I'm Raising Four Grandchildren but I Can't Get Coverage

Niadu is a hardworking grandmother in Riverview, Florida who describes herself plainly and confidently. “I’m 51,” she declares, “proud 51.” Niadu recently became the full-time caregiver of her four grandchildren after they lost both of their parents in a tragic event. She has had to leave full-time employment to care for them, which has profoundly affected her financial stability and access to healthcare. 

Niadu is now navigating multiple systems for her grandchildren: Medicaid, county health plans, childcare, and special education services. She balances all this while managing her own serious health needs, including medications she needs to function. She explains, “I have a stent in my heart, so I'm on medications. I'm like, ‘Well, I still got four grandkids to take care of, so I’ve got to find a way to take care of myself so that I can take care of them.’” Niadu’s ability to care for her children is directly tied to her ability to access her own healthcare. 

A few months ago, Niadu lost that access when her Medicaid coverage was terminated. “That one was devastating,” she remembers. “The major concern was getting ready to lose my Medicaid. . . And I'm also afraid that the grandkids may also lose theirs. . . "  

Niadu is now left without coverage and with a fraction of her previous income. She is often overwhelmed at “just the difficulty surrounding being a grandparent, having to leave a full-time job and raise four grandkids with limited assistance. . . It's just been an eye opener to see what is not in place for kinship care families and caregivers. We’re grandparents who are stepping in and parenting again.” When sharing about these challenges, Niadu has at times been met with criticism and lack of empathy. She recalls being told, both implicitly and explicitly, that she should simply work more. One agency representative even suggested that her grandchildren stay home alone: “The young lady from the health care plan said, ‘Well, could the kids just stay at home while you're at work?’ I said, ‘Well all three have developmental delays. They're eight and nine. Would you leave three children at home for hours by themselves? No.’” 

In addition to living with financial strain, Niadu’s experience with Medicaid places a heavy administrative burden on her. She has received repeated requests for documentation that force her to relive the trauma of losing her daughter and son-in-law. “When I applied for Medicaid and I put down that I’m the legal guardian. Parents are deceased. I still got a letter saying that they need to get child support from the dad. And I was like, ‘No, let me call the courts get the death certificate. . .They do not have parents’. . . It's like, reliving the trauma from the first day it happened.”  

The administrative demands of maintaining her grandkids’ healthcare plans are extensive and ongoing. After submitting all the necessary documentation, Niadu has been asked to submit the same paperwork again. “It's like I'm starting all over again.”  

The struggle to get support and maintain coverage, she says, feels like “a never-ending cycle.” Unfortunately, Niadu's story represents just one example of the thousands of Floridians who fall through the cracks of Florida's health care system--a system meant to provide support to those going through unforeseen events and periods of strain.

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