NHeLP Expands “Medicaid Experiences” Project

NHeLP Expands “Medicaid Experiences” Project

Medicaid enrollees, their families/caregivers, and those seeking to enroll have unique and profound insights into the workings of the program. Advocates know that by understanding the lived experiences of enrollees, they can better advocate for policies that meet the health care needs of people on the ground.

That is why the National Health Law Program is excited to continue our “Improving Monitoring of Medicaid by Engaging People on the Ground about their Experiences with the Program” project. As we move into our second year, NHeLP and our partners are looking to hear the experiences of people experiencing systematic racism and inequities in the Medicaid program,  as well as the impact of the COVID-19 Public Health Emergency (PHE) unwinding.

The “Medicaid Experiences” project aims to help state-based advocates connect with and contextualize the experiences of people navigating the Medicaid program.

Medicaid is a profound force for good in this country. It provides one in five people in the U.S. with access to quality health care and is robustly designed to meet the unique needs of low-income individuals and families, as well as people with disabilities and pregnant people. Study after study shows that people with access to Medicaid have better health outcomes than the uninsured.

The Issues:

However, Medicaid is a complex system that the federal government jointly runs with each state. While the federal government sets general standards, this means all 50 states, the District of Columbia, and each territory manage their own programs that can differ with regards to eligibility and services. Additionally, Medicaid must adapt to new and evolving health care technology and treatments, as well as changing demographics. Taken together, this means that people can experience difficulty in enrolling in Medicaid, finding care, or accessing the services they need. Historic and systemic inequities in our health care system exacerbate these issues, especially in states with a history of underfunding the Medicaid program. And finally, while the U.S Department of Health and Human Services, which oversees Medicaid, is dedicated to collecting accurate health data, advocates know that this is often an incomplete snapshot of what is happening on the ground.

The Project:

The “Medicaid Experiences” project aims to provide support for state-based advocates to gather the experiences of people navigating the Medicaid system. While anecdotal, these stories allow advocates to identify gaps and barriers in real-time. With a better understanding of the conditions on the ground, advocates can envision and push for policies that best meet the needs of underserved individuals and families.

During the first year of the project, we partnered with advocates in seven states, focusing on collecting the experiences of people trying to navigate both the restrictive Medicaid policies implemented by the previous administration and the ongoing COVID pandemic. This year, we’re partnering with advocates in nine states and expanding our focus. We’re at a critical moment in time and looking to hear the stories of people experiencing systematic racism and inequities in the Medicaid program and the impact of the wind-down of the PHE.

Our Focus:

Fighting for health equity is a cornerstone of NHeLP’s work, and a racial equity lens, in particular, is built into all of our projects. But this is a unique opportunity to further health equity for Black, Indigenous and people of color in Medicaid. The past few years have revealed to the nation the desperate need to address systemic inequities, including in health care, and the Biden administration has pledged to implement policies that address these disparities. The lived experiences of people navigating the Medicaid system will provide state advocates and policymakers with information about where and how people encounter disparities in care. This work takes on particular urgency as reactionary politicians try to ban discussions of race and racism from public discourse.

The second issue we’re interested in is the impact of ending the COVID-19 PHE on Medicaid enrollment. Part of the PHE included a massive increase in state Medicaid funding on the condition that states could not disenroll people from Medicaid until the end of the emergency. This stipulation guaranteed that no one lost access to health care coverage during the pandemic. Once the PHE ends, states will move to re-determine eligibility of enrollees, which will result in a massive loss of Medicaid coverage. Millions of eligible people could lose coverage, and many more will have to navigate cumbersome re-enrollment processes. Connecting with Medicaid enrollees and getting this information in real-time will allow advocates to identify where people are losing coverage and figure out how to stop it.

We will be updating advocates about this project in the following months. We intend to lift up the work of our partners and center the voices of people navigating the Medicaid program. Their experiences, coupled with the legal and policy expertise of tireless advocates, will be invaluable in crafting policies that will reduce health care inequities and deliver better care for millions of people across the country.

For more information about the “Medicaid Experiences” project, don’t hesitate to get in touch with Senior Attorney Miriam Delaney Heard at [email protected].

Our Partners:


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