Medicaid Lived Experiences

In 2020, the National Health Law Program, along with four other national organizations, began a project to monitor Medicaid experiences that were gathered directly from Medicaid applicants and enrollees. This project was premised on the belief that people with lived experiences have valuable insights to share with policymakers and state Medicaid officials about how crucial this program is and about the barriers that applicants face when they are trying to establish eligibility for Medicaid and when enrollees attempt to access needed supports and services. This project was designed to center the lived experiences from BIPOC and other underserved populations including immigrant, LGBTQ+, and persons with disabilities as these communities could give insight about the impact of systemic discrimination and underscore longstanding program issues that would resurface when states reinstated the Medicaid redetermination process after pandemic continuous coverage provisions ended.

This Medicaid Monitoring Project began when a health care crisis was wreaking havoc on the nation. Medicaid advocates had recently defeated Congressional efforts to severely cut and reshape Medicaid. Then the COVID 19 global pandemic erupted, a health crisis that laid bare health disparities throughout the U.S.

 

NHeLP leveraged its health law partnerships currently established in some 23 states and identified 8 states to work with to recruit storytellers and to capture their authentic lived experiences. State partners used a variety of outreach methods to recruit people with Medicaid lived experience: social media campaigns, printed flyers and mailings to community health centers and to faith-based organizations. However, the most successful recruitment occurred when trusted messengers gained the trust of communities through respectful human interaction.

The primary objective of this Medicaid Monitoring Project was to use Medicaid lived experiences to direct administrative advocacy to improve Medicaid. State partners were already working with NHeLP to challenge policies that weakened Medicaid such as work requirements and the public charge rule. Medicaid Monitoring allowed state advocates to develop advocacy priorities that were informed by the experiences of enrollees. Even more importantly, advocates began to help Medicaid enrollees to develop their own skills and expertise so that they could become skillful advocates for themselves.

In 2025, a Republican trifecta is shaping the federal agenda. Legislative proposals to overhaul Medicaid—including block grants, per capita caps, work requirements and other proposals to drastically cut funding and services—are regaining momentum. If enacted, these changes could severely undermine access to health care for millions of low-income individuals, families, and people with disabilities. Administrative actions by the second Trump administration could also impose restrictions on Medicaid enrollees by rewriting regulations and/or approving waivers restricting access. Now, more than ever, we need to capture the breadth and depth of the experiences of Medicaid enrollees. We need to hear, in their own words, why this crucial access to health care needs to be protected.


 

Arkansas

Read a selection of lived experiences from Arkansans collected by the team at Legal Aid of Arkansas.

Florida

Access a selection of stories from our partners Florida Health Justice Project.

Illinois

Watch the Storytellers for Change Showcase from AIDS Foundation Chicago.

North Carolina

Find the stories of North Caroline Medicaid enrollees here in a collection of experiences complied by Legal Aid of North Carolina.

Tennessee

Learn more about the Medicaid experiences in Tennessee in a series of written and video stories collected by Tennessee Justice Center. And find additional Medicaid stories here.


 

Working Better Together Blog Series

The Working Better Together blog series gives our Medicaid Monitoring partners a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work.

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