A near drowning accident caused Rebecca to become a quadriplegic at age three. She cannot walk, breathes with the help of a tracheotomy, and is fed by a tube.
Rebecca needs help clearing her throat and lungs, which could easily cause her to get pneumonia and have to be hospitalized. For more than a year and a half, Rebecca was hospital-free because she used “the Vest,” a machine that clears her lungs and prevents choking and infections. But last fall, TennCare told the family they were going to take the Vest away. The family called TJC, and we helped them get ready for the hearing. They proved to the judge that it would be cheaper for TennCare and better for Rebecca to keep the Vest, so the judge ordered it. Ms. Winford said, “With the Tennessee Justice Center’s help, we were able to keep Rebecca’s Vest, and her respiratory health is excellent.”
Eleven-year-old Darius “never meets a stranger,” says his mom, Trina, of her outgoing 5th grader. Last fall, chronic headaches and severe weight loss forced Darius to miss school and football practice. Soon, he was diagnosed with brain cancer. Trina had to cut her work hours in half to care for him, leaving the family ineligible for her employer’s health insurance.
Then, TennCare told Darius he would lose coverage the day before he was going to have the brain tumor removed. Without insurance, the hospital refused to operate. Trina called TJC, and we determined that TennCare had miscalculated the family’s income and that Darius should stay on TennCare. With TJC’s help, Darius kept his health insurance and got life-saving surgery. He is now undergoing chemotherapy and his prognosis is good.
Eleven-year-old Henry Vasquez has Asperger’s Syndrome, which affects his emotions and makes it hard for him to talk. His anxiety and self-harming behaviors prompted Henry’s doctor to order Applied Behavioral Analysis (ABA) therapy. Henry’s mother, Maria, speaks only Spanish, and requires an interpreter to participate in her son’s hands-on ABA treatment. But TennCare told the family it would only cover interpretation services over the phone. TennCare’s offer was ineffective, and was a violation of the Vasquezes’ rights. ABA therapy without interpretation would be just as illogical as a partial heart surgery. So, Ms. Vasquez contacted TJC, and we filed a TennCare appeal and a Title VI complaint. Soon, Henry received an assessment to determine how many hours of ABA therapy he needed. A Spanish-speaking interpreter was present. Through Maria’s persistence and TJC’s advocacy, Ms. Vasquez can now learn how to perform the ABA therapy that Henry needs.
Seven year-old Hannah suffers from Rett Syndrome, a devastating genetic disorder. Due to her difficulty breathing, frequent seizures, and inability to talk or walk, Hannah receives nursing through TennCare. In 2009, TennCare told Patricia that they were going to stop covering Hannah’s nursing. When Ms. Womac learned about the reduction, she filed an appeal to keep Hannah’s nursing hours. Then, she called TJC. She explained that every few months, TennCare tries to reduce Hannah’s nursing. Each time, Ms. Womac must go to court, and each time the judge orders TennCare to keep providing the nursing Hannah needs. To stop this exhausting cycle, TJC wrote a letter to the state’s lawyers. They agreed, and Hannah’s nursing services have continued.
Karen and Bill
38 year-old Jim was born healthy, but had lost the ability to walk and talk by the time he was eight months old. Doctors were never able to explain what went wrong. Despite his disabilities, Jim earned a Master’s degree from MTSU and attends church every Sunday. In 2008, TennCare tried to reduce the nursing care Jim needs to say safe. TJC helped Jim’s parents, Bill and Karen, file an appeal, and campaigned to fix the nursing rules. Bill and Karen led the fight by speaking to legislators and putting together a petition against the cuts. Bill said, “TJC is almost like the proverbial David and Goliath story – they’re David, trying to fight a huge machine to protect the rights of individuals.” He continued, “Common folks like us, we don’t know what our rights really are, so these people at TJC, they’re the light at the end of the tunnel for us.” Watch Bill speaking about TJC.
At age 25, John has the mental capacity of a small child. He requires total care and constant suctioning to keep his airways clear. At first, he was receiving enough nursing care for his mother, Evelyn, to work. But then TennCare changed the nursing maximum to 35 hours per week, which would leave John without suctioning for long stretches and put him at risk of choking. So, when John’s care was reduced, Evelyn had to miss work in order to care for John. Evelyn appealed, asking for more nursing hours. TJC found a pro bono attorney named Leslie Muse to represent the family. TJC helped train Leslie in techniques for winning TennCare appeals. After a long hearing, the judge agreed with Evelyn and John’s doctors that his needs make constant care medically necessary. Because of Evelyn advocacy, John is now receiving the care he needs to safely live at home.
2010 Community Mothers
At age three, Marcus was kicking, biting, and hitting, and having fits of rage. His mother, Kimberly, took him to a doctor, but was told that Marcus would outgrow these behaviors. When Marcus stopped sleeping, Kimberly stayed up with him to make sure he was safe. She had to quit her job to stay home and take care of Marcus. But he was still having problems, so Kimberly took him to another doctor, who diagnosed him with ADHD and prescribed medication. Marcus’s behaviors still did not improve, so during one of his fits of rage, Kimberly called the Crisis Management Team. Marcus began receiving treatment at a local facility, where he was diagnosed with oppositional defiant disorder, post traumatic stress disorder, bipolar disorder, and sleep disorder. Thanks to Ms. Williams’s advocacy, Marcus is now getting the treatment he needs to be the best that he can be.
Hannah was born with a poor immune system, and had to fight to stay healthy. Still, she has been to the hospital more times than she can count. Even when doctor after doctor told Hannah’s mother, Stephanie, that Hannah’s physical health problems were due to emotional stresses, Stephanie wouldn’t take “no” for an answer.” She finally found a doctor who would listen to her and perform the tests Hannah needed. They learned that Hannah had several food allergies that were making her sick. “My mommy has stuck by my side through thick and thin,” said Hannah. “She ROCKS!”
Cynthia was hit by a drunk driver while she was pregnant with Caitlyn. Several of Cynthia’s bones were broken, her face was crushed, and she suffered third degree burns. Doctors immediately delivered the baby, who had suffered a blow and had been deprived of oxygen. Now age 17, Caitlyn requires constant care. She cannot speak or walk, and relies on a feeding tube. Despite enduring face reconstruction, loss of smell, taste, and sight, and being abandoned by her husband, Cynthia cared for Caitlyn for thirteen years. In 2009, TennCare denied a special bed that Caitlyn’s doctor prescribed to keep her safe. TJC and the Legal Aid Society (LAS) helped Cynthia get a hearing. When the TennCare attorneys saw Caitlyn at the courthouse, they immediately agreed to give Caitlyn the bed she needed. Cynthia “proves that there is no stronger advocate then a mother protecting her child,” said LAS.
Lourdes’s daughter, Jannie, graduated from high school in 2009. Unlike some teenagers, she thinks her mom is the greatest. Ms. Luster came into Jannie’s life in 2006 when she married Jannie’s father. Ms. Luster quickly became an important part of Jannie’s world, making sure she got all the dental care and therapy that she needed. Lourdes took time off from work and made countless sacrifices to make sure Jannie got the health care she needed to thrive. “I know she is the answer to my prayers,” said Jannie.