This blog is part of our Working Better Together series and was authored by Shatari S. Dunmore, Story Collection Organizer at 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.
SC Appleseed Legal Justice Center firmly believes that healthcare advocacy cannot happen without listening to the voices of those who have experienced challenges with the system. It is why storytelling is a critical part of our work around improving and expanding the Medicaid program in South Carolina.
Over the past two years I have had the privilege to interview numerous people who had experience with being enrolled or attempting to enroll in the Medicaid Program. What I quickly found was that several suffered from a variety of administrative issues that interrupted their service. Some were a result of not responding or knowing how to respond to returning information. Other times it was due to misunderstanding what was being requested, or the inability to get in contact with the Medicaid agency within the required timeframe. It appeared as though people would sporadically lose their coverage without any warning. In some cases, the storyteller was able to get the issue resolved on their own, and in other cases we used our relationship with the Medicaid agency to notify them of the errors.
In this blog post, I will highlight three different storytellers that I encountered and share their experiences with eligibility, enrollment, and unwinding in South Carolina.
Struck With Unexplainable Coverage Loss [Keisha B., June 2023]
Keisha lives in Columbia, SC with her four children. She worked as a certified medical assistant from 2013 until Covid-19 hit in 2021. As a healthcare worker on the frontlines of the Covid-19 pandemic it was no surprise that she ended up contracting the virus not once, but twice. Unfortunately for Keisha, the virus resulted in ongoing health complications and since 2021 she has been in and out of the hospital for treatment. Medicaid was a great help during this time, covering the cost of her hospital expenses and numerous trips to the doctor. South Carolina was one of many states that utilized text-based messages to notify Medicaid members about their renewals. While hospitalized, Keisha received a text notifying her about her recertification form needing to be completed, but like many of us, she considered it spam. It wasn’t until she got home from the hospital a few weeks later and received a letter of termination that she realized her Medicaid coverage had been stopped because of failure to respond. Once she read the letter, she immediately contacted the Medicaid agency.
“When I got it [the letter], I was like, let me call these people and see what is going on. I said, ‘Well I have the recert’, and they told me to take it to your local office. ‘You should have it back on by Friday, call us back on Friday.’”
She said that after her phone conversation with the agency she took her filled out recertification form, and as promised she got her coverage back. Thankfully for Keisha, she received a swift response from the Medicaid agency and has not had any more issues. Unfortunately, for some people getting their coverage back was not as smooth.
Communication Challenges [Michelle J., February 2024]
Michelle lives in Columbia, South Carolina with her three children. I originally met Michelle in 2022, and reached out to follow up with her and make sure everything was still going well with her Medicaid coverage. To my surprise, she told me that when she tried to go to the doctor in January, she was told that she did not have coverage anymore. Her children’s coverage was unaffected, so she was unsure as to why she would not be covered.
“I received renewal letters, and I did everything that was done. I got my letter saying that I have Medicaid, my kids have Medicaid. I went to the doctor’s appointments, [and they were] like, we can’t find anything in the system. I said, ‘oh really?’ Because I did not receive anything to say, ‘hey, this is what’s going on, we need this information.’ I got an approval letter.”
She said that she tried calling the Medicaid agency multiple times, but the wait times were over an hour, so she was forced to give up. She was without coverage for a month, and although the doctor’s office she goes to offers a sliding fee scale, she was worried that if an emergency came up, she would just have to try and take care of the medical need at home due to tight finances. She told me about the problem she was having, and we immediately notified the Medicaid agency to ensure that her issues were resolved. We were told that Michelle’s case was “reviewed, updated, coverage provided, and a notice was sent.” As promised, she got her coverage back and was able to regain her peace of mind.
An Endless Search for Help [Kayla R., April 2024]
Kayla lives in Camden, South Carolina with her two children. She recently moved to South Carolina from Florida. She has a diagnosis of autism and dyslexia, and as a result has trouble understanding certain information. She made it very clear to me that when she left Florida, she made sure that her plan was canceled. She said that received confirmation, and even had a copy of a letter saying that her plan was terminated. When she moved to South Carolina two years ago, she said that she applied for Medicaid benefits, and from what she understood, she was covered.
However, she told me that, for the past year whenever she would try and get transportation to her doctor appointments, Medicaid would tell her that she was not eligible. She was confused, because she knew she had coverage, but when she called her Managed Care provider, they told her that she actually had two Medicaid plans. One in South Carolina, and another in Florida. When they told her that, she said that it is illegal to have Medicaid in two different states. She said that she would tell that to the agency, and the agency would tell her to reach out to her MCO, Humana. From there she got the runaround. Humana in South Carolina would tell her to contact Humana in Florida, and Humana in Florida would tell her to reach out to the Medicaid office in Florida, who would then tell her to contact South Carolina’s agency. It was very confusing.
“It would be different people I would speak to, never the same person. But the majority of them would say, well, I don’t know what’s going on, or I would speak to another set of people. And they would say well your case says you have two insurances, in two different states. And then we would go over another thing that [said] was not right [with my case]. And so, we would get sidetracked because they would spot something else. Even though I spoke to the higher ups of Medicaid to be able to catch that, I actually talked to the boss. She’s a female, and she said she would get it straightened up, right away. But I called back, and nothing changed.”
She said that every time she would contact the agency, they would make her feel as if she was being a nuisance to them, and they would not be patient with her. As a result, it made her feel disheartened and want to give up trying to have any communication with the agency. She said that not having Medicaid was difficult for many reasons: she needed assistance with getting to the doctor because she did not have transportation, she had health issues after giving birth to her then 4-month-old daughter, and she wanted to take advantage of the parenting classes that were offered through Medicaid. When we finished our conversation, I immediately asked her for her benefit information, so we could share it with the Medicaid agency. The agency did some research and saw that Kayla did have a plan in South Carolina, but she did not renew her coverage (this was due to moving to a new address) and made it a priority to reach out to her and get the issue resolved. As a result, Kayla and her children were reinstated with their coverage.
Despite the challenges that arose with the three storytellers I highlighted, there is a common theme: the cooperation of the Medicaid agency. This rang true for many other storytellers I spoke with over the years. Whenever we notified them of any issues people were having, they were certain to assist us in making sure that those things were resolved. The agency then entered into an agreement with SC Appleseed to assist with a project to improve their renewal forms. It is refreshing to know that if people we encounter have an issue – may it be with post-unwinding, their eligibility, or enrollment – we have cultivated a strong working relationship with the state Medicaid office that has resulted in positive, rapid action for beneficiaries. The renewal form project will also help future beneficiaries with better forms.
We are also thankful to our storytellers, who have helped identify issues that our office needed to be made aware of. It is our hope that through this working relationship between storytellers and the state DHHS that we can continue to keep improving the system and make sure that everyone can get the best healthcare possible day-in and day-out.
