This blog is part of our Working Better Together series and was written by Nadeen Israel, Senior Vice President of Policy and Advocacy at AIDS Foundation Chicago, Carrie Chapman, Senior Director of Policy and Advocacy at Legal Council for Health Justice, and Stephanie Altman, Director of Healthcare Justice at the Shriver Center on Poverty Law. 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.
The Illinois Medicaid Monitoring Project partners continued collecting stories from people with experience in the Medicaid program during the third year of the project. We also increasingly looked for opportunities to build ongoing relationships with community members who tell their stories through organizational and state agency advisory councils. These relationships have led to opportunities for impacted people to advocate for themselves and their communities directly with decision-makers. We also built relationships with community members and leaders to inform our advocacy and, most importantly, partner with impacted people to address Medicaid challenges and find policy solutions.
We have intentionally built opportunities for continued relationships and advocacy through storytelling showcase events, community advisory boards, nominations to state agency advisory committees, and community councils. As a result, people who have Medicaid experience have received advocacy and storytelling trainings and been included in a variety of policy settings including testifying at legislative hearings, joining government advisory boards, engaging in organizational strategic planning, and speaking at media events.
In partnership with the Legal Council for Health Justice and other IL Medicaid advocacy organizations, AIDS Foundation Chicago (AFC) supported a small cohort of people with Medicaid experience (4 storytellers) in participating in six, 2-hr long storytelling trainings. The trainings focused on choosing and building out one story the Medicaid members wanted to tell, specific to their experience with the Medicaid program in obtaining specialty care services, including behavioral health and oral health services. The storytelling trainings culminated in a storytelling showcase on July 10, 2024, where the four storytellers shared their 5-6 minute stories before a virtual audience of community members, providers, Medicaid advocates and at least two IL Medicaid agency leadership-level staff in the audience. Shortly after the storytelling showcase, one of the Medicaid members was invited to participate in a state Medicaid taskforce to advice on policies and practices for reaching out to people in institutional care settings, to ensure they know their options and have assistance in transitioning out of institutional care into the community (with supports).
A second opportunity also presented itself for two of the four storytellers to share their experiences in obtaining behavioral health services while on IL Medicaid, as part of a project the state Medicaid agency is working on. The project is focused on identifying contract language changes specific to behavioral health services within IL Medicaid managed care contracts, since the IL Medicaid managed care contract is up for rebid in 2025. A third advocacy opportunity is coming up where we’re partnering with the storytellers to prepare them to share their experiences with Medicaid Managed Care in IL, as part of listening sessions the IL Medicaid agency is currently hosting. These listening sessions are also part of the IL Medicaid agency’s preparations for the Medicaid managed care contract rebid in 2025. And a fourth opportunity has presented itself for the storytellers due to the CMS final rule which was released earlier this year in April, that included the need for each state to create a Beneficiary Advisory Committee (BAC). The Medicaid storytellers, AIDS Foundation Chicago, Legal Council for Health Justice and other Medicaid advocacy organizations will strategically outreach to the IL Medicaid agency to partner in the process of setting up the BAC in IL.
Shriver Center recruited a Community Advisory Board member who was on Medicaid and is now working at a FQHC as a community liaison. She told her own story as well as helped us to collect many other stories of people on Medicaid over the past three years. She is also a personal attendant for her partner funded under the Illinois DORS disability home and community-based waiver program. She works at the IMAN Center which is on the southwest side of Chicago and works primarily with a community of Black residents as well as Arab-American and Muslim immigrants, many of whom speak Arabic and languages other than English as a first language. She has gathered multiple stories on the barriers that people on Medicaid face renewing their Medicaid, gaining access to services, and finding providers from her community patients. The Medicaid agency asked community providers and members to provide feedback on the messaging and communications materials on the Public Health Emergency Unwinding. Donica commented on and helped to develop these materials for outreach and education in multiple languages informed by her experience. She has also worked as a COVID vaccine navigator in her community. Her partner has had multiple issues accessing necessary services and supports. Most recently, she contacted us to help her advocate with the Medicaid managed care company for installation of a ramp in her partner’s home to allow him to use his wheelchair and get to doctor’s appointments. The waiver staff were not being helpful, and we helped connect her to a MCO care coordinator. She then advocated for herself and for her partner to get services covered.
We are very pleased that some of the Shriver Center Community Advisory Board members as well as others we have gathered stories from have advocated on their own behalf and in their community for better access to care. They have worked on issues including access to home and community-based services and prescription drugs. For example, some storytellers attended and spoke at various legislative hearings, media, and town halls on the Healthcare Protection Act which included provisions to prohibit step therapy in Medicaid, which restricts access to medically necessary prescription drugs.
As mentioned earlier by our organizational colleagues, in a positive step, Illinois Medicaid is currently hosting public listening sessions around our managed care contract rebidding process. The agency is explicitly requesting input from Medicaid members and not merely from advocates. The is a wonderful step but highlights the bridge that we still need to build to span members and state staff. Our experience with engaging on lived experience encouraged us that members have insightful and concrete concerns and ideas for Medicaid, particularly related to access to specialty care and care for people with disabilities, but they feel very new to engaging with the agency directly as a thought partner and the complexity of the program itself seems to feel like a barrier. Our efforts in the storytelling showcase show the value of (1) involve Medicaid members right from the outset to feel confident in the value of their contributions, (2) mutual skill-sharing as a group about engagement with state staff and about how the program works, (3) consistent meetings to build trust, knowledge, and relationships, and (4) positive feedback for members on their efforts. Without these pieces we expect that many of the members we have worked with would likely not have considered engaging in the listening session process, or even have known about it.
In this amazing moment where Medicaid is (either willingly or under new federal rules) seeking community input as never before, our work on this project helped us confirm that the bridge will not just magically appear. We all must build it. Advocates and community members can work together through mutual relationship and skill building to ensure that everyone feels ready to engage with Medicaid about their compliments and concerns. And likewise, in what is a key next step for us in Illinois, state agencies have to learn more about how to open a meaningful dialogue with members and to reciprocate the openness which members bravely bring to that dialogue.
