This blog is part of our Working Better Together series and was authored by Maria Arguelles, Development and Communications Associate at the Atlanta Legal Aid Society. 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.
Over the past year, Atlanta Legal Aid has had the opportunity to connect with Medicaid applicants, enrollees, their families, and caregivers to hear their stories as part of the Medicaid Experiences Project. This initiative has deepened our connections with our clients, community, and local advocates in Georgia.
In 2022, we kicked off the project by working closely with our staff attorneys, who spoke to their clients and referred those who wanted to share their stories. Our attorneys’ expertise and community connections were and continue to be instrumental in identifying clients who have experienced Medicaid firsthand.
We also have visited various legal clinics for face-to-face interviews. This has given us a chance to connect with the community and offer guidance on Medicaid when needed. Our priority is to make sure that our community feels comfortable as they tell their stories, so we use different ways to communicate, like Zoom for virtual conversations, video recordings for testimonials, phone calls, and written submissions. Our interviewees can choose which way they prefer to share their experiences.
Through these stories, we have gained a better understanding of how Medicaid operates in Georgia from the perspective of the people who rely on it. In this blog, we want to share our interviewees’ insights on areas where they think improvements are urgently needed, as well as the heartwarming moments and successes within the Medicaid program.
Challenges Shared by Medicaid Beneficiaries
As they told their stories, almost all of our interviewees spoke about one of these three challenges: lack of information, reliable transportation services, and long waitlists for specialized care.
Lack of Information
Many beneficiaries recounted applying for Medicaid multiple times without success, only receiving approval after seeking assistance from advocates. They expressed the need for improved guidance and support for individuals navigating a complex application process.
Another challenge was the limited awareness of the full range of services offered by Medicaid. An interviewee said, “If you don’t dig or ask, you don’t get offered resources…like I didn’t know there was a Medicaid van to take you to your appointments.” Some only discovered crucial services through social workers or by word of mouth. To our interviewees, this lack of awareness highlighted the importance of comprehensive education about available resources to ensure that everyone would receive the care they deserve.
Interviewees told us that they had arrived at their medical appointments, only to be informed that their Medicaid coverage had ended. They pointed out that the absence of clear communication regarding coverage durations often left them in a state of uncertainty. Some beneficiaries were also concerned about the future of their coverage. They mentioned that it was ambiguous. For example, some interviewees were unsure about how specific life events, such as when their children reach certain ages, would impact their coverage. These beneficiaries believed that clearer guidelines around eligibility would reduce their anxiety and confusion.
Reliable (Medicaid-provided) Transportation Services
Many of our interviewees, who depended on these services, shared experiences of consistently late arrivals for appointments. Some even had to book transportation three hours before their scheduled appointments, only to encounter delays or, in some cases, no-shows. For some of them, these missed appointment times resulted in the loss of access to certain essential services.
Long Waitlists for Specialized Care
Some of our interviewees spoke about encountering long waitlists to access specialized care, such as Applied Behavior Analysis (ABA therapy) for children. This forced them to make difficult decisions about which essential services to prioritize. They expressed concern, saying that the extended wait times could potentially harm their children’s development, adding another emotional burden to their families.
Successes Shared by Medicaid Beneficiaries
While these challenges existed, Medicaid had undeniably been a lifeline for many. We heard stories of gratitude from beneficiaries who recognized that Medicaid gave them access to vital services, provided specific programs for their specific needs, and delivered exceptional care.
Access to Vital Services
Several beneficiaries voiced deep gratitude towards Medicaid, referring to it as a lifeline that granted access to critical services they would otherwise be unable to afford. For them, Medicaid was nothing short of a literal lifesaver, stepping in to cover critical healthcare expenses during their most vulnerable moments. As one of our interviewees shared, “I don’t know what we would have done without Medicaid. Our mom passed away last year, and I’m responsible for my sister, who is 15 years old. I can’t work because I have to be in the hospital with her, but at least I know that these expenses are paid for.”
Specific Programs for Specific Needs
Some beneficiaries also shared appreciation of Medicaid’s specific programs that were tailored to address specific needs, such as the Women’s Health Medicaid and the Katie Beckett Deeming Waiver. These programs had more flexible eligibility criteria, allowing more individuals to benefit from them. As one of our interviewees said, “It was great, it saved my life. I wouldn’t be here without the Women’s Health insurance. I could not have afforded it cause I did not have insurance, and at that point with cancer, nobody was going to give you insurance. It was an absolute lifesaver.”
Some interviewees praised the consistent standard of care that they received through the Medicaid program. They expressed their satisfaction with their healthcare providers and services. Notably, a handful of interviewees had never encountered any obstacles or challenges during their healthcare journey with Medicaid. They shared stories of seamless scheduling, requesting specific services, and completing a renewal process.
While every Medicaid story shared with us is unique, they all have common elements, whether it’s challenges, successes, or sometimes a mix of both. These stories have provided us with insights into both the effectiveness of the program and the many opportunities to improve Medicaid. They have also highlighted the program’s potential to offer accessible and high-quality care to a wide range of beneficiaries.
For our organization, collecting these stories has been a crucial step in gaining a better understanding of how Medicaid works from the perspective of our neighbors and community members. It has helped us identify areas where improvements are needed and has enabled us to better advocate for our community, breaking down barriers to Medicaid so that more people can access healthcare services deserve.
As we continue with our project, we are focusing on learning more about redeterminations through additional stories from people who are experiencing them. If you live in Georgia and would like to share your Medicaid story with us, please follow the link here. Thank you to everyone who has shared their story with us. Your experiences have been enlightening and continue to drive our advocacy efforts. Your voice matters!