Carol Jean lives in Shelbyville with her 27-year-old daughter, Amanda, who goes by Mandy. Mandy was born in Murfreesboro with multiple handicaps. After she was born, she was rushed to Vanderbilt where she stayed for 3 and a half weeks. Her doctors did not know if she would live 6 months or a year. The only advice they gave Carol was to take her to a child development center. Carol has been the primary caregiver for her daughter Mandy and has watched Mandy grow. Mandy’s favorite activities include watching TV and scheduling activities. On the weekends, she likes to go to church and enjoys playing with children in her community.
When Mandy lost her TennCare coverage, her mother appealed because it did not make any sense. She reached out to the Tennessee Justice Center after being referred by the Arc of Tennessee and began working with Heavyn Jennings. Heavyn contacted TennCare and was told that the reason Mandy lost TennCare was due to an employee error and her services were restored. The whole process was very stressful for Ms. Jean and every time she called TennCare she was told something different which quickly became frustrating. She said she was given “the total run-around” by TennCare.
Mandy was getting 35 hours a week of home health care covered by TennCare before they wrongfully terminated her coverage. Ms. Jean paid out of pocket for Mandy’s care during the additional hours she was working and commuting. Thankfully, Ms. Jean has a great church community that has helped her pay for home health services, particularly when TennCare wrongfully took away Mandy’s coverage. Ms. Jean works over 40 hours a week as a detective in the Shelbyville Police Department. She has worked in law enforcement for almost 30 years and has been grateful for how her employer has been understanding and flexible in allowing her to leave work to care for her daughter when the home health aides have fallen through.
Right after Mandy’s long-term caregiver moved out of state, Ms. Jean was hospitalized with Covid-19 in November 2020. Ms. Jean has rheumatoid arthritis and was also in the hospital for joint replacements twice last year. Ms. Jean did not know what she would do when she was hospitalized, but Mandy’s stepbrother stepped in to help. He had fallen out of touch with Ms. Jean and Mandy until a few years ago. He took a week off work to come and take care of Mandy. This was his first time taking care of her. While in the hospital, Ms. Jean called Mandy’s ECF CHOICES case manager expressing concern that Mandy had no caregiver. Carol also contacted multiple home health agencies to find a caregiver, but it took three months to hear from them. Right before she heard from one of the agencies, Carol had found a caregiver through a friend at her church.
She found a dependable 74-year-old woman who was willing to care full-time for Mandy. Dependability is very important to Ms. Jean because she needs someone she can rely on to show up on time because she has to get to work. She described how in the past, Home Health agencies would call at 2:00 pm and say they didn’t have anyone else available for that day. Carol would have to leave work and get home by 2:30 pm to get Mandy off the bus. The new caregiver is very dependable, but given her age, Ms. Jean has found herself taking on additional tasks with Mandy such as bathing her after the caregiver leaves. With Mandy’s new, reliable caregiver, Ms. Jean shared that she has only been late to work once this year (and only 6 minutes!) because the caregiver accidentally locked her keys in the house.
Ms. Jean is an extremely hard worker and is sharing her experiences to bring awareness to how difficult it can be to secure sufficient and reliable services through TennCare even when you work hard and stay in constant communication with them. Carol notes, “I was told early on that mothers of special needs children have to fight for their children. You get some of the regular mom stuff but then you have a lot of fights that other moms don’t deal with”. Carol does not let anything stop her. Each time Carol has left the hospital, she has jumped right back into working for her community and caring for her daughter. If one person does not give her an answer, she tries another person. Carol’s dedication to her daughter and her community is inspiring as she continues time and time again to break down barriers and get the services Mandy needs to live a fulfilling life.
Photo Credit: Laurie Gibbs