Consistency built the trust necessary to cover one of the year’s biggest public health stories.

Project Summary

During the pandemic, Medicaid programs temporarily paused what’s known as “redetermination.” Those are the paperwork-heavy processes that people on Medicaid have to go through on an annual basis to establish eligibility.  During the pandemic, redetermination was paused across the country — if you were on the program, you could stay on. But with the official end of the public health emergency in May of 2023, redetermination processes began again — and people familiar with Indiana’s Medicaid system were worried that the system’s previous administrative errors were going to be repeated on a massive scale, kicking people off their health insurance even if they were still eligible. And that is exactly what happened when the process, called the “unwinding,” began. 

At the time, I was working with Side Effects Public Media as their community engagement specialist. I wasn’t a reporter, but I worked with the reporting team to forge connections between the team and the community they served. 

As the public health emergency of the pandemic came to an end, the sources I’d built as an engagement specialist over the last few years told me repeatedly how worried they were about the unwinding. I began arranging as many listening sessions as possible to learn how it would impact people. The resulting body of work produced by Side Effects Public Media and Indiana Public Broadcasting helped raise awareness about redetermination, which many people were not aware of before it happened, and focused on “news you can use” to help people navigate a confusing and overwhelming process.

When our America Amplified Managing Editor Alisa Barba asked me to feature this Medicaid project as an Amped Up, I agreed to humbly submit my own first-person account of how we did this work for the website and newsletter. I hope it’s helpful for you!

Objective

Advocates and community health workers alerted us that this big administrative change was coming and that they feared the state was not prepared for it. They were afraid the human stories would get lost, reduced to statistics and numbers. So I went into this engagement project with an ear for the human stories. Side Effects Public Media has always focused on highlighting the stories of people in the midst of stories of policy. That can be hard with a big, complicated and frankly dry topic like Medicaid, but it’s what I wanted to do.

At the same time, I wanted to help plug knowledge and information gaps. This topic, like I said, is big and confusing, so I wanted to make sure any work produced had an eye toward service. What could a reader do with this information? How does this benefit a reader going through this transition? Will they walk away more informed and more empowered?

The Challenge

Medicaid is so dry. It is really hard to tell a compelling story that fully explains how a paperwork issue went sideways, and how that paperwork issue delayed someone’s healthcare in a significant way. Additionally, it’s hard to find Medicaid recipients who want to talk about their stories, partly because of the stigma directed against people on public assistance. Even advocacy and medical organizations have a hard time with this — I attended a webinar for activists about how to recruit Medicaid recipients to give testimonies, and the speakers themselves admitted how hard it was. Also, medical folks were not willing to just put us in touch with patients, for obvious legal reasons. We had to build a lot of trust before they felt comfortable connecting us. 

The Solution

Before the unwinding even began May of 2023, I was able to leverage contacts to gain entry into an informal collective of advocates called the Medicaid All-Hands group: an unofficial collective of health providers, policy advocates and health insurance navigators who were all concerned about the unwinding and wanted to work together to make it easier. I attended meetings of that group at least twice a month from March-October 2023. Those meetings were off the record, but the same issues came up with great frequency: People were not receiving notification from the state that their redetermination period was coming up; people were getting disenrolled because the state had inaccurate information, even though the recipients had submitted the correct information; the people staffing the call centers, who were supposed to be able to help recipients, had less knowledge about the Medicaid process than the insurance navigators. Even though these meetings were on background, I heard the same things often enough that I could confidently share the information with our reporting team so we could seek out the information through other means.

Being a community engagement specialist rather than a reporter allowed me access to spaces I otherwise would not have had access to (a fact people told me outright, multiple times). I was able to attend things like a peer group call with more than 140 Indiana navigators and ask questions about what they were seeing on the ground. I attended events and talked to people on background, then followed up to ask if they would be willing to talk on the record with a reporter. That included virtual events, where I reached out to people who asked good questions or recounted their own Medicaid experiences in the chat. 

In total, I arranged 32 listening sessions with more than 50 people, from Medicaid recipients to navigators and advocates. Many of those were one-on-one, though a few of them were with community centers or health clinics, and none of them were on the record. But having a first conversation with me — where I described the issues I’d been hearing about, the stories we hoped to tell and our reporters’ processes — sometimes made people more willing to talk to a reporter on the record.

When our Side Effects team couldn’t take on a story, I reached out to our partners at the statewide collaborative Indiana Public Broadcasting. Their reporter, Violet Comber-Wilen, took on several Medicaid updates and published news-you-can-use stories for the statewide audience. We also experimented with short, helpful Tiktok videos and Instagram reels to get basic, necessary information out more broadly. Our Side Effects editor Farah Yousry created one summarizing the unwinding and what people could do to prepare; and upon hearing advocates worry that Medicaid recipients would not know to open the letters they received from FSSA, I created a reel showing the exact letter recipients could expect and explaining what to do with it when they received it. Later, someone told me that the reel was the only reason they’d opened their letter at all. Unexpectedly, those reels performed very well — which is unusual  around a topic like Medicaid. 

The Takeaways
- Showing up repeatedly at all these meetings and listening sessions was a big deal. It demonstrated that I was interested in the topic and the issues affecting people beyond the stories our team could get out of it. It also got people more familiar with my name and my face, which made them more comfortable having me in their spaces.

- Keeping the engagement circle going was vital. Every time Side Effects or Indiana Public Broadcasting published a Medicaid story, I sent it back to the All-Hands group and/or anyone else I had spoken to or about our coverage. I described the story, how the community contacts had informed it, and asked if anyone had feedback for us. Sometimes they did, and it was almost always positive, and sometimes it prompted people to pitch stories or connect us with sources with powerful personal experiences. 

- Honoring boundaries built trust. It was a big deal for advocates and medical professionals to let me into their space. Even off the record, some of them still checked themselves or held back because I was in the room. At least once I was asked to leave a room so the attendees could discuss something they felt too sensitive for a journalist, even one who wasn’t a reporter, to hear. I always gave space where asked, and this did a lot to instill trust. One advocate gave me a full on-background interview and said that I had changed her mind about talking to the press, and she would be more open to it in the future.