A movement spreading across Illinois is creating a health care revolution for refugees from countries including Burma, Bhutan and Iraq.
For them, a health care safety net is forming in small towns and big cities, alike, where health professionals with a passion for improving lives and refugees join forces.
Refugees themselves - who often speak several languages - are joining clinic staff and lobbying for more health and social services. Patient navigators, including volunteers, help get people to appointments and explain use of medications. But the services, critical for many, may only be free for eight months and refugees and supporters are trying to identify alternative places for them to turn.
Refugees such as Bashir, an Iraqi who suffers from hemophilia, find otherwise-unavailable health and social services from institutions passionate about healing body, mind and spirit. But he said his coverage will expire at the end of the year.
Others, like Gawmu Pyaohn, a Burmese refugee who arrived in the United States on Halloween 2006, find eyes and ears willing to look past surface assumptions to determine accurate diagnoses. Though her son had a learning disability, his refugee status initially made others mistake his academic struggles for poor English skills, said Pyaohn through a translator.
“In the school when he is studying, the teacher thinks it’s a problem because of language, but they did not appreciate the real situations of my son,” said Pyaohn, who noted that her child developed speech difficulties at age 11.
It's impossible to understand the movement unless you witness it from inside, says one of the chief proponents, Dr. Gary Kaufman, the medical director of Mt. Sinai’s Touhy Health Center in Rogers Park. That’s where we go.
The view from the ground
Kaufman gestures to a crowd of about 30 waiting patients standing in the lobby of Touhy Health Center. He introduces them in the manner of extended family, their names and points of origin tracing a map-shaped family tree.
Kaufman explains the center’s history and significance with photos, anecdotes and references to the champions for refugee health: Dr. Edwin Silverman, who serves as Illinois’s State Refugee Director, and Dr. Norton Sokol, a former head of Touhy venerated for his contributions to the refugee community.
When Silverman fights for increased refugee health resources, he’s also fighting for these refugees and this history.
Within the walls of Touhy, the push is personal for improved refugee healthcare and social services.
Take Imad Al Dulaimi, for instance.
The deaf Iraqi refugee, a patient of Kaufman's, arrived in Illinois in 2010 with the help of the United Nations. Despite having no knowledge of American Sign Language, Al Dulaimi managed to work with Kaufman and a local refugee interpreter to bridge the communication gap. Since then, he’s found an apartment, learned how to use a video phone, continued his education and begun working with local deaf outreach efforts to pay the kindness forward.
New country, new problems
Refugees are individuals who request permission to enter the United States due to actual or feared persecution on the basis of “race, religion, nationality, membership in a specific social group or political opinion,” according to the U.S. Department of Homeland Security.
Their humanitarian urgency differentiates them from other immigrants. But the refugees’ journey doesn't end once they’re stateside. Refugees face many health challenges - but the chief challenge is insurance coverage.
Federal refugee medical assistance provides medical coverage lasts eight months for single adults and married couples without children. Families with dependent children are eligible for Medicaid and children get until age 19.
The current eight-month cycle under refugee medical assistance came about in 1990, when the coverage period was shortened from 36 months.
Dr. Megha Chadha, a Nigerian-born psychiatrist who works part-time at Touhy, lived in India before moving to the United States. Her multicultural experiences helps her empathize with patients, she said. This understanding transcends language boundaries and gives her a deeper understanding of needs, she said.
“Seeing the contrasts, I think I can appreciate what it’s really like to be in those kind of countries,” Chadha said. “I think there’s a lot of people who don’t realize what it feels like to be a refugee.”
“You take things like being part of a country, being a part of a community, for granted, and you don’t realize the importance of that,” continued Chadha. “I think that’s what’s different from refugee community than a regular person on the street…you don’t know what it feels like to just not belong anywhere.”
Chadha said that one major difficulty in working with refugees is navigating cultural understandings of what conditions do – and don’t – warrant treatment.
Some of her patients arrive with psychological conditions including post-traumatic stress disorder and depression. But a lack of education or health care in their own countries means that patients aren’t always aware they require treatment.
Cultural perceptions of what’s considered normal and abnormal must be understood by medical practitioners because refugees "may or may not report those things,” Chadha said.
Kaufman said some refugees hold an “if it doesn’t hurt, it can’t be a problem” philosophy. However, he said, while an American’s invisible problem might be something along the lines of high blood pressure, a refugee’s hidden condition might be more akin to hepatitis C.
Kaufman listed two important obstacles facing refugee health: unemployment and childcare.
“In many countries, a large family is a sign of prosperity, even if you’re poor,” Kaufman said. “One of my Somalis has 13 kids. About a third of them were born here.”
But he said the burden of balancing health-related cost with everyday expenses (specifically, the need to choose between feeding one’s family and receiving medical care) is a refugees’ greatest health-related challenge.
According to Amy Rowell, another health issue that refugees face is the shift from a survival-based lifestyle into a quality-of-life-based one in which long-needed treatments are no longer postponed.
“If they’ve had a tooth that’s needed to be pulled for five years and then they get into the country, we’re going to need to get that extracted,” says Rowell, director of nonprofit World Relief’s Moline office. “When you’re a refugee in some places in the world, it’s for survival. It’s not about managing your health long-term.”
World Relief assists in refugee resettlement, among other things.
One of Rowell’s jobs is to serve as a point-person who brings the refugee health story to a wider audience to ease their transitions into American society. Rowell said her organization works towards improving this issue through patient navigation, education and interpretation.
Kristine Sibounheuang, a nurse and clinical manager at the Winnebago County refugee and tuberculosis clinics says access to care, in general, is another huge issue.
“Because there are so many barriers out there because of language, transportation, people who are here more than eight months— if they don’t have family, they lose their medical cards and they don’t have coverage,” she said. “And they don’t understand.”
The fine print
Three main groups comprise the majority of Illinois’ more recent refugee population: the Iraqis, Burmese and Bhutanese, Silverman said.
According to data from the U.S. Department of Health and Human Services’ Office of Refugee Resettlement, 1,941 refugees arrived in Illinois in 2011.
Of these, 503 came from Bhutan, 568 came from Burma and 599 were from Iraq.
“The Bhutanese and the Burmese have been in refugee camps for more than 10 years,” Silverman said.
“The Iraqis who are coming have been so-called ‘urban refugees.’ They haven’t been in camps. They have been in mainly Jordan and Syria.”
“The three groups have not had access to adequate healthcare for a number of years and so they are arriving with need for health assessment and healthcare,” he continued, noting that specific refugee health needs different between each community.
Silverman, who has worked with Illinois’ state refugee program since January 1976, got his start when he was asked to help coordinate the Vietnamese refugee resettlement while working in the governor’s office.
“I’ve been involved ever since,” he said.
In terms of these newcomers’ health situations, all refugees coming to Chicago are required to have an initial health screening (otherwise known as a comprehensive refugee health screening assessment) at one of three state-funded providers within 90 days of arrival in the U.S, according to Illinois State Refugee Health Director Jenny Aguirre.
Three screening providers cover Illinois and the Touhy Health Center is the only location in Chicago.
These screening costs are covered by the state and Medicaid or refugee assistance cover subsequent treatment. However, various nonprofits and medical centers provide refugees various health and social services at low or no cost.
According to Aguirre, 2,085 comprehensive refugee health screening assessments were provided in fiscal year 2011 – an 872-patient increase from fiscal year 2009. The number of screened patients was calculated as the number of provider reimbursements issued by the state each year.
Despite the difficulties faced by refugee healthcare providers and refugee affairs administrators, their progress motivates plans for the future.
“You develop a database of ways to assist the refugees,” says Kaufman about the way he and his center attempt to link refugees with various resources to improve their health and well-being, including referrals to specialists willing to provide low-cost (and, in rare instances, pro-bono) treatment.
Another huge boon for the Touhy Health Center offers refugees is an on-site pharmacy where much of the medication is funded by state grants. Here, patients can receive medication-related information and instructions in their native languages.
“I think the fact that we get more involved in their social situations,... in educating them, we get involved with helping them with things that they aren’t aware of, [that] they [refugees] don’t know that physicians… or social workers can do – I think that's the biggest impact that we end up having on them,” Chadha says. “We may or may not be very effective, but we intervene at a global level, not just a medical level.”
Nearly everyone interviewed agreed that increased translation, patient education and coverage, and funding would help improve the situation, as well.
On the policy-level, a recent collaboration between Northwestern University, Access Living and local players within the refugee health movement resulted in the publication of a refugee-minded policy brief for healthcare and refugee leaders, policymakers and the general public alike.
The brief focused on health and social service barriers that refugees face when entering the U.S. with preexisting disabilities and chronic health conditions. The document was distributed during a Refugee Town Hall meeting held at Access Living in Chicago. It provides an outline for recommendations for improvements to policy, practice and research dealing with disabled and chronically-ill refugees. Mansha Mirza, Ph.D. (associate professor of occupational therapy at the University of Illinois-Chicago) and Bhuttu Matthews (disability coordinator at Access Living) served as co-principal investigators on the project.
Recurring themes included the need for increased coverage, improved data collection and communication between refugee screeners around the world. Other topics were increased patient education and translation, the implementation of culturally-sensitive mental health services and standardized health screening.
While this briefing was aimed at a smaller group of refugees, its core values can be applied to serving the greater community. The initiative’s pairing with practitioners’ forward thinking sets the stage for a refugee-care revolution.
And whether or not it's televised, we'll be watching.