Incorporating Lived Experiences into Medicaid Advocacy: An Advocate’s Perspective

Incorporating Lived Experiences into Medicaid Advocacy: An Advocate’s Perspective

This blog is part of our Working Better Together series and was authored by Misaela Bailey, Story Collection Coordinator at the South Carolina Appleseed Legal 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 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.

Advocacy and policy work cannot be accomplished without including the lived understanding of individuals who are experiencing the service or program.  This is never truer than with the Medicaid program.  SC Appleseed has utilized the Medicaid Experiences project to support helping us understand the positive impacts Medicaid has had on families, but also to learn about the challenges families encounter with agency and provider issues that occur and impact their ability to get both services and sometimes maintain benefits.  In today’s blog, we share how our team has worked to turn stories from the field into advocacy and share some of the lessons learned from talking with South Carolinians over the past year.

Intentionally building storytelling into building relationships

We spent a lot of time in a rural part of our state called the Pee Dee region. Compared to other parts of our state, this region has a higher percentage of people of color and older residents and is one of the most economically depressed and medically vulnerable. Community members in this part of the state often travel 45 minutes or longer to the nearest hospital to get basic health care. These are the same barriers we recognize that influence people’s ability to engage and stay engaged in advocacy. People in these communities are constantly navigating barriers to accessing basic needs, so asking them to share their lived experience can be a challenge.

Still, despite the challenges of getting by day-to-day, people made time to share their personal experiences with us. We offered our time outside of regular business hours, meeting folks in their homes or where they could easily get to, and relied on trusted community members, leaders, and organizations for opportunities to connect with people about their lived experiences. We provided information and resource referrals when needed. We built relationships and began to make connections with the community as a whole.

We met a young mother in Marion County. She gave us a sense of the kinds of things she and others in the area deal with every day. For her family, Medicaid has meant she doesn’t have to delay health care for her children due to cost concerns.

…The rural areas, the Pee Dee area and stuff, there are not a lot of jobs and moneymakers. We don’t make the type of money they make in the Upstate. And there’s a lot of us. We are trying the best we can and it’s not enough. They don’t want to pay you enough, they don’t. You’re going to the job, killing yourself making $7.25. You can’t afford health insurance– You shouldn’t have to choose between your child’s health and somewhere to live, or transportation to get around, or the lights going off, or, you know, driving your car without car insurance. – Marion County Mother

In Eastover, we spoke with a single mother of two school-aged children who shared how Medicaid had a big impact on her family’s complicated health history.

I did four rounds of chemotherapy all of this was taken care of by Medicaid. Chemotherapy, I think, was over $35,000… There’s no way in the world that I could’ve paid for that, you know…

If it wasn’t for the Medicaid that he has I don’t know what we would have done in the situation. 

I would say that… especially in my situation… for one, Medicaid is almost like a savior you know, for my family. – Eastover mother

Building trust and rapport takes time. Persistence and commitment are key

While an initial conversation with people may feel like success, it’s the work that follows that is the hardest. The same underlying factors that drive health disparities and inequities are the same barriers that influence people’s ability to participate. Still, many of the members in these communities were willing to share their experiences. Some strategies that helped us:

  • Meeting people where they are. Many of our most engaged folks have been those we have met at in-person events like tabling events. While it’s time-consuming to attend in-person events, they have offered the greatest opportunities to connect one-on-one about their experiences.
  • Strengthening existing relationships and building new ones. Relationships with community-based organizations and trusted community leaders offer strong opportunities for identifying people with lived experiences willing to share.
  • Linking people with resources and following up. Because we do not provide individual case assistance, linking people to resources in the community and following up with them is an important gesture of reciprocity and care.
  • Relating to the person in some way, including being vulnerable with strangers. People must be comfortable prior to opening up and often that means relating with your interviewee on some level, whether it’s sharing something personal or sharing your motivation for doing this work.

Medicaid provides a lifeline for individuals and families

Many of the stories we have collected thus far have focused on the positive impact that the Medicaid program has had on them and their families. We continue to explore the many challenges that we may have learned during initial conversations more deeply with folks, but there were some broad issues that we can highlight thus far.

  • Access to dental services is needed. Many of the people we spoke to cannot access the dental services they need because Medicaid does not provide adult dental coverage. Outside of preventive care, people enrolled in Medicaid need additional coverage to cover services such as dentures. Younger or middle-aged adults enrolled in Medicaid expressed the need to access services beyond preventive care because by the time they access any kind of dental services their dental needs are beyond this level of service.
  • Applying for Medicaid is cumbersome and inaccessible for some. Some people reported being denied several times before becoming eligible. However, these folks did not understand why they were denied, and many only became eligible after pursuing the disability pathway. Many only learned about Medicaid, while seeking health care. This highlights a general lack of awareness of the Medicaid program to eligible individuals.
  • Access to Medicaid in a non-expansion state presents unique challenges. Several people we spoke to became eligible for Medicaid only after qualifying for disability. These same folks share their failed attempts to access the Medicaid program despite living with serious health issues such as cancer or other chronic diseases, which could have been detected if they were covered under expansion.
  • Stigma around Medicaid persists within low-income communities. Many talked about how the program continues to be labeled as a program for those who are lazy and don’t want to work by members of their own community. There is the sense that lack of health insurance is due to personal shortcomings instead of deeper systemic roots, highlighting the need to share these experiences within communities.

Lived Experience has been turned into advocacy for change and improvement

There is low awareness of benefits among Medicaid-enrolled individuals and their medical providers. Medicaid members often had difficulty explaining the type of coverage and benefits they had. There continue to be barriers placed by the Managed Care Organizations that often cause limited or loss of services. This is due to the lack of oversight by the state Medicaid agency. Through the information we are obtaining from beneficiaries we got the attention of our state agency made meaningful change to the process.

Our work cannot occur without the full participation of the community and beneficiaries.

SC Appleseed has always recognized that our work should not be done without the consultation of those with lived experience. Having the opportunity to intentionally collect and share these experiences has allowed us to tell a full and rich story of what the Medicaid program means in South Carolina. We have taken this information and used it to not only provide individual assistance, but more importantly to assist with systemic change. This could not be done without the stories and support of the community partners we work with.

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