Omar spent the morning like a lot of teenagers — browsing YouTube videos ranging on topics from tech to anime.Unlike most teens, though, he wasn’t swiping through the videos with his fingers. The 19-year-old, who has Duchenne muscular dystrophy, uses his eyes to control the tablet, and he spends his days in a hospital bed that sits in the family’s small living room. A window next to his bed looks out on the family's suburban apartment complex. An entertainment center — decorated with "Dragon Ball Z" figurines — serves as storage for the medical supplies needed for his care.His parents, Mahmoud and Asmaa, are his caretakers. His mother often sleeps on the couch next to his bed. Omar’s parents, who asked that the family's last name not be published because they have an application pending for permanent U.S. residency, worry about how his health will be affected come Oct. 1, when they and an estimated 9,300 other immigrants in Illinois are expected to lose the health coverage provided for them through the government Medicaid program.“They’re caught between two fronts, really,” said Al Peters, director of immigration services for the Syrian Community Network. “They’ve lost their benefits, and they are not getting their next step in the process — their green card.”As part of the federal law known as the One Big Beautiful Bill, refugees no longer will be eligible for Medicaid, a state-federal program that provides health insurance coverage to low-income households and people with disabilities. It’s part of a larger overhaul the Trump administration is making to Medicaid including new work requirements.Wednesday is the last day of Medicaid coverage for these groups. The Illinois Department of Healthcare and Family Services calls the changes to Medicaid a “cruel measure” and says it’s the start of a larger effort that will leave hundreds of thousands of people in the state without access to care.“We are deeply concerned about the impact to families, especially as noncitizens have fewer options to gain medical coverage," a statement from the agency said. "This is the result of the federal law, and unfortunately there is no recourse for impacted noncitizens to receive Medicaid unless the law is changed." Syrian refugees Asmaa and Mahmoud pose with their disabled son Omar, 19, at their apartment on Monday. The family is concerned how the medicaid changes will affect the medical care their son receives.Mark Black/For the Sun-Times Refugees with permanent residency — a green card — will remain eligible for the program, according to the Illinois state agency.But Omar’s family, who fled Syria, have been left in limbo as U.S. Citizenship and Immigration Services has slowed the processing of green card applications. Refugees also were cut off earlier this year from another safety-net program, the Supplemental Nutrition Assistance Program — SNAP.Refugees are eligible to apply for permanent residency after one year in the United States. The Syrian Community Network is working with more than 780 refugees from various countries who are waiting for their applications to be processed, according to Peters, who said the staff is pushing for USCIS to expedite Omar’s green card application.“The process as such is designed to frustrate and disappoint,” Peters said. In Omar’s case, "that has potential fatal ramifications.”Stabilizing Omar’s health Atop a wooden cabinet, a machine monitors Omar’s oxygen. Another one keeps tabs on his heart. And another is used to help feed him.Mahmoud and his wife learned the intricacies of these machines that keep their son alive after arriving in the Chicago area in November 2023. Along a wall in their living room, the father points to a chair they use to bathe Omar. A wheelchair is tucked into a corner for the rare times they need to leave their apartment for doctor’s appointments.“The situation for Omar now is stable,” Mahmoud, speaking Arabic, said through a translator. Syrian refugee Omar, 19, needs various medical devices to survive.Mark Black/For the Sun-Times Omar’s health had gotten worse just before the family, which also includes two other children, 18 and 12 years old, was allowed to enter the United States through a refugee resettlement program.Omar was diagnosed with Duchenne muscular dystrophy as a child. People with this genetic neuromuscular disorder are missing dystrophin, which helps keep muscle cells together, and its absence leads to injury and loss of muscle function, according to the Muscular Dystrophy Association.By 2016, the family had relocated to Egypt when Omar lost the ability to walk on his own, according to his parents. They said he was still able to eat on his own but that they struggled to keep up with the physical therapy he needed and prioritized buying the medicines he needed.In January 2023 — just before they were scheduled to travel to the United States — Omar was hospitalized. His parents said he no longer was able to eat and breathe on his own and remained in a hospital for about a month and a half.Eventually, later that year, they were able to travel to Chicago. Omar spent his first months in the United States in various hospitals before, according to his parents, they went through a program to show them how to be his caretakers, allowing Omar to live at home. Mahmoud attends to some of the medical devices used by his disabled son Omar in their apartment on Monday.Mark Black/For the Sun-Times “We need two people to take care of him, day and night, because his situation is very dangerous,” Mahmoud said, and each of the machines needs to work properly to keep him alive.Medicaid covers all of the equipment in the family’s living room that has become Omar’s makeshift care center and pays them for their work as his caretakers, Mahmoud said.Every time a machine beeps, Asmaa said she tends to him. She said she would rather keep him at home, recalling how red his face turned any time they left him alone in a hospital for even a few hours.“He’s not going to be comfortable at the hospital because he doesn’t speak very good English,” Asmaa said through a translator. “He’s going to be so anxious, not understanding the language.”‘Living for our kid’Refugees have been eligible for Medicaid since at least 1996, though it’s likely they were eligible even before then, according to Andrea Kovach, a senior attorney with the Legal Council for Health Justice in Chicago.The new eligibility changes also will result in a loss of coverage for immigrants seeking asylum and those who entered the country through humanitarian parole, such as people who fled the war in Ukraine, according to the Illinois Department of Healthcare and Family Services. Other immigrants — naturalized citizens, permanent residents, children and those who are pregnant — will remain eligible.U.S. Rep. Delia Ramirez, D-Ill., whose congressional district includes the suburb where Omar’s family lives, wouldn’t comment on specific cases on which her office is helping but said many families will be devastated by the changes coming under the federal law.“We need bold legislation to address families' fear of losing their insurance,” Ramirez said. Asmaa attends to her disabled son Omar in their apartment on Monday.Mark Black/For the Sun-Times Uninsured immigrants still can turn to community health centers, but advocates for immigrants say they worry the change will increase the number of avoidable hospital emergency visits, Kovach said. That’s because refugees will remain eligible for emergency Medicaid, which offers a way for a hospital to be reimbursed for treating an uninsured person facing a life-threatening health emergency.“It has to be a serious medical emergency,” Kovach said. “That’s obviously not the most efficient way to get your healthcare. It’s not where individuals should go to get preventive care and screening.”Refugees can buy health insurance through the Affordable Care Act, known in the state as Get Covered Illinois, Kovach said. But starting in January, refugees no longer will be eligible for tax credits that make buying insurance through the marketplace more affordable, she said.“Even though all of the qualified immigrant groups are technically eligible for ACA coverage after Jan. 1, they will no longer be eligible for the tax credits,” Kovach said. “That eligibility is really meaningless. It’s hollow.”In mid-September, Mahmoud got a letter from Get Covered Illinois encouraging the family to buy insurance through the marketplace "because the Illinois Department of Healthcare and Family Services has determined that one or more members of your household do not qualify for Medicaid or All Kids."But, as Mahmoud runs through the family’s expenses — rent, utilities, phone bills — he’s not sure how they will be able to afford to make ends meet without Medicaid. Mahmoud said that he can get by without health insurance but that his son needs to stay on Medicaid.“We are here, living for our kid,” he said. ...read more read less