleigh, North Carolina. “The vast majority of people need the money now, and you can get early retirement benefits in two months or less.”

In a nation where more than a quarter of residents have a disability, Social Security Disability Insurance and Supplemental Security Income programs are intended to provide financial help to people who cannot work.

Retirement experts generally recommend senior citizens tap into their Social Security benefits as late as they can, to maximize the amount of money they receive from the federal government. For someone born after 1960, taking benefits at age 62 — the earliest age people are eligible — instead of 67 reduces each monthly payment by as much as 30% for the rest of a person’s life, said Richard Johnson, a senior fellow and the director of the Program on Retirement Policy at the Urban Institute, a nonprofit research organization.

Someone who applies for Supplemental Security Income, or early retirement, would get $914 a month if they can prove they are older than 65, blind, or have a disabling medical condition. Social Security Disability Insurance pays an average monthly benefit of $1,483 to those who suffered a disabling injury or illness and paid a federal tax that was deducted from their paychecks in the past.

Social Security agents will inform people of their ability to obtain early retirement benefits. But they might not explain the downsides, said Sam Byker, CEO and founder of Atticus, a California-based group that connects people seeking disability benefits with attorneys around the country. His organization found that among a sample of 765 clients ages 62-66 seeking Social Security Disability Insurance, 44% were already receiving early retirement.

Disability takes too long, and the decision about who gets approved can seem arbitrary, Byker said. “It cannot be counted on,” he said.

An initial decision on an application for disability benefits can take an average of over seven months, according to a March letter signed by more than 100 members of Congress.

Most callers to the Social Security Administration are unable to reach an agent, and people seeking local field office assistance with an application can wait at least a month for an appointment, the letter said.

Earlier this year, acting Social Security Commissioner Kilolo Kijakazi warned in a letter to congressional leaders that months-long delays in processing disability applications and phone assistance are likely to worsen in 2023, even as officials vow to improve service over time.

In a written statement, Social Security Administration spokesperson Darren Lutz acknowledged that wait times are “far too long,” citing inconsistent and insufficient funding, staffing shortages, and other challenges. The agency refused to make officials available for a phone call to discuss the issue in more detail.

Caught in the tangle of dysfunction are disabled people with little or no income, who often take early retirement because they are struggling to pay for basics like housing, food, and medicine. In some cases, people end up homeless or die waiting for their disability benefits, lawyers told KFF Health News.

The problems can hit especially hard in the South and Appalachia, since those regions tend to have an older workforce than most other parts of the country, more workers in manufacturing, and people with lower educational attainment who tend to rely more on disability benefits.

“It is a system in crisis,” said Ida Comerford, a managing partner for the Kenneth Hiller law firm, which handles disability cases in New York, Michigan, and Illinois. “This is not going to cut it. It is the worst I’ve ever seen it.”

The Social Security Administration said its workers are required to notify applicants about all the benefits they could receive and provide enough details for them to make an informed decision.

For someone who has no income and no ability to cover their expenses, it might make sense to take early retirement benefits, said Kurt Czarnowski, a former Social Security Administration regional communications director who now works as a retirement consultant.

If a person has a medical condition that suggests a shorter life span, Czarnowski said, it is probably wise to consider taking the smaller payments now instead of waiting for bigger checks later.

But there is a huge financial advantage for those who can wait, Czarnowski said.

People born after 1960 can collect full retirement benefits at age 67. In addition, each year they wait to collect Social Security between ages 67 and 70, their monthly check increases by 8%.

“Ultimately, it is a longevity decision,” Czarnowski said.

Hall also said he advises certain clients to take early retirement benefits while applying for disability. If the person wins their disability case, they can still collect full retirement benefits instead of the reduced amount, he said.

But Byker, of Atticus, said that strategy comes with risk. Most applicants need an attorney to help obtain disability through the lengthy appeals process. But lawyers are less likely to take a client who is already receiving early retirement benefits because that scenario significantly reduces the amount of money they can make on a case, he said.

More than 60% of applications for Supplemental Security Income are rejected, according to the Center on Budget and Policy Priorities, a nonprofit research organization. About two-thirds of applications for Social Security Disability Insurance are denied, the group says.

Six months after she applied, the Social Security Administration notified Powell in a February letter that her Supplemental Security Income claim had been denied. The letter said that while medical evidence shows her condition limits her ability to hold a job, she can do work in keeping with her skills as a finance assistant.

Lutz, the Social Security spokesperson, said in a written statement that privacy laws preclude the agency from answering questions about Powell’s case. Lutz said the agency uses a “stringent definition of disability.”

Powell has hired an attorney and filed an appeal, but she doesn’t know when the case will be resolved.

“I don’t want to say ‘poor, poor me,’” Powell said. “It has not been easy. I don’t wish this on nobody.”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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The decorated Vietnam War veteran had survived prostate cancer and hepatitis C behind bars when a judge granted him early release late last year.

“I never gave up hope,” said Jordan, 74, who lives in Alabama. “I know a lot of people in prison who did.”

At least 6,182 people died in state and federal prisons in 2020, a 46% jump from the previous year, according to data recently released by researchers from the UCLA Law Behind Bars Data Project.

“During the pandemic, a lot of prison sentences became death sentences,” said Wanda Bertram, a spokesperson for the Prison Policy Initiative, a nonprofit that conducts research and data analysis on the criminal justice system.

Now, Jordan worries about his longevity. He struggles with pain in his legs and feet caused by a potentially life-threatening vascular blockage, and research suggests prison accelerates the aging process.

Life expectancy fell in the United States in 2021 for the second year in a row, according to the Centers for Disease Control and Prevention. That decline is linked to the devastating effect of covid-19 and a spike in drug overdoses.

Some academic experts and activists said the trend also underscores the lasting health consequences of mass incarceration in a nation with roughly 2 million imprisoned or jailed people, one of the highest rates in the developed world.

A Senate report last year found the U.S. Department of Justice failed to identify more than 900 deaths in prisons and local jails in fiscal year 2021. The report said the DOJ’s poor data collection and reporting undermined transparency and congressional oversight of deaths in custody.

Thousands of people like Jordan are released from prisons and jails every year with conditions such as cancer, heart disease, and infectious diseases they developed while incarcerated. The issue hits hard in Alabama, Louisiana, and other Southeastern states, which have some of the highest incarceration rates in the nation.

A major reason the U.S. trails other developed countries in life expectancy is because it has more people behind bars and keeps them there far longer, said Chris Wildeman, a Duke University sociology professor who has researched the link between criminal justice and life expectancy.

“It’s a health strain on the population,” Wildeman said. “The worse the prison conditions, the more likely it is incarceration can be tied to excess mortality.”

Mass incarceration has a ripple effect across society.

Incarcerated people may be more susceptible than the general population to infectious diseases such as covid and HIV that can spread to loved ones and other community members once they are released. The federal government has also failed to collect or release enough information about deaths in custody that could be used to identify disease patterns and prevent fatalities and illness inside and outside of institutions, researchers said.

Over a 40-year span starting in the 1980s, the number of people in the nation’s prisons and jails more than quadrupled, fueled by tough-on-crime policies and the war on drugs.

Federal lawmakers and states such as Alabama have passed reforms in recent years amid bipartisan agreement that prison costs have grown too high and that some people could be released without posing a risk to public safety.

The changes have come too late and not gone far enough to curb the worst effects on health, some researchers and activists for reform said.

Still, no one has proven that incarceration alone shortens life expectancy. But research from the early 2000s did show the death rate for people leaving prison was 3.5 times higher than for the rest of the population in the first few years after release. Experts found deaths from drug use, violence, and lapses in access to health care were especially high in the first two weeks after release.

Another study found that currently or formerly incarcerated Black people suffered a 65% higher mortality rate than their non-Black peers. Black people also make up a disproportionately high percentage of state prison populations.

The enactment in 2000 of the Death in Custody Reporting Act, and its reauthorization in 2014, required the DOJ to collect information about deaths in state and local jails and prisons.

The information is supposed to include details on the time and location of a death, demographic data on the deceased, the agency involved, and the manner of death.

But a recent report from the Government Accountability Office found that 70% of the records the DOJ received were missing at least one required data point. Federal officials also lacked a plan to take corrective action against states that didn’t meet reporting requirements, the GAO found.

The deficiency in data means the federal government can’t definitively say how many people have died in prisons and jails since the covid-19 pandemic began, researchers said.

“Without data, we are operating in the dark,” said Andrea Armstrong, a professor at the Loyola University New Orleans College of Law, who has testified before Congress on the issue.

Armstrong said federal and state officials need the data to identify institutions failing to provide proper health care, nutritious food, or other services that can save lives.

The DOJ did not make officials available for interviews to answer questions about the GAO report.

In a written statement, agency officials said they were working with law enforcement and state officials to overcome barriers to full and accurate reporting.

“The Justice Department recognizes the profound importance of reducing deaths in custody,” the statement said. “Complete and accurate data are essential for drawing meaningful conclusions about factors that may contribute to unnecessary or premature deaths, and promising practices and policies that can reduce the number of deaths.”

Department officials said the agency is committed to enhancing its implementation of the Death in Custody Reporting Act and that it has ramped up its efforts to improve the quality and quantity of data that it collects.

The DOJ has accused Alabama, where Jordan was incarcerated, of failing to adequately protect incarcerated people from violence, sexual abuse, and excessive force by prison staff, and of holding prisoners in unsanitary and unsafe conditions.

Jordan served 38 years of a 40-year sentence for reckless murder stemming from a car accident, which his lawyer argued in his petition for early release was one of the longest sentences in Alabama history for the crime. A jury had found him guilty of being drunk while driving a vehicle that crashed with another, killing a man. If he were convicted today instead, he would be eligible to receive a sentence as short as 13 years behind bars, because he has no prior felony history, wrote Alabama Circuit Judge Stephen Wallace, who reviewed Jordan’s petition for early release.

With legal help from Redemption Earned, an Alabama nonprofit headed by a former state Supreme Court chief justice, Jordan petitioned the court for early release.

On Sept. 26, 2022, Wallace signed an order releasing Jordan from prison under a rule that allows Alabama courts to reconsider sentences.

A few months later, Jordan said, he had surgery to treat a vascular blockage that was reducing blood flow to his left leg and left foot. A picture shows a long surgical scar stretching from his thigh to near his ankle.

The Alabama Department of Corrections refused an interview request to answer questions about conditions in the state’s prisons.

Jordan said his vascular condition was excruciating. He said he did not receive adequate treatment for it in prison: “You could see my foot dying.”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Jimmy Dee Stout was serving time on drug charges when he got grim news early last year.

Doctors told Stout, now 62, the sharp pain and congestion in his chest were caused by stage 4 lung cancer, a terminal condition.

“I’m holding on, but I would like to die at home,” he told the courts in a request last September for compassionate release after serving about half of his nearly 15-year sentence.

A federal compassionate release law allows imprisoned people to be freed early for “extraordinary and compelling reasons,” like terminal illness or old age.

Stout worried, because covid-19 had swept through prisons nationwide, and he feared catching it would speed his death. He was bedridden most days and used a wheelchair because he was unable to walk. But his request — to die surrounded by loved ones, including two daughters he raised as a single father — faced long odds.

More than four years ago, former President Donald Trump signed the First Step Act, a bipartisan bill meant to help free people in federal prisons who are terminally ill or aging and who pose little or no threat to public safety. Supporters predicted the law would save taxpayers money and reverse decades of tough-on-crime policies that drove incarceration rates in the U.S. to among the highest in the world.

But data from the U.S. Sentencing Commission shows judges rejected more than 80% of compassionate release requests filed from October 2019 through September 2022.

Judges made rulings without guidance from the sentencing commission, an independent agency that develops sentencing policies for the courts. The commission was delayed for more than three years because Congress did not confirm Trump’s nominees and President Joe Biden’s appointees were not confirmed until August.

As a result, academic researchers, attorneys, and advocates for prison reform said the law has been applied unevenly across the country.

Later this week, the federal sentencing commission is poised to hold an open meeting in Washington, D.C., to discuss the problem. They’ll be reviewing newly proposed guidelines that include, among other things, a provision that would give consideration to people housed in a correctional facility at risk from an infectious disease or public health emergency.

The situation is alarming because prisons are teeming with aging inmates who suffer from cancer, diabetes, and other conditions, academic researchers said. A 2021 notice from the Federal Register estimates the average cost of care per individual is about $35,000 per year. Incarcerated people with preexisting conditions are especially vulnerable to serious illness or death from covid, said Erica Zunkel, a law professor at the University of Chicago who studies compassionate release.

“Prisons are becoming nursing homes,” Zunkel said. “Who is incarceration serving at that point? Do we want a system that is humane?”

The First Step Act brought fresh attention to compassionate release, which had rarely been used in the decades after it was authorized by Congress in the 1980s.

The new law allowed people in prison to file motions for compassionate release directly with federal courts. Before, only the director of the Federal Bureau of Prisons could petition the court on behalf of a sick prisoner, which rarely happened.

This made federal lockups especially dangerous at the height of the pandemic, academic researchers and reform advocates said.

In a written statement, Bureau of Prisons spokesperson Benjamin O’Cone said the agency placed thousands of people in home confinement during the pandemic. “These actions removed vulnerable inmates from congregate settings where covid spreads easily and quickly and reduced crowding in BOP correctional facilities,” O’Cone said.

The number of applications for compassionate release began soaring in March 2020, when the World Health Organization declared a pandemic emergency. Even as covid devastated prisons, judges repeatedly denied most requests.

Research shows high rates of incarceration in the U.S. accelerated the spread of covid infections. Nearly 2,500 people held in state and federal prisons died of covid from March 2020 through February 2021, according to an August report from the Bureau of Justice Statistics. Charles Breyer, former acting sentencing commission chair, has acknowledged that compassionate releases have been granted inconsistently.

Data suggests decisions in federal courts varied widely by geography. For example, the 2nd Circuit (Connecticut, New York, and Vermont) granted 27% of requests, compared with about 16% nationally. The 5th Circuit (Louisiana, Mississippi, and Texas) approved about 10%.

In the 11th Circuit (Alabama, Florida, and Georgia), judges approved roughly 11% of requests. In one Alabama district, only six of 141 motions were granted, or about 4%, the sentencing commission data shows.

Judges in the 11th Circuit seem to define “extraordinary and compelling reasons” more conservatively than judges in other parts of the nation, said Amy Kimpel, a law professor at the University of Alabama.

“This made it more difficult for us to win,” said Kimpel, who has represented incarcerated people through her role as director of the Criminal Defense Clinic at the university’s School of Law.

Sentencing commission officials did not make leaders available to answer questions about whether a lack of guidance from the panel kept sick and dying people behind bars.

The new sentencing commission chair, Carlton Reeves, said during a public hearing in October that setting new guidelines for compassionate release is a top priority.

Earlier this month, the commission proposed new guidelines for compassionate release, including a provision that would give consideration to people housed in a correctional facility at risk from an infectious disease or public health emergency.

Stout said he twice contracted covid in prison before his January 2022 lung cancer diagnosis. Soon after doctors found his cancer, he was sent to the federal correctional complex in Butner, North Carolina.

According to a 2020 lawsuit, hundreds of people locked in the Butner prison were diagnosed with the virus and eight people died in the early months of the pandemic. An attorney for the American Civil Liberties Union, which filed the suit, called the prison “a death trap.”

The idea of battling cancer in a prison with such high covid rates troubled Stout, whose respiratory system was compromised. “My breathing was horrible,” he said. “If I started to walk, it was like I ran a marathon.”

Stout is the kind of person for whom compassionate release laws were created. The federal government has found prisons with the highest percentages of aging inmates spent five times as much on medical care as did those with the lowest.

Stout struggled with drug addiction in the ’80s but said he turned his life around and opened a small business. Then, in 2013, following the death of his father, he drifted into drugs again, according to court records. He sold drugs to support his habit, which is what landed him in prison.

After learning about the possibility of compassionate release from another prisoner, Stout contacted Families Against Mandatory Minimums, an organization that advocates for criminal justice reforms and assists people who are incarcerated.

Then-Chief U.S. District Judge Orlando Garcia ordered a compassionate release for Stout in October.

As Christmas approached, Stout said he felt lucky to be home with family in Texas. He still wondered about what was happening to the people he met behind bars who won’t get the same chance.

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Cataract procedures are among the most common surgeries in the U.S. — nearly 4 million take place annually — and generally take about 30 minutes under light sedation. At the same time, the surgeon scheduled the placement of a little stent inside Bilinski’s eye to relieve pressure from his diabetes-related glaucoma, also a routine procedure to preserve his eyesight.

Bilinski recalled being sedated during the surgery in May and hearing a nurse anesthetist ask him whether he felt any pain. Bilinski said no — only some pressure on the right side of his head. He said the nurse anesthetist responded that he would increase the sedation. Despite being under anesthesia, Bilinski knew something was wrong.

“The next thing I know there’s some sort of commotion going on, and I hear the doctor yelling at me, ‘Don’t move! Stay still!’ — yelling in my ear,” Bilinski said. “And then I hear the doctor say, ‘What’s that cut on his head?’”

It was a small abrasion — nothing serious, he said — but it went unmentioned by the staff. At home, he took a nap and awoke to blood on his pillow. Memories of the incident came flooding back.

His doctor mentioned nothing about the incident at his post-operative appointment, so Bilinski brought it up. “I said, ‘You know, doctor, I just have some questions for you because I have some memories of some things happening there,’” he said. “And at that point, I think she probably knew the jig was up and said, ‘Yeah, we had a little incident. You had a little adverse impact from the anesthesia.’”

The surgery was a success, and the cut on his forehead healed. But Bilinski wanted to know more about his reaction to the sedation. Later, when he got his medical records, they said the surgery had “no complications.”

“They hid it,” Bilinski said.

Then the bill came.

The Patient: Jerry Bilinski, 67, a retiree who has traditional Medicare and a supplemental Medicare plan through UnitedHealthcare.

Medical Service: Cataract removal and replacement of a lens, plus insertion of a Hydrus Microstent device to treat glaucoma.

Service Provider: Bilinski’s procedure was performed at the Fayetteville Ambulatory Surgery Center by Dr. Tarra Millender of Carolina Eye Associates, a chain of medical and surgical eye care centers headquartered in Southern Pines, North Carolina.

Total Bill: $1,805 for the doctor’s fee for cataract surgery and insertion of a stent. Bilinski’s portion of that bill was $54. In addition, Fayetteville Ambulatory charged Medicare $10,745 for the surgery. Medicare paid $2,377 to the surgery center, and Bilinski’s supplemental Medicare plan paid an additional $550. Bilinski owed $50 to the surgery center.

What Gives: Professional standards of care dictate that medical providers inform patients about injuries that happen during surgery. But what should happen next — whether that’s an apology or an offer to waive some portion of the bill — is an open question in the U.S. health care system. Another question: If the injury requires treatment — if, for example, Bilinski’s cut had needed stitches (it didn’t) — who should foot the bill?

T.J. McCaskill, chief operating officer for Carolina Eye Associates, declined an interview request, citing federal and state patient privacy laws, even though Bilinski gave permission for the details of his medical case to be released to a reporter. Millender, the doctor, did not return a reporter’s messages.

When patients experience adverse reactions during treatment, they are generally expected to pay the cost of bringing themselves back to good health. That might make sense if the reaction — such as an allergic reaction to a new antibiotic — could not have been anticipated. But what if the injuries are the result of negligence, carelessness, or a medical mishap (after all, providers are human and accidents happen)?

After reviewing details about Bilinski’s case, Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine in New York City, said he found the injury bizarre. He said he couldn’t understand why an adverse reaction to anesthesia would lead to a bloody forehead.

“That gash is pretty weird,” Caplan said. “If someone asked me to pay a bill on this, I would have said ‘no’ until we get this resolved.”

Caplan said a case like Bilinski’s would be unlikely to pose a legal risk for the provider; most attorneys will not accept a case in which any damage awards are likely to be small.

In some cases, doctors and medical offices do voluntarily give rebates to patients injured during treatment, Caplan said. A patient who experienced an infection at the site of an IV, for example, and needed a few extra days in the hospital for antibiotics might not be billed for the extra days.

“There is no standard policy,” he said. “That’s the doctor’s or medical practice’s decision.”

Resolution: The cut on his forehead healed, but Bilinski — who spent his career working in health care — felt he deserved to know what had caused the injury.

“If you make medical records that are not accurate, it puts people in danger,” he said. “In my case, it indicates that I had a certain anesthesia at a certain dosage, which in fact produced an adverse and potentially dangerous side effect, and that’s not in there. And instead it says everything went well and that I tolerated the procedure well.”

Bilinski said he talked with McCaskill, the executive from Carolina Eye Associates, but did not receive an apology or a satisfactory explanation.

Medicare, a government insurance program that typically serves seniors and people with disabilities, and a secondary insurance plan Bilinski carries through UnitedHealthcare covered most of the costs of the Medicare-negotiated rates for the surgery.

Bilinski owed his modest, predictable Medicare copays, as most enrollees do after surgical procedures. But Bilinski said he believes taxpayers were cheated because the handling of his injury was unprofessional and Medicare paid its full fee for a procedure during which something went awry.

He filed a complaint with the North Carolina Medical Board, which licenses physicians and investigates allegations of medical mistakes and wrongdoing. He also filed an affidavit with the Fayetteville Police Department. (A police representative told Bilinski it was a civil matter, not criminal, so not in the police department’s purview.)

A medical board spokesperson, Jean Fisher Brinkley, declined an interview request, saying the agency doesn’t publicly discuss ongoing investigations.

“How many other people has this kind of thing happened to?” Bilinski said.

The Takeaway: If you have questions about something unexpected that occurs during medical treatment, request a copy of your full record. In Bilinski’s case, his record said there were “no complications” with the procedure. That clearly was not quite true, Bilinski said.

Patients injured during a procedure can ask for a rebate or seek to have insurance copays waived, Caplan said. They can also file a complaint with a state medical board to try to find out what happened and whether professional standards were violated.

Medical care is often unpredictable, but if an avoidable injury happens, the patient should not necessarily have to pay for that to be remedied, Caplan said.

Patients are frequently left holding the bag for extended hospital stays and reparative treatments for events that are not their fault. They might have to stay in the hospital three extra nights, over a weekend, for example, because a social worker wasn’t available for discharge planning on Friday. If a defective joint implant is put into a knee, the costs of replacing it are often borne by the patient and the insurer. (Although a lawsuit might eventually lead to a full or partial reimbursement from the manufacturer, such cases typically take years to get to a judgment.)

Patients should fight back and refuse to pay such bills, Caplan advised. Likewise, doctors in such situations should be fully transparent about what occurred and why. Though some physicians may worry about the risk of a malpractice suit, studies have shown that a simple admission, combined with an apology, often extinguishes a patient’s ire. Such apologies are required by professional ethics, and in some states they are required by law, as well.

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The 55-year-old grandmother receives about $750 a month from the federal government. She’s trying to live on just $50 cash and $150 in food stamps each month so she can save enough for a place to call home.

Davis is homeless even though she receives funds from the Supplemental Security Income program, a hard-to-get federal benefit that was created nearly 50 years ago to lift out of poverty Americans who are older, blind, or disabled.

Davis’ job options are limited because she gets dialysis treatment three times a week for kidney failure. As she prepared to spend another night in the crowded shelter, she checked her phone to see whether a doctor wanted her to have her left leg amputated.

“My therapist is trying to help me stay positive but sometimes I just want to end this life and start over,” Davis said.

Falling into homelessness is not a new issue for people who receive supplemental income from the Social Security Administration. But moving recipients out of shelters, crime-ridden motels, and tent encampments and into stable housing has been getting harder, according to nonprofit attorneys, advocates for people with disabilities, and academic researchers.

Rapidly rising rents and inflation deserve a share of the blame.

But SSI recipients, activists, and others said the issue underscores for them how the program itself locks millions of people into housing instability and deep poverty even as President Joe Biden promises to fix it.

“We are trapping people in a place where dignity is out of reach,” said Rebecca Vallas, a senior fellow at the Century Foundation, a progressive think tank that conducts research on economic equity. “The program started with good intentions,” she said. “It is hard for me to see this as anything but willful neglect.”

In a country where roughly 1 in 4 residents live with some type of disability, supplemental income is meant to ensure that the most vulnerable can get housing and other basic needs. Most SSI recipients automatically qualify for Medicaid, a joint federal and state program that covers medical costs for people with low incomes.

In addition to people who are blind or who are 65 or older, those who prove they have a medical condition that prevents them from working for at least one year are eligible for a monthly payment from SSI, which maxes out at $841. But there’s a catch that makes seeing a better financial future difficult for people like Davis. The monetary benefit decreases if the person earns more than $85 a month in additional income. And both the income and Medicaid benefits are revoked if the person saves more than $2,000, which critics say discourages people from saving.

The amount that recipients receive has not kept pace with rising rent prices, advocacy groups say.

The amount of money Davis said she gets each month from the program is about $60 more than the maximum amount offered 10 years ago, when she first started receiving the benefit. Yet the average apartment in Charlotte, where Davis lives, now rents for $1,500 a month, about 70% more than it did nearly a decade ago, according to Zumper, which has been tracking rental prices since 2014.

There’s no chance she can afford her dream: an apartment or house in a safe neighborhood where she can spend afternoons crocheting. “I don’t like to talk like this, but I am not sure what’s going to happen to me,” Davis said.

When Congress created SSI in 1972, the legislation promised that recipients “would no longer have to subsist on below-poverty-level incomes.”

Today, nearly 8 million people rely on the federal program for income.

Over the past five decades, Congress under both Republican and Democratic leadership has declined to make major changes to the program. The $85 outside income limit, for instance, has never been adjusted to account for inflation.

The Social Security Administration, which oversees the program, did not respond to multiple requests for comment about how the rates are set.

Biden committed to reforming SSI during his 2020 presidential campaign, saying that he would “protect and strengthen economic security for people with disabilities.”

But for seven months, Delisa Williams has been stuck in the same homeless shelter as Davis. Diabetes, hypertension, and osteoporosis have left her body weakened, and the stress of living in the Salvation Army Center of Hope is taking a toll on her mental health.

Williams’ only real chance to get out had been the combined $881 she got each month from SSI and the Social Security Disability Insurance program, which has similar limits and requirements. She quickly realized that would not be enough to afford the rent for most places.

“God will see me through,” she said. “He didn’t bring me this far for nothing.”

Among developed nations, the United States is one of the hardest places for people to meet the criteria for disability payments, according to the Organization for Economic Cooperation and Development, a global intergovernmental group the U.S. helped create to advance social well-being.

If a person applies for disability income, they can wait months or even years to get benefits. Thousands go broke or die while waiting for help. A data analysis by the U.S. Government Accountability Office found that from 2014 to 2019, about 48,000 people filed for bankruptcy while trying to get a final decision on a disability appeal. The same report said that from 2008 to 2019 more than 100,000 people died waiting.

The situation was made worse during the covid-19 pandemic because the Social Security Administration closed more than 1,200 field offices across the nation and kept them shuttered for roughly two years.

That decision left hundreds of thousands of needy people unable to seek benefits, since phone lines were jammed with calls and the agency provides no way to submit applications online, said David Weaver, a former associate commissioner for research, demonstration, and employment support at the Social Security Administration.

“The number of SSI awards just collapsed,” Weaver said.

Homeless shelters and other nonprofits often help clients apply for the supplemental income in hopes that the money will help get them a place to live. Rachael Mason, a social worker at the Triune Mercy Center in Greenville, South Carolina, has learned to temper people’s expectations.

“Any time someone shows up and says I want to pursue housing, my heart drops a little bit,” Mason said. “I have to be honest and tell them it could be a year to three years. Even if someone wants to just rent a room in a house, it could take up their entire check.”

As the 50th anniversary of SSI approaches this fall, Congress is deciding whether to make changes to the program.

In an April 2021 letter to Biden and Vice President Kamala Harris, more than 40 lawmakers lobbied them to raise cash benefits above the poverty level, increase the amount of money recipients can save, and eliminate reductions for taking help from loved ones, among other changes. “People with disabilities and older adults receiving SSI represent some of the most marginalized members of our society,” the letter said. “History will not forgive us if we fail to address their needs in the recovery effort.”

A group of Republican and Democratic legislators have now proposed the SSI Savings Penalty Elimination Act, which would raise the asset limit for recipients from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for couples.

Davis, the woman whose leg might be amputated, is trying to remain hopeful. She started seeing a therapist to cope with depression. She stopped smoking to save money for an apartment.

Asked when she might be able to move out of the shelter, she said, “I don’t know.”

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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