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Rural Health: Financial Insecurity Plagues Many Who Live With Disability

Jun 12, 2019
Originally published on June 13, 2019 4:39 pm

Carol Burgos is worried her neighbors think she is bringing the neighborhood down.

She lives in a mobile home park in a woodsy part of Columbia County, N.Y, just off a two-lane highway. The homes have neat yards and American flags. On a spring Saturday, some neighbors are out holding yard sales, with knickknacks spread out on folding tables. Others are out doing yardwork.

Burgos' lawn is unruly and overgrown.

"How bad do I feel when these little old ladies are mowing their lawn and I can't because I'm in so much pain?" she says.

Burgos is in her early 50s. She can't mow her lawn herself because of pain and physical limits related to her osteoarthritis, degenerative disk disease and other health issues. She was deemed disabled in 1997 and lives on payments from Social Security Disability Insurance. She gets health coverage through Medicare.

She also can't afford to pay someone to mow the lawn for her. "I don't want another bill," she explains. "I don't want to be in more debt. I'm embarrassed. I don't know, who do you ask?"

Carol Burgos is deeply frustrated she can't even physically mow her own lawn because of pain from her osteoarthritis, degenerative disk disease and other health issues.
Selena Simmons-Duffin/NPR

Burgos estimates she is $30,000 in debt. That's a lot, especially with so little coming in. "Less than $1,500 a month," she says. "And that doesn't include [costs of] fuel; cooking gas; electric; water usage."

For food, she gets a bit of money in food stamps every month. Her income works out to about $18,000 a year — not too far off from what most people living on disability benefits make.

There's no way she could pay a $1,000 expense right away, Burgos says. According to a recent poll NPR conducted with the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health, 49% of rural Americans couldn't afford a sudden expense of that size.

The percentage was much higher — 70% — for people who, like Burgos, have disabilities. More than half of those with disabilities said their families have had problems paying for medical or dental bills in the past few years.

Burgos says she doesn't want to have to rely on disability benefits. She used to work — she's had lots of jobs, including helping developmentally challenged people with life skills.

She identifies as a "working person with disabilities" even though she hasn't worked for 10 years. She is frustrated by the copays she has to pay for doctor visits and at the pharmacy — she ends up filling only her most important prescriptions, she says.

"I want to work," she says. "Screw the money! Give me medical coverage — full medical — so I can be an able body that is willing to work."

Burgos feels stuck in poverty and physically stuck, because it's so hard for her to get around.

Having good access to transportation — or not — has a huge impact on the health of people living in rural parts of the country, says Dr. Kirsten Bibbins-Domingo, a professor of epidemiology and biostatistics at the University of California, San Francisco who studies the health of vulnerable populations.

"If you go to less populated areas — rural areas — access to a car that functions well [and] the costs for gas becomes such an essential element," Bibbins-Domingo says. "Both to drive to seek medical care, as well as to drive to access the other resources that are necessary to pursue good health."

Without that transportation — or ready access to other basics like healthy food or good housing — people can get into a vicious cycle, she says.

"Poor health contributes to financial instability and to poverty," Bibbins-Domingo says, "and poverty itself we know contributes to poor health."

That cycle of poor health and poverty hits people with disabilities particularly hard. "Their poverty levels are over two times higher, compared to those without disabilities," says Bill Erickson of the Yang-Tan Institute on Employment and Disability at Cornell University.

The federal government does provide help to people with disabilities under two different programs. Some people, like Burgos, have a work history that entitles them to payments from Social Security Disability Insurance. Others, who never worked — perhaps because of a developmental disability — are eligible for Supplemental Security Income.

But other hurdles can arise. If you're disabled, live in a rural area and want to work, you still have to find a job you can do.

"Since the Great Recession, rural counties really haven't seen as much employment growth as urban counties," Erickson says. "Also just the types of jobs that are available to those sorts of communities may be tending toward, you know, requiring people to be able to move things physically or whatever.

"And the limitations that the individual with disabilities may have," Erickson continues, "may be preventing them from being able to do those particular types of jobs — or employers can't provide the accommodations that may be necessary."

Erickson's colleague at ILR, Thomas Golden, adds that the complexity of disability benefits presents another problem for people who would like to work. It's not clear to many people how much they are allowed to work without jeopardizing their benefits, he says, or what programs are available to help them in the job search.

For the past six years, Golden and Erickson have worked with young people receiving Supplemental Security Income as part of the New York State PROMISE initiative.

"In a lot of cases, those youth and their families weren't ready to talk about work because they couldn't pay their rent," Golden says. "Or they were getting evicted. Or other basic needs needed to be met first before they could think about their own self-development, when it came to work and economic independence."

Burgos says she would like to find a job she is able to do, with enough hours to supplement her income but not trigger a loss of her Social Security benefits. First, though, she says, she must figure out how to deal with the overgrown lawn and a student loan bill that just arrived in the mail. And she is trying to coordinate nursing care for her elderly mother.

There are good things in her life, too, Burgos says. She has her faith — she's a born-again Christian. Her car is a bit beat up, but it works. And she has a very sweet little dog.

And even though she has to rely on a walker for long distances — and fears she eventually will end up in a wheelchair — for now, she is still well enough to get up and down the stairs to her front door.

NPR science intern Susie Neilson contributed reporting for this story.

Copyright 2019 NPR. To see more, visit https://www.npr.org.

AUDIE CORNISH, HOST:

The things you need to live a healthy life - good food, a safe place to live, reliable transportation - all of those things cost money. For many people living on disability benefits, money is tight. And a recent NPR poll on Rural Health finds that a large majority of people with disabilities struggle with financial insecurity. NPR's Selena Simmons-Duffin reports from upstate New York.

SELENA SIMMONS-DUFFIN, BYLINE: Carol Burgos is worried her neighbors think she's bringing the neighborhood down. We're driving through her mobile home park. It's in a woodsy part of Columbia County just off a two-lane highway.

CAROL BURGOS: So you can go down there.

SIMMONS-DUFFIN: So it's a left here, right?

BURGOS: Make a left.

SIMMONS-DUFFIN: Burgos is in her early 50s. She has red hair and sparkly, black-rimmed glasses. She uses a cane to get around. The mobile homes here have neat yards, American flags. Some neighbors are out holding yard sales, knickknacks spread out on folding tables. Some are doing yard work. Burgos is a renter, and her lawn is unruly and overgrown.

BURGOS: I mean, these little old ladies - how bad do I feel when these little old ladies are mowing their lawn and I can't because I'm in so much pain?

SIMMONS-DUFFIN: Burgos physically can't mow her lawn. She has osteoarthritis and degenerative disc disease and other health issues. She was deemed disabled in 1997 and lives off of Social Security Disability Insurance with health coverage through Medicare.

(SOUNDBITE OF GRAVEL ROAD CRUNCHING)

SIMMONS-DUFFIN: We pull over on the side of a gravel road just outside the park, looking out on a wide, green open field and trees. And we talk. Sometimes she grabs her knee.

BURGOS: Ow.

SIMMONS-DUFFIN: Do you get, like, shooting pains?

BURGOS: I'm in constant pain (laughter).

SIMMONS-DUFFIN: Is it, like, a constant...

BURGOS: It's every kind of pain, yeah. It's all kinds of different pains.

SIMMONS-DUFFIN: So she can't mow the lawn, and she also can't afford to pay somebody to do it.

BURGOS: I don't want another bill. I don't want to be in more debt.

SIMMONS-DUFFIN: Do you have a sense for how much in debt you are right now?

BURGOS: Over $30,000.

SIMMONS-DUFFIN: That is a lot of debt, especially with so little coming in.

BURGOS: Less than $1,500 a month. The rent is $950, and that doesn't include fuel, cooking gas, electric, water usage.

SIMMONS-DUFFIN: What about food?

BURGOS: I get food stamps, and then I go to a food pantry if I can make it there.

SIMMONS-DUFFIN: With her aching knees and bad back, it's hard for her to drive, and it's hard to afford gas. Everything's so spread out.

So imagine if a $1,000 expense comes up. What happens?

BURGOS: I freak out. I wind up going in a debt - another debt.

SIMMONS-DUFFIN: In our poll with the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health, 49% of rural Americans couldn't afford that. The number was much higher for people with disabilities - 70%. More than half of them said their families had had problems paying for medical or dental bills in the last few years.

Burgos says she doesn't want to rely on disability benefits. She used to work. She helped develop mentally challenged people with life skills. But she hasn't worked for 10 years.

BURGOS: I want to work. Screw the money. Give me medical coverage so that - full medical - so that I can be an able body that is willing to work. Why are you keeping me stuck?

SIMMONS-DUFFIN: Burgos feels stuck in poverty and physically stuck because it's so hard for her to get around. Transportation has a huge impact on health for people living in rural parts of the country, says Dr. Kirsten Biggins-Domingo. She works on the health of vulnerable populations at the University of California, San Francisco.

KIRSTEN BIBBINS-DOMINGO: If you go to less populated areas, rural areas, access to a car that functions well, the costs for gas - that becomes such an essential element both to drive to seek medical care as well as to drive to access the other resources that are necessary to pursue good health.

SIMMONS-DUFFIN: Without that transportation or access to other basics like healthy food or good housing, people can get into a vicious cycle.

BIBBINS-DOMINGO: Poor health contributes to financial instability and to poverty. And poverty itself, we know, contributes to poor health.

SIMMONS-DUFFIN: For people with disabilities, it's easy to get stuck in that cycle of poverty and poor health.

BILL ERICKSON: Their poverty levels are over two times higher compared to those without disabilities.

SIMMONS-DUFFIN: That's Bill Erickson of the Yang-Tan Institute on Employment and Disability at Cornell University. Let's say like Carol Burgos, you're disabled, and you're living in a rural area, and you want to work. Now you've got to find a job you can do.

ERICKSON: Since the Great Recession, rural counties really haven't seen as much employment growth as urban counties. And also just the types of jobs that are available, too, in those sorts of communities may be requiring people to be able to, you know, move things physically or whatever. And you know, the limitations the individuals with disabilities may have may be preventing them from being able to do those particular types of jobs, or employers can't provide the accommodations that may be necessary.

SIMMONS-DUFFIN: This is why Carol Burgos feels so stuck. She would need to find a job, be healthy enough to do it, work not too many hours. Right now that's not happening. She does have good things in her life. She has her faith. She's born-again Christian. Her beat-up car works. She can visit her mother's nursing home and get around. She has a very sweet little dog.

BURGOS: Come on, stinky butt (ph). Come on. Come on.

SIMMONS-DUFFIN: And even though she uses a walker for long distances and fears she will end up in a wheelchair, for now she's still well enough to get up and down the stairs to her front door. Selena Simmons-Duffin, NPR News, Columbia County, N.Y.

(SOUNDBITE OF COURTNEY BARNETT SONG, "DEPRESTON") Transcript provided by NPR, Copyright NPR.