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Mustafa Rfat has been getting frantic phone calls recently from refugees with disabilities. As of Oct. 1, refugees are losing access to Medicaid across the country because of H.R. 1, the Trump administration's major budget bill Republicans passed last summer.
"I spent these past two weeks just talking with so many of them, literally just terrorized by the reality that their children with disabilities are losing coverage," he says. "For example, a father is a refugee with disabilities, with two kids with disabilities, and he's just confused how he's going to get the medication."
Rfat is a professor of social work at the University of Nebraska at Omaha, and his research focuses on refugees with disabilities, an experience he knows firsthand.
When he arrived in the U.S. as a refugee from Iraq in 2011, the chronic condition that affects his spine was severe. "I was in a very bad situation," he says. "I couldn't walk. I was in so much pain. I missed my medications for a long time. I didn't see a doctor. So it was a very, very difficult and vulnerable situation."
As he moved from Alabama to Illinois to West Virginia trying to find housing and continue his education, Medicaid was a lifeline, Rfat says. "I had to climb this big mountain of acclimating into the culture here, learning English, dealing with the traumas of the war, the loss of family members, the challenges that I faced, being alone with a disability," he says.
"I was determined and in this determination, Medicaid was the big factor that made my dreams come true." In fact, he says one of the specialists who treated him wrote his first reference to apply for college. He has since become a U.S. citizen with a family, a doctorate, and a job as a professor.
Now, he's trying to help refugees with disabilities facing the challenges of navigating life in the U.S. without that lifeline. As of Oct. 1, refugees are among the groups that will lose Medicaid coverage.
Hundreds of thousands will lose coverage
Only a small portion of legal immigrants have been eligible to enroll in Medicaid, including refugees and asylum seekers. Because of the changes to "Alien Medicaid Eligibility" in the One Big Beautiful Bill Act that Republicans passed last summer, an even smaller subset now have access. An estimated 280,000 people will lose Medicaid in October, according to an analysis by KFF Health News.
That includes immigrants admitted to the U.S. on humanitarian grounds who are waiting to be approved for a green card, explains Ben D'Avanzo, senior strategist at the National Immigration Law Center.
"The people who are losing Medicaid and CHIP [the Children's Health Insurance Program] are among some of the most vulnerable immigrants — people who have experienced violence in their own homes or on their journey, who may have physical and mental conditions, who are fleeing persecution and war," he says. "These are people who we have long, in the United States, welcomed, and populations who have had very strong, historic bipartisan support."
Rfat points out that refugees are more likely to have serious health conditions than other groups. "More than one third of them have at least one type of disability — this is what the research tells us," he explains. In refugee camps and during war access to doctors and medication is difficult, and simple conditions can become serious and complex.
That was his own experience with an inflammatory condition called ankylosing spondylitis. "By the time I arrived in the U.S., a lot of doctors told me, 'You are one of the worst cases that we are seeing,'" he says. "And that is the case for a lot of refugees that come here."
In a statement to NPR, the Centers for Medicare and Medicaid Services wrote that they are enacting the law passed by Congress working with states to accurately implement the policy. They did not respond to a follow up question about the effect of the policy on refugees with disabilities.
"Once these changes take place, these groups of immigrants will be left with very few options for affordable, comprehensive coverage," says Drishti Pillai, director of immigrant health policy at the nonpartisan health research organization KFF.
"They could still buy full price coverage from ACA marketplaces, but that is often unaffordable," Pillai says. "Employer-sponsored coverage is also an option, but many immigrants, especially those who are on Medicaid, don't work in jobs that don't offer employer-sponsored coverage, such as jobs in construction, agriculture, food service."
She says a few states are creating their own coverage options for these groups, but many have tight budgets and are facing even bigger Medicaid cuts in January. Most states have also opted in to allow Medicaid to continue to cover pregnant women and children who would otherwise be losing coverage.
D'Avanzo points out that the categories of people losing coverage now will eventually become green card holders who are eligible for Medicaid.
"So these are people who are going to put off preventative care, who are not going to treat their chronic conditions, who are going to forgo important medication," he says. "And then when they are Medicaid eligible again in the future, once they've received their green card, they're going to be needing much more specialized care and much more costly care."
Hope for change
Mustafa Rfat is headed to his alma mater Washington University in St. Louis, Missouri this weekend to meet with a few dozen refugees with disabilities and share some of his recent research. He says the loss of Medicaid and food benefits will hang over the event.
"It's a nightmare for the community," he says. He hopes Congress will reverse course.
He's decided to devote part of the event to teaching about civic engagement. "To understand the importance of voting when they become citizens, to understand the importance of being aware of the policies, being aware of who their representatives are, how to communicate with their representatives," he says.
"These are new Americans," he adds. "These people are going nowhere. By making their health and well-being worse, it's not going to benefit anyone."
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