Using Medicaid Lived Experiences to Lean into Equity in Tennessee

Using Medicaid Lived Experiences to Lean into Equity in Tennessee

This blog is part of our Working Better Together series and was authored by Chanda Freeman, Health Policy Team Program Manager at the Tennessee Justice Center. This blog series is intended to provide our Health Law Partnerships 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 joint 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.

At TJC, we recognize that racism is foundational to the social and economic disparities that plague our nation. We also recognize that knowing the truths of our nation’s history, including the history of our state, is critical to understanding the current reality of racism. Our mission to achieve opportunity, security and dignity for all Tennesseans therefore demands that we contribute to overcoming the historical falsehoods, omissions and misunderstandings that shape racist policies and actions in the present. When we learned about NHeLP and RWJF’s Medicaid Experiences project to center lived experiences about the role that Medicaid is playing in ameliorating the impact of structural racism, identifying barriers to health care access, we knew that this project presented a unique opportunity.

Historically, the power of lived experiences to drive changes in health policy has been evident in various cases. In the 1960s, the civil rights movement was largely driven by the lived experiences of Black Americans. The stories of these people and their struggles helped to raise awareness of the injustices and unfair treatment that they faced and prompted policymakers to enact significant changes to address these issues. Similarly, the lived experiences of people with disabilities led to the passage of the Americans with Disabilities Act (ADA) in 1990. The ADA prohibits discrimination against individuals with disabilities and ensures that they have equal access to public spaces, transportation, and employment. These are powerful examples of stories driving positive changes in health policy.

Throughout history, Black individuals have been systematically excluded from the healthcare system, leading to widespread health disparities. Individual stories allow us to challenge the false narratives and stereotypes that have contributed to these inequities and demand the systemic changes necessary to achieve true health equity.

Working with Communities to Engage and Educate

In a world driven by data, facts, and figures, it is all too easy to overlook the one critical aspect at the heart of healthcare disparities – the human experience. The Tennessee Justice Center (TJC), recognizing the urgency to address health equity, took a bold step earlier this year by launching the Black Health Matters TN  initiative. The initiative seeks to frame health equity as a racial justice issue and to educate about the long-standing systemic barriers to care and other social determinants of health, as well as bias in the healthcare industry, that create worse health outcomes for Black people. We encourage people who have experienced health disparities or health inequities to share their lived experiences to educate people about these issues and provide them with tools to take action to fix the problems in our healthcare system.

TJC has achieved remarkable success in linking personal experiences to ongoing news and media reports. In recent times, we initiated a series of community screenings featuring the captivating documentary  “The Color of Care” , produced by Oprah Winfrey and the esteemed Smithsonian Institute. These screenings were followed by engaging panel discussions that incorporated a diverse range of perspectives from faith and clergy leaders, healthcare experts, college students, and individuals who have lived Medicaid experience. The film has garnered widespread attention, attracting hundreds of viewers throughout the state. This article aims to captivate readers with advanced degrees, offering them a glimpse into our impactful efforts.

Building New Partnerships

Building off that success, TJC collaborated with the Black Mental Health Village, Homeland Heart’s Black Midwives and Doulas, 200 Black Men Stand and other organizations to host activities during Black Maternal Health Week. The week’s activities also included a screening of the documentary Aftershock . The film witnesses the lived experiences of two families, reeling from the loss of loved ones, who become ardent activists in the maternal health space, seeking justice through legislation, medical accountability, community, and the power of art. Their work introduces a myriad of people including a growing brotherhood of surviving Black fathers, midwives and physicians who are collectively advocating for institutional reform. Through their collective journeys, the film shines light on a growing birth justice movement that is demanding systemic change within our medical system and government. Following the film, the audience participated in a robust conversation about their own stories and engaged in dialogue with medical professionals. Organizations joined forces to produce and promote a cobranded Toolkit to encourage community members to share their experience with maternal health disparities.

The collective efforts resulted led to the launch of a new coalition Black Men for Black Maternal Health with a primary focus on promoting health equity and reducing maternal morbidity rates in Tennessee. The organization firmly believes that Black Maternal Mortality is not solely a concern for Black mothers, but a problem that affects the entire Black family. They emphasize the importance of men being informed about and raising awareness of these injustices, not only during Black Maternal Health Week but beyond. The coalition is calling on policymakers to take action by investing in community-based solutions that address the underlying causes of maternal health disparities, including racism, poverty, and limited access to quality care.

Gathering lived experiences is just a start. The primary focus of this project is to marry lived experiences to bold advocacy. TJC has been able to do just that….

TJC also leverages lived experiences to further our advocacy efforts by sharing stories via our digital media platforms, utilizing story tellers at community events and trainings. For example, in January, foster care parents who reside in West TN contacted TJC concerning a contract dispute between the only Children’s Hospital System and the Managed Care Organization awarded the state contract to serve West TN residents. These parents contacted TJC to express concern because they were not notified about the contract dispute and only learned about it after they were contact by their current providers to let them know that their children were being transferred to new providers, many would be forced to travel more than 3 hours to see new providers.

The dispute posed a serious risk to all west Tennesseans on TennCare, but it added a particular strain on foster parents and their children who all required specialized care who were losing medical providers who they trusted and who were providing critical care to their children. The dispute also posed legal and moral threats to TennCare who bears the responsibility for ensuring that the medical needs of children on TennCare are met, including requiring that managed care contractors maintain a provider network that can meet children’s needs.

TJC collaborated with the Jackson Madison County Branch of the NAACP to host a press event to amplify the voices of foster parents whose children were directly impacted. Foster parents shared their concerns during the press event to raise awareness and to garner support for a resolution. Community members joined foster parents to issue a sign on letter and make a public plea to Governor Lee to use the power of his office to assist with negotiations. A local television station attended the event and featured a foster parent who shared their lived experience during the event. TJC also created this short video, Jackson Press Event 1-2023, to garner additional support across the state.

To the delight of all involved, the dispute was resolved less than a month later, and potential catastrophic consequences averted. We consider this a huge victory for both the caregivers who share their stories of elevated stress and concern for the children trusted to their care and the community and for community members who responded by joining this courageous group of caregivers who took a stand for vulnerable children in West TN.

Today,  1.7 million Tennesseans receive their coverage through Medicaid  firmly establishing Medicaid as a pillar of Tennessee’s health care system. Medicaid is a lifeline for millions of Americans, including TN resident Kevin who shared “TennCare has helped me pay for all my medical expenses so that I can remain working and living independently. I am only currently on TennCare due to the state of emergency regarding the COVID-19 pandemic which caused me to be reinstated after I lost my appeal to keep TennCare in early 2020. It’s daunting to worry about healthcare costs in addition to the health anxiety my illness causes me every day. I hope that TennCare can expand to help others as it has helped me over the past decade.”

Medicaid expansion is essential to ensure every American has quality, affordable health coverage.

Our state’s refusal to expand healthcare coverage to the over 300,000  people currently living in the coverage gap should not be ignored. Healthcare is a human right, and we must act now to ensure that affordability, race, and identity no longer bar Tennesseans from accessing adequate care. By coming together, sharing our stories, and demanding change, we can create a healthcare system that works better for everyone.



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