William Flowers found out he had lost his Medicaid coverage when he went in for a routine doctor’s appointment in June of 2023. This was more than an inconvenience for the thirty-seven-year-old Arkansas resident—it was a life-threatening event. He has suffered from seizures since he was a toddler, and he also has cognitive disabilities, heart and kidney diseases, high blood pressure, high cholesterol, and prediabetes.
William has a part-time job at Pizza Hut, but that doesn’t grant him any benefits. He’s relied on Medicaid, the government health plan for low-income Americans, to ensure he can get his medications and go to the doctor for the last six years. He takes over a dozen drugs to control his conditions; refills of his seizure medication alone would cost him about $150 a pop without Medicaid. After he lost coverage last summer, he was able to get a handful of prescription drugs through a financial assistance program at his local hospital, but he had to stop taking the ones he couldn’t afford, including the medication for his seizures.
William’s sister Kimberly Flowers, forty-five, is his chief advocate. “It’s been really hard,” Kimberly said. “It can be a struggle, especially when you have very little money and you’re trying to decide if you can go to the hospital for a particular visit.” Kimberly has had to become an expert in dealing with the public benefits bureaucracy, which requires an almost superhuman degree of persistence and patience. The Flowers family never received any notice from the state that William had lost his coverage. Kimberly knew her brother was still eligible: he was making the same amount of money he always has, which is below the state’s eligibility threshold.
So she called the Arkansas Department of Human Services for the first of many times on his behalf. She’s had to wait as long as an hour on hold to talk to someone—and that’s when the line doesn’t suddenly go dead and cut her off. Even when connected, Kimberly often spends another half hour on the phone, depending on how helpful the representative is. “You’re being transferred from person to person, but no one has any answers,” she noted. Eventually she was told that her brother made too much money and no longer qualified for the program.
Kimberly was determined to get him back on Medicaid. She contacted the general manager at the Pizza Hut where he works and asked for copies of his pay stubs, then compiled them with the paperwork to file an appeal of his disenrollment. She went to a local print shop to scan the documents so she could email them in. “It can be very time consuming and a bit annoying,” she said. (Bringing the documents in person to a DHS office would be worse, though; it easily takes two hours to get called up to a window to hand them over, and the agency has a track record of losing them.) She was told the agency had thirty days to review the appeal and then someone would get back to her about the outcome. “Their favorite [phrase] is, ‘We’ll get back with you,’ or ‘We’ll have someone contact you,’” Kimberly said. But “they don’t try to follow up on anything, contact you in any way.”
She dutifully waited those thirty days, and when she didn’t get a response, she called yet again. Once she got through, she was told that her brother’s case had been closed just two days after she had been instructed to wait thirty days. The representative told her she didn’t know exactly what had happened, but that she would escalate the case, and someone would give Kimberly a call. “Give us a little time,” she was told.
She gave the agency a month without any contact and then called back. She was informed, once again, that William made too much to qualify and was instructed to send his paperwork in to file another appeal. So again, Kimberly asked his boss to print out pay stubs, filled out the requisite forms, scanned them, and sent them in. Despite the multiple attempts to get his coverage back, William’s case was still closed as of January of this year. The lack of medications caught up with him that month, and he fell sick and was hospitalized.
Slipping through the Safety Net
Stories like this have proliferated across the nation over the past year, as the Covid-19 emergency faded and the U.S. health care system returned to its normal state of inadequacy. Medicaid covers about seventy-five million people whose incomes are below a certain threshold, as well as children, pregnant people, the elderly, and the disabled; funding is split between the federal government and states, and states have a lot of leeway in determining who qualifies and what services they’ll receive. But during the early part of the pandemic, states were barred from kicking anyone off Medicaid. That meant that for a brief period, people didn’t have to go through the hassle of recertifying, or proving they were still eligible, which usually happens on a regular basis. It also meant no unexpected changes in life circumstances or glitches in government systems could suddenly rip someone’s health insurance away.
This was more than an inconvenience—it was a life-threatening event.
This continuous enrollment was one of the reasons that more than twenty-one million people signed up for and stayed on Medicaid and the Children’s Health Insurance Program (CHIP) between the start of the pandemic and the end of 2022. That’s almost as many people as are currently enrolled in Affordable Care Act marketplace plans. For individual beneficiaries, Medicaid enrollment was “just something they didn’t have to worry about anymore,” noted Pamela Herd, a professor of public policy at the University of Michigan who studies administrative burdens. “They just had access.”
That changed in April 2023, when Congress forced states to start verifying eligibility for Medicaid again in what became known as “the unwinding.” At least 24.8 million people had been kicked off by their states as of August 1 this year. For some, that may have been because they were simply no longer eligible, but most people have lost coverage for logistical and paperwork reasons. In nearly 70 percent of disenrollment cases, the explanation has been “procedural reasons,” a catchall for getting lost in the labyrinthine process of staying on the program.
Those who try to get back on can face a long stretch without coverage—two-thirds of renewals in Missouri, for example, were taking more than forty-five days to get processed as of March, as well as around half of those in Alaska, Georgia, Montana, New Mexico, Texas, and Washington, D.C. That doesn’t account for the hours people have spent gathering documentation and sending it in, nor waiting on the phone hoping to talk to someone who can tell them why they lost their Medicaid or how to get it back. This past March, over nine million people called their state help lines to try to get their Medicaid back, and the average wait time in eleven states was well over fifteen minutes, with callers in Missouri waiting nearly an hour (and even those figures may be an undercount). As states slowly deal with the crush of people desperately trying to claw their way back onto the program, people are faced with impossible choices about how to keep themselves healthy without Medicaid.
With such steep losses in health care coverage, the unwinding was a cataclysmic event, but it has technically been completed. Now the country has reverted to the Kafkaesque norm that existed before the pandemic. “There have always been problems. People have always lost coverage during the recertification process,” Herd said. Beneficiaries have to know that they need to recertify every so often, as well as exactly what documents to gather and where and when to send them. But people move, especially those with low incomes who struggle to afford rent, and renewal notices often fail to reach them. Even if they do stay on top of the renewal process, nothing can have changed in their lives that would put them just outside of the eligibility requirements; this is particularly trying for low-income workers whose pay tends to fluctuate thanks to changing schedules and fickle bosses. “At every contact point something can go wrong,” Herd said. Even in ordinary times, according to a study of more than 580,000 Wisconsin residents, one in five people lost their Medicaid coverage when they had to renew it, and typically half of the people who lose it stay uninsured. Between 2000 and 2004, about two million adults were losing Medicaid and staying uninsured every year, even though most were still eligible.
That’s because it can be so hard to get back on once you’ve been kicked off. In early 2019, long before the crush of unwinding paperwork, nearly 13 percent of Medicaid and CHIP applications were processed in forty-five days or more. It costs a state as much as $800, adjusted for inflation based on a 2015 study, each time a beneficiary gets kicked off and eventually reenrolled, as someone on the public payroll has to process their disenrollment and subsequent reenrollment.
All of that is true across states. Some states, however, intentionally weaponize bureaucratic hurdles. “If you’re looking to winnow down your case rolls,” Herd pointed out, “you can use these administrative means to do that.” The Flowers family’s home state of Arkansas, for example, was the first to institute a Medicaid work requirement during the Trump administration, which forced recipients to log the hours they spent working (or performing other qualifying activities) on a glitchy website every month on top of their regular renewals. Over eighteen thousand people lost their coverage before this requirement was halted, even though it had no discernable impact on employment. When the pandemic unwinding came around, the state decided to get it done in six months—half the time allotted by the federal government and the shortest of any state—to reduce “government dependency,” in Governor Sarah Huckabee Sanders’s words. Even without erecting such explicit barriers, states can understaff the departments that process applications and pick up the public’s phone calls, make the applications themselves arcane and arduous, and kick recipients off if they don’t get every part of the process right.
Some states, said Joan Alker, executive director of the Center for Children and Families at Georgetown University, will emerge from the pandemic with better functioning systems because they’ve decided or been forced to fix problems that existed before. “Then you have other states who have really bent over backwards to kick a lot of people off,” she said.
A Kick in the Teeth
All the time Kimberly Flowers was attempting to help her brother, she was dealing with her own Medicaid saga. She has been on the program since she was pregnant with her daughter, who is now twenty-one. Her daughter was born with severe disabilities, one of which requires a tube to run spinal fluid from her head to her stomach and which frequently lands her daughter in the hospital for weeks or months at a time. “I have been taking care of her pretty much her whole life,” Kimberly said. “It made it difficult for me to have a job.” Her eighteen-year-old son also gets CHIP through Medicaid, coverage that will end after he turns nineteen.
This past March, over nine million people called their state help lines to try to get their Medicaid back.
Kimberly is accustomed to regularly recertifying to keep her Medicaid. In March of 2023, just as the unwinding was about to get underway, she started getting calls telling her to renew, so she got her paperwork in early. The calls kept coming, though, so in September she called DHS herself just to make sure everything was fine. The representative assured Kimberly she and her son were set until the following year.
Kimberly has long struggled with dental issues, including frequent infections that have caused the loss of some teeth. When she went to the dentist in October, it was recommended that she have her top teeth removed and that she get fitted for a denture. She would first have the teeth taken out, then have the denture fitted, and then finally take it home, which should have been about a two-month process, finished by the first week of December. Her dentist submitted the plan to Medicaid and got it approved.
In late October, Kimberly had her top teeth pulled, and she was scheduled to have the denture fitted the first week of November. But the Friday before her Monday appointment, she got a call from the dentist’s office saying they were running into a problem with her insurance coverage. She called DHS the same day but couldn’t get through to anyone, so she called back on Monday and was told that, while she still had coverage, it had been changed without her knowledge. After her son turned eighteen in October, she was taken off the plan for parents and caregivers and put on a different Medicaid plan, which doesn’t include any dental coverage. The new plan wouldn’t pay for any of the rest of the procedure. “I got a million phone calls about Medicaid renewals, but no one called me to tell me my Medicaid coverage was changing,” she noted.
Kimberly has been left without top teeth for months, waiting. “It has been horrible,” she said. Her gums immediately became tender and sore. Then the holidays came, and she couldn’t eat the foods she loves. She’s had to skip steaks and pork chops in favor of softer meat like chicken; even fried chicken requires her to peel off the skin and cut it into small pieces. Some of her other health conditions mean that she follows a particular diet, but she’s had to give many of these foods up and risk her health because she can’t chew them. Her blood sugar levels “have definitely gone up” since her teeth were taken out, she said.
It’s sometimes made it difficult to talk too; certain words come out with a slight lisp. Her mouth appears sunken in as if she’s elderly. “It can be really noticeable when you smile or laugh,” she said.
It wasn’t until late June that Kimberly applied for a credit card, got approved, and used it to pay the nearly $1,100 for the denture impressions and fitting out of pocket. “That’s the only way I’m going to be able to get it at this point,” she said. “I’ve called all other resources.” No financial assistance was available. The credit card approval was, for her, a godsend. “I’m just going to have to figure [it] out and try to pay this off,” she said. “But at least I’ll get some teeth.” She had finished getting the impressions done by mid-July and was waiting on the final denture to come through in early August.
Time Theft
Some states are interested in reducing the burden of the low-income people who rely on Medicaid. About a dozen have invested in automatic renewals, using information the state already has to recertify people without them having to take any actions.
Others have gotten permission to keep the pandemic’s experiment with continuous enrollment in place—in other words, doing away with making Medicaid beneficiaries keep filling out paperwork to prove that they deserve health insurance and just letting them stay on. As of January, all states are required to keep children enrolled in Medicaid or CHIP for twelve months, and three keep them on longer. (Florida is currently fighting to get out of this requirement in court.) Massachusetts, New Jersey, and New York have all gone further and received waivers to institute a year of continuous coverage for everyone on Medicaid, while Kansas offers it for parents, and Utah implemented it for homeless people with very low incomes. Oregon goes the furthest: all children are kept on the program without having to complete paperwork until age six; the state also provides continuous coverage for a two-year period for those six and older. “That’s really the gold standard,” Alker said. Even more states could join this group, especially if Congress created an official option for them to offer adults continuous coverage. Continuous enrollment, she said, “is really having a breakthrough because it was clear in the pandemic that it worked and red tape makes people uninsured.”
But in most states, people are now once again forced to spend precious time completing paperwork to maintain their health coverage, and then countless hours more if something goes wrong and they need to get it back. Time is “the one thing in our lives that’s truly limited,” Herd noted. The psychological toll of going without a basic human need like medical care, meanwhile, is far more acute than simply waiting to get a driver’s license renewed or a library card approved. Continuous enrollment “removed these extraordinary stressors from people’s lives,” Herd said. The United States is the only developed country without universal health care. “This is just one of the natural consequences of that,” Herd noted. What the Flowers family has been through, and what millions of other Americans experience when they abruptly lose Medicaid coverage, “is a purely American phenomenon.”
Kimberly took advantage of William being in the hospital in January to try to get his Medicaid back. She asked the hospital social work team to look into his case. One of them was able to go into the Medicaid system and see that no one had taken any actions on it for the entire month that he had been repeatedly denied—his appeal had been sitting untouched. She was advised to apply anew, not continue to appeal the decision as she had been, so she once again gathered all the necessary documents.
“It was amazing, when I reapplied and sent in the same information, then they accepted him,” she said. His coverage was reinstated in April. The problem, she finally found out, was that the state had verified her brother’s income in a rare month when he was paid three times instead of two due to the calendar, and then had averaged those three payments out over the year to say his income was over the threshold.
Although his coverage has been restored, William isn’t back to normal. After going for so many months without taking the drugs he was prescribed, his blood pressure has “been kind of out of control,” Kimberly said. When he went to the doctor this June, his blood pressure was at “stroke level,” she said, so he was put on yet another medication to try to bring it down. A few weeks later, his doctors increased the dosage on that medication and another he had already been taking, still trying to get it down. “They’re afraid if they can’t get that under control that’s going to start really messing with his other functions,” she said. William’s high blood pressure sometimes leaves him fatigued and with a headache; in mid-July, he had to take some days off of work because of the symptoms. The damage to his kidneys, meanwhile, can’t be reversed. He just has to try and maintain their current function and “hope that it doesn’t get any worse,” she said.
Kimberly isn’t done fighting for him. Although she was finally able to get his Medicaid restored, she’s adamant that the state owes them for the money they spent out of pocket when he was hospitalized. The state, however, has already told her to give up. She got a call from someone she’s dubbed the “cleanup lady” who questioned all of the paperwork she had sent in for the appeals, such as saying the pay stubs were from too far in the past. “Anything to make up where they’re not at fault, it’s your fault,” Kimberly said. “She was like, ‘You can try to appeal it if you want, but I’m just letting you know it’s probably not going to go through.’” When she called on July 16, she was told someone would look into her request to be reimbursed and call her back. No one had called by August 1. “Just playing the waiting game,” she said.
Sometimes she thinks the state is making it deliberately hard so she and others will “just quit or leave it alone,” she said. Kimberly isn’t the type to back down when wronged, though. “I’m going to do it anyway,” she said.