East Tennessee Mother of Son with Complex Medical Needs Calls for TennCare Reform
- Annie Eby
- 3 days ago
- 3 min read
Alyssa Hickman and her husband live in East Tennessee with two beautiful children. Her 7-year-old son, Finley, has a smile that brightens the world. “He really is sunshine personified,” Alyssa shares. Finley loves music, running, playing with his sister, and all things Disney. He loves making silly faces in the mirror and then laughing at himself. “Everyone who knows him loves him,” she says.
Born prematurely at just 2 pounds, Finley has level 3 autism with global developmental delays, extensive GI needs, and is fully g-tube dependent. His kidney was a problem from birth. His medical care, without insurance, costs upwards of $20,000 a month.
In 2020, Finley’s kidney function started to decline. After a difficult ICU stay that included two months of hemodialysis, Finley received a life-saving kidney transplant in 2022.
In 2025, Alyssa received notice that Finley’s TennCare Medicaid was set to terminate: “Here we were, losing TennCare for our medically complex child who requires constant supervision and aid, including 40 hours of private duty nursing that TennCare themselves approved. How could TennCare say my child was complex enough for 40 hours of nursing and then remove him from the program providing his nurse?”
After reaching out to several lawyers without success, Alyssa connected with the Tennessee Justice Center: “They immediately leapt into action, filing appeals and starting the process for Katie Beckett with a goal of avoiding a lapse in coverage. I can honestly say, I would have been lost without our Client Advocate. Once TJC got involved, the process slowly progressed.”
TJC helped Alyssa's family apply for and ultimately enroll in the Katie Beckett Waiver, a Medicaid program that allows Tennessee children with significant medical needs to receive care at home rather than in an institutional setting. While the Katie Beckett Waiver provides critical support to families, its enrollment process lacks synchronization and uniformity. TJC helped Finley successfully secure a spot on the waitlist, allowing him to maintain coverage while he waited for an opening in the Katie Beckett program.
A year later, TJC received another call from Alyssa. She received notice that Finley was losing all Medicaid coverage and was not eligible for Katie Beckett Part A. TJC immediately stepped in once again to correct TennCare's error. Finley was ultimately enrolled in Katie Beckett Part A without experiencing any lapse in coverage.
In July 2026, Alyssa joined other Katie Beckett families in writing heartfelt letters to TennCare's General Counsel, urging the agency to reform the enrollment process so that children maintain uninterrupted coverage while their applications are under review: “We have fought at every corner for medical care and our son's right to life. This tiny baby required so much to live. But he did—he LIVED. He overcame all the odds. He requires extra help, though. Parents are doing our best for our complex children in a world with systems in place that are not in their favor. I beg you to make this process easier for families.”
We thank Alyssa for her continued advocacy and for speaking up on behalf of families across Tennessee. Her efforts are helping shine a light on the need for a more coordinated, reliable Katie Beckett enrollment process so children with complex medical needs can maintain the care they need and deserve.
