Lindsey McNeil and her 7-year-old daughter, Noelle, who has cerebral palsy and epilepsy, were shocked by a notice they received from the Florida Department of Children and Families late last month that Noelle would lose her Medicaid coverage 10 days later .
Their lives have since begun to unravel, Ms McNeill said. Noelle has stopped seeing the four therapists she sees every week and has run out of the medication she needs to keep her seizures from flaring up. Monday brought a measure of relief: Ms. McNeil learned that Noelle’s coverage had been temporarily reinstated as they await the resolution of an appeal filed with the state.
“We have worked very hard to raise our family and our lives and a home for this child,” Ms McNeil said. “It’s a little scary to think about what she might be missing out on and what we can’t offer her.”
Noelle was one of the latest victims of the repeal of a pandemic-era federal policy that required states to keep people on Medicaid, the health insurance program that covers low-income Americans, in exchange for more federal funding. While the policy was in place, registrants were spared regular eligibility checks. Enrollment in Medicaid and the Children’s Health Insurance Program increased to a record of more than 90 million, and the nation’s uninsured rate fell to record lows.
However, the policy expired in early April last year, allowing states to continue cutting their rolls, and the so-called unwinding process that followed had far-reaching effects. More than 20 million Americans lost Medicaid at some point in the past year, according to KFFa nonprofit health policy research group — an unprecedented event in the nearly 60-year history of the joint federal-state program.
The disruption isn’t over yet. Only about 70 percent of renewal checks have been completed, according to Daniel Tsai, a senior official at the federal Centers for Medicare & Medicaid Services, suggesting millions more people could lose coverage by the time the process is complete.
Here are some highlights from Medicaid shrinking over the past year.
Many of those who lost coverage have not found an alternative.
In A research released Friday by KFF, nearly a quarter of adults who lost Medicaid during the liquidation said they were currently uninsured, while 70 percent of those who dropped out of the program said they had ended up uninsured at least temporarily.
The Affordable Care Act’s marketplaces, which saw record enrollment for 2024, provided a refuge for some people. Edwin Park, a researcher at Georgetown University, pointed to recent federal data showing that about 25 percent of those who lost Medicaid had signed up for marketplace plans.
Children have been hit particularly hard.
More than half of the nation’s children were covered by Medicaid or the Children’s Health Insurance Program before the easing began, and the toll on that population has appeared.
Almost five million children they have lost Medicaid so far, according to state data analyzed by Georgetown researchers. About two million of those have been found in Texas, Georgia and Florida, which have not expanded the program under the Affordable Care Act.
Coverage losses are serious, even when temporary. In Richmond, Va., Trina King’s 12-year-old son Jerome, who has Down syndrome, went about two months without Medicaid late last summer and early fall. Mrs King said the gap was the result of a series of delays in confirming Jerome’s eligibility after he had moved and missed out on a renewal package. The mail had been sent to her old address, even though she had notified the state that she had moved, Ms. King said.
Jerome, whose coverage was eventually reinstated, skipped appointments with a list of specialists who accept Medicaid, including a spine doctor. ear, nose and throat specialist. a cardiologist; and a urologist, Ms. King said. During the gap in his coverage, his sessions with a home health aide had to be canceled. Mrs. King postponed a post-op follow-up appointment that Jerome needed and also missed some of his regular medical appointments.
Most people get fired because of clerical errors.
Like Jerome, about 70 percent of people who lost Medicaid were fired for procedural reasons, according to a KFF analysis of state data. Many people lost coverage after failing to return required paperwork to a state Medicaid office, while others were started in error due to technical problems.
Hunter Jolley, a 33-year-old bartender in Little Rock, Ark., who makes about $19,000 a year, lost Medicaid last fall after renewal paperwork was mailed to an old address. A.D. Jolley, who uses the pronouns they and them, said they were unable to regain coverage despite applying three times to return to the program.
“It’s all very scary,” said Mx. Jolley said, adding that they had skipped medical and therapy appointments and reduced psychiatric appointments to once every three months, paying $270 out of pocket.
These technical errors stem in part from the way Medicaid is organized.
The different ways in which state Medicaid programs are set up help explain the different procedural census rates, health policy experts said.
“People often think of a large Medicaid program when we talk about aggregate numbers, but the experience of people across the country, depending on the state they live in, has been very different,” said Mr. Tsai, the federal Medicaid official.
Jennifer Tolbert, a health policy expert at KFF, said the relaxation exposed the nation’s highly decentralized Medicaid management system, with states using different technology, some of it outdated and dysfunctional.
Kelly Cantrelle, Nevada’s top Medicaid official, said the software used by the state to verify eligibility was not programmed to properly screen every member of a household, a problem that at one point led to children being booted from Medicaid, even if she was still eligible for it. The government contractor responsible for the software had to try to update it, he added.
Conducting enrollment audits has been a complex undertaking even for large state Medicaid bureaucracies. Pennsylvania had about 6,000 full-time employees working on decontamination, said Hoa Pham, an official with the state Department of Human Services.
Some argue that cutting enrollment will bring Medicaid back to its intended range.
Some health policy experts and state leaders have argued that smoothing the Medicaid rolls over the past year was necessary to preserve the program for those who were eligible for it.
Researchers at the Paragon Health Institute, a conservative policy research organization, estimated last summer that there were about 18 million people on Medicaid who were ineligible for coverage, costing the program more than $80 billion a year.
“Medicaid has eligibility requirements that are on the books,” said Drew Gonsharowski, a researcher at Paragon who has written about the potential savings from trimming Medicaid rolls. “We should not haphazardly extend coverage by not making eligibility determinations. The program must work as intended.”