A Conversation with Advocates: What’s Working in Illinois During the “Unwinding”

A Conversation with Advocates: What’s Working in Illinois During the “Unwinding”

This blog is part of our Working Better Together series and was recorded by Carrie Chapman, Senior Director of Policy and Advocacy at Legal Council for Health Justice, Stephanie Altman, Director of Healthcare Justice at the Shriver Center on Poverty Law, and Nadeen Israel, Senior Vice President of Policy and Advocacy at AIDS Foundation Chicago. This blog series is intended to provide our Health Law Partnerships and advocacy partners with a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work. 

The “Medicaid Experiences” project referenced in this blog series is a collaborative endeavor of the National Health Law Program and eight state-based legal aid organizations. The purpose is to better understand the direct experience of individuals as enrollees and applicants for Medicaid and advocate for improvements.


This blog has been adapted from a recorded interview and has been edited for clarity. 

Carrie Chapman: Hello everyone, it’s a pleasure to have you here this afternoon. I’m Carrie Chapman, and I work for a legal aid organization called the Legal Council for Health Justice. I use she/her pronouns. We’re a small legal aid organization that provides direct services and also engages in policy and impact work related to Medicaid. I’m here with two of my esteemed collaborators and Medicaid champions, Stephanie Altman and Nadeen Israel. I’ll now pass the floor to Stephanie for her introduction.

Stephanie Altman: Thank you, Carrie. I’m Stephanie Altman, and I serve as the Director of the Healthcare Justice team at the Shriver Center on Poverty Law. I’ve been working in the field of Medicaid and insurance for many years, and we focus on training advocates around the state to help enroll their clients and patients in health care options. It’s a pleasure to be here and share some stories with you today.

Nadeen Israel: Hi, everyone. I’m Nadeen Israel, and I use she/her pronouns. I am the Senior Vice President of Policy and Advocacy at AIDS Foundation Chicago. Our mission is to end the HIV epidemic in Illinois by 2030, and we also work on ending homelessness through our affiliate organization, the Center for Housing and Health. I’ve been involved in Medicaid advocacy in Illinois for several years. Speaking specifically to HIV, roughly 40% of people living with HIV in our state are insured through Medicaid, so it’s a significant population. That’s why we put a lot of effort into advocacy work related to Medicaid.

Carrie Chapman: Thank you both. Stephanie, would you like to share positive aspects of Medicaid advocacy in Illinois?

Stephanie Altman: Of course! A major part of our work is to answer questions for advocates as they help people navigate the Medicaid system, and, right now, those questions increasingly are on unwinding and redetermination issues. These questions are addressed through HelpHub, which is a technical assistance center for enrollment assisters, which we run, and which now has over 3,900 members. We have experts on HelpHub like Carrie and Nadeen, and many of the individual issues and stories that we hear about on HelpHub are systemic barriers to care which we then raise with the state Medicaid agency. We certainly work to help the individuals who are facing these barriers, but the real impact of these stories is that they give us credibility with state agencies because they signal that we’re on the ground working with communities and helping individual recipients.

One recent success story is that, for the first time, we trained the call center staff at the Chicago Metro 211 hotline. We provided them with information about the new Medicaid redeterminations and the public health unwinding. They actually called us back two weeks later and said that an elderly woman who had been on Medicaid for years called them very upset. She didn’t know who to turn to because she showed up at her pharmacy and was told that she couldn’t pick up her prescription because her Medicaid had been terminated. It turned out that was due to not completing a redetermination – she never got the form. But because of the training and the outreach we do, the Chicago Metro 211 staff knew how to help. They advised her on how to request a reinstatement, and she was reinstated very quickly. She called back to thank them and they passed the story on to us. That was just an exciting way for us to see in real time what it means for us to not just gather these stories, but that our outreach and training really do help people.

Carrie Chapman: It is always great to get that positive feedback loop, which certainly doesn’t always happen. Nadeen, can you tell us more about what is working in Illinois?

Nadeen Israel: Sure thing, so I would say another thing that’s working well is the ex parte process. This is the process where, with the renewals of Medicaid, the State Medicaid agency checks data systems to verify eligibility and renew individuals without them having to do much. The idea behind this is that the state has access to a lot of electronic data, and the state should aim to minimize the burden on Medicaid recipients. In Illinois, we’ve been advocating for the ex parte issue since at least 2019, pushing for legislation and working with the State Medicaid agency to demonstrate its feasibility, especially for individuals with zero income. As a result, we believe Illinois was well positioned as the unwinding began, and particularly well positioned to support eligible people who come back as $0 income. The state is now achieving a 51% ex parte renewal rate, a significant improvement from the 25% to 35% rates in previous years. While it’s a huge win, there’s still opportunity for improvement.

Carrie Chapman: So I think one of the things that’s working well in Illinois, and Stephanie sort of alluded to this at the beginning, is that we really have an all-hands-on-deck strategy. I think it’s something we’ve done a really good job as a state of enlisting everybody to help in the process, and one of the key players in the Chicagoland area is the Chicago Public Schools.

The school system has long had a benefits enrollment unit because so many kids who are in the Chicago public school system are eligible for benefits like Medicaid, SNAP, and TANF. This unit has made a particular effort on Medicaid redetermination, doing a ton of communications with students and families. Beyond that, the school system has set up a call line so that folks who have questions about the redetermination process can actually call and get information about what to do next.

In Chicago Public Schools, we have somewhere in the ballpark of 300,000 students, so this program is touching a lot of families. This is a sophisticated benefits program, and because it existed pre-pandemic, they’ve really been able to understand the details of the program and to help people through the redetermination process.

So, I would say one lesson from us is to think outside the box about who can be helpers and messengers on this, who’s trusted, who touches the community regularly, and who has some natural experience with benefits programs because they are complicated, and giving advice and support to people is really difficult.

So, I think that wraps it up for an Illinois update. All three of us are always available to take questions from folks if you want to know what’s happening in Illinois, what things we’ve done well, and whether they might be workable in your state or how we’re dealing with challenges if the challenges are similar. You’re welcome to reach out to us, and NHeLP will have our contact information. It was great to talk to everybody, and I’ll see you guys on the flip side soon enough. Goodbye, everyone!

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