Jennifer Wiedmeyer used to take her 10-year-old son, Hayden, to a long list of doctors, including cardiologists, immunologists and therapists, all part of the careful routine that kept him healthy and growing. Born with DiGeorge syndrome, a rare genetic disorder that weakens his immune system, Hayden once saw as many as 13 specialists.
These treatments were once covered through Children’s Medical Services, a Florida program that supports children under 21 who qualify for Medicaid, until his coverage was unexpectedly dropped in 2023.
“I actually learned about it when I went to make an appointment for him,” said the Fort Myers mom. “They called me back and said, ‘Well, actually, you don’t have insurance.’ That’s how I found out.”
As states navigate the effects of President Donald Trump’s One Big Beautiful Bill Act, Medicaid programs are facing significant reductions. Florida falls into the group of states where children are at the greatest risk of losing Medicaid coverage.
With as many as 2.3 million children in Florida on Medicaid, for kids like Hayden, the threat to their insurance means the possibility of not receiving vital treatments and medications.
Hayden has five heart conditions, most of which don’t cause significant problems. Still, because he previously underwent surgery to repair vascular rings and has a small hole in his heart, he requires regular monitoring. Hayden’s routine echocardiogram and EKG, which are typically scheduled every two years, have been overdue since April 2024. Wiedmeyer says without insurance, she cannot afford to take her son for medical care.
Most children in the United States will depend on Medicaid or the Children’s Health Insurance Program at some point before they turn 18, and many lose that coverage for periods of time, according to research published by the Harvard T.H. Chan School of Public Health in the Journal of the American Medical Association on Sept. 24. Consequently, these coverage losses often force families into medical debt and lead to delays in necessary medical care, such as immunizations, well-child check-ups, and dental visits.
Children born into Medicaid or CHIP in non-expansion states like Florida were far more vulnerable: As many as 59% experienced at least one uninsured period, compared with 36% in expansion states. A non-expansion state is one that has not expanded Medicaid to allow more low-income adults to qualify for coverage under the Affordable Care Act. Florida is one of 10 non-expansion states, where the median time children go without insurance stretched to 18 months — 50% longer than in expansion states.
As a result of the One Big Beautiful Bill Act, Florida could lose $3.8 billion in Medicaid funds over several years, a loss that comes as Florida children are dependent on these programs.
“Florida’s child uninsured rate increased from 7.4% in 2022 to 8.5% in 2024,” author Joan Alker, executive director of Georgetown University’s Center for Children and Families, and a research professor at the university’s McCourt School of Public Policy, said in a written statement. “The number of uninsured children eligible for Medicaid in Florida increased by an estimated 67,000 — a 20% increase between 2022 and 2024.”
Past research has shown that when states expanded Medicaid for parents, enrollment increased among eligible children who were not previously enrolled. Earlier this year, advocates began a ballot initiative to allow Florida voters to decide whether to expand Medicaid access.
“In Florida, many eligible children may remain unenrolled because their parents are not eligible,” Ye Shen, a student in the Harvard PhD Program in Health Policy, said in a statement.
Already, even before potential cuts to Medicaid, only one in four children had continuous coverage.
Using a microsimulation model built from national data between 2015 and 2019, the researchers found children moved in and out of Medicaid coverage. They found that 61% of children were ever enrolled in Medicaid or CHIP, while 42% were uninsured at least once before turning 18.
As states respond to changes brought by the One Big Beautiful Bill Act, Medicaid programs are facing significant reductions. The Florida Health Justice Project estimates that the nearly $4 billion a year Florida could lose for its Medicaid program over the next 10 years directly threatens health care access for the state’s most vulnerable residents — which includes its children. In Florida, 60% of children rely on the program, which also covers more than half of the state’s children with special health care needs.
For parents like Jennifer Wiedmeyer, those cuts aren’t just numbers, they’re life-changing.
“You have to be a millionaire,” she said. “If you have a kid with special needs, you literally have to be a millionaire — and you wouldn’t be one for very long.”
This article was contributed as part of a collaboration between the South Florida Sun Sentinel and the Mako Media Institute at Nova Southeastern University.
