For months, Evangelina Hernandez watched helplessly as her autistic twin sons regressed -- their screaming, biting and scratching worsening. The Wichita, Kansas, resident couldn't afford the $3,000 monthly tab for their 10 prescriptions or their doctor visits without Medicaid.
The toddlers, along with three of their sisters, lost their health insurance in May, swept up in the state's eligibility review of all its Medicaid enrollees. Hernandez said she only received the renewal packet a day before it was due and mailed it back right away. She also called KanCare, the state's Medicaid program, and filled out another application over the phone, certain that the kids remained eligible.
Yet, every time she inquired about the children's coverage, she was told the renewal was still being processed. And though her partner works for an airplane manufacturer, the family can't afford the health insurance plan offered by his employer.
"My kids are suffering. You can see it," said Hernandez, who along with her infant daughter, remained on Medicaid thanks to coverage provisions for low-income, postpartum mothers and babies. "The medication they're on, I can't afford it."
Just over a week ago, Hernandez got the call she had been waiting for: The kids' coverage was reinstated. However, the pharmacy told her it could not immediately fill her sons' prescriptions because it had to get their new enrollee information -- and even then, she could only pick up the medication for one son because there were errors in her other son's file.
The delays have consequences. Once they start taking the medications again, it will take about a month before their behavior starts to improve, she said.
All across the US, hundreds of thousands of children are being kicked off of Medicaid, even though experts say the vast majority continue to qualify. They are among the more than 87 million people in Medicaid and several million more in the Children's Health Insurance Program who are having their eligibility checked and are facing possible termination of coverage for the first time since the Covid-19 pandemic began.
States regained the ability to start winnowing their Medicaid rolls of residents whom they deem no longer qualify on April 1, when a pandemic relief program expired. Since then, at least 5.4 million people have lost their benefits, according to KFF, formerly the Kaiser Family Foundation.
Not every state breaks down their terminations by age. But in the 15 states that do, at least 1.1 million youngsters have been dropped, according to KFF. That includes Texas, where nearly half a million non-disabled children lost coverage between April and the end of July, accounting for 81% of the total disenrolled. In Kansas, Idaho and Missouri, kids make up at least half of those losing benefits.
As many as 6.7 million children are at risk of having their benefits terminated during the so-called unwinding process, according to Georgetown University's Center for Children and Families. Roughly three-quarters of them are expected to remain eligible for Medicaid but will likely lose coverage because of administrative issues, such as their parents not submitting the necessary paperwork or errors made by state Medicaid agencies.
This could lead to a doubling of the uninsured rate among children, said Joan Alker, the center's executive director, noting that Medicaid covers about half of kids in the US.
"Children have an incredible amount at stake here," she said. "We continue to be extremely worried as we see what's happening around the country."
Overall, nearly three-quarters of adults and children who have lost coverage were dropped for so-called procedural reasons, according to KFF. This typically happens when enrollees do not complete the renewal form, often because it may have been sent to an old address, it was difficult to understand or it wasn't returned by the deadline.
Some people, however, may not return their forms because they know they earn too much to qualify or they obtained coverage elsewhere, such as from an employer.
The high rate of procedural terminations worries federal officials and advocates because at least some of these folks likely remain eligible for Medicaid but may become uninsured.
A flood of terminations
In Idaho, there were 211,000 youngsters in the state's Medicaid and CHIP programs in February -- accounting for about half of the state's total enrollees.
But more than 55,000 children had their insurance terminated in the first four months of the unwinding.
"An obscene number of kids are losing their Medicaid," said Hillarie Hagen, a health policy associate at Idaho Voices for Children.
Among those processed were 33,000 children in families whom the state believes are no longer eligible. Nearly 23,000 of them were dropped for procedural reasons, Hagen said.
Also of great concern is that enrollment in Idaho's CHIP program has fallen by 16,000 kids during the same period. Hagen expected the number to rise since CHIP has a higher income threshold than Medicaid so some children should have shifted over automatically.
One main reason why so many children -- and adults -- are losing coverage is because Idaho is focusing initially on households that it knows earn too much or who haven't responded to the state in the last few years, said Shane Leach, welfare administrator for the state's Department of Health and Welfare. Idaho continued to check enrollees' eligibility during the pandemic, though it did not drop those who no longer qualified until now.
The department issues two rounds of notices, sends text messages and posts information in an online portal to let families know they need to return their renewal forms. Even if they miss the deadline, they can regain their coverage, he said.
"If anybody feels that they're eligible, then reach out and reapply," Leach said.
Children have higher income limits
Many parents may not realize that even though they don't qualify for Medicaid anymore, their children may still be eligible because the household income limit for kids to remain covered is higher, said Jennifer Tolbert, an associate director of KFF's Program on Medicaid and the Uninsured. This is especially true in the 10 states -- including Kansas, Florida and Texas -- that have not approved the expansion of Medicaid benefits to low-income adults.
Advocates are urging parents to complete and submit the renewal documents even if they think they earn too much to qualify themselves.
In some other cases, children are possibly being dropped because their state is applying the wrong income threshold to them.
In Florida, for instance, parents in a family of four must earn less than $8,520 annually to qualify, but children ages 1 to 5 are eligible if their household income is no more than $43,500, and those ages 6 to 18 can keep their coverage if their family earns less than $41,400, said Lynn Hearn, a staff attorney with the Florida Health Justice Project, an advocacy group.
Children's enrollment in Medicaid dropped by roughly 154,000 kids, or 5.7%, between May and July, according to a Georgetown analysis of state data. The state does not break down terminations by age.
Hearn and her colleagues have had success in restoring some children's coverage by appealing to the state and pointing out that the family's income is less than the eligibility threshold for kids.
Another concern is that youngsters are not being automatically referred to the state's CHIP program, Florida KidCare, Hearn said.
"I have yet to see a case where the referral happened timely and accurately," she said.
When asked about the advocates' concerns, Florida's Department of Children and Families referred CNN to a fact sheet listing the state's outreach efforts and enrollee support, including that it has more than 2,700 employees processing cases and assisting participants.
Restoring benefits can be complicated
Once a family loses coverage, regaining it can be frustrating and time-consuming. Tanya Harris spent weeks calling Florida's Department of Children and Families, waiting on hold for hours at a time, to restore her kids' insurance.
The Jacksonville resident only learned in late June that they would be cut off after she called the insurer that contracts with Florida to provide her family's Medicaid benefits. She needed to discuss her 17-year-old daughter's upcoming spinal surgery. Harris quickly filled out the renewal paperwork on the state's online portal but was stuck in processing limbo for well over a month.
Harris, who is on long-term disability from her employer as she battles several health conditions, spoke to multiple supervisors and uploaded verifications of her and her husband's income and address over and over again.
Though the family regained Medicaid coverage in early August, their headaches aren't over. Some doctors won't see the kids until they receive their new insurance information, which Harris hopes will be settled next week. And she's still not able to get some of their medications.
Meanwhile, her 6-year-old son, who has a severe peanut allergy, cannot sit with his classmates at lunch at his new school until his doctor sends in a medicine authorization form for his EpiPen.
"It was just devastating," Harris said of the coverage loss. "The kids didn't get the care that they need."
Engaging parents
Some advocates are trying to take advantage of the start of the school year to alert parents to the importance of submitting their renewal documents.
In Kansas, where nearly 46,000 youngsters have been disenrolled so far, multiple groups are setting up tables at back-to-school events, working with school nurses and doing outreach through early childhood organizations, said Heather Braum, a health policy adviser at Kansas Action for Children.
KanCare reaches out to enrollees at least four times before their renewal is due to encourage them to return the needed paperwork, said Matt Lara, communications director for the state's Department of Health and Environment. The agency also paused procedural terminations in May and June to give folks more time to send in their packets, as well as hired extra staff to work in the call center and help process renewals.
However, more should be done to improve the system and make sure eligible children maintain their coverage, Braum said.
"Kids' medical care in so many situations can be very time sensitive -- where they're getting therapies and treatments and prescriptions," she said. "If it gets delayed, it can have a permanent impact on their lives. Outcomes can be very different. And that's inexcusable to me."