A first-of-its-kind survey of people who lost Medicaid coverage last year found just over half made no effort to renew their coverage — in many cases because they were unable to navigate paperwork requirements.

The survey sheds light on why millions of beneficiaries nationwide were dropped from the federal-state health insurance program for “procedural reasons.” KFF Health News obtained the survey, which Utah’s Medicaid program paid more than $20,000 to conduct, through a public records request.

Like many states, Utah terminated Medicaid coverage for a large share of enrollees whose eligibility was reevaluated in 2023, following a three-year pause during the coronavirus pandemic. And, as in most states, an overwhelming number of those disenrollments were executed for procedural reasons such as missing paperwork, rather than determinations that people were no longer eligible for coverage.

Nationally, more than 13.3 million people were cut from Medicaid in 2023, according to KFF, and procedural issues were cited in just over 70% of cases. In Utah, such issues accounted for 94% of disenrollments — the second-highest rate among states.

It’s been unclear what led to those procedural terminations in Utah and other states. But the Utah survey of more than 1,000 disenrolled Medicaid beneficiaries, conducted in October, found that 57% of people who left the program in 2023 never tried to renew their coverage.

“It is frustrating to see that 57% of respondents did not attempt to renew and that over 50% of those former members reported paperwork or other challenges as the reason they did not attempt to renew coverage,” said Matt Slonaker, executive director of the Utah Health Policy Project, an advocacy group.

Many of them found insurance elsewhere — 39% through an employer and 15% through the Affordable Care Act marketplaces, according to the survey.

But 30% became uninsured, and many people reported obstacles in reapplying for Medicaid, which covers people with low incomes and disabilities.

Nineteen percent said they never received renewal documents from the Utah Medicaid enrollment agency, the Department of Workforce Services. Fourteen percent said they didn’t get around to the paperwork, 13% said it was too difficult, and 7% said they didn’t have the necessary documents to prove their eligibility.

The online survey, which had a margin of error of plus or minus 3%, found that many disenrolled people had trouble getting questions answered by the state Medicaid agency. While 39% of those polled said they were able to resolve their issue the same day or the next day, 12% waited more than two weeks, and 21% said they were still waiting for their question, complaint, or problem to be resolved.

About half of those disenrolled described the renewal process as difficult. Just a quarter found it to be easy.

“Too many people, overrepresented by children, will be newly uninsured as a result of the unwinding, and much needs to be done to develop and execute ‘chase’ strategies to find and assist these people with getting covered,” Slonaker said.

Jennifer Strohecker, Utah’s Medicaid director, said the state is using feedback from the survey to improve its consumer engagement. It’s renewing more beneficiaries using databases to verify their income and residency, she said, and is assisting with enrollment at laundromats and Department of Motor Vehicles offices.

The state’s strong economy and low unemployment rate may help explain the high percentage of people terminated from Medicaid, she said. And about 35% who were disenrolled are returning to the program, said Kevin Burt, a deputy director of the Utah Department of Workforce Services.

But health experts worry that any disruption of insurance coverage can leave people vulnerable to losing access to care or responsible for large medical bills.

In August 2023, the Centers for Medicare & Medicaid Services sent letters to states expressing concern over high procedural disenrollment rates. CMS said the procedural disenrollment rate was too high in more than half of states and urged them to reduce it.

The Biden administration has expressed alarm in particular about losses of coverage among children, who accounted for about 46% of enrollment in Medicaid and the related Children’s Health Insurance Program in August, according to KFF. Almost 90 million people were enrolled in the two programs that month — up about 20 million from before the covid-19 pandemic.

Medicaid beneficiaries typically must have their eligibility reviewed every year to renew their coverage. But in March 2020, after the pandemic hit, the federal government froze eligibility checks as part of the public health emergency. That prevented people from losing coverage.

Since last spring, when Congress ended the emergency, states began to once again review beneficiaries’ eligibility — and terminated coverage for millions. This “unwinding” is scheduled to continue through May, though some states have already completed their process.

Utah has dropped roughly 150,000 of about 500,000 Medicaid beneficiaries since April.

Utah officials confirmed this week that the state’s Medicaid unwinding is under audit by the Department of Health and Human Services’ Office of Inspector General, which can levy fines and other penalties on states that it finds broke the law.

Strohecker said she believes Utah is one of a handful of states facing such an examination. The state is also facing an audit by the HHS Office of Civil Rights, possibly due to the high proportion of Black, Hispanic, and Pacific Islander beneficiaries who lost coverage. That agency is also able to issue fines.

Lindsey Browning, a policy analyst for the National Association of Medicaid Directors, said she is aware of about a dozen states facing these audits, which she said are routine when there are big changes in Medicaid policy.

Both HHS agencies refused to confirm or comment on the audits.

UnidosUS, the nation’s largest Hispanic civil rights and advocacy group, has called on states to more aggressively protect eligible people from losing Medicaid coverage.

“People of all races and ethnicities are losing their health care, but Latinos and members of other historically marginalized communities are suffering disproportionate harm, as are children,” said Stan Dorn, health policy director of UnidosUS.

Stephanie Burdick, a Medicaid enrollee and consumer advocate on Utah’s Medicaid advisory board, said the survey points to serious shortcomings in the state’s unwinding.

“It’s a huge communication failure,” she said when asked why more than half of those dropped made no effort to renew their coverage. Many Medicaid enrollees, she said, didn’t know they had to reapply.

“A lot of people thought it was like the federal stimulus checks and was just a one-time benefit,” she said.

Utah fully expanded Medicaid in 2020 under the Affordable Care Act, raising eligibility to cover more working people with low incomes. As a result, tens of thousands of people who enrolled during the pandemic had never been through the process of renewing their coverage.

The Utah survey found that former Medicaid recipients rated the state’s program as 7 on a scale of 1 to 10. And nearly 80% said they would reenroll in the program if they could.

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