This blog is part of our Working Better Together series and was authored by Rebekah Garcia and Brian P. Hogan at Legal Aid of North Carolina. This blog series is intended to provide our 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.
Legal Service Corporation (LSC)-funded civil legal organizations, like Legal Aid of North Carolina (Legal Aid NC), are lauded for their unwavering dedication to representing the most vulnerable in society. Spanning all 100 counties of North Carolina, from the Smoky Mountains to the Outer Banks, Legal Aid of NC’s team of expert advocates address the critical civil legal challenges faced by low-income families and individuals who face systemic barriers in accessing healthcare, income supports and employment, affordable and safe housing, and economic security.
Historically, our focus was on sharing client stories as anecdotal supplements to the quantitative metrics that showcased our impact. However, amid the representation numbers, win-loss ratios, and data-driven metrics, we have come to recognize the power and significance of centering our client’s lived experience in the construction of the meaning of our work and elevating the voices of the community members that we serve. Their stories illuminate the structural challenges that impede North Carolinians from achieving health equity. These narratives should lead and shape our legal strategies. It is a realization that while not new, emphasizes the essence of our mission. Incorporating lived experiences is pivotal to our growth and direction, allowing us to focus our limited resources in a client-directed manner, rather than top-down through a hierarchical relationship.
As we initiated the collection of lived experiences for the Medicaid Experiences Project, we anticipated exploring the stories of individuals with Medicaid experience would end there. Yet, we soon realized that client-centered story collection should be integrated into every aspect of our work. We believe that more LSC-funded organizations should begin making lived experience and client-centered story collection a core tenant of their work. Based on the findings of the Project Learning Team and conversations with our partners at the National Health Law Program, we recently conducted a firmwide presentation for 400 plus staff at Legal Aid NC to introduce them to our Medicaid Lived Experience Project. We sought to teach our advocates how to incorporate lived experience projects across all of our firm’s practice groups, which range from housing law, consumer law, and domestic violence advocacy. We’re eager to share these resources, hoping other LSC-funded organizations might also benefit.
When we embarked on this project, we had a theoretical understanding of how lived experiences could provide a novel means of conveying information about the North Carolina Medicaid system, but didn’t appreciate its impact. We are in a critical moment for addressing health access and health equity for all North Carolinians. On July 1, 2021, during the middle of the COVID-19 Public Health Emergency, North Carolina shifted 1.7 million Medicaid members into a Medicaid Managed Care system. This was a significant change. Following forty other States, North Carolina shifted its delivery of healthcare system to a capitated payment model, where the State now contracts with five private insurance companies (Prepaid Health Plans), and pays them a predetermined rate per enrolled person to provide all Medicaid-covered services. This “transformation” phase introduced confusion and uncertainty for many North Carolinians accustomed to years of a fee-for-service Medicaid delivery system. Some Medicaid members were no longer able to see the family doctor that they had seen for years, had to find new specialists, were unable to fill prescriptions due to data errors, and struggled with getting to medical appointments due to non-emergency medical transportation (NEMT) failures under the new system. Knowing that North Carolinians would need assistance during this transition, the North Carolina Department of Health and Human Services had the foresight to create an innovative, first-of-its-kind, Medicaid Ombudsman Program to help North Carolinians with education, advocacy, referrals, and trend monitoring. Legal Aid of NC has received hundreds of legal referrals directly from the Ombudsman when Medicaid members needed assistance at Fair Hearings for Medicaid Managed Care service denials and other issues. Many of these legal referrals also decided to share their lived experiences with Legal Aid for this project.
Amid this complicated transition to Managed Care, the continuous coverage protections of the Families First Coronavirus Response Act were lifted on April 1, 2023, jeopardizing access to health care for approximately 300,000 North Carolinians in the coming year. As we have seen in other States during the “unwinding,” tens of thousands of North Carolinians are losing their Medicaid due to procedural reasons, not determinations on eligibility merits. Remarkably, within the same week that the continuous coverage protections were lifted, North Carolina enacted Medicaid Expansion into law, becoming the 41st state to do so. As if all these simultaneous changes were not enough, the most remarkable of them all is that North Carolina is also in the midst of a grand experiment to ‘radically reinvent’ Medicaid service delivery by using Medicaid services to address social drivers of health through a Section 1115 Waiver called the Healthy Opportunities Pilot Project. Confusion, heartbreak, and innovation are all colliding at once in North Carolina. We are at a crossroads for addressing health equity. These pivotal events form the backdrop against which our work unfolds, and they underscore the critical importance of collecting and sharing the lived experiences of those navigating this ever-evolving Medicaid landscape.
It was only when we began sharing our first stories that we truly grasped the profound impact of hearing these narratives directly. As we shared these stories with our internal staff, the power of these narratives became strikingly apparent. Colleagues from across the state reached out, expressing how deeply moved they were, administrative offices inquired about replicating our efforts, and requests for training on story collection began pouring in. The lived experiences we gathered from individuals with Medicaid experience were having a direct and transformative impact on our organization and our mission. We invite you to listen to some of these stories here: listen to Esther’s life-changing experience with Medicaid, and listen to Katherine’s struggles to receive necessary care for her children. We look forward to elevating the stories of more North Carolinians as this project develops and deepening our impact, guided by these voices.