The Medicaid program has generated considerable attention and debate over much of its 50-year history. Despite the attention, it is disheartening that there is still so little public understanding and so much misinformation regarding how the program works, serving the disabled, elderly and low income people of our country.
This information disconnect is aided by the fact that those discussing, debating and even deciding Medicaid policy typically neglect to consult with the people closest to it — the recipients.
In 2016, several researchers, including me, were asked by the Health Forward Foundation to travel around Missouri to interview groups of Medicaid consumers about their experiences. We learned a lot from them about their challenges and viewpoints and also got ideas about how to improve Medicaid in the state. You can read the full report here.
Our project focused on residents in the southeast, southwest, central, and Kansas City regions of the state. In Missouri, 88 percent of Medicaid consumers are either children, disabled individuals or low income elderly. In total, we talked to 60 individuals with Medicaid experience, mostly current, with some recent recipients. Our groups consisted mostly of adults, some disabled, between the ages of 20 and 60. Three-fourths were women. They were not a statistically representative sample, yet they provided in-depth insights not possible using standard surveys.
The results are powerful. They give a “real world” perspective of how consumers perceive and experience Missouri Medicaid in daily life. Their ground-level vantage point is important in contradicting some of the stereotypes we hear in daily conversations or media talk shows.
Most Medicaid consumers we talked to were proactive and working hard for their families. They spent hours coordinating Medicaid coverage, often at the same time holding down jobs and managing to provide additional hours of unpaid care for family members. The people we talked to consistently expressed gratitude for Medicaid and told us how important the program was to maintaining their health. Yet, while grateful for coverage, they also reported experiences that added stress and frustration to their lives. Here are two examples:
“…when you get the application there’s no guidelines with that application to express what information needs to be given. There’s no information on thresholds, income guidelines…also, as far as the timeframes involved. They closed a lot of the processing centers down in Missouri and combined them all into 3, so now there are only 3 to process the whole state of Missouri…I got a kid living with me that’s not mine, she’s my niece. She was on Medicaid and now all of a sudden she’s off Medicaid and we don’t know why, we can’t find out why. Since then, we’ve put in three applications…we’ve not received any letters from them. You may spend an hour and a half on the phone on hold waiting for somebody to pick up because they’re so inundated with phone calls with people who don’t understand what’s going on.”
And from an entirely different region in the state:
“When you live in the lower income neighborhood…you see the kids, you’re seeing health care, because you see the condition they’re in. Nobody has to tell you these kids aren’t getting seen by a doctor, you can tell by the way they look. And it’s not because their parents are negligent, it’s because the State won’t give it to them. These parents get worn out from trying to fight for their kids. Regardless of how much I love my kids it just gets to a point where I just have to turn my hands up and wait ‘til my son’s Medicaid card showed up in the mail. [she begins to cry] A year, my son went without therapy for a hip, not having a hip, [and] a prosthetic leg he couldn’t wear and being made fun of at school because he wouldn’t wear it. And here I am trying to get him the help he needs, being a good mother, and fightin’ and fightin’ and fightin’…My disabled child is asking me, “Mom, when am I gonna get to go to the doctor?” Ask the State–what do I say?”
A key goal of our project was to learn how to improve Medicaid and so we were particularly interested in hearing about obstacles that disrupted or delayed access to needed services. The first challenge for many was to understand and fulfill the eligibility requirements. These could be unclear and confusing with help sometimes difficult to get. As one participant told us,
“…filling out the application is probably the hardest part of the process. Not knowing the answers to particular questions. You don’t want to lie…you could get fined for it. You want to be honest. Like, going to college, I get grant money. I don’t know if that’s part of the income they’re talking about… You don’t really know and trying to find someone to ask is pretty much impossible…You go to the window and you have to have it completely filled out before they’ll help you. But you can’t fill it out because you don’t have the answers to the questions.”
Other recipients experienced significant delays in coverage. One recipient was nearly halfway through her pregnancy before she received her Medicaid benefit.
Another common challenge was the sudden loss of coverage in a variety of circumstances:
- In Missouri, which has not expanded Medicaid under the Affordable Care Act, pregnant women receive full Medicaid coverage only through childbirth, with coverage terminated 60 days later. A single mother with one child can only maintain her own Medicaid in Missouri if she earns less than $3500 per year. Put another way, she cannot earn more than $300 a month and remain eligible for Medicaid.
- Another consumer reported that she found out her insurance was gone when she went to the doctor.
- And in another case, a child received four months of medicine and then, without giving a reason, the child was deemed ineligible for the benefit.
Coverage gaps were also an issue. In particular, participants mentioned inadequate dental coverage and restrictive vision and medication rules. For example, one person told us, “I have a broken tooth and they don’t cover that or they just want to pull them because they don’t cover the other stuff.” This drew our attention to the considerable number of consumers in our Medicaid groups with missing teeth. Another participant mentioned the vision coverage that did not cover her daughter’s deteriorating eyesight. And another talked about approval times for medication, citing a three-day wait time for a child’s inhaler.
While we focused on aspects of Medicaid that could be improved, participants were mostly positive about the quality of the medical care they received. They rarely mentioned difficulties in access to local primary care physicians and the required specialists, although for those they often had to travel greater distances. They used the Medicaid program’s transportation assistance to help them get to providers, especially when coming from rural areas. They sometimes experienced frustration with Medicaid rules requiring that rides be ordered three days in advance, because it meant that transport was not available for urgent, last-minute appointments or appointment changes. Transportation assistance typically arrived on time; however, consumers often spent several hours following appointments waiting to be picked up. This could result in parents missing an entire day of work or children missing a day of school.
Another strong point that emerged from our groups was the feeling that Medicaid should cover both low-income men and women. As one participant put it, “The importance of taking care of men is lacking…like, if you have back problems you can’t work. If you get the medical attention you need, you can get back in the workforce, get off TANF, get off Medicaid, get off food stamps.” As another person observed, “…if they want us off Medicaid then we need to be taken care of health-wise so that we can get back in there.”
As policy researchers, we could not help noting that consumers at no point connected this lack of coverage to Medicaid expansion, which if enacted would have addressed it. Nor did consumers appear to be aware of the expansion issue or that Missouri’s legislature had taken a strong stance opposing it.
Overall, we learned from consumers that being on Medicaid, while providing much needed access to health care, can also present recipients with additional stress, frustration and loss of working hours. Consumers learn to manage their Medicaid coverage as long as it remains consistent; however, they and the population in general lack an adequate understanding of how the Medicaid system and health insurance in general function. Medicaid rules are often perceived as counterproductive and even punitive. Communication both to and from Medicaid offices is a particular problem. Consumers need to know the program requirements and to receive timely notification regarding status changes. They also need to have their questions addressed promptly and efficiently—and individually, when called for.
Toward the end of each group session, participants would begin to spontaneously thank the research team for coming to listen to their opinions and experiences. This is not typical in our line of work. In fact, one group, when this happened, erupted in applause. They said they had never before been asked to talk about Medicaid experiences or been asked for their ideas about how to improve Medicaid. While they expressed skepticism that anything would change, they thanked us for the opportunity to record their views.
Rather than unfairly perpetuating negative stereotypes, let us resolve to listen to Medicaid consumers and bring them into the conversation. We are grateful to Health Forward for the opportunity to do just that. These voices are most welcome and should continue to be a part of the current debate over how to reform Medicaid in Missouri and beyond.
You can read more about the issues with and solutions to improve Missouri’s Medicaid system in Health Forward’s A pathway to a reformed and expanded MO HealthNet system.