Lindsey McNeil and her 7-year-old daughter, Noelle, who suffers from 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.
From then on, their lives began to fall apart, Ms. McNeil said. Noelle has stopped seeing the four therapists she sees every week and she is running out of medications she needs to prevent her seizures from flaring up. Monday brought some relief: Ms. McNeil learned that Noelle's coverage had been temporarily reinstated pending a resolution on an appeal she filed with the state.
“We have worked really hard to grow our family, our life and a home for this baby,” Ms. McNeil said. “It's a little disheartening to think about what she might lose and what we might not be able to provide.”
Noelle was one of the most recent victims of the easing 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 effect, enrollees were spared regular eligibility checks. Enrollment in Medicaid and the Children's Health Insurance Program has increased to a record high of more than 90 million, and the uninsured rate nationwide has fallen to historic lows.
But the policy collapsed in early April last year, allowing states to resume reducing their roles, and the so-called liquidation process that followed had far-reaching effects. According to KFF, a nonprofit health policy research group, more than 20 million Americans lost Medicaid at some point last year — an unprecedented event in the nearly 60-year history of the joint federal-state program. United.
The hardships are not over yet. Only about 70% of renewal checks have been completed, according to Daniel Tsai, a senior official at the federal Centers for Medicare and Medicaid Services, suggesting that millions more people could lose coverage before the process concludes.
Here are some takeaways from the contraction of Medicaid over the past year.
Many of those who lost coverage have not found an alternative.
In a survey released Friday by KFF, nearly a quarter of adults who lost Medicaid during the dissolution said they were currently uninsured, while 70% of those who were dropped from the program said they were left uninsured at least temporarily.
The Affordable Care Act marketplaces, which have seen record enrollment numbers for 2024, have provided refuge for some people. Edwin Park, a researcher at Georgetown University, pointed to recent federal data showing that about 25% of those who lost Medicaid were on marketplace plans.
Children have been hit particularly hard.
More than half of the country's children were covered by Medicaid or the Children's Health Insurance Program before the settlement began, and the price to pay for that population has been substantial.
Nearly five million children have lost Medicaid so far, according to state data analyzed by Georgetown researchers. About two million of them were in Texas, Georgia and Florida, all of which did not expand the program under the Affordable Care Act.
The coverage losses were severely damaging although temporary. In Richmond, Virginia, Trina King's 12-year-old son, Jerome, who has Down syndrome, went without Medicaid for about two months late last summer and early fall. Ms King said the gap was the result of a series of delays in confirming Jerome's eligibility after she moved and missed a renewal package. The mail had been sent to her old address even though she had notified the state of her move, Ms. King said.
Jerome, whose coverage was eventually reinstated, missed appointments with a list of specialists who accept Medicaid, including a spine doctor; an 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 cancelled. Ms. King postponed a post-op follow-up appointment that Jerome needed and also missed some of his routine medical appointments.
Most people are abandoned due to bureaucratic errors.
Like Jerome, about 70% of people who lost Medicaid were dropped for what were considered procedural reasons, according to a KFF analysis of state data. Many people lost coverage after failing to return required documentation to a state Medicaid office, while others were accidentally dismissed 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 documents were mailed to an old address. Mx. Jolley, who uses the pronouns they and them, said they were unable to secure coverage again despite applying three times to get back into the program.
“It's all pretty terrifying,” Mx. Jolley said, adding that they had skipped medical and therapy appointments and reduced psychiatry 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 state Medicaid programs are set up help explain different procedural dropout 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 what state they live in, has been very different,” said Tsai, the federal Medicaid official.
Jennifer Tolbert, a health policy expert at KFF, said the breakup exposed the nation's highly decentralized Medicaid administration system, with states using different technologies, some of them outdated and faulty.
Kelly Cantrelle, a top Medicaid official in Nevada, said the software the state used to check eligibility had not been programmed to properly screen each member of a family, a problem that at one point led to children being kicked out of Medicaid even if they were still eligible. The state contractor responsible for the software had to scramble to update it, she added.
Conducting enrollment checks has been a complex undertaking even for large state Medicaid bureaucracies. Pennsylvania had about 6,000 full-time employees working on the dismantling, said Hoa Pham, an official with the state Department of Human Services.
Some argue that reducing enrollment will bring Medicaid back to its intended scope.
Some health policy experts and state leaders argued that reducing Medicaid rolls in the past year was necessary to preserve the program for those who were eligible.
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 per year. year.
“Medicaid has eligibility requirements that are on the books,” said Drew Gonshorowski, a Paragon researcher who has written about the potential savings from cutting Medicaid rolls. “We should not expand coverage haphazardly by simply avoiding making eligibility determinations. The program should work as intended.”