Theresa Luoni: What It Really Means to Rely on Medicaid

In Basking Ridge, New Jersey, Theresa Luoni is raising 12-year-old twin boys with autism. Her life revolves around ensuring they have the care, therapies and opportunities they need—not just to survive, but to thrive.

Theresa’s sons, Dylan and Max, were born prematurely at just 26 weeks. “They both stayed in the NICU,” she recalls. “Dylan was my holdout. He was 91 days, but Max came home at 89 days.” Because of their early and complex medical needs, the boys qualified for Medicaid through the SSI Disability Program. Since then, Medicaid has been a constant in their lives, sometimes interrupted, but always essential.

Theresa is their full-time caregiver, but she also works part-time in retail management around her children’s schedules, thanks to a flexible opportunity with a former employer. “I just work as a staff member and help with training and stuff,” she says. “About six hours a week.” It’s a small income, but it gives her a way to stay connected to the workforce without sacrificing her sons’ needs.

Dylan receives occupational therapy and speech therapy, both partially funded by Medicaid. Max attends a therapeutic placement rather than a traditional academic school, where he receives behavior therapy, speech therapy and occupational therapy. “All of that is partially funded through Medicaid too,” Theresa explains. Even outside of their specialty care, Theresa has relied on Medicaid to keep her boys healthy. “It’s helped me cover everything with having them, vaccines, medications, well checks, dental visits, eye exams, all the preventative care.”

The value of Medicaid goes beyond these individual services. For Theresa, it provides peace of mind and the ability to be there for her sons when they need her most. She remembers one especially difficult moment during the holidays last year when both boys had pneumonia.

With help from Medicaid, Theresa was able to take them to a pediatric urgent care clinic where the staff was trained to support children with autism. “I don’t know what I would have done if we didn’t have Medicaid. The holidays are already financially stressful. Not being able to work because my children were home means there’s no paycheck coming in. And then on top of it, I wouldn’t have been able to afford the diagnostic treatment they needed.”

“Just walking in the door to an urgent care would have been about almost $200 for each child,” she continues. She remembers dropping them off after the visit to go pick up their prescriptions. “I was so grateful they had health insurance. It’s one thing I don’t have to wake up in the middle of the night and think about.”

Without Medicaid, Theresa says, her family would be forced to go without basic health care. “We would skip routine checkups, dental exams, vision exams. I would only take them in when they’re already sick. And I would have to start making even harder choices about which needs we go without, things like food, diapers, my own glasses or contact lenses.” Even with the support of Medicaid, Theresa is already making sacrifices daily, claiming she skips wearing her contacts some days just to save a little money.

“If I had the chance to speak directly to my member of Congress,” Theresa says, “I would tell them there’s no way to not negatively impact every single constituent living in your district if you make these Medicaid cuts. It will start with the most vulnerable, like me and my children, but it won’t stop there.”

“People will still get sick. People will still have preexisting conditions. People will still need services,” she says. “Cutting Medicaid just means more people will go without, or everyone will face higher costs and longer wait times.”

She urges elected leaders to vote no on proposed budget cuts to Medicaid. “It doesn’t make fiscal sense. It doesn’t make moral sense. You’re taking away from people who are struggling already to make people who are already rich even richer.”

For Theresa Luoni, Medicaid is more than a policy or a program. It is what allows her to care for her children and give them a future. “I don’t want to live in a country where we look at any child or person in need of basic human needs—health care, food—and choose billionaires over them. Medicaid helps us keep going.”