Days out from a surgery and with a young son undergoing chemotherapy, Kyle McHenry was scrambling to figure out if his Florida family will still be covered by Medicaid come Monday.
One form on the state's website said coverage for their sick 5-year-old son, Ryder, had been denied. But another said the family would remain on Medicaid through next year. Still, a letter from the state said McHenry now makes too much money for him, his wife and their older son to qualify after the end of the month.
Three phone calls and a total of six frustrating hours on hold with Florida's Department of Children & Families later, the McHenrys finally got the answer they were dreading on Thursday: Most of the family is losing Medicaid coverage, although Ryder remains eligible because of his illness.
“I’m trying not to go into panic,” McHenry's wife, Allie McHenry, told The Associated Press .
The state agency did not respond to AP's request for comment.
The McHenrys, who live in Winter Park, are among the first casualties in an unprecedented nationwide review of the 84 million Medicaid enrollees over the next year that will require states to remove people whose incomes are now too high for the federal-state program offered to the poorest Americans.
Millions are expected to be left without insurance after getting a reprieve for the past three years during the COVID-19 pandemic, when the federal government barred states from removing anyone who was deemed ineligible.
Advocacy groups have warned for months that confusion and errors will abound throughout the undertaking, wrongly leaving some of the country’s poorest people suddenly without health insurance and unable to pay for necessary medical care.
Medicaid enrollees are already reporting they've been erroneously kicked off in a handful of states that have begun removing people, including Florida, Arizona, Arkansas, Idaho, Iowa, New Hampshire and South Dakota, according to data gathered by the AP.
Trevor Hawkins is seeing the problems play out firsthand in Arkansas, where officials told the AP that the state is moving “as fast as possible” to wrap up a review before year's end.
Hawkins spends his days driving winding roads across the state providing free legal services to people who have lost coverage or need help filling out pages of forms the state has mailed to them. In between his drives, he fields about a half-dozen phone calls daily from people seeking guidance on their Medicaid applications.
"The notices are so confusing," said Hawkins, who works for Legal Aid of Arkansas. "No two people have had the same experience with losing their coverage. It’s hard to identify what’s really the issue.”
Some people have been mailed pre-populated application forms that include inaccurate income or household information but leave Medicaid enrollees no space to fix the state's errors. Others have received documents that say Medicaid recipients will lose their coverage before they've even had an opportunity to re-apply, Hawkins said. A spokesman for Arkansas' Department of Human Services said the forms instruct enrollees to fill in their information.
Tonya Moore, 49, went for weeks without Medicaid coverage because the state used her 21-year-old daughter's wages, including incomes from two part-time jobs that she no longer worked, to determine she was ineligible for the program. County officials told Moore she had to obtain statements from the businesses — about an hour's drive from Moore's rural home in Highland, Arkansas — to prove her daughter no longer worked there. Moore says she wasn't able to get the documents before being kicked off Medicaid on April 1.
By last week, Moore had run out of blood pressure medication and insulin used to control her diabetes and was staring down a nearly empty box of blood sugar test strips.
“I got a little panicky,” she said at the time. “I don’t know how long it’s going to take to get my insurance.”
Moore was reinstated on Medicaid as of Monday with Legal Aid's help.
The McHenry family also worries the state has mixed up their income while checking their eligibility for Medicaid.
After their son Ryder was diagnosed with cancer in September 2021, Allie McHenry quit her job to take care of him, leaving the family with a single income from Kyle McHenry's job as a heavy diesel mechanic. She signed the family up for Medicaid then but says they were initially denied because the state wrongly counted disability payments for Ryder's cancer as income. She's concerned the state included those payments in its latest assessment but has been unable to get a clear answer, after calling the state three times and being disconnected twice after staying on hold for hours.
“It is always a nightmare trying to call them,” Allie McHenry said of her efforts to reach the state's helpline. “I haven’t had the heart or strength to try and call again."
Notices sent to the McHenrys and reviewed by the AP show they were given less than two weeks' warning that they’d lose coverage at the end of April. The federal government requires states to tell people just 10 days in advance that they’ll be kicked off Medicaid.
The family's experience isn't surprising. Last year, Congress, so worried that some states were ill-equipped to properly handle the number of calls that would flood lines during the Medicaid process, required states to submit data about their call volume, wait times and abandonment rate. The federal Centers for Medicare and Medicaid Services will try to work with states where call wait times are especially high, a spokesperson for the agency said.
Some doctors and their staffs are taking it upon themselves to let patients know about the complicated process they'll have to navigate over the next year.
Most of the little patients pediatrician Lisa Costello sees in Morgantown, West Virginia are covered by Medicaid, and she's made a point to have conversations with parents about how the process will play out. She's also encouraging her colleagues to do the same. West Virginia officials have sent letters to nearly 20,000 people telling them that they'll lose coverage on Monday.
Some people might not realize they no longer have Medicaid until they go to fill a prescription or visit the doctor in the coming weeks, Costello said.
“A lot of it is educating people on, ‘You’re going to get this information; don’t throw it away,’” she said. “How many of us get pieces of mail and toss it in the garbage because we think it’s not important?”
Every weekday, about a dozen staffers at Adelante Healthcare, a small chain of community clinics in Phoenix, call families they believe are at risk of losing Medicaid. Colorful posters on the walls remind families in both English and Spanish to ensure their Medicaid insurance doesn’t lapse.
That's how Alicia Celaya, a 37-year-old waitress in Phoenix, found out that she and her children, ages 4, 10 and 16, will lose coverage later this year.
When she and her husband were laid off from their jobs during the COVID-19 pandemic, they enrolled in Medicaid. Both have returned to working in the restaurant industry, but Celaya and her children remained on Medicaid for the free health care coverage because she's unable to come up with the hundreds of dollars to pay the monthly premiums for her employer-sponsored health insurance.
The clinic is helping her navigate the private health insurance plans available through the Affordable Care Act's marketplace and trying to determine whether her children qualify for the federal Children's Health Insurance Program, known in Arizona as KidsCare. Celaya said she’d never be able to figure out the marketplace, where dozens of plans covering different doctors are offered at varying price points
“I’m no expert on health insurance," she said.
Anita Snow reported from Phoenix. Associated Press correspondents Andrew DeMillo in Little Rock, Arkansas, Anthony Izaguirre in Tallahassee, and Leah Willingham in Morgantown, West Virginia, contributed to this report.
