Diane’s daughter, Rebekah, has Cerebral Palsy and mental retardation. She is fed by a tube and requires constant care from her parents and a nurse. Despite her disabilities, Rebekah is a vibrant young lady who enjoys music and being around people. But, Rebekah became in danger of entering a nursing home when TennCare suddenly denied her nursing services. It was impossible for Diane to care for Rebekah and her other two children without help. So, Diane contacted TJC, and we intervened on the family’s behalf. A few days later, Rebekah’s nursing was approved. “It seems like each month brings a new problem in obtaining health care services for our children,” said Diane. “I know that other families with special needs children are facing the same problems. It is difficult, but I must persevere in this battle for my own children and for other TennCare children.”
Hope and her family fled New Orleans to escape Hurricane Katrina. Soon after settling in Memphis, she faced another storm: the long and complicated process of finding care for her son Justin, who suffers from mental retardation, Cerebral Palsy, and seizures. In Louisiana, Justin had a nurse who cared for him while his mother worked. But in Tennessee, she could not even find a primary care physician to prescribe the care that was medically necessary for her son. Unable to work because Justin needed care, she supported her family with money from the Federal Emergency Management Agency (FEMA). When the FEMA payments ended, Hope contacted TJC. We helped get Justin a case manager, who found him a primary care physician. The physician prescribed nursing for Justin, and Hope was able to return to work. “I am so grateful,” said Hope. “TJC helped us begin to put our lives back together.”
Sadiatou’s daughter Binta, age 11, requires total care. She is blind. She cannot walk or talk, and has at least five seizures each day. So, her doctor prescribed nursing services. Sadiatou has had to fight to keep Binta’s nursing. “It has been hard, but I keep going for Binta and for other children who need help. I thank TJC for all that they’ve done for my daughter, from the bottom of my heart!” said Sadiatou. When TennCare changed the rules under which families can get home health services, Sadiatou spoke out. Her story was featured in the Tennessean. She put a human face on the short sighted policy that would mean devastation for not only her family, but for hundreds of families across the state. She said the policy was wrong and it had to change. It hasn’t changed yet, but Sadiatou will keep fighting for Binta and other TennCare children. Sadiatou shares her family’s story so that the 670,000 children on TennCare can benefit from lessons learned and victories won in her struggle to provide her child with necessary care.
Linda has welcomed over 25 special needs foster children into her home over the years. She adopted four of the children. TennCare repeatedly denied medical services and equipment that Linda’s children needed. Linda contacted TJC about her year-long struggle to obtain wheelchairs for her children. She agreed to let several of her children be plaintiffs in a class action lawsuit, John B. v. Goetz, which helped children across Tennessee get the health care they need and to which they have a right. Linda’s adopted daughter, Megan, has Cerebral Palsy and is a quadriplegic. When she had trouble obtaining a communication device she needed to attend college, Linda contacted TJC again. With the help of a pro bonoattorney, Megan got her communications device and was able to attend MTSU. Children across the state have more hope thanks to Linda’s perseverance.
When Laura’s stepson, Ashton, lost his mother to a blood disorder, Laura started taking care of him. When Laura was diagnosed with cancer, she feared that Ashton might lose two mothers to disease. Laura was one of the 170,000 who lost TennCare, making her unable to get the regular checkups she needs to stay healthy and cancer-free. She has to live with the daily threat of cancer while continuing to raise her young stepson. TJC helped Laura navigate the limited services still available to her. We were struck by how, despite her poor health, Laura remained focused on the welfare of her child. “TJC has been such a help. Sometimes I’ll get a call – out of the blue – from an advocate checking in to see how I’m doing,” said Laura. “TJC has been wonderful.”
Sally’s daughter Stacy was born with a rare illness that required half of her brain to be removed. Stacey was placed in an acute care facility, which threatened to discharge her without appropriate transition services. Sally recognized that transitional services were necessary to her daughter’s well-being, so she contacted TJC for help. “Stacy is my life,” said Sally. TJC filed appeals on behalf of Sally and Stacy. As a result, Stacy received the specialized brain injury treatment to which she had a legal right.