Williamson County Mother Joins in the Chorus for TennCare Reform After Six-Month Fight to Keep Daughter Covered

In January 2026, Nan Glenn from Williamson County reached out to the Tennessee Justice Center (TJC) for help with her daughter’s TennCare renewal. Her daughter, like all little kids, is a happy, joyful little girl who loves music and dance. She lives with multiple complex medical conditions, including Sotos syndrome and a congenital heart defect. Her medical journey has been long and complicated, requiring care from numerous specialists. She receives 60 hours of highly specialized private duty nursing each week.

Pictured: Nan's daughter

TJC helped Nan's daughter 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. Under the current system, children are not guaranteed continued Medicaid coverage while their Katie Beckett application is pending. As a result, families often find themselves navigating a complex maze of applications, appeals, continuances, and legal deadlines simply to prevent interruptions in essential health coverage. Nan's case remained open with the Tennessee Justice Center for half a year.

Over the course of six months, TennCare made a series of errors that TJC corrected.

Reflecting on their experience, Nan shared: "The lack of knowledge and misinformation we've experienced from some of the representatives is incredibly disheartening. I can't imagine the amount of frustration many families feel trying to navigate this whole process without an advocate like the Tennessee Justice Center in their corner. TJC's help was invaluable in navigating a confusing and convoluted process."

After her daughter's enrollment was finally secured, Nan joined in the chorus of 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. In her letter, she candidly describes the joy, fear, hope, exhaustion, strength, vulnerability, gratitude, and frustration that come with raising a child with complex medical needs. She calls for "a system that would ensure continued medical coverage without the necessity of appeals," explaining that such a change "would alleviate hardship and sleepless nights for families that are all too often stretched to capacity."

On July 16, 2026, the Tennessee Justice Center presented these powerful letters to the Division of TennCare during a public forum, working toward our continued efforts to improve child health outcomes in the state of Tennessee.

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Letter to General Counsel

July 7, 2026

Lindsey Wagner                                                                                       

Division of TennCare 

310 Great Circle Rd

Nashville, TN 37243 

Dear Ms. Wagner:

While I was still in my hospital bed recovering, I was awakened by a phone call from my daughter’s NICU nurse. The call came from just a couple of floors away, to inform me that a cardiologist was at my daughter’s bedside performing an echocardiogram due to a concerning murmur. My husband and I immediately made our way to the NICU, me in a wheelchair with a fresh cesarean incision. As we rounded the corner to my daughter’s incubator, I’ll never forget the concerned faces of the cardiologist and nurse as they stared at her echo images.  We learned that not only did my daughter have a cardiac defect that would soon require open heart surgery, but she would also be diagnosed with a slew of other conditions. The realization became clear that this would not be a quick NICU stay for us as a family. And as her NICU stay progressed, we began to realize that our daughter’s medical journey would be lifelong. The neonatologists within her care could not rely on their usual algorithm used to treat a typical “preemie.” Our daughter was an outlier. Her complexities demand thinking outside the box and a unique tailored plan of care. Her medical journey has been complex, involving many providers.  Her presentations are often perplexing, and as her parent, I often find myself anxious about what direction her needs will take us next.

Pictured: Nan's daughter in the NICU

I think back on that first day of my daughter’s life, as it was also my first day as a mother. Not only was I overwhelmed with the thought of learning HOW to be a mother, but also with the thought of mothering a critically ill, complex special needs child. The contrast of all my emotions, I still process to this day. How can one person feel so many conflicting emotions all at once? Joy, fear, elation, overwhelm, strength, weakness, gratefulness, frustration; I carry them everywhere, all while trying to be the best advocate that I can be. I often feel like our lives are in this delicate balance and the smallest shift has the potential to throw our world off kilter, like a house of cards. If ever this delicate balance gets compromised, I’m flooded with all the same conflicting emotions that I experienced on day one of motherhood. What I’ve learned through the years is that I am not alone in feeling this way as a special needs parent.

After receiving notification that our daughter was losing Tenncare, I was immediately terrified that she would be left without coverage, which would undoubtedly be detrimental to her health. My big fear was that a gap in coverage would occur between the time of her TennCare termination and Katie Beckett determination. After extended phone calls on more than one occasion with TennCare representatives, it became apparent that many representatives aren’t well educated about the program (or the program lacked synchronization and uniformity to get straight and simple answers). After each phone call, I found myself more and more confused with my questions remaining unanswered. The application process is complicated, and without guidance it is easy to feel lost. I reached out to the Tennessee Justice Center, who were incredibly helpful in walking me through this process. They helped educate me about the program, as well as expected timelines in the determination process. Just this information alone helped to alleviate some of the uncertainty. They also advocated on our behalf, filing appeals and fighting for continued coverage as our Katie Beckett paperwork was being processed. During this stressful, unsettling period, I couldn’t help but think about the families that do not have advocates in their corner helping them navigate this system. A system that would ensure continued medical coverage without the necessity of appeals would alleviate hardship and sleepless nights for families that are all too often stretched to capacity. 

I am so grateful that a program like Katie Beckett exists in the State of Tennessee. The coverage and services provided within the program will most definitely help keep my daughter healthy, safe, and contribute to her continued development. Simple policy changes within the system can help make the enrollment process simpler and less stressful for families like mine across Tennessee.

Sincerely,

Nan Glenn, Williamson County