- 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.
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: