Selene Rocha can’t use the left side of her body for almost any task.
Rocha, an undocumented immigrant from Mexico who was living in Olathe, suffered a stroke more than a decade ago that temporarily left her in a coma and then partially paralyzed. Unable to move her left arm away from her body and with little to no mobility, she lost her job as a commercial cleaner.
Early in her recovery process, she had a chance to go to physical therapy once a month through a free health clinic in Wyandotte County. But there were a few issues with accessing the service.
First, the clinic offered physical therapy on a rotating basis so Rocha was only able to attend once a month. And within a few years, she stopped going altogether after her husband left her and their young daughter Marissa, claiming Rocha wasn’t making enough progress.
Nowadays, Rocha relies heavily on Marissa, now 8, to help her through the day.
“Without my daughter, I’d be all alone. I go to school or the bank or the doctor and she helps me,” Rocha said. “Around the house she’ll see me cleaning and offer to help too. My daughter is my salvation.”
Marissa is a U.S. citizen who serves as her mom’s interpreter and helper. They live together in a single room at Rocha’s mother’s house in Gardner, Kansas, where Rocha spends almost all day, every day.
When they need to get around they rely on Uber, but without a steady source of income that isn’t always something they can afford. They survive off the generosity of their family and $500 in monthly child support from Marissa’s father.
“When we do go out and we need to go, um, get food or something like that, it's kind of hard because other people just look at her weird,” Marissa said of her mother’s disability. “She's the one that cleans the house, but for her to get up and walk hard so most of the time I help her.”
Selene Rocha’s struggle to get medical care isn’t unusual for immigrants living in the Kansas City metro, regardless of immigration status.
Half of undocumented immigrant adults report being uninsured nationwide. One in five lawfully present immigrants also say they're uninsured. That compares to fewer than one in ten uninsured among naturalized citizens or people born in the U.S.
In Johnson County, Kansas, and Jackson County, Missouri, more than half of undocumented immigrants say they were uninsured between 2014 and 2016, according to a report published by the Migration Policy Institute. In Wyandotte County, about three quarters reported the same.
Even immigrants who do have insurance are more likely to report skipping or delaying needed care.
“Oftentimes medical care does get pushed down the priority list, and it's not because they don’t care but because they're having to prioritize,” said Andrea Perdomo-Morales, the chief health equity officer at Vibrant Health, a Wyandotte County clinic that offers services regardless of ability to pay.
Many of their clients, Perdomo-Morales said, must ask themselves: “If I ask off for work, am I at risk of being let go? I need the money to put food on the table and provide for my family.”
A language barrier
Perdomo-Morales said there are a few barriers that deter even people who have insurance or can ask for time off of work. Chief among them is a lack of people who speak their language.
Perdomo-Morales and Vibrant Health are a part of Communities Concern for Immigrants and Refugees, or CCIR, a group of local services and advocacy organizations serving immigrants and refugees. The problem of language barriers comes up frequently.
Census data estimates more than 50,000 Kansas Citians speak a language other than English at home. Around 20,000 have limited English proficiency. In many of these households, children like Marissa often are tasked with interpreting.
“It really puts the children in a very, very tricky situation and oftentimes they're not able to process it in the best ways,” Perdomo-Morales said. “Additionally, I think when we're getting into medical services or just some of the terminology is hard for an adult to know what it means.”
Rocha is quick to praise Marissa’s Spanish vocabulary and maturity in these situations. And Marissa said she enjoys it. But she admitted that like any third-grade kid, there are plenty of English words she doesn’t know.
Perdomo-Morales said she understands that many families may not have a choice, but ideally this shouldn’t be happening — especially in federally funded hospitals and health care settings mandated to provide interpretation services. She said these providers need more education about these services, because many either don't know about them or are not following through.
For providers who don't have interpreters on site, Perdomo-Morales said some interpreting services can assist over the phone, but that still might lack the personal touch needed in a delicate medical situation.
And there are some efforts to improve translating and interpreting services in the metro. A new Kansas City ordinance will create the Office of Language Access to expand the city’s translation abilities.
Under the existing translation services, Kansas City spends about $28,000 on translation for the Health Department alone. The Office of Language Access would help expand this to other departments but also provide more up-to-date public health information.
Suburban sprawl
Perdomo-Morales said reliable interpretation services become increasingly scarce the farther you are from the city. The same can be said for finding consistent medical care.
While federally qualified health centers, or FQHCs, like Vibrant Health are a good alternative for many immigrants who need care, there are only three in Johnson County and none of those are in Gardner. The clinic closest to Rocha is Health Partnership Clinic in Olathe, where she used to go before moving.
Now, it’s a 15-minute drive, one that is difficult without a car or the ability to drive. Instead, she relies on Uber which can be inconsistent, especially in Gardner.
“The other day we had Marissa’s conferences and the Uber never picked us up,” Rocha said. “We’ve missed church many times because it never arrives. That rarely happened in Olathe.”
It turns out that Marissa’s conferences were scheduled during the Chiefs Super Bowl parade, meaning most Uber drivers were in the center of the city driving people home, not out in the suburbs.
Some transportation options are available but most come with stipulations or requirements. A person covered by Medicaid is eligible to receive a ride to a doctor’s appointment, but needs to call three days in advance and the rides only go to the doctor’s office.
“Sometimes those rides can get canceled and you can't go to places with that transportation — like the grocery store to get groceries, which is very much connected to your health,” Perdomo-Morales said.
Some FQHCs offer rides to the clinic but similarly don’t offer rides elsewhere. Johnson County Mental Health Center offers rides to work, school and other critical services to clients with intellectual disabilities or mental health challenges.
Scarce specialty services
Without a car, Selene and Marissa spend a lot of time indoors, where Marissa helps her mom with tasks around the house. But Rocha doesn’t want it to stay that way.
“If we have money for the Uber we go and do things, if not we stay here,” Rocha said. “It doesn't hurt me to have to sacrifice myself. It hurts me that (Marissa is) here stuck with me and nothing more.”
In their doorframe, Rocha has hung a bar that helps keep her paralyzed arm active. She can even move it away from her body now, something she couldn’t do just a year ago. But she still can’t walk very well, sleep on the left side of her body, turn her head fully or get up and down a full flight of stairs.
That sort of progress requires professional help. But if general medical services are already tough to navigate for immigrants, it's even harder to get the specialty care Rocha needs.
Some community partnerships or medical schools offer specialty care to uninsured people. One example is the JayDoc Free Clinic in Kansas City, Kansas, which has served nearly 1,000 patients, including Rocha, since it launched in 2003.
The student-run clinic provides non-emergency care to uninsured and underinsured people across the metro with general services Monday and Wednesday evenings and specialty clinics on Tuesday evenings.
“It's an amazing resource and service but as you can imagine, the need is so great, so it's a long wait time,” Perdomo-Morales said.
Rocha said she has been on a waitlist for occupational therapy in Johnson County for five years.
Home or health
With so many barriers, some immigrants choose to go back to Mexico for treatment. Rocha’s mom, for example, went back to Mexico for cancer treatment.
Rocha also considered that, but ultimately she kept coming back to the same thing.
“I could go but I’d have to return after and what about Marissa?” Rocha said. “This is her country. I strongly believe her future is here in the United States.”
To work, Rocha needs to be able to learn how to live with her disability. But to do that she needs therapy she can't afford. Even if she can find services, she wonders how to access them without a car or consistent public transportation.
It’s a tangled mess clinics and organizations like Vibrant Health are trying to unravel bit by bit. Progress can feel piecemeal, but even small changes to aid transportation or interpretation could mean big improvements for immigrants like Rocha.
While Rocha doesn’t have much faith in the options around her, she does believe she can make it through with the help of her daughter. Marissa agrees.
“She couldn't walk at all and, well, God decided 'I'm gonna let her walk,'” Marissa said. “She's not 100%, but she walks around. So I think somewhere in the future she would be able to get better.”
“Pero con tu ayuda,” her mom replied. But with your help.
