The Dose - ENCORE | Race Matters — Arriving at More Equitable Health Policy

Episode Date: August 12, 2022

Social programs like Medicaid are supposed to help people, but often they reproduce racial inequities — and sometimes actually create them. That’s because even well-intentioned policymakers can’t always see the disproportionate impact their decisions have on people of color. But what if there were a tool to help legislators and government officials identify when and how they should be thinking about racism? Well, Jamila Michener has developed one. And on this encore episode of The Dose podcast, she explains how it can be applied to Medicaid’s transportation benefit specifically and to health policy more broadly. Michener, an associate professor in Cornell University’s Department of Government, speaks about how her research on, and personal experiences with, Medicaid has highlighted the importance of hearing from people impacted by policy choices. “You can't really address the ways that racism manifests… unless you have people who experience it directly at the table, not only having voice, but also having some power,” she says. This encore episode was originally released on 2/11/2022.

The Dose is a production of the Commonwealth Fund, a foundation dedicated to health care for everyone. Hi listeners, The Dose is taking a short break this summer as we plan for the season ahead. While we're away, we wanted to share some of our favorite episodes from the year. Today, we're going back to my conversation with Jamila Mishner, an associate professor in Cornell University's Department of Government. She has developed a tool to help policymakers identify when and how they should think about racism when they design social programs like Medicaid. The goal? More equitable health policy. Before you tune in, I have a request. If there's a healthcare topic you want to learn more about or an expert you think we should feature, please get in touch. You can send us an email at thedoseatcommonwealthfund.org

or find me on Twitter at Shanwar Sirvai. I love hearing from listeners and your ideas will help us make the new season even better. Thanks for listening to The Dose and sharing the episodes you enjoy most. Thanks for being with me, Jamila. Thanks for having me today. I'm really excited to have this discussion. I'd like to start with your work as an innovator. You've designed the racial equity and policy framework. And with this tool, you're essentially challenging incumbent ways in which health policy perpetuates structural racism. So first, can you talk a bit about what it was you wanted to update. I think that particularly in the last two years,

there's been a lot of an opening and a lot of consternation, a lot of questioning, a lot of thinking about, well, what role does structural racism play in shaping different institutions and processes that are affecting people's lives? I think that a real confluence of events, whether it was the murder of George Floyd

and the protests that followed, and then, of course, all of that happening in the middle of a pandemic that had really wildly disproportionate racial outcomes, got people thinking, okay, we know that race and racism matter. We know that these things are shaping processes and outcomes, but how do we think about it? What do we do about it? And people from all across the country were sort of calling on me and asking me to do presentations and asked me to do workshops and asking me to give talks. And essentially, the nature of the requests were help us to understand how to think about and incorporate our thinking about structural racism into the work that we're doing around policy, especially health policy. And so when I got the

opportunity to sit back and create a framework that could benefit everyone who had those same questions, it really appealed to me. There are only so many workshops you can speak at or talks you can give, but when you create something that anyone who's interested can find and pick up and read, it gives them a springboard for thinking more deeply about these issues and hopefully puts many people in a position where they can connect what they want to do in an ideal world, which is to reverse and end and ameliorate racism,

to connect that goal to the concrete work of policymaking and the policy process. That was the whole idea behind the framework, to create something tangibly useful to people who really want to see change happen. So what were the concrete policies that you wanted to change, and how did you see people engaging with the tool? My research focuses primarily on Medicaid. And so when I thought about this framework, I thought Medicaid is a policy that is really important in pretty specific and particular ways for people of color, right? For Black and Latinx and Indigenous and Asian populations. And I wanted really people to think

about from the large parts of Medicaid, like the Medicaid expansion, to the more nuanced parts of Medicaid, like how Medicaid chooses to reimburse providers for services and everything in between. I wanted actors that had some influence over this process, that could speak to it, that were studying it, that were in a position to change it, to be able to have a framework and a springboard, a basis for thinking carefully about changing that program. And so I also wanted to create something that people could use beyond Medicaid that wasn't only relevant for Medicaid. But Medicaid was kind of my starting point in my lens because I knew this is such a big,

important and complicated program. If I can come up with something that can help people to make headway with Medicaid, then it'll probably be able to help them and illuminate their thinking in a wide range of other policy areas. So give me an example of how Medicaid maybe produces or reproduces racial inequity and how using the framework would change that. Absolutely. Hospital systems and health care systems and doctors' offices, they have to make sure that their books are closed and that they're not in the red. And so they often prefer patients that are not Medicaid

beneficiaries because they're going to get reimbursed at higher rates for them. So sometimes there'll be signs posted right on the outside of a healthcare provider's office not accepting Medicaid patients, right? Or currently accepting Medicaid patients, which means sometimes we're not, right now we are. And that creates access challenges, right? Medicaid beneficiaries just simply may not be able to have access to the doctors that are closest to them, that are easiest for them to get to, that are preferred by them, that might give them the best treatment, because those doctors may not be able to accept Medicaid patients because they're reimbursed so much less for those patients, right? Now, the way that translates into racial terms is that, first of all, over 50% of Medicaid

beneficiaries are people of color. So if policies in the program create imbalances or a lack of access, that's just naturally going to affect more people of color because they are more reliant on the program. Right. And so seeing this, how does your framework help to rethink that? Yeah. So, you know, in the first instance, the framework is meant to sensitize us to that because a program like Medicaid and lots of health policies are like this. They can be super wonky, right? There are actuaries involved and accountants involved and all sorts of formulas. And it's really easy for no one involved to think this has implications for racial disproportionalities or racial inequalities. You're just thinking,

what's the federal reimbursement rate? What are the states doing? How's this going to be matched? What are the financial bottom lines? And so part of what the framework says is, wait a second, here are the questions you should be asking. Here are the things that you need to be aware of that emerge in any policy process when we're making these decisions that can help you to identify when and how you should be thinking about racism. Because it may not seem like it has on the surface to do with race. And unless you know the right questions to ask, you can easily miss the way that racism actually operates through

systems, through processes. So like, give me an example of a question that you're pushing people to ask. And do you get pushback when you make this recommendation, for example, about voice? You know, I sometimes get pushback, but it's not pushback because folks, well, at least they're not admitting that they're uncomfortable making space at the table for new people. But it's pushback that's essentially pragmatic. How are we going to do this, right? Medicaid beneficiaries are busy people. They're often economically vulnerable. They're often facing an array of challenges in their lives. How do we bring them to the table and ask them to do the kind of work that we're doing alongside us in a way that's respectful and that's truly inclusive and incorporating and not hierarchical

or not tokenistic, right? I think the questions around how do we do this and how do we do it in a way that's gonna get us what we're looking for, that's gonna help us to make progress and not just as a symbolic, oh, look, voice, there's one person here who never says anything and can't make it to three quarters of the meetings because they work a full-time job

and we have meetings at 10 a.m. on Tuesdays. That kind of practical thinking is what a lot of leaders, whether it's Medicaid directors or different health policy leaders, say to me, we want people's voices in the process. We just don't know how to do that successfully. And so I think there are a bunch of challenges there, but you don't even begin to really address those challenges until you identify voices like a crucial and non-negotiable aspect of this, as opposed to thinking, it'd be nice if we could hear from somebody who's directly affected, but that's hard, so we'll move on, right? Once you

say, no, no, no, no, you can't really address the ways that racism manifests in these processes unless you have people who can experience it directly at the table, not only having voice, but also having some power in the process that what they say, not only that they get to say something, but that what they say carries weight and can influence the way that things go. That's really important. So let's think about this, zooming in onto one piece of Medicaid, the transportation benefit. Tell me a little bit about why you decided to focus on this issue of transport. Yeah, so there are a few different things. I mean, I've been working with a team of scholars who are, some are at the Ithaca campus here at Cornell and some are at

Cornell's medical school. And we were thinking initially, we really want to study a topic that gets at structural racism, but really gets at sort of a really nitty gritty aspect of it. And that helps us to understand how aspects of the program, specific elements of policy design can lead to racially disproportionate outcomes, even when we don't realize it or don't intend it. So we've been brainstorming about ideas for some time. So the non-emergency medical transportation benefit for Medicaid, which is shorthand, we call it NEMT, had come up a few times. But when it came up, it really jumped out to me. And I sort of very much wanted that to be the thing that we pursued. And ultimately,

we decided to pursue it. And the reason why it stood out to me is because of just some of my own personal experiences with that program. So my mother is, or was, she actually passed away just a few months ago in October but she was thank you thank you she was a Medicaid beneficiary and that was on account of a range of things one was her income which was quite low and the other was some health conditions that she had so she had end stage renal failure that required dialysis so three three to four days a week, she needed to get dialysis treatment. And she also had dementia, which started off as it does, mild,

and then got more and more severe over time. And so because of those conditions, she needed to get to medical appointments very often. And it just wasn't possible for my family to always ensure that she got there. My mom lived in New York City and I'm four hours away in Ithaca. So it's not as though I could take her all the time. And even when my mom for several years, she lived here in Ithaca with me. And it was really challenging taking her to appointments before she had NEMT. I took so many hours off of work, went in late, left early, rearranged my existence. So even though I had a car and I had a

spouse and we had support, we also had two small children and it had been really hard to get her to her appointments. And when she moved back to New York City, and this was before her dementia had progressed, but she still needed dialysis, it just became impossible because she would have to take two buses and a train to get to where she was getting dialysis. And you're exhausted after dialysis. You can't take that public transportation back home. So we were able through Medicaid to secure transportation for her. And I was able to see from that kind of firsthand perspective how those benefits really unfold. That must have been wild because as you said, this is what you study, but you're also experiencing it in your own personal life. Yeah, it's pretty crazy. And I would always tell people it's really odd to be someone who wrote a book about Medicaid,

but also consistently struggled to help my own mother navigate the program. And I would often think, man, if I am an expert on this and I still have a hard time, I don't know what ordinary people are doing. It showed me how much the devil was in the details, right? And how elements of structural racism can emerge even when everyone is doing what they are ostensibly supposed to be doing. And so we ended up having to find a facility in Long Island. But then, of course, transportation is absolutely necessary because now the closest person in my family is an hour away. None of us live in the nice suburbs of Long Island. None of my family members live there.

And so no one could help with appointments. No one could help get my mom back and forth. And NEMT became that much more crucial. So that's just one example of how things like racial residential segregation and the fact that people of color are living in different places with different access to facilities and different transportation needs, those things can amount to differential access

and certainly can make certain kinds of services like NEMT particularly important. Thank you for sharing that. And just taking this example of your mother using and needing this benefit, NEMT, for transportation, how did you see racism being reinforced and played out in this benefit? So for one is that this realm of kind of transportation justice, who has a car, who has a working car that is able to get you from one place to another, who lives within a certain proximity of public transportation, who feels safe taking public transportation, because you're going to stand at that bus stop or stand

in that train station in a neighborhood that either is a calm neighborhood where there's very little violence or is a neighborhood where there may be a lot of violence and where you're not normally outside. And so you have to change your transportation patterns and habits based on that context. All of these questions are what I call racialized, which means they have racial meaning, racial repercussions, right? And so we know, for example, that in hyper-segregated black and brown communities, you also have more challenges around violence, which makes transportation both vital and tricky. Because whether you can or are willing to wait at a certain bus stop, take a certain bus line or train line is going to be largely a function of your assessment of

the safety of doing so, right? So I certainly spoke to people who would rather miss an appointment than take the buses that they had to take to get there or go through the neighborhoods that they had to go through to get there, right? And that's the kind of issue that, in particular, Black Medicaid beneficiaries will bring up and will talk about, right? This is something that I found out when I was writing my book, which is I was asking people about their experiences with Medicaid. I wasn't asking them about their neighborhoods. And actually, when I went into writing my book, Fragmented Democracy, I wasn't thinking about neighborhoods.

And so I would say to people, well, tell me about Medicaid. And especially with black beneficiaries. Before I knew it, we would be talking about their neighborhoods. And how did we get there? Because in order to navigate the services that Medicaid offered, they had to transverse neighborhoods and different forms of public transportation. They had to decide which bus they were going to take and know which street it was going to let them out of and whether they felt comfortable walking down that street to get to the clinic. And if they didn't, they'd almost rather not get the care

than to risk themselves in that kind of context. So that's a form of structural racism in terms of vulnerability to crime and violence and high poverty, low income neighborhoods. That means the implications of NEMT for folks in those communities and the barriers they're going to have to usage are just completely different than folks in other communities. And you've obviously thought about this a lot, both in your work and in your own experience. So how could NEMT be transformed by applying your racial equity framework to it? I'm doing a research project on NEMT right now. And part of the reason I'm doing the research project is because I want to take the sort of insights that are in the framework and really apply them directly. And then as a scholar, think about what that means, you know. And so

one example, if we think about voice, if we apply that here, some of the problems that we've discussed with NEMT are on the radar of policymakers and other people who write the regulations and make the funding and budgeting and administrative decisions around NEMT. And some of them are not, right? They're not at all. And so what does it mean to have Medicaid beneficiaries, especially beneficiaries who are people of color, who know what it means to experience NEMT as a low-income Black person living in a hyper-segregated community or a Spanish-only speaking Latina woman living in a community where she may

have to figure out how to navigate a language barrier between her and her transportation provider. Or someone living in an indigenous community who is on a reservation and who's far out yet needs the transportation services there but may have access issues. which questions to ask, which policy levers to focus on, how to sort of pursue change is really going to depend on asking the right questions and bringing the right voices to the table. It also depends on having data that allows us to identify disproportionalities, right? And to see like, oh, usage patterns look really different here versus here. What does this mean with respect to race and ethnicity? And how can we think about it through the lens of structural racism? And then even thinking about institutional design, right?

NEMT is very decentralized. States have a lot of discretion over how they design and pay for and structure the program. And then sometimes hands even more of that discretion down to localities. So the framework points us to think about that sort of thing too. Wait, this decentralization means that the number of actors who can potentially make a decision about this that's impactful is proliferated. And so now we have to think about at each level who's making decisions and whether and how they're positioned vis-a-vis

their connection to people who have lived experiences with these programs and vis-a-vis their understanding of these issues of structural racism that are on the table. So part of what the framework helps us to do with something like NEMT is start to identify those issues and questions that we need to be attending to, and then work through who are the actors involved that can speak to those questions? What are the institutions that matter? You know, when you think about something like voice, voice has to be amplified through institutions. Where should people's voice be heard? Is it through the Center for Medicaid and Medicare Services? Is it through the Indian Health Services? Is it through state and local government institutions,

Medicaid advisory boards? You have to be able to think about the actors, the institutions, the processes that matter. And for each of those, implement crucial questions about structural racism and its implications. And that's what's interesting about your work. You really emphasize the process and the choice. What you're saying is that policies are the work product of people and people thinking about systems. And ultimately, the way they think about those systems is what has an impact. And so what is getting in the way of policymakers making better choices, thinking about these things more intentionally? Some of it is that there is a real status quo bias that is baked into the U.S. political system more generally, right? There are federal agencies and state agencies and standing committees and standing processes and ways of doing things that

have simply been done that way for a very long time. And it's very easy to kind of replicate existing processes. It's pretty hard to change new ones or to create new ones or to change existing ones, in part because existing processes have actors and stakeholders with particular interest attached to them. And so when you start saying, let's change this, like, let's bring more voices to the table. What does that mean about the influence of the existing voices, right? Let's critically assess the role of a variety of actors and institutions in these processes. That can put people a little bit on edge, right?

What's going to happen when you critically assess our processes? Are you going to come away saying that we're racist, right? And so that worry that really this process is about like identifying who is racist and like calling them out or something like that, it can cause people a little bit of racist and calling them out or something like that. It can cause people a little bit of worry and make them a bit hesitant. Plenty of people don't think the transportation benefit is a particularly important benefit

because they have access to transportation and have never worried about it a day in their lives, right? And some people might know it's an important benefit and might know it has disproportionate racial implications, but can't really fathom what that looks like on the ground, again, because they're not experiencing it. And so to change the way that people think and the kind of scope of their thinking, right? Sometimes we have these discourses and ideas around deserving this, our hard work or fairness. Right. That can really be in the background, structuring our assumptions about certain populations, about certain processes.

Oh, a work reporting requirement. That seems fair. Everyone should work hard. Who couldn't be on board with that? And it's like, okay, but what happens when we talk about the research that shows that there's systematic racial discrimination in the labor market? It means even working hard doesn't get you to the same place. And once we make work a condition for health insurance, we're smuggling in those same biases. So unless you're pushing to get outside the boxes of those ways of thinking that maybe we're really comfortable with and are kind of deeply embedded in our larger cultural milieu, you can sort of miss things. So part of it is about ideas. Part of it is about the inertia

and the status quo bias built into institutions. And part of it is about the fact that change is just hard work. It is easier to keep doing things the way we've been doing them, even if we know there are problems and that there are some people being harmed. But to be bold enough, innovative enough, and be willing to take the risk of doing something different, it requires courage, and so it's no low bar. Well, that's the work that you're doing. So Jamila Michener, thank you so much for joining me on The Dose today. Thank you for the opportunity to amplify the work. I'm super grateful for it.

This episode of The Dose was produced by Jodi Becker, Julia Melfi, Naomi Leibovitz, and Joshua Tallman. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for our art and design, and Paul Frame for web support. Our theme music is Arizona Moon by Blue Dot Sessions. Our website is thedose.show. There you'll find show notes and other resources. That's it for The Dose. I'm Shannur Sirvai. Thank you for listening.