Medicaid At 57: Still Essential And Needs Improvements As COVID-19 Emergency Unwinding Looms


Enrollment in Medicaid, which just celebrated its 57th birthday, is at an all-time high. Almost 82 million people have Medicaid health coverage, which is approximately one in four Americans (24.6 percent). In focus groups we conducted in June 2022 with Medicaid recipients and people who work directly with Medicaid recipients (Note 1), we heard Medicaid described as a “blessing” and a “life changing program” that allowed participants and their children to get essential heath care they otherwise could not possibly afford. A woman from Florida credited Medicaid with enabling her to remain in her home now that she needs to use a wheelchair for mobility, and a woman from Arkansas said, “If my son didn’t have Medicaid, he would have died from diabetes.”

The COVID-19 pandemic has been responsible for a recent surge in Medicaid enrollment. This is largely due to the continuous coverage provision in the Families First Coronavirus Response Act, which gave states higher federal Medicaid payments if they agreed not to disenroll recipients during the COVID-19 public health emergency (PHE). Between January 2020 and May 2022, enrollment in Medicaid increased by 28 percent.

The PHE was most recently extended for 90 days on July 15th, and given the continuing waves of COVID-19, it is unclear when it will end. When it does, however, states will face a monumental task of reviewing the eligibility of every person enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) within 14 months. The Centers for Medicare and Medicaid Services (CMS) describes the continuous enrollment unwinding as the “single largest health coverage transition event” since the Affordable Care Act’s initial open enrollment and has expressed concern that there is “an acute risk that eligible beneficiaries will lose coverage when states begin to process renewals and other eligibility and enrollment actions.”

The Assistant Secretary for Planning and Evaluation (ASPE) and the Urban Institute have each estimated that 15 million people or more will lose Medicaid during the unwinding from the PHE. While increases in income are expected to be the primary reason for disenrollment, the ASPE estimates that 45 percent of those who will lose Medicaid will still be eligible for coverage. This is consistent with a Henry J. Kaiser Family Foundation survey that found several states expected missing or incomplete documentation to be a major reason people will lose Medicaid coverage.

Many people who will no longer be eligible for Medicaid will be eligible for federal Marketplace subsidies or CHIP. However, the administrative processes for transitioning these people to new coverage, as well as costs for the new plans, will determine how many people maintain insurance coverage. There is substantial reason for concern, as a recent analysis found that a large percentage of adults and children experienced a gap in health coverage when they lost Medicaid or CHIP in 2018, and there are sizeable staffing shortages in many Medicaid agencies.

Participants in our focus groups were extraordinarily appreciative of Medicaid. However, they highlighted three areas where they felt program improvements were necessary, each of which we believe raise serious concerns about the ability of state Medicaid agencies to ensure continuity of coverage, prevent inappropriate terminations, and enable smooth transitions to other types of health insurance coverage during the unwinding from the PHE. These three areas are communication from Medicaid agencies, Medicaid application and renewal processes, and assistance from Medicaid agency staff. Below, we describe the problems focus group participants identified in each area as well as their suggestions for how to improve processes in these areas.

Communication From Medicaid Agencies

“Beyond understanding,” was how a man from Maryland described the communications he received from the Medicaid agency, while a woman from Arkansas said: “[The letters] simply don’t make any sense to people.” Native English speakers were challenged by the complexity of the language in letters from the Medicaid agency, and the complexity was described as more problematic for immigrants. While in many states, non-English speakers can indicate they want communication with the Medicaid agency to be in their native language, mail was often “still arriving in English,” explained a woman working with Medicaid recipients in Virginia. “Even when [mail is] coming in their own language, sometimes it’s still too complicated for people to really understand.” Similar concerns were voiced about phone calls from Medicaid agencies, with one person noting that “they are not initiating phone calls in Spanish, even if it’s indicated on your account that you need a Spanish speaker.”

Focus group participants described being overwhelmed with the amount of information in Medicaid letters. A woman from Kentucky explained, “[They] put all these words, all these extra things…. It’s just too much going on,” and another participant described an 11-page letter from Medicaid that she thought could have been edited down to one page. Confusing letter design was repeatedly raised as a problem: “It’s hard to figure out where to look on the page for the necessary information,” explained a woman from Louisiana.

A woman who works with Medicaid recipients in Idaho noted that letters sent by the state Medicaid agency to people who were missing documentation used language that “makes it sound as if ‘hey you don’t qualify anymore, so you’re losing your coverage.’ And we found that families don’t even try to reapply. They just think they don’t qualify.”

Receiving the information from Medicaid was also often a challenge. “I live in a rural area, [and] the mail is inconsistent,” explained a man from Louisiana. A woman in Idaho whose child lost coverage when she did not receive several letters from Medicaid said, “Snail mail is outdated, and there’s no accountability.” Both described preferring texts or emails from the agency, although they acknowledged that many Medicaid recipients did not have the technology for those types of communication.

Focus group participants had several suggestions for how to improve Medicaid agency communication. First was making the communications simple and clear, using “maybe fourth-grade, fifth-grade reading level.” A woman from Kentucky recommended “being concise and very specific” and asking, “What do you want from me, what are you saying to me right now?” A woman from North Carolina advised, “Put the important positive stuff up front … the legalese needs to go at the bottom.” Another recommendation was to highlight the most important information using bullets and bolding.

The second recommendation was to test out communications with people who receive Medicaid to make sure letters are understandable to the intended audience. “I think Medicaid can be improved by speaking directly with beneficiaries/families to see what they need and what would be helpful/beneficial for them,” said a woman from North Carolina. “I would like to see more beneficiaries/families on stakeholder committees.”

The third recommendation was to communicate with Medicaid recipients in multiple ways because recipients had wide-ranging preferences on the mode of contact. “Clients need to be asked, ‘What form of communication works best for you?’” recommended a woman from Arkansas who works directly with Medicaid recipients; they then must “be able to [receive] individualized communication,” she added. A woman from North Carolina was pleased with the communication strategy her state had used to inform Medicaid recipients about the transition to managed care and recommended other states use “multiple layers”:

“They started with postcards and sent that out to everybody. That way they got the postcards that were returned … and then tried to update addresses in the system, and then send them out again … . And then they also did phone calls. Then they also did the robo calls, and then they also tried to get the county caseworkers to be reaching out.”

Application And Renewal Processes

Many focus group participants described applying for and renewing Medicaid coverage as “just really stressful” and “very challenging.” A recurring concern was the amount of paperwork that needed to be submitted, which was often perceived as an effort “to trip you up.” A woman from Kentucky explained:

“They’ll ask you for more things, more proof, just re-asking you things over and over again, re-asking you to submit your income, asking for things that don’t change like asking for a birth certificate over again for my kids like four years after they were born, and we’ve already been on Medicaid for years.”

A number of participants described the quick timelines required for document submission as extremely challenging. A man from Arkansas said, “I might get it [the document request] on Monday, and it might be due by Friday,” which he described as stressful. When a woman from North Carolina submitted a requested document after the deadline and asked if her Medicaid coverage could be reinstated, she was told that she had to start again and reapply.

Medicaid agencies’ rigidity and inflexibility was a recurring theme. A woman from Kentucky explained, “They’re very critical that you do everything accurately or you get denied; you get cut off if you don’t do recertification on time. But then they are very careless, and they just mess up anything.” A man from Louisiana reflected on challenge of the process:

“I mean obviously we’re all struggling, that’s why we’re on Medicaid … it’s like you have to be an investigator, you have to learn your own rights, you have to learn your own stuff and then you have to call them on it, and … yeah, it shouldn’t be this hard.”

There were two key suggestions from focus group participants. The first was greater flexibility and “grace in deadlines for document submission,” and the second was for more automatic enrollment and renewal processes. “We have a unified application here in Florida with SNAP [Supplemental Nutrition Assistance Program] and Medicaid, which I think is hugely helpful,” explained a woman from that state.

Assistance From Medicaid Agency Staff

Focus group participants described needing assistance from agency staff but said that it was often very hard to get. “If you call the Medicaid office and ask for clarification … then you’re never able to speak to anyone,” a woman from Florida explained. In-person assistance was also a challenge. “I be having one simple question, come in and ask,” a woman from Arkansas stated, and the result is “me ending up sitting for an hour and a half just to ask the question.”

Another concern participants expressed was that information provided by agency staff was often inconsistent across staff members. A man from Maryland described meeting with three staff while at an agency visit, and each staff person described the process differently: “They didn’t even deal with what the other person said.” A woman from Arkansas reported a similar experience: “I just feel like one person tells you one thing, and another tells you another, so it’s like who do you listen to?”

Lastly, a key theme participants repeatedly raised and were concerned about was the negative way staff treated them. “You’re treated as though that you have little or no value,” a woman from Florida said; others said, “They’re rude,” “It’s unfriendly,” and “It’s no compassion, it’s no understanding.” A woman from New York described her treatment by agency staff: “I was very mistreated …. It’s a lot of bad attitude from the beginning, as soon as I walk in and … I have my accent. Immediately it’s an attitude.”

To address these issues, focus group participants suggested that Medicaid agency staff would benefit from empathy training in addition to training about program details because “those that are working the frontline need to understand that people who come are coming for a reason. They need help, they need assistance.” As a person who works with Medicaid recipients in Arkansas put it, “We’d like to see a culture of ‘We [Medicaid agency staff] provide one of the most critical programs to keep Arkansans healthy and working—how can we help you access these services and stay healthy?’”

Another suggestion from focus group participants was to increase the pay for workers at state Medicaid agencies. This was proposed to both reduce staffing shortages and improve interactions between Medicaid staff and Medicaid applicants and recipients. A Medicaid recipient explained:

“I feel like if they were paid what they’re worth and treated what they’re worth and made to feel like they are a part of the solution and not a part of the problem, that a lot of these interactions that everybody has spoken about would stop.”

Conclusions

Many focus group participants expressed fears about how the PHE unwinding will unfold. As a woman who works with Medicaid recipients in Arkansas put it:

“We’re very, very worried about the chaos that’s going to come as the public health emergency unwinds. People who are eligible are likely to get kicked off and needing more and more support, no doubt.”

CMS and state Medicaid agencies are certainly aware of the looming challenges. CMS has issued guidance and resources to help states plan for the end of the PHE, so that they can ensure continuity of coverage, prevent inappropriate terminations, and enable smooth transitions to other types of health insurance coverage. Recommendations provided by CMS in pursuit of these objectives match many of those we heard from focus group participants. The agency has recommended that states:

CMS recommendations with respect to staff focus on workload distribution and providing training on enrollment and eligibility policies—although not on encouraging staff to use greater compassion and understanding when interacting with Medicaid recipients or increasing compensation to staff.

The focus group findings add urgency to these recommendations because they underscore how critical Medicaid coverage remains to those who receive it—57 years after the program’s creation. The lifesaving, health, and financial benefits of Medicaid described by focus group participants are entirely consistent with the empirical evidence on the program’s impact. The focus group findings also demonstrate that many state Medicaid agencies need to substantially reform their operations. Some of the recommendations we heard could be pursued at comparatively little cost, such as implementing federal plain language guidelines in Medicaid communications and having people with Medicaid provide feedback on the clarity of draft communications. Others would require a serious commitment of time and potentially also of resources, such as creating a culture of respect for people with Medicaid, and increasing compensation for agency staff. Nevertheless, the personal experiences of people with Medicaid and those who directly work with them underscore the importance of state efforts, particularly as we face the difficulties of unwinding the PHE.

Note 1

In June 2022, we conducted three focus groups over Zoom with 20 people who had Medicaid coverage themselves or whose children had Medicaid coverage from across 13 states. We also conducted two focus groups with 12 people who work directly with people with Medicaid, such as assisters, lawyers, and social workers; four of the participants either had Medicaid themselves or their children did.

Authors’ Note

We would like to express our gratitude to the participants in the focus groups for sharing their Medicaid experiences with us and to the advocacy organizations across the country that recruited the focus group participants. The focus groups were possible because of support from the Robert Wood Johnson Foundation.

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