Health Access in America: How Literacy Impacts Equitable Outcomes

In Ecuador, I managed to get him the medical care he needed, but it left me thousands of dollars in debt. When I moved to the U.S., I believed and hoped we would find the healthcare and support we needed. 

Soon after arriving, I was promised health insurance by someone who turned out to be a scammer. They took more than $400 from me, pretending to help complete paperwork for my son’s insurance. For eight agonizing months, I tried contacting this person, but they disappeared, leaving us without health insurance and deeper in debt.

Thankfully, through someone I met, I heard about Make the Road New Jersey, a nonprofit organization empowering immigrant, working-class, and Latinx communities. I attended one of their healthcare enrollment events and shared my story. A healthcare enroller discovered and explained that my previous insurance application had been closed due to a lack of follow-up. They immediately took action, verifying my information and submitting a new application for my son, who is now 8 years old.

October is National Health Literacy Month, a time when I’m reminded how crucial it is for families to have access to clear, understandable health information. Without the support and guidance I received from Make the Road New Jersey, I would still be navigating a confusing and overwhelming system, unsure of how to get my son the care he needs. 

Health literacy isn’t just about reading information; it’s about understanding how to use that information to make decisions for ourselves and our families. Make the Road New Jersey didn’t just help me fill out forms; they gave me the tools and knowledge to advocate for my son’s health, ensuring he gets the care and dignity every person deserves. In less than a month, my son was approved to receive health insurance through the state’s Cover All Kids program, open to all New Jersey children regardless of immigration status. My son even received an orthopedic wheelchair, helping him move around. 

Through research, and not surprisingly, I found out that I am not alone. Nearly nine in 10 U.S. adults struggle to understand and use health information, according to the Center for Health Care Strategies. When people can’t fully understand the information they’re given, it only worsens health inequities, especially among people from immigrant or working-class backgrounds. My journey showed me just how important it is to have access to clear, reliable information. It’s what inspired me to become a member of the organization. Now, when I’m not taking my son to physical therapy appointments, I’m attending community meetings with other families in similar situations. 

One such family is a single mom, Mercedes, and her 6-year-old daughter, Diana. Last winter, Diana became severely ill, but without health insurance, Mercedes delayed seeking care. She tried applying for insurance but encountered obstacles on the forms. Diana’s condition worsened as she developed breathing issues, so Mercedes took her to a Newark health center that treats uninsured patients. While Diana recovered, the medical bills piled up. 

Mercedes, like many other parents, worries about how she’ll manage if her daughter gets sick again. Between jobs and, given requirements to complete the insurance application, Mercedes is receiving support from Make the Road New Jersey, which is providing advocacy and language interpretation services to ensure she can complete necessary forms. In similar situations, Make the Road New Jersey has even contacted the state’s Department of Human Services to explore NJ FamilyCare options. Cover All Kids is an important step for families, but we need to ensure all families have access to care. Adults, even with a green card, in New Jersey are currently excluded from NJ FamilyCare. 

Roughly 25 million Americans speak English “less than very well,” according to 2021 American Community Survey data. Every family deserves access to high-quality healthcare, no matter where they come from or what language they speak. At places like Make the Road New Jersey, families like mine now have the support we need to take control of our family’s health. It’s not just about healthcare — it’s about dignity, respect, and the right to live a healthy life. 

Carla Aguilar is an Elizabeth resident and member of Make the Road New Jersey.