During the debate over the Republicans’ unsuccessful push to repeal and replace Obamacare this summer, thousands of activists across the country held rallies, attended town hall meetings and staged protests in an effort to stop the GOP. News coverage regularly featured protesters from the disability community, many of whom would have been affected by potential cuts to Medicaid.
With images in the media showing protesters being pulled from wheelchairs and arrested on Capitol Hill, it may have seemed that Medicaid beneficiaries were mobilizing in large numbers. But very few of the 70 million low-income and disabled Americans who receive Medicaid benefits actually participated in the debates, despite the fact that changes to the federal program could have had fundamental consequences for their lives.
Based on my research, that is hardly surprising. In my forthcoming book, I show that people enrolled in Medicaid often feel stigmatized by the system. They can be frustrated by differences in the way the program is administered across states and even local communities. As a result, they disengage from politics.
Here’s how I did my research
I began the project to figure out why people enrolled in Medicaid tend to participate in politics at low rates, even after we’ve accounted for other disadvantages like poverty and ill health. Previous research has found that recent Medicaid expansions increased aggregate voting rates, but those increases could have occurred for many reasons, including backlash voters who opposed Medicaid expansion or non-beneficiaries who turned out to vote because of their support for expansion. What we cannot tell from aggregate numbers is whether Medicaid beneficiaries themselves voted or got involved in politics in other ways.
I spent several years conducting interviews with nearly four dozen Medicaid beneficiaries and representatives of more than a dozen organizations that advocate on their behalf. My research also draws on large-scale surveys that include thousands of Medicaid beneficiaries.
In my interviews, I found that Medicaid recipients often feel stigmatized. When Medicaid is administered via processes that are belittling and degrading, beneficiaries come to believe that it’s hopeless to try to change the system, or influence the world.
The people I interviewed told me that they were treated like “stupid animals,” made to feel like they were “nothing,” and “looked down upon” for needing help. Not all beneficiaries were treated this way, but for those who were, such experiences proved that “no one listens” to people like them.
Medicaid bureaucracies vary tremendously by state
But that is only the beginning of the story. Medicaid is not a single national program; it is an intergovernmental program that affords states tremendous discretion in the way that it is implemented. States, in turn, give localities (like counties and cities) substantial flexibility in administering benefits.
After interviewing people in 13 different states and 20 different cities, I learned that their experiences with the Medicaid system differed dramatically depending on where they lived.
Take Terrie, for example. As a low-income working mom always on the hunt for opportunities, she had lived in Ohio, California, Illinois and Georgia. Her experiences with the system were quite different in each state.
“Ohio is the easiest, they do care about their people,” she told me. “California, their process is probably faster, but there are so many people and it’s so rapid that it is out of control,” which made her feel like “just another number.”
Terrie also said, “in Georgia, there are limitations in everything that they offer … you either can get this and can’t have that, or you can have this and can’t get that.” Keeping up with Medicaid and keeping her son “safe and healthy” felt like a “whirlwind.” In the end, she was convinced that she had “no say in the process” and no real political influence.
Terrie’s experiences — and the feelings of powerlessness that came with them — were common. After moving from a small town in Mississippi to the city of Atlanta, Lucy, a veteran and single mom, suddenly found herself fighting at every turn to keep her children enrolled in Medicaid. Each tussle with the state of Georgia made her more cynical about government and politics.
John, a middle-aged man with a chronic illness who had been on Medicaid since he was a child, had to completely rearrange his life plans when he realized that a much-anticipated move from the Midwest to the Southwest would compromise his access to home health-care services. “It does kind of feel like you just reach a fork in the road where you just give up, you just lose,” he said. He wanted nothing to do with politics.
All of these people expressed deep gratitude for Medicaid. Nonetheless, their experiences gave them a strong sense that state governments were indifferent to their needs and impervious to their voices.
But it wasn’t just the states. Local inequality also mattered.
Medicaid beneficiaries who lived in nicer parts of town found that they could take better advantage of services, and had much more positive experiences along the way. For those on the proverbial “wrong side of the tracks,” disadvantages compounded.
Daphne, a young college student who lived in a tough neighborhood in Syracuse, N.Y., was on Medicaid throughout much of her childhood and as a young adult. Over those years, she had gone to different clinics in different parts of the city and observed how the treatment Medicaid beneficiaries get is “different in different places.” She likened it to the distinction between “Olive Garden … or Burger King.” In “the hood,” Medicaid was Burger King — and the people who lived there got the medical equivalent of cheap junk food. As a result, Daphne said her experiences with Medicaid reinforced her lack of trust in “the state” and her doubts about the intentions of politicians.
Daphne wasn’t the only one. Using a large survey conducted in Chicago between 2001 and 2003, I tested whether where someone lived — neighborhood characteristics — affected the relationship between receiving Medicaid benefits and participation in activities like attending a political meeting, taking part in a protest and working on a community project. Medicaid beneficiaries who lived in especially challenging neighborhoods (i.e., those they themselves perceived as highly disorderly) were significantly less likely to participate in politics than beneficiaries who lived in more pleasant locales. These differences persisted despite accounting for income, race and many other potential explanations at both the individual and neighborhood level.
The Medicaid bureaucracy teaches recipients that they are unimportant and ineffective
To be sure, Medicaid acts as a vital lifeline, improving and extending lives. But my research shows that the way it is administered also teaches people about their place in society, educates them and those around them about politics and power, and influences political participation. In doing so, the program may exacerbate inequality in political participation, making it less likely that political leaders will hear the voices of the United States’ less fortunate citizens.
Jamila Michener is an assistant professor of government at Cornell University and author of the forthcoming Fragmented Democracy: Medicaid, Federalism, and Unequal Politics (Cambridge University Press).