TJC Story Blog

Mar 2021


Kelly lives in Medina, Tennessee with her younger brother, John. Their parents passed away in 2019 and Kelly became John’s guardian. They were living in Illinois at the time and John had a very difficult time with the loss of his parents. He did not understand his parents’ death and thought that their house was haunted. Kelly’s parents had told her that he was mildly intellectually disabled. She now thinks her parents may have tried to hide the severity of his disability. Kelly decided it would be best for her and her brother to move, so she asked him where he wanted to move. She had originally wanted to move to a beach, but John was afraid of water so he decided he wanted to move to Tennessee.

Two weeks after moving to Tennessee, there was an incident where John ended up stabbing Kelly’s husband. Kelly’s husband did not want to press charges, but John was taken to jail and Kelly’s husband was sent to a medical center. The jail did not understand John or know what to do with him. He was professionally evaluated and Kelly was asked to find a lot of documentation about John. John and Kelly’s parents had boxes and boxes of papers when they passed away. When Kelly started going through them, she found some letters from John’s school when he was a student. The letters were to John’s parents, recommending that John get tested for autism. Kelly said that her parents ignored these letters. The evaluator seemed to really understand John and explained that the move likely really stressed John out. She explained how a move can be stressful for anyone, but for someone with autism the stresses could be heightened, which may have led to John acting violently.

Kelly had been working to get her brother health insurance since they moved to Tennessee and kept running into red tape. Her brother had lived in Illinois, Iowa, and Wisconsin previously and he had never had any trouble with Medicaid in any of those states. She first applied for John in June of 2020, and he was denied. He was then sent to jail and TJC’s Emily Brown Baker, who Kelly was working with, explained that he wouldn’t be eligible for Medicaid while he was in jail. Once John got out of jail, Kelly started applying for him again. She tried applying for him in both SSI categories that were options on the application and he kept getting denied. She then learned that a few months before her mother died, John became categorized as a Disabled Adult Child based on his mother’s Social Security benefits. Kelly does not remember Disabled Adult Child even being an option on the TennCare applications that she completed for her brother.

Kelly reached out to TJC who was able to help get John approved for TennCare in the Disabled Adult Child category by writing a letter to TennCare. She says that if she had to go through the process alone, there was no way he would have gotten approved for coverage. She kept wondering if she was filling things out wrong because TennCare kept missing that he was eligible in the Disabled Adult Child Category. Her brother went months without medication that he desperately needed because they thought TennCare was needed to cover his medications.

Once John was approved for TennCare, he received a pharmacy card in the mail. Kelly tried to pick up his medications at the pharmacy with his new card and was told that the card was inactive. She tried calling TennCare, and they refused to speak to her because, although she is John’s legal guardian, she was not his authorized representative in their system. She eventually called SHIP and was told that John has prescription coverage through Medicare. She had not known this since she had never found John’s Medicare card. She was finally able to pick up his medications with his Medicare number, but she is frustrated that TennCare would send her brother an inactive pharmacy card.

Kelly describes her experience navigating TennCare for her brother as, “so much red tape and very little information.” The TennCare application process did not seem prepared to screen someone as being a Disabled Adult Child, which left Kelly confused and wondering if she was doing something wrong. Kelly wants to share her story so that others will hopefully not have to go through so much red tape to get care for their loved ones.