If you know Medicaid, you know that everything is not fine right now. The unwinding of the pandemic continuous coverage provision continues to have major effects on enrollment, with the net decline in child enrollment now exceeding 4 million. Administrative data from across the country show that 73.2% of people who are losing coverage are being disenrolled for procedural reasons, rather than a determination of ineligibility. New survey reports from national groups and state Medicaid agencies shed further light on the experience of enrollees and the impact unwinding is having on children, families, and people with disabilities.

KFF published a report six months into the unwinding featuring quotes and themes from a focus group of Medicaid enrollees who completed the renewal process during the unwinding period. The participants reported valuing Medicaid coverage due to helping with treatment of chronic conditions, having low out-of-pocket costs, and enabling them to continue working. While some were able to complete renewals online with relative ease, others experienced long processing times, difficulty understanding the language on mailings, and challenges getting through to call centers. Though some individuals interviewed lost coverage because they were no longer eligible, others were not sure why they lost coverage or were procedurally disenrolled and many encountered communication barriers regardless of disenrollment reason.

In December, the Utah Department of Health and Human Services published results of an online survey of 1,000 former Medicaid members. Most respondents rated the renewal process, documentation, and forms to be difficult; however 40% reported being able to have their issue or complaint resolved within the same day when contacting the state. However, the survey contained methodological concerns such as inviting people to participate only by email and failing to provide summary statistics on participant demographics such as age, race, or family size that would help put the findings in context. Additionally, less than half (43%) of respondents completed a Medicaid renewal within the last year. When asked about why individuals or their family members are no longer enrolled in Medicaid, most respondents (63%) said they are no longer enrolled because they think their household income is too high. However, Medicaid income eligibility rules are so complex it is very difficult for a family to accurately assess their eligibility. For example, parent eligibility in the state is limited to those with family incomes below $4,144 per month for a family of three, whereas children are eligible up to $4,247 per month in 2023. In August, CMS learned that state errors in processing eligibility for children versus adults led to significant coverage losses among eligible children.

In addition to surveys conducted by state advocates, a recent survey fielded by the California Department of Health Care Services (DHCS) more directly allows us to understand how unwinding is going from a beneficiary perspective because the sample was fully composed of individuals who have lost coverage during the unwinding period, and specifically being focused on people who were disenrolled for procedural reasons. The survey found that, of those who had been procedurally disenrolled, about one-third (32%) of respondents reported not knowing that they would lose coverage if they did not complete their renewal form. Additionally, nearly four out of ten (39%) respondents reported that they would like to restart Medicaid coverage, but did not know how. Hispanic families also showed higher rates of challenges compared to other households in the state, with 43% interested in restarting their Medicaid coverage, but not knowing how, compared to 32% and 39% for White non-Hispanic Households and All Households on the same metric, respectively.

The Protecting Immigrant Families (PIF) coalition fielded a survey of Spanish-speaking adults which they administered through Facebook Messenger. The survey  received 2,125 responses from across the country. The survey found that only 34% of respondents had heard “a lot” about the Medicaid re-enrollment process and even fewer (6%) had heard that they should be checking their mail for a letter with information about renewal. The PIF survey also found that respondents from Illinois, Texas, and California had the highest awareness about the unwinding, which is concerning given the disparities highlighted in California’s survey. (See this blog for more detail on the PIF survey.)

Findings from these surveys point to the need for increased outreach efforts in states to make individuals and families aware of important program changes. Unfortunately, it may be too late in many states for outreach efforts to have an impact on unwinding outcomes, but increased state-sponsored outreach could help bring back those who remain eligible and have lost coverage in this process.