‘It doesn’t make sense’: Why millions of children have lost health insurance

AURORA, Colo. – Isabella Quintana’s first birthday came with an unexpected gift this summer: He suddenly lost his health insurance weeks later.

The little girl, who has heart murmurs and complications after contracting bronchitis, was covered by Medicaid, the federal program that protects low-income and disabled Americans. But over the summer, he was dropped from the program due to what his parents believe was a paperwork issue.

“It’s hard for us because we always think, ‘When will you get sick?’ It’s something we have no control over,” said his father, Gorman Quintana.

In recent months, one follow-up appointment for Isabella’s bronchitis costs $1,100 — about $35,000 a year for a Colorado family. Later when he developed a fever of 100.4 degrees, his parents waited longer than they would have to take him to the emergency room, hoping it would clear up.

“It’s hard, because you want them to get well right away, you know? You don’t want to wait until something happens, you know?” Quintana said.

Five months have passed, and Isabella’s parents say she still hasn’t received her Medicaid even though her brother — same family, same income — didn’t lose his home.

“It doesn’t make sense,” said Dr. Laura Luzietti, executive director of Every Child Pediatrics, where Isabella receives primary care. It says something didn’t go the way it was supposed to.

The Quintanas’ experience with Medicaid is unusual, Luzietti said.

“We have many families who have exactly the same story, and when they ask the registrars, they are told, ‘You are right. This doesn’t make sense. He should get his Medicaid back. It will only be a few months.’ But a few months without protection is a big deal for these young children.”

It appears that Isabella was caught after the biggest shakeup in Medicaid’s 60-year history.

When the Covid public health emergency ended, the federal government required states to reevaluate the eligibility of every Medicaid recipient. More than 25 million people lost coverage during the “unwinding” of Medicaid—most for operational reasons such as documentation issues, according to the health policy research group KFF.

By March 2023, nearly 40 million children are enrolled in Medicaid or the Children’s Health Insurance Program. As of this August, fewer than 5 million children are enrolled in the program, according to the Georgetown Center for Children and Families. It is not clear how many of those who lost coverage still qualify.

Joan Alker, executive director of the Georgetown center said: “No doubt some of them went elsewhere. But most of them probably didn’t, because most of them remained eligible for Medicaid, and that’s where they should be.” to be present.

Alker, who has followed children’s insurance for decades, said he expected the layoff to hit children hard.

“And it happened that way,” he said. But what surprised me was how it turned out differently depending on where the child lived.”

Other states, such as Kentucky, North Carolina and Washington, have done “a very good job of protecting children during the process,” he said. But other states — Texas, Utah, Colorado and Florida — have seen large numbers of children lose their Medicaid coverage.

In many places, the move created a backlog of paperwork. So, even though the break ended in the spring, kids like Isabella are still facing the consequences.

“That’s heartbreaking,” said Kim Bimestefer, executive director of the Colorado Health Care and Finance Agency, which oversees the state’s Medicaid program. “Everyone deserves protection. And, you know, we need to get – wherever we can – authority out of the way. ”

Bimestefer says it shouldn’t take four months for security to be restored after a paperwork error.

“If that happens,” he said, “there is something wrong.” Some people will fall through the cracks, and we work hard, and we are still working hard to find them and put them back together. ”

In Colorado, enrollment dropped more than 30%. More than 550,000 people have lost their health insurance, about 150,000 of them children, according to Bimestefer’s office.

A third of Coloradoans who lost Medicaid have had their coverage reinstated, according to the state. Some switched to employer-based insurance as the economy recovered after the pandemic.

But Bimestefer believes the state’s uninsured rate has risen since it was last released.

He said: “It is a big problem. “Every American should have health insurance. But the bottom line is, if you’re off Medicaid and you don’t have premiums, you don’t have deductibles and copays, then you come back to reality, that reality can be very difficult for families to deal with try to get people connected to the content that they deserve.”

Bimestefer said the government has created a new system to increase inspections and is expanding automation to cover the backlog.

But change is not coming fast enough for many families. At Every Child, Luzietti says nearly 7,000 of his patients have lost Medicaid, and the percentage of uninsured patients seeking treatment at his clinics has increased from 8% to of 15% during recess. He speculates that many others may be avoiding care altogether because they are worried about debt.

“We know that a lot of our uninsured patients don’t want to come in unless they really need something. A lot of them don’t get their preventive care, their vaccinations. They’re behind on things like developmental assessment,” he said. “We can miss the opportunity to intervene early and get kids speech therapy, occupational therapy, what they need to help them reach those milestones. And it really changes the development of see the long term.”

That’s exactly what worried Desiree Wines, whose 3-year-old son Jibreel has autism, communication problems and a problem with processing emotions. When he suddenly lost his Medicaid insurance last January, the home language and occupational therapies he received through Medicaid were canceled.

“It was sudden,” Wines said. They did not warn me in any way, shape or form.

Wines said Jibreel’s performance was restored after five months, but the collapse took longer.

Wines had spent more than a year applying to Medicaid for a special safety bed to help him sleep and prevent him from wandering outside. But shortly before it was set to sail, Jibreel’s Medicaid was canceled, along with the bed. For months, Desiree was forced to work through the process of reapplying. When the bed arrived in mid-December, Medicaid no longer covered the essential technology to keep him safe. So he sleeps on a mattress on Jibreel’s floor to prevent him from wandering at night.

He could walk out the door. He doesn’t know anything about injuries,” Wines said.

NBC News pressed the Biden administration on why the federal government hasn’t done more to ensure that states protect eligible families during the process. Medicaid is funded by the federal and state governments, both of which contributed to the reduction — with states implementing the new decisions and the federal government providing oversight.

“I can say to the parents and families and people that you have spoken to, those are difficult stories to hear. No parent, no family should have to go through that,” said Dan Tsai, director of the Biden Medicaid administration. “There are situations that we look at where the government has made a mistake, and we say, ‘You have to fix that. You need to pay for all the medical bills, everything that happened.’ But I would say, regardless of that, something is broken in the system or how difficult it is for the parent, the family, the person who is still able to go through that process.”

Tsai said each state has wide latitude in how it runs its Medicaid program — including how much it chooses to invest in streamlining its eligibility processes, the technology used to evaluate the authentication and efficiency of call centers. The country’s decisions have led to very different results.

“There are clear rules about what the federal government can require from the states,” Tsai said. “The biggest stick, which we’ve used in every one of the events we’ve been involved in, is to say, ‘If you don’t stop, pause, fix and get people back to work. , there will be a large financial penalty.’ Federal dollars. And we’ve said that time and time again.”

Some advocates question whether a larger loss of Medicaid coverage is in store when President-elect Donald Trump takes office. During his last term in the White House, he repeatedly tried to cut Medicaid.

But Trump recently told NBC’s Kristen Welker on “Meet the Press” exclusively that entitlement programs will not be on the table for cuts this time. “I can’t do it,” he said.

Meanwhile, health care providers say the rest’s legacy may not be fully realized for years.

“We have huge problems with chronic diseases in the elderly that are costing the system a lot of money,” Luzietti said. “Cutting out the care for children, the preventive care they need to grow into healthy adults, is the worst way to improve that problem.”

Suddenly, children like Isabella and Jibreel are already dealing with this problem.

Isabella’s parents are still waiting for her immunity to be restored five months later, holding their breath for another health crisis to strike.

Even once children get their benefits, the problems don’t disappear immediately. Jibreel went more than five months without speech therapy when his Medicaid coverage was revoked. His Medicaid has now been reinstated, his mother said, but he remains on a waiting list to return to treatment.