Last September, a few months after she was diagnosed with multiple sclerosis, Kyla Brakebill's insurance coverage was canceled by the Arkansas Department of Human Services. Almost a year later, she remains uninsured.
Brakebill, 43, first began having headaches and dizzy spells in November 2016. After an especially intense episode, she was taken to the emergency room at Baptist Health Medical Center in North Little Rock, where a doctor ordered a series of tests. "She thought at first I might have had a stroke, because she tested that," Brakebill said in an interview. "They were going to see about an aneurysm, but that came back negative. ... After my MRI, she came in and said, 'I can tell you don't have this, this or that, but I'm worried.' " The doctor told Brakebill the scan showed "that my brain was like the brain of a 64-year-old woman."
Frightening as the news was, Brakebill thought she at least wouldn't have to worry about paying for medical care: She was on Arkansas Works, the state's Medicaid-funded insurance program for low-income adults established under the Affordable Care Act, or Obamacare. (Arkansas Works is also sometimes called "Medicaid expansion" or "the private option.") Like most on the program, her policy was provided through a private carrier, Arkansas Blue Cross and Blue Shield. "It covered everything, and that was great," Brakebill said. The hospital helped her find a primary care doctor, who gave her a probable MS diagnosis and sent her to a neurologist, who in turn scheduled Brakebill for another round of brain scans.
Brakebill never had the scans performed. Late last summer, while taking out the trash at her house, she lost her balance on a rough patch of earth at the edge of the carport. "All of my weight went on my right big toe, and I broke my toe," she recalled. "And when that happened, my body swung around and my mouth hit the post that holds the carport up and knocked one of my front teeth out. It was horrible." A dentist prescribed antibiotics to stave off an infection, and shortly thereafter, Brakebill attempted to fill it.
"I was in Memphis for work and my mouth was hurt really bad," she said. "I get to Walgreens and I find out they won't fill my prescription because my insurance had ended." Baffled, she called Blue Cross and DHS as soon as she returned home. "After a million phone calls and finally getting to talk to someone, they said it was because I didn't send a change of address."
Brakebill had recently lost her home to a foreclosure and had moved several times. However, she had filled out a change of address form at the post office and had her mail forwarded to a P.O. box. She had no idea, she said, that DHS required beneficiaries to directly notify the agency of any physical address change. And because her insurance was provided through Blue Cross rather than directly through the state — a feature born of Arkansas's unusual privatized approach to Medicaid expansion — she wasn't used to communicating with DHS about her coverage. "I never had another conversation with DHS about insurance after that initial application," she said.
DHS requires beneficiaries to notify it of any address change within 10 days of a move, agency spokeswoman Amy Webb said. If mail sent to a beneficiary is returned to DHS and the agency hasn't received notification of an address change, it will close that person's case.
Over the past 18 months, Arkansas Works enrollment decreased by almost 60,000 people, DHS numbers show. Enrollment peaked near 330,000 sometime in January 2017. By July 1 of this year, it had fallen to 271,000 — a 15 percent drop.
The state is shedding beneficiaries at a faster rate than any other state that chose to expand Medicaid, according to data from the federal Centers for Medicare and Medicaid Services. Arkansas saw a 6 percent decline in its overall Medicaid enrollment between January 2017 and May 2018. The shrinking Arkansas Works program evidently accounted for most of the drop. (The CMS data combines the expansion population and the larger, more expensive "traditional" Medicaid population, which includes children on ARKids, elderly people, disabled people and other groups.) Only three non-expansion states — Texas, Idaho and Tennessee — saw a larger percentage decrease in Medicaid overall.
Arkansas has lately come under national scrutiny for its new work requirement for some Arkansas Works enrollees, with many health researchers and advocates warning the policy could lead to thousands losing coverage. Yet little attention has been paid to the steady monthly reduction in Medicaid enrollment figures predating the work requirement, which began in June. The work rule won't trigger terminations of coverage until September at the earliest. That means the almost 60,000 people pared from Arkansas Works over the last year and a half dropped away for other reasons.
Governor Hutchinson has given two explanations. The first is a strong economy. Because Medicaid expansion is open only to those whose incomes fall below 138 percent of the federal poverty line (in 2018, that's $16,753 for an individual or $34,638 for a family of four), getting a better job often makes a beneficiary ineligible for Arkansas Works. He or she might then gain insurance through an employer — or, if that's not an option, purchase a plan on the individual marketplace with the help of a federal subsidy.
Though such coverage would likely cost more than Arkansas Works (which costs little to nothing for beneficiaries), more people moving up the income ladder would be clearly positive news.
"I would emphasize that this is not a change in services," Hutchinson said at a recent session with the press at which he touted savings in the Medicaid budget. "This is simply the result of people that are working. ... If they got a better job and they just don't bother telling us about it, and they no longer qualify, that's a good thing, because nobody's losing services. It's just that they no longer qualify and we're not wasting our taxpayers' money. If it's because their spouse got insurance and they no longer need Arkansas Works, then that's a good thing as well."
Jennifer Wagner, a senior policy analyst at the Center for Budget and Policy Priorities, a liberal-leaning think tank in Washington, D.C., said the picture was more complicated.
"I'm sure some portion is attributable to the improving economy," Wagner said. "The thing that we tend to see, though, is that even when people are able to find employment, often their income does not go up high enough to make them no longer eligible. And often the low-wage work they get does not include health insurance. As we know, a lot of people on Medicaid are working families — they're just not making enough [money] and they're not getting employer-sponsored insurance. So, I wouldn't assume that all drop-off is because of that."
The fact that Arkansas's 18-month decline in Medicaid enrollment outpaced most other states also suggests there's more at play than economic factors. Arkansas's unemployment rate is low, but so are those of other states that haven't seen a similarly steep dip in Medicaid rolls. And while Medicaid enrollment has fallen fairly steadily from January 2017 to June 2018, the unemployment rate over that period ticked slightly upward, from 3.7 percent to 3.8 percent. The Arkansas jobless rate in June ranked 21st in the nation, according to the federal Bureau of Labor Statistics.
In July, DHS released a graph breaking down the reasons behind the approximately 14,000 Arkansas Works case closures the previous month. Only 11 percent of the cases closed in June were attributed to an increase in household income. However, Wagner said that figure likely understates the percentage of people who left the program because of rising wages. Many beneficiaries who no longer need Arkansas Works may simply stop corresponding with DHS, rather than contacting the agency to explicitly request closure.
The governor's second explanation for the reduced enrollment is an improved effort at DHS to "scrub" the Medicaid rolls by removing people who are no longer eligible. That includes many situations: individuals who are making too much money, who have moved out of state, who are incarcerated, who have turned 65 (and are therefore receiving Medicare) or who are dead. But it also includes many people such as Kyla Brakebill, who lost coverage because of a problem communicating with DHS.
DHS figures suggest that changes of address and communications issues are a major reason for coverage losses. Sixty percent of cases closed in June were terminated for one of two reasons: "failed to return requested information" or "unable to locate client or moved out-of-state."
The latter category includes cases in which DHS receives any piece of returned mail, agency spokeswoman Webb said in an email. Webb said the agency couldn't distinguish between clients who moved out of state and those who moved within the state.
Wagner, who studies Medicaid policy across the country, said the DHS approach to returned mail was "a very aggressive stance for the state to take."
It's not uncommon, she said, for Medicaid recipients in all states to lose coverage at "recertification," the annual update of personal information mandated for every beneficiary. "People are often sent a letter and are required to send that back. They may also be required to send additional verification, like pay stubs," Wagner said. "No matter what, there's going to be some degree of fall-off at recertification."
In Arkansas, though, any returned mail — not just at recertification — automatically triggers a closure. That creates more opportunities for a beneficiary to lose coverage. Mary Franklin, director of DHS' Division of County Operations, wrote in an email that "if the information is not returned by the deadline, the case is closed. Many of these closures are automated, and there is an extra 5 days built in to our automated process to make sure that any information that is received has been logged into the system."
Wagner said, "I don't know that other states would necessarily take action to close a case just because of returned mail.That's concerning, especially because this population often moves a lot ... staying with friends or family or things like that. So that's kind of a lot to expect — for it to be constantly updated." The state could take more proactive steps to find a beneficiary, Wagner added, such as cross-checking with the postal service's National Change of Address system. Franklin said DHS does not check that database before closing a case.
"Federal regulations do require Medicaid recipients to report changes that affect eligibility," Wagner acknowledged, "and I'm sure Arkansas could make an argument that they don't know if someone has moved out of state if they didn't report an address change. But that is an aggressive stance, and I wonder how frequently mailings are going out over the year."
In fact, DHS has been sending out frequent mailings to many Arkansas Works recipients to inform them of the new work requirement. Webb said DHS didn't have information on how many Arkansas Works closures occurred at annual recertification and could not provide a breakdown of the reasons for closures during previous months.
Many Arkansas Works beneficiaries who lose coverage quickly regain it. Brakebill did not, seemingly due to a combination of bad timing and bad information.
She said she thought she had to wait until November to reapply for coverage. That's likely because of widespread public confusion about the difference between Arkansas Works (which can be applied for at any point during the year) and the individual insurance marketplace (which can typically only be accessed during a brief open enrollment period at the end of the year). People whose income is above 138 percent of poverty can get coverage on the marketplace subsidized by the federal government.
It's not clear which group Brakebill should have been in at that point in time because her income fluctuated significantly from month to month. (In January 2017, she started working as a marketing manager for a home improvement company that sets up booths at public events. She earns a few hundred dollars each week in base pay and — depending on the season — an additional amount in commissions.) It may be that Brakebill could have simply re-enrolled in Arkansas Works last fall. It's also possible her annual income had exceeded the threshold for a single-person household, in which case she should have transitioned onto the marketplace. Assuming this was so, however, she shouldn't have had to wait for open enrollment: The individual marketplace allows for a 60-day "special enrollment" period after a person loses coverage from a different source.
When Brakebill finally went online to buy insurance at the end of the year, she said, she hit another snag: The marketplace website asked her for employer information she didn't have. That was right before open enrollment ended on Dec. 15. In 2018, based on the income information she provided a reporter, it appears Brakebill makes slightly too much to qualify for Arkansas Works — but she can't sign up for insurance on the marketplace until 2018 open enrollment begins again this November.
In the meantime, she's in limbo. "Just to know that I can't go in and see a doctor — it worries me," Brakebill said. Her multiple sclerosis symptoms come and go, but on bad days she finds it hard to function. "Like this week, my MS is pretty bad. Yesterday, I did everything backwards. Like my job, everything. ... So if I'm talking in circles, that's what's wrong with me. Sometimes I have a really great conversation, and sometimes I can't even speak."
In addition to MS, she suffers from high blood pressure and polycystic ovary syndrome, a hormonal disorder that causes weight gain and facial hair growth and has been linked to diabetes. Both conditions are controllable with drugs, but she does not have prescriptions for either. She'd like to find a better job, she said, but she feels constrained by her medical problems.
"I'm in my 40s, but I can't have a breast exam or a colonoscopy or anything like that. I can't go for my yearly pap smear," she said. "Until I get the insurance to do all that again, I guess I'll just try to live until I don't live anymore."
The governor has praised DHS for taking steps to scrub the Medicaid rolls more aggressively and pushed back against the idea that the agency's rules may be stricter than necessary.
"That's called responsible management," he said at the recent press conference. "I don't think very many in Arkansas would want our taxpayer dollars paying for insurance for those that may be living out of state, may have moved, may have income that exceeds the limits. And if they are not giving us the information to verify that, then that's the responsible thing to do for the taxpayers."
Hutchinson suggested Arkansas Works enrollment in January 2017 was inflated with many thousands of people who weren't actually eligible. He pointed out the Medicaid expansion was originally predicted to serve about 250,000 people when Arkansas policymakers first considered implementing the program in 2013.
"I think you're seeing numbers now that are where they should be, based on the economy that we have and based on the management we have," he said.
The governor prefers to emphasize a different figure: the zero percent growth rate in Medicaid expenditures in the fiscal year that ended in June. Combined state and federal spending on Arkansas Medicaid (both Arkansas Works and traditional) was $7.105 billion in FY 2018, or $22 million less than the previous year. Because health care costs typically grow year over year, however, flat growth is effectively a reduction when compared to projected expenses.
Some of the savings resulted from "transformation" efforts by DHS to impose discipline on especially high-cost Medicaid program areas. But the majority of the savings (around 55 percent) was attributable to the decline in enrollment. In any case, holding Medicaid costs flat is a major achievement for a conservative governor, and the reduced costs will help pay for tax cuts on high-income earners that Hutchinson and Republican legislators intend to pass in 2019. It also helps the governor defend his decision to continue the Arkansas Works program, which some hardline conservatives want to see defunded entirely.
The question is whether Brakebill is an outlier or part of a trend. Is Arkansas Works enrollment shrinking mostly because people have moved up the income ladder and found coverage elsewhere? Or has DHS' zealous approach to rules enforcement resulted in a growing number of low-income Arkansans going without insurance or experiencing periodic lapses in coverage?
Arkansas cut its uninsured rate in half in the three years after it first expanded Medicaid in 2013 — one of the largest percentage reductions in the country. If many of the 60,000 people scrubbed from the Arkansas Works rolls since last January are now uninsured, that metric may rebound. But the U.S. Census Bureau has yet to publish information on state-level uninsured rates in 2017.
Anecdotally, many Arkansas health care advocates say the address change issue hasn't been on their radar. Kevin De Liban, a lawyer for Legal Aid of Arkansas, is familiar with fighting DHS over Medicaid. (He represents a group of disabled beneficiaries engaged in a long-running lawsuit against the agency.) De Liban said Legal Aid has fielded calls from a handful of Arkansas Works beneficiaries who complained of losing coverage due to returned mail or an alleged failure to send in information, but the group hasn't heard back from those individuals.
Still, he was critical of the agency's strict rules for correspondence. "DHS sends them a letter and gives them 10 days to respond," he said. "It gets to them Day 8 ... and many times the client provides it timely, or close to timely, and DHS does not process it quickly enough."
Lainey Morrow is a grassroots advocate who founded a popular Facebook group, "Medicaid Saves Lives," to help beneficiaries and their families navigate the system. (It had over 3,600 members as of Aug. 6.) Morrow said she hadn't heard many complaints of lost coverage explicitly due to an address change. But, she pointed out that people who are terminated for such a reason would never receive a letter explaining why they were cut off.
"I don't think people know why, if that is why," Morrow said, "They may in some roundabout manner find out: They go to a provider, and the provider says their Medicaid number is inactive, and then they start trying to track it down." She's also heard of many people who lost coverage but were unsure of the reason why because they didn't understand the letter they received from DHS.
Many who unexpectedly lose their insurance simply begin the process of re-enrollment. But even when a beneficiary regains her insurance, temporary coverage gaps can cause hardships: prescriptions unfilled, bills left unpaid, appointments missed and hours spent on the phone.
Brittany Keeland, 22, is a single mother of two and the legal guardian of her 16-year-old sister. Her four-person household contains three different categories of Medicaid: Keeland is on Arkansas Works; her children, ages 1 and 2, are on ARKids; and Keeland's sister has disability Medicaid for a severe, exceedingly rare genetically based skin condition called lamellar ichthyosis.
In late July, Keeland received a notice from DHS that said her insurance, and her children's, would soon be terminated due to a failure to report additional income. In a recent interview, Keeland said DHS was mistaken. She didn't have any new income. She was continuing to work as a home health aide at the same company where she'd worked for the past three years. The misunderstanding arose because Keeland's pay stubs contained a different corporate name than the one she listed as her employer. (The company that directly employs her, she explained, is owned by a parent company that cuts her checks.) Someone at DHS saw the difference in names and assumed Keeland was missing information.
Ironically, the mistake occurred only after Keeland notified the agency of an address change. In March, Keeland moved her family from Crawford County to an apartment in Fort Smith. She updated her address and other personal information with DHS, enclosing her recent pay stubs with the mailing. All was well for several months, but then, in July, she received a notice that she needed to get a letter from her employer and that it had to be turned in by July 27 to maintain coverage for her family.
Keeland gritted her teeth, gathered the paperwork and submitted it to DHS on July 26. She called on Monday, July 30, to make sure everything had been processed.
"I asked if my stuff was going to be shut off, and they're like, 'Yeah, because you didn't turn in all your paperwork,' " she said. "I told them that I turned everything in ... so y'all did something with it, and we kind of got in an argument."
"Well, Tuesday or so, I got a letter in the mail saying all of our stuff was canceleddue to lack of turning information in. And then Wednesday they called me and said they'd found my paperwork, that it was put in a different program and they're sorry they lost it and everything, and I asked them about my benefits being shut off." Keeland said she was told she'd have to wait on an action from her caseworker to resolve the issue.
"I still don't know if it's going to be on or not," Keeland said when she spoke to a reporter on Saturday. "I got a letter in the mail saying it was pending, so I don't know." As of this week, she was still unsure. In a text message Monday, she wrote, "I tried calling today sat on hold forever so I just hung up." She's also concerned her food stamps will be cut off.
Last fall, Keeland said, she temporarily lost insurance coverage due to another DHS paperwork issue. Though her insurance was reinstated, doctors' bills piled up in the interim. If her Medicaid is shut off again, she worries she'll accumulate more debt. "That's mainly what's on my credit, is medical bills I don't have money to pay ... and they get turned over to collection agencies," she said.
Keeland's family needs insurance. Her sister has appointments at Arkansas Children's Hospital twice a month for her skin condition. Her daughter, who is developmentally delayed and has multiple food allergies, also regularly visits Children's, she said. Her son has hearing problems, and both children see therapists. Keeland herself has prescriptions, too. "And then, regular doctors appointments and stuff. We use it almost every other day, it seems like, for at least one of us," she said.
Wagner, the policy analyst, said states can take steps to minimize disruptions in Medicaid coverage. "How many documents the client is required to send in can make a difference. If the state is using their data sources well, they shouldn't have to ask for a lot of pay stubs and other things," she said.
"There's a lot that the state can do at the recertification point to make it go better," she continued. For example, rather than putting the burden on beneficiaries, the state can use its own data sources to determine if a person appears to continue to be eligible. "They just send them a notice saying, 'We're going to renew you based on this information. If any of it's incorrect, contact us.' "
Instead, most of Arkansas's efforts seem to run in the opposite direction. While DHS doesn't check the National Change of Address database, it does check state wage data to look for unreported income and scans for the receipt of public benefits in other states. Also, a subset of Arkansas Works beneficiaries are now subject to the new work requirement, which adds another layer of bureaucracy to an already complex set of requirements. Unlike with many of the aforementioned situations, not complying with the work rule may eventually result in a beneficiary actually being locked out of coverage for a period of time. In June, about 10,000 people were required to submit additional information to DHS proving they were working or qualified for an exemption. Of those, about 7,000 did not.
Many of those who lost Arkansas Works coverage in the past year and a half surely did so because they failed to follow one rule or another. But some human error is a part of any program. One point of frustrations for beneficiaries is that while DHS seems to give so little leeway to their oversights and mistakes, the state's own oversights and mistakes must be accepted as a part of life.
Like many on Arkansas Works, Keeland is fed up with jumping through hoops. "I don't know what's going on up there and half the time they don't either," she said. "Whenever you ask to talk to your caseworker, they give you a voicemail and then they never call you back. Or you say, 'Hey, I'm working [but] I'm free at this time.' And then they call you while you're at work and then you miss it and it's your fault."
"They act as if we have no life outside their office," she said.
This reporting is made possible in part by a yearlong fellowship sponsored by the Association of Health Care Journalists and supported by The Commonwealth Fund. It is published here courtesy of the Arkansas Nonprofit News Network, an independent, nonpartisan project dedicated to producing journalism that matters to Arkansans. Find out more at arknews.org.