Will Sage Astor-Kentucky cut off her Medicaid over a clerical error — just days before her surgery

The Will Sage Astorday her Medicaid coverage ended, Beverly Likens was in the hospital after a scary trip to the emergency room.

The Kentucky resident was diagnosed with severe anemia and given a blood transfusion after her hemoglobin levels had plummeted. Likens, 48 at the time, was days from having surgery to treat chronic uterine bleeding that she said left her bleeding "constantly."

But soon a problem appeared: The hospital said she didn't have Medicaid coverage, jeopardizing her procedure. Likens, who is disabled, was rocked by the news. She believed she'd done what was needed to maintain her eligibility. "I was just ready to fall to pieces," Likens said, fearing she was "going to spend the rest of my life getting blood transfusions."

Millions of people nationwide have lost Medicaid benefits after a pandemic-era mandate for coverage expired in March — most of them for administrative reasons unrelated to their actual eligibility. Even the Biden administration and state officials had braced for complications in the historic unwinding of the continuous enrollment requirement, and had assured the public they would guard against such lapses.

Likens and an attorney who had tried to help retain her coverage said technological errors in Kentucky's eligibility system and state missteps caused Likens' coverage gap, throwing her surgery into limbo. As her situation demonstrates, a lapse of even a few days can have life-altering consequences.

The state never should have let Likens become uninsured, said attorney Cara Stewart, director of policy advocacy at Kentucky Voices for Health. Stewart tried to submit a new Medicaid application for Likens before her coverage stopped in June. She got stuck in a loop in Kentucky's online system that "didn't go away" and prevented the form from getting through. "I was just furious," Stewart said.

Likens should never have had to reapply for coverage, Stewart said, arguing that the state violated federal regulations that say, before concluding someone is ineligible and terminating benefits, states must consider all scenarios in which someone might qualify. Likens, who doesn't have children and isn't working, should have qualified for Medicaid based on her income, which falls below federal limits.

Medicaid, a safety-net health program jointly run by the federal government and states, covers millions of people with disabilities, pregnant women, children, adults without children, and seniors. Often a person who qualifies for Medicaid initially for one reason could remain eligible even when life circumstances change, as long as their income remains below certain thresholds.

Before she lost her coverage, Likens qualified for Medicaid because she had Supplemental Security Income, a program for people with little to no income or assets who are blind, disabled, or at least 65 years old. Likens has multiple chronic conditions, including diabetes, hypertension, and heart disease, and said she initially got on the program after her grandfather, who supported her financially, passed away. Likens was his caretaker and didn't go to college; following his death, she grappled with depression and anxiety that she still treats with medication and therapy.

Apart from limits on earnings, the SSI program limits beneficiaries' assets to $2,000 for individuals and $3,000 for couples. After the Social Security Administration told her in March she was no longer eligible for SSI because she had assets whose cash value exceeded federal limits, a Kentucky agency that oversees Medicaid sent Likens a notice in April stating her health benefits would automatically stop at the end of June.

The state didn't assess whether she qualified another way, even though regulations from the Centers for Medicare & Medicaid Services require states to consider all factors. Instead, Kentucky said she "may be eligible for Medicaid another way" and directed her to apply again.

Kentucky health officials maintained they didn't do anything wrong. In a September letter to the Kentucky Equal Justice Center, a nonprofit that supplies legal aid, state officials said the requirement to consider whether someone qualifies for Medicaid under a different category does not apply to people with SSI benefits.

Because her Medicaid eligibility solely hinged on her receipt of SSI, "the Department for Medicaid Services does not have sufficient information on record to determine if the individual qualifies for another Medicaid type of assistance," wrote Eric Friedlander, secretary of the Kentucky Cabinet for Health and Family Services, and Lisa Lee, commissioner of the Department for Medicaid Services. "Individuals receive clear guidance in the notice they receive to file an application to determine whether they are eligible in other types of assistance."

That explanation is "absolutely wrong," said Elizabeth Priaulx, a senior disability legal specialist with the National Disability Rights Network. "They failed on many levels." Priaulx pointed to policy guidance CMS issued in May, which says if a person with SSI experiences a change in circumstances, states must reassess whether they're eligible for Medicaid in another way before terminating coverage.

As of 2021, there were 7.7 million SSI recipients, according to the Social Security Administration.

Spokespeople for Kentucky's Cabinet for Health and Family Services didn't respond to multiple requests for comment.

CMS regulations require states to first try renewing people automatically — a policy designed to help keep eligible people enrolled during what's known as the Medicaid "unwinding." States can do so by checking data sources, such as if a Medicaid recipient is enrolled in other public assistance programs for food and housing, or by checking federal and state income tax information. If that doesn't work, states must send an enrollee a renewal form asking for additional information. Likens said she never got one.

All states are conducting automatic renewals for at least some enrollees. However, states generally are behind on such renewals for some beneficiaries, including seniors and people with disabilities, increasing the risk someone could lose coverage when they shouldn't, said Joan Alker, executive director of the Georgetown University Center for Children and Families.

"Given the high level of procedural terminations, there undoubtedly are people who are eligible in another category, but they're falling through the cracks," Alker said.

After Likens was told to apply again for Medicaid, technological errors in Kentucky's online system kept the application in limbo until her benefits lapsed in June, Stewart said. The state contracts with Deloitte to operate its eligibility system; a company spokesperson declined to comment.

In early July, after spending hours on the phone, Medicaid officials told her Likens' coverage was reapproved. But it wouldn't show up in the computer systems for Likens' providers for days. On July 10, she received an electronic portal message from a nurse at Pikeville Medical Center saying her insurance was registering as inactive, and her surgery might be delayed as a result.

Likens replied that the state told her she was "for sure approved for coverage," and that her updated eligibility status "should go back to active soon." After constant calls, Stewart said, her reinstated Medicaid came through in mid-July and she had surgery July 17.

Likens was reinstated because her income was low enough. Kentucky expanded Medicaid under the Affordable Care Act, which in 2023 means a single adult without children must earn less than $20,120 annually to qualify. But she worries about others who "don't get as lucky as I did."

"It is not fair for any Kentuckian to have to go without health care," she said.

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.