Crystal Harp
Crystal Harp is a native Tennessean, wife, and mother of three wonderful girls. Crystal’s seven-year-old daughter Avalynn, affectionately known as Ava, has a rare form of epilepsy which causes frequent and prolonged seizures, sometimes lasting over five minutes. Ava has also been diagnosed with asthma, autism, and ADHD, and experiences developmental delays due to the same gene mutation that causes her seizures. Ava’s care needs include consulting cardiologists, neurologists, speech, occupational, and physical therapists, behavioral specialists, and pulmonologists. The dedicated mother that she is, Crystal has made it her mission to ensure Ava receives the best medical care possible no matter the obstacle.
In 2019, Crystal discovered Ava’s TennCare coverage was terminated. Panicked but out of options, she paid hundreds of dollars in out-of-pocket medical costs to ensure there was no interruption in Ava’s medical care. It was barely enough, and Crystal knew she could not keep paying those high medical bills. The notices she received from TennCare were confusing—she both had too much information and not enough. When the Houston County Health Department could not help her, they referred her to TJC.
With TJC’s help, Crystal learned that a TennCare system error led to vital information about Ava being mailed to the wrong address. For months, Crystal remained in the dark about what she needed to do to maintain Ava’s TennCare coverage and as a result, her coverage was terminated. TJC then worked with TennCare to correct Ava’s account information and ensure her TennCare was reinstated.
Understanding the unimaginable stress caused by TennCare’s system failure, in 2023 Crystal joined TJC in a lawsuit against TennCare to address this issue causing widespread harm to Tennessee families with Ava as the named plaintiff. The lawsuit is pending.
Crystal has leaned on TJC’s services and expertise since first becoming a client in 2019. There have been several instances of TennCare terminating Ava's coverage erroneously or for procedural reasons. At every point, Crystal has contacted TJC for help to ensure Ava does not have an interruption in coverage. With TJC’s help, Crystal has been able to respond to each TennCare decision and ensure Ava continued coverage where she is eligible.
Through each of these taxing moments, Crystal has learned to care for her whole self. She is an avid gym-goer and exercise is both her passion and way to manage her stress. She felt, growing up in rural Tennessee, that acknowledging mental health struggles was taboo, so Crystal never learned to process life’s challenges. Now, as a mother, Crystal says caring for her mental health and that of her children is one of the things that matters most.
Crystal’s experience with TennCare is just one part of how she fights for Ava’s care. One of the obstacles Crystal faces is in ensuring Ava receives the best education possible. For example, on Ava’s first day of elementary school, she could not join her classmates because none of the teachers completed the required staff seizure training course. This meant that, despite being enrolled, Ava could not start classes with other children. Crystal has tirelessly worked within her school system to get an education plan that ensures Ava’s needs are being met at school.
There is an understanding among mothers of children with disabilities that the public school system does not work for them. Many mothers, including Crystal, are put in the position of fighting for their children’s right to education because the state has failed to provide it adequately. These mothers already carry significant health care responsibilities daily; adding the burden of education obstacles only makes life harder.
Having lived through this reality, Crystal has become an advocate for other mothers who struggle to steer children with disabilities through the public school system. When other mothers in her community struggle to establish IEPs with their children’s schools, Crystal provides advice on an informal basis. She helps them navigate the public school system by answering questions, listening to others’ concerns, and directing people to the correct school office.
Caring for Ava amidst various institutional obstacles is challenging but also rewarding. Although most days, Crystal does not know how she will get through the upcoming challenges, she is prepared for anything that may come her way. Her love for her children makes her stronger than she ever thought possible.
TennCare’s complicated processes have frustrated Crystal and many other parents and caused fear and confusion. With TJC by her side, Crystal can continue to cut through red tape restricting Ava’s access to care. Crystal credits TJC with helping her move mountains for her children and empowering her with knowledge to navigate TennCare’s complicated rules so she can better advocate for Ava in the future.
Tennessee Justice Center is honored to recognize Crystal Harp as a 2024 Mother of the Year for her love and dedication to her daughter, Avalynn Carper, and for her courageous advocacy to improve programs and policies for all Tennesseans.
Photography by Elizabeth Blackstone
