The Trusted Source For Health
Lucy Greco (left), a web-accessibility specialist at the University of California, Berkeley, is blind. She reads most of her documents online, but employs Liza Schlosser-Olroyd as an aide to sort through her paper mail every other month, to make sure Greco hasn’t missed a bill …
Cambodian American Eden Teng was was born in a refugee camp on the border of Thailand and Cambodia just a few years after the Cambodian genocide. She moved to the U.S. with her mom and aunt when she was 6. Teng attributes much of her …
Courtney Johnson, who has autism and multiple chronic illnesses, lives relatively independently. Her grandparents and friends have helped her access social services. Still, she says, “thinking about the future is a bit terrifying to me.”
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Tristan Lane
Courtney Johnson, who has autism and multiple chronic illnesses, lives relatively independently. Her grandparents and friends have helped her access social services. Still, she says, “thinking about the future is a bit terrifying to me.”
Tristan Lane
Thinking about the future makes Courtney Johnson nervous.
The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tenn.
“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she says.
Johnson says she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.
“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she says.
Johnson’s situation isn’t unique.
Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them get access to government services or to care for them directly.
Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that’s full of holes — has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.
“There’s just potential for a tremendous human toll on individuals if we don’t solve this problem,” says Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.
About 25{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly 75{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of Americans with disabilities live with a family caregiver, and about 25{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.
But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they’re up to date, says Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.
“Engaging in it once is good, right? But you can’t only engage in it once,” she says. “It’s a living document, because things change, people change, circumstances change.”
Burke’s research has found several barriers to planning for the future: financial constraints, reluctance to have hard conversations, trouble understanding government services. Creating plans for people with disabilities also is a complex process, with many questions for families to answer: What are their relatives’ health needs? What activities do they enjoy? What are their wishes? Where will they live?
Rob Stone was born with a condition that restricts much of his movement. His mother, Jeneva, says her family has been “flummoxed” by the process of planning for the future. They just want to make sure Rob will have a say in where he lives and the care he receives.
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Rob Stone was born with a condition that restricts much of his movement. His mother, Jeneva, says her family has been “flummoxed” by the process of planning for the future. They just want to make sure Rob will have a say in where he lives and the care he receives.
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Burke has firsthand experience answering those questions. Her younger brother has Down syndrome, and she expects to become his primary caregiver in the future — a situation she said is common and spreads the work of caregiving.
“This is an impending intergenerational crisis,” she said. “It’s a crisis for the aging parents, and it’s a crisis for their adult offspring with and without disabilities.”
Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations, a national caregiver advocacy organization, says the network of state and federal programs for people with disabilities can be “extremely complicated” and is full of holes. She has witnessed those gaps as she has helped her brother, who has autism, get access to services.
“It’s really difficult for families to plan when there isn’t a system that they can rely on,” she says.
Medicaid pays for people to receive services in home and community settings through programs that vary state to state. But Jorwic says there are long waitlists. Data collected and analyzed by KFF shows that queue is made up of hundreds of thousands of people across the country. Even when people qualify, Jorwic adds, hiring someone to help can be difficult because of persistent staff shortages.
Jorwic says more federal money could shorten those waitlists and boost Medicaid reimbursements to health care providers, which could help with workforce recruitment. She blames chronic underinvestment in Medicaid disability services for the lack of available slots and a dearth of workers to help people with disabilities.
“It’s going to be expensive, but this is four decades of funding that should have been done,” she says.
Congress recently put about $12.7 billion toward enhancing state Medicaid programs for home- and community-based services for people with disabilities, but that money will be available only through March 2025. The Build Back Better Act, which died in Congress, would have added $150 billion, and funding was left out of the Inflation Reduction Act, which became law this summer, to the disappointment of advocates.
Jeneva Stone’s family in Bethesda, Md., has been “flummoxed” by the long-term planning process for her 25-year-old son, Rob. He needs complex care because he has dystonia 16, a rare muscle condition that makes moving nearly impossible for him.
“No one will just sit down and tell me what is going to happen to my son,” she says. “You know, what are his options, really?”
Stone says her family has done some planning, including setting up a special needs trust to help manage Rob’s assets and an ABLE account, a type of savings account for people with disabilities. They’re also working to give Rob’s brother medical and financial power of attorney and to create a supported decision-making arrangement for Rob to make sure he has the final say in his care.
“We’re trying to put that scaffolding in place, primarily to protect Rob’s ability to make his own decisions,” she says.
Alison Barkoff is acting administrator for the Administration for Community Living, part of the U.S. Department of Health and Human Services. Her agency recently released what she called a “first ever” national plan, with hundreds of actions the public and private sectors can take to support family caregivers.
“If we don’t really think and plan, I’m concerned that we could have people ending up in institutions and other types of segregated settings that could and should be able to be supported in the community,” says Barkoff, who notes that those outcomes could violate the civil rights of people with disabilities.
She says her agency is working to address the shortages in the direct care workforce and in the supply of affordable, accessible housing for people with disabilities, as well as the lack of disability-focused training among medical professionals.
Evan Woody has needed round-the-clock care since his brain injury and lives with his parents in Dunwoody, Ga. His father, Philip, says his family has some plans in place for Evan’s future, but one question is still unanswered: Where will Evan live when he can no longer live with his parents?
Philip Woody
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Philip Woody
Evan Woody has needed round-the-clock care since his brain injury and lives with his parents in Dunwoody, Ga. His father, Philip, says his family has some plans in place for Evan’s future, but one question is still unanswered: Where will Evan live when he can no longer live with his parents?
Philip Woody
But ending up in a nursing home or other institution might not be the worst outcome for some people, says Berns, who points out that people with disabilities are overrepresented in jails and prisons.
Berns’ organization, the Arc offers a step-by-step planning guide and has compiled a directory of local advocates, lawyers, and support organizations to help families. Berns says that making sure people with disabilities have access to services — and the means to pay for them — is only one part of a good plan.
“It’s about social connections,” Berns says. “It’s about employment. It’s about where you live. It’s about your health care and making decisions in your life.”
Philip Woody feels as though he has prepared pretty well for his son’s future. Evan, 23, lives with his parents in Dunwoody, Ga., and needs round-the-clock support after a fall as an infant resulted in a significant brain injury. His parents provide much of his care.
Woody says his family has been saving for years to provide for his son’s future, and Evan recently got off a Medicaid waitlist and is getting support to attend a day program for adults with disabilities. He also has an older sister in Tennessee who wants to be involved in his care.
But two big questions are plaguing Woody: Where will Evan live when he can no longer live at home? And will that setting be one where he can thrive?
“As a parent, you will take care of your child as well as you can for as long as you can,” Woody says. “But then nobody after you pass away will love them or care for them the way that you did.”
KHN (Kaiser Health News) is a national, editorially independent program of the Kaiser Family Foundation (KFF).
Minnesota Republican Scott Jensen has appeared with many anti-vaccine activists. Their help may perhaps have aided him win the point out main for governor. Ben Mulholland/Grey Television/Pool/by using AP hide caption toggle caption Ben Mulholland/Gray Tv/Pool/via AP Minnesota Republican Scott Jensen has appeared with several …
It’s fall again, meaning shorter days, cooler temperatures, and open enrollment for Affordable Care Act marketplace insurance — sign-ups begin this week for coverage that starts Jan. 1, 2023. Even though much of the ACA coverage stays the same from year to year, there have …
Diagnosed with cancer five years ago, Monica Reed of Knoxville, Tennessee, was left with nearly $10,000 in medical bills she couldn’t pay. Medical debt is more prevalent among the Black community in Knoxville, than among whites.
Jamar Coach for KHN and NPR
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Jamar Coach for KHN and NPR
Diagnosed with cancer five years ago, Monica Reed of Knoxville, Tennessee, was left with nearly $10,000 in medical bills she couldn’t pay. Medical debt is more prevalent among the Black community in Knoxville, than among whites.
Jamar Coach for KHN and NPR
When Dr. H.M. Green opened his new medical office building on East Vine Avenue in 1922, Black Knoxville residents could be seen only in the basement of Knoxville General Hospital. They were barred from the city’s other three medical centers.
Green, one of America’s leading Black physicians, spent his life working to end health inequities like this. He installed an X-ray machine, an operating room, and a private infirmary in his building to serve Black patients. On the first floor was a pharmacy.
Today the Green Medical Arts Building has been replaced by a tangle of freeways that were built after the city’s Black business district was bulldozed in a midcentury urban renewal project.
But the health gaps Green labored to narrow still divide this community. And if segregation is less apparent in medical offices today, its legacy lives on in crushing medical debt that disproportionately burdens this city’s Black community.
In and around Knoxville, residents of predominantly Black neighborhoods are more than twice as likely as those in largely white neighborhoods to owe money for medical bills, Urban Institute credit bureau data shows — it’s one of the widest racial disparities in the country.
That tracks with a disturbing national trend. Health care debt in the U.S. now affects more than 100 million people, a KHN-NPR investigation found. But the toll has been especially high on Black communities: 56{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of Black adults owe money for a medical or dental bill, compared with 37{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of white adults, according to a nationwide KFF poll conducted for this project.
The explanation for that startling disparity is deeply rooted. Decades of discrimination in housing, employment, and health care blocked generations of Black families from building wealth — savings and assets that are increasingly critical to accessing America’s high-priced medical system.
Against that backdrop, patients suffer. People with debt avoid seeking care and become sicker with treatable chronic conditions like diabetes or multiple sclerosis. Worse still, hospitals and doctors sometimes won’t see patients with medical debt — even those in the middle of treatment.
“African Americans don’t seek health care until we are really, really sick, and then it costs more,” said Tabace Burns, a former emergency room nurse in Knoxville. Burns, who is also a leader in her church, said she routinely helps members of her congregation find medical care they should have sought earlier.
Nationwide, Black adults who have had health care debt are twice as likely as white adults with such debt to say they’ve been denied care because they owe money, the KFF poll found. Many Black Americans also ration their care out of fear of cost.
Dr. H.M. Green was a leading Black physician in the early 20th century who fought discrimination in health care. His clinic was torn down when Knoxville, Tennessee, bulldozed Black neighborhoods during a midcentury urban renewal project.
Beck Cultural Exchange Center in Knoxville, Tenn.
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Beck Cultural Exchange Center in Knoxville, Tenn.
Dr. H.M. Green was a leading Black physician in the early 20th century who fought discrimination in health care. His clinic was torn down when Knoxville, Tennessee, bulldozed Black neighborhoods during a midcentury urban renewal project.
Beck Cultural Exchange Center in Knoxville, Tenn.
Burns recalled a friend who came to see her about an oozing growth on her breast. “She didn’t have any insurance, so she just thought it would get better,” Burns said.
Burns helped the woman find an oncologist to treat what turned out to be cancer. There was a cost to waiting so long, though. Because the cancer was so advanced, the friend had to undergo chemotherapy and have both breasts removed.
It could have been worse. “What if she didn’t know me? What if she just continued to let her breast leak and it was necrotic?” Burns said. But, she added, if her friend hadn’t been so worried about going into debt, she would have gone to the doctor sooner.
It’s a terrible cycle, said Berneta Haynes, a staff attorney at the National Consumer Law Center. “This legacy of segregation and structural racism underlies the racial health gap,” she said. “It impacts health outcomes and access. And it impacts the level of medical debt.”
The story of how Knoxville’s Black residents came to be its primary victims of medical debt is written in the city’s changing landscape.
Just outside downtown, below refurbished office buildings and former warehouses, is an area once called The Bottom, long the heart of the Black community.
This area persevered through decades of Jim Crow segregation and violence. In one of the worst episodes, mobs of white rioters in 1919 vandalized Black-owned stores and shot residents after a young Black man was accused of killing a white woman.
Left: Central Street and Vine Avenue, pictured in 1949, was the heart of the Black business district in Knoxville, Tenn., with grocers, pool halls, a YMCA, and the Gem Theatre, where Billie Holiday played. Right: Today a tangle of freeways stands where Knoxville’s Black business district once thrived.
Beck Cultural Exchange Center in Knoxville, Tenn. and Jamar Coach for KHN and NPR
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Beck Cultural Exchange Center in Knoxville, Tenn. and Jamar Coach for KHN and NPR
It was here that Black physicians like Green opened medical offices alongside grocers, pool halls, and funeral homes. Knoxville’s first Black millionaire, a former enslaved man who’d made a fortune in horse racing and saloons, built a YMCA. Billie Holiday and Cab Calloway performed at the Gem Theatre.
Beginning in the late 1950s, the city systematically wiped out The Bottom and surrounding neighborhoods in an urban renewal and highway-building campaign. Officials razed more than 500 homes, 15 churches, and more than 100 Black-owned businesses, including Green’s medical building.
More than 2,500 families were displaced. Many ended up in public housing projects. Others left Knoxville. Businesses never reopened. “It changed the whole landscape,” said the Rev. Reneé Kesler, director of the Beck Cultural Exchange Center, a nonprofit that preserves Knoxville’s Black history. “You’ll have generations that won’t recover from that.”
What urban renewal left behind in East Knoxville was a neighborhood that’s the poorest in the city — and has the largest share of Black residents.
A tiny fraction of residents are homeowners. Blocks are blighted by boarded-up buildings and overgrown lots. Down the street from Knoxville’s oldest Black cemetery, a Dollar General recently closed — one of the few stores around that sold groceries.
The neighborhood’s residents are sicker than those elsewhere in Knoxville, with higher levels of diabetes and other chronic illnesses. They are less likely to have health insurance.
They also have much more medical debt.
More than 30{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of the people have a medical bill on their credit record, according to credit bureau data collected by the nonprofit Urban Institute. A few miles west in Knoxville’s overwhelmingly white suburbs, fewer than 10{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} carry such debt.
Midcentury urban renewal and highway-building in Knoxville, Tennessee, wiped out the Black business district and neighborhoods like The Bottom. “We concentrated Black poverty,” says city council member Gwen McKenzie.
Jamar Coach for KHN
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Jamar Coach for KHN
Midcentury urban renewal and highway-building in Knoxville, Tennessee, wiped out the Black business district and neighborhoods like The Bottom. “We concentrated Black poverty,” says city council member Gwen McKenzie.
Jamar Coach for KHN
It’s not difficult to understand the difference, said Eboni Winford, a clinical psychologist at Cherokee Health Systems, a network of clinics that serve low-income patients. “Black people are less likely to have generational wealth to pass on, which means we don’t have the pockets of money that we can just use if medical bills arise.”
Nationally, the median white family now has about $184,000 in assets such as homes, savings, and retirement accounts, according to an analysis by the Federal Reserve Bank of St. Louis. The assets of the median Black family total just $23,000.
“What happened is we concentrated Black poverty,” said Gwen McKenzie, a Knoxville City Council member who grew up not far from The Bottom. “From there, that’s where it became generational.”
Monica Reed lives just up the hill from where The Bottom once was.
She considers herself luckier than most. Born in Knoxville and raised by a single mother, Reed became the first in her family to own a home, a small house built after the city demolished The Bottom. For the past 15 years, she’s worked for a faith-based nonprofit that assists low-income residents of Knoxville.
“It hasn’t always been easy,” said Reed, who just turned 60. She raised her son by herself. And though she’s always worked, her modest salary made saving difficult. “I just tried to live a frugal kind of life,” she said. “And by the grace of God, I didn’t become homeless.”
She couldn’t escape medical debt, though. Diagnosed with cancer five years ago, Reed underwent surgery and chemotherapy. Although she had health insurance through work, she was left with close to $10,000 in medical bills she couldn’t pay.
She’s been pursued by debt collectors and even taken to court. That’s forced Reed to make difficult choices. “There’s always a sacrifice,” she said. “You just do without some things to pay other things.”
Reed said she cut back on trips to the grocery store: “I don’t buy a lot of food. Just plain and simple.”
She has adjusted, she said. “You just do what you have to do.” What angers Reed, though, is how she’s been treated by the cancer center where she goes for periodic checkups to make sure the cancer remains in remission. When she recently tried to make an appointment, a financial counselor told her she couldn’t schedule it until she made a plan to pay her bills.
“I was so upset, I didn’t even find out how much I owed,” Reed said. “I mean, I wasn’t calling about a little toothache. This is something that affects someone’s life.”
Health insurance gains made possible by the Affordable Care Act have narrowed some racial health disparities, studies show.
The expansion of Medicaid, in particular, has brought new financial security to millions of low-income Americans. In a recent analysis of credit bureau and census data, researchers estimated that Medicaid expansion helped enrollees avoid more than $1,200 in medical debt.
But many of those gains have remained out of reach in Knoxville. Tennessee is among 12 states that have rejected federal funding to expand the Medicaid safety net through the 2010 health care law.
Eight of the 12 are Southern states with large Black populations. The decision not to expand has disproportionately affected communities like East Knoxville that are already contending with deep racial disparities in health and wealth.
Of the roughly 2.2 million people locked out of health coverage because these states rejected Medicaid expansion, nearly 60{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} are people of color, according to a KFF analysis. About a quarter are Black.
Locked out of health insurance, many just try to hang on until they become eligible for Medicare, said Cynthia Finch, an advocate in Knoxville who has worked to improve health in the city’s Black community. “People pray they don’t get sick before they are 65,” she said.
If Black patients go into debt, they face yet another challenge: a medical debt collections industry that targets Black debtors more aggressively than their white counterparts, particularly for smaller debts.
About 6 in 10 Black adults with medical debts under $2,500 say they or someone in their household has been contacted by a collection agency in the past five years, the KFF poll found. By contrast, only about 4 in 10 white adults with similar debt said the same.
At the courthouse in downtown Knoxville, the dockets are filled with debt collection lawsuits filed by some of the region’s largest hospitals: Fort Sanders Regional Medical Center, East Tennessee Children’s Hospital, and Parkwest Medical Center.
That discourages many Black patients from seeking care even if they need it, said Cherokee Health’s Derrick Folsom, who helps patients enroll in health insurance. “Somebody knows somebody who’s getting sued for medical bills,” Folsom said. “So they stay away from medical centers.”
Reflecting on her experience with medical debt, Reed said she tries to stay upbeat. “I don’t sweat the small stuff,” she said. “What am I going to do against this hospital?”
But, she said, she has realized one thing about the nation’s health care system: “It’s not designed for poor people.”
