Fighting for Ivy: How Legal Advocacy Helped a Family Navigate Medicaid Challenges

When Jasmine and her husband Thomas welcomed their daughter Ivy into the world, they knew their journey as parents would involve unique challenges. Ivy, now two years old, was born with complex medical needs, including a tracheostomy, ventilator dependence, and several rare conditions such as Beckwith-Wiedemann syndrome and hyperinsulinism. Despite these challenges, Jasmine and her family were determined to provide Ivy with the care and support she needed to thrive at home. However, navigating the Medicaid system to secure that care proved to be a daunting and uncertain process—until Chloe Atwater, an attorney with Kentucky Equal Justice Center, stepped in to help.

A System Overwhelmed with Challenges

Ivy spent the first eight months of her life in the NICU. During her time in the hospital, she qualified for Medicaid through a disability program, which covered her extensive medical expenses. But when Ivy was discharged, Jasmine and her family faced a new set of bureaucratic hurdles. To ensure Ivy's Medicaid coverage continued, Jasmine needed to transition her daughter to a Medicaid waiver program. This program would allow Ivy to remain at home with her family rather than face the devastating possibility of institutionalization.

The process, however, was riddled with delays and miscommunications. Jasmine learned that Ivy required an assessment to qualify for the waiver, but there were no contractors available in their county to conduct it. For months, Jasmine made countless phone calls, sent emails, and tried to navigate the complex web of Medicaid requirements. Despite her persistence, little progress was made. The family was left in limbo, fearing that Ivy's Medicaid coverage would expire, leaving them responsible for astronomical medical costs or forcing Ivy into institutional care.

Meanwhile, Jasmine juggled the demands of being Ivy's full-time caregiver. She had left her job as a social worker to manage Ivy's medical equipment, medications, appointments, and daily care. Each week, Jasmine spent hours coordinating with medical providers, all while providing round-the-clock care for her daughter.

A Call for Help

As the pressure mounted and the deadline for Ivy’s Medicaid renewal loomed, Jasmine and Thomas turned to social media, sharing their story in the hopes that someone might have advice or resources to help them. That post connected them with Chloe Atwater, an attorney at Kentucky Equal Justice Center who specializes in health justice. Chloe quickly became the advocate Jasmine and her family desperately needed.

Within a single 45-minute phone call, Chloe began unraveling the issues that had plagued Jasmine for months. But Medicaid waivers are complicated — recognizing that she needed help, she reached out to former KEJC Health Justice Attorney Cara Stewart, who helped clarify a critical issue. With this support, Chloe wrote a pivotal letter on the family’s behalf, leveraging her legal expertise to cut through the bureaucratic red tape. Chloe’s intervention revealed systemic miscommunication between state agencies and contractors, which had stalled Ivy’s waiver process. Her letter not only secured immediate action but also highlighted larger systemic issues within the Medicaid system.

The Impact of Advocacy

Thanks to Chloe’s swift action, Ivy’s Medicaid coverage was preserved, ensuring that her medical needs could continue to be met at home. Although the waiver process is still ongoing, Jasmine now feels a sense of stability and relief knowing that her daughter’s care is no longer in jeopardy.

Reflecting on the experience, Jasmine described Chloe as “like a medical law fairy godmother” who appeared at the family’s most desperate moment. Chloe’s advocacy not only resolved an urgent crisis but also underscored the importance of accessible legal assistance for families navigating complex healthcare systems.

A Call for Systemic Change

For Jasmine, the fight for Ivy’s care has illuminated broader issues within the Medicaid system. She emphasized that the number of children with complex medical needs, like Ivy, is growing due to advancements in medicine. However, the infrastructure to support these families has not kept pace. The disconnect between healthcare providers, equipment suppliers, and Medicaid creates unnecessary barriers for families who are simply trying to care for their children.

Jasmine hopes that sharing her story will lead to systemic improvements, so future families don’t have to endure the same struggles. “Children like Ivy can live happy, healthy, productive, thriving lives with proper support,” Jasmine says. “The system needs to better accommodate these increasingly common situations.”

Moving Forward

Ivy’s story is a testament to the resilience of families and the transformative power of legal advocacy. It also serves as a reminder that behind every policy and program are real people whose lives are profoundly affected by how those systems function—or fail to function. Thanks to Chloe’s help, Jasmine and her family can focus on what matters most: giving Ivy the love and support she needs to thrive.

As Jasmine puts it, “If telling our story can make this process better for even one family, then it’s worth it.”