TJC 2010 Mother of the Year - Evelyn Human

When TennCare decided to sharply limit home health care for all adults on the program in the fall of 2008, Evelyn Human decided that she was not going to let her son’s care be cut without a fight.  Her son, John, is mentally retarded.  At 25 years old, he has the mental capacity of a small child.  He requires constant care, almost continuous suctioning to keep his airways clear, and assistance with all aspects of his life.  He had been receiving enough in-home nursing care from TennCare for his mother to work and provide for the family.  TennCare’s new rules, however, said that his in-home nursing hours would be capped at 35 hours per week.  With only 35 hours, John would be left unattended for long stretches, and could aspirate from lack of suctioning.

Instead of providing the care John’s needs to stay safe, the MR Waiver, a supplementary program John is enrolled in along with TennCare, only agreed to provide just 4 hours of care per day.  Waiver representatives told Ms. Human that this care would be delivered in 15 minute intervals throughout the day – for a total of 16 separate visits each day!  Not surprisingly, no nursing agencies agreed to provide care on this schedule.  On the day John’s care was set to be reduced, he received no care at all through the Waiver.  Ms. Human was unable to work due to the constant care she had to provide. 

Ms. Human immediately contacted TJC, and we contacted Waiver personnel to discuss the problem.  When that did not fix the problem, TJC contacted attorneys for the State to alert them to the violation of John’s rights.  The attorneys agreed, and John began receiving his supplementary care.  But there were still long gaps throughout the day when John would be alone.  Ms. Human appealed and asked for more nursing hours.  TJC located a pro bono attorney, Leslie Muse, to represent the family.  TJC helped train Ms. Muse in techniques for winning TennCare appeals.  After a hearing lasting several hours, the judge agreed with Ms. Human and John’s doctors that his needs make constant care medically necessary. 

Because of Ms. Human’s advocacy, John is now receiving the skilled care he needs to safely live at home.  We honor her persistence and dedication as a 2010 Mother of the Year.

TJC 2010 Mother of the Year - Patricia Womac

Ms. Womac’s daughter, seven-year-old Hannah, suffers from Rett Syndrome, a rare and devastating disorder of the nervous system that renders her incontinent and unable to speak or walk on her own.  Rett Syndrome occurs mostly in girls and is occurs in one in every 10,000 - 23,000 female births.  Due to these conditions, plus difficulty breathing and frequent seizures, Hannah receives nursing care through TennCare.  Even with nurses, Hannah’s mother cares for her full-time – lifting, bathing, and feeding Hannah and fighting to make sure she gets what she needs. 

Hannah’s caregivers take joy in her small pleasures and accomplishments.  She loves to watch cartoons including “Miss Spider’s Sunny Patch Kids” – a show about a family of bugs who live in the Hollow Tree.  Hannah’s mom thinks that Hannah is drawn to the way the characters speak and their voices.  She also enjoys listening and moving to country music.

Last fall, Ms. Womac received a notice from the TennCare HMO saying that it would no longer cover the nursing care Hannah needs to be safe.  The HMO called Hannah’s doctor and pressured him into reducing his order for nursing.  Then they cut Hannah’s care.  When Ms. Womac learned about the reduction, she immediately filed a TennCare appeal to keep her daughter’s home health hours.  Ms. Womac called TJC, exasperated, and asked for help.  She explained that every few months, Hannah’s HMO tries to reduce her nursing.  Each time, Ms. Womac must go to court and each time, the judge orders that Hannah’s needed home health care be provided.  To stop this exhausting cycle, TJC wrote a letter to the state.  The state’s lawyers wrote back, agreeing, and Hannah’s nursing services have continued.

Ms. Womac’s struggles to provide care for her medically fragile daughter are ongoing, as is TJC’s advocacy.  In January 2010, Ms. Womac called TJC because she needed help getting Hannah’s wheelchair fixed.  The repair company picked up the broken chair, but provided the family with no temporary replacement.  Hannah was left for a week and a half without a wheelchair, causing her to miss a doctor’s appointment since Ms. Womac had no way to get her there.  When the chair did come back, it was missing head and arm supports.  TJC wrote two letters to the state’s TennCare attorneys and got Hannah the safe wheelchair she needs. 

Ms. Womac’s tenacious dedication to her daughter is helping Hannah live the best life she can.  We honor Ms. Womac as a Mother of the Year!

TJC 2010 Mother of the Year - Maria Vasquez

Eleven-year-old Henry Vasquez has severe Asperger’s Syndrome, a development disorder on the Autism spectrum. His anxiety and self-harming behaviors prompted Henry’s doctor to order Applied Behavioral Analysis (ABA) therapy, a treatment for children with Asperger’s which involves family members. Asperger’s affects Henry’s emotions and his speech – he stutters and can't get words out.

Henry’s mother, Maria, speaks only Spanish, and requires an interpreter to participate in her son’s hands-on ABA treatment. But a TennCare HMO told the family that it would only cover interpretation services over the phone, not hands-on. TennCare’s offer was not only ineffective for the Vasquezes, but a violation of their rights. Ms. Vasquez contacted the Tennessee Justice Center and we filed a TennCare appeal and a Title VI complaint with Office of Non-discrimination Compliance/Health Care Disparities in late December 2009. Shortly thereafter, on January 14, 2010, Henry received an assessment to determine how many hours of ABA therapy were recommended. A Spanish-speaking interpreter was present.

Through Maria’s persistence and TJC’s advocacy, both Henry and his mom could participate fully in getting the care he so desperately needs. Ms. Vasquez’s experience highlights the irrationality of a system in which TennCare funnels public money to contractors to manage care, but then allows them to operate without oversight. The contractors then create arbitrary rules which result in children like Henry waiting months for needed care. No medical professional would approve a partial heart surgery or a partial tooth filling – ABA therapy without interpretation is equally illogical.

Ms. Vasquez said, “Thanks to all the hard work of the people at the Tennessee Justice Center it seems like everything is easier and going faster.”

Health Care Story of the Week - 4/21/10

Mother's Day stories will be coming up in the next few weeks... Here's one of our Community Mothers of the Year from 2009.  Destiney wrote to us nominating her grandmother, Earnestine, for the award. 

Destiney’s grandmother, Earnestine, is her health care hero. Earnestine is devoted to doing everything she can to make sure her granddaughter is as healthy and happy as possible. Destiney said Earnestine taught her that, “when your body is healthy, your mind will be happy and it will help you to focus and do your work.” She and her grandmother work out together in their exercise room at home every day. Destiney enjoys jump roping, riding her bike, skating, and hula hooping. “I love to work out because it makes my muscles look big,” said seven-year-old Destiney.

When Destiney needs a checkup or an immunization shot, Earnestine always takes her to her appointments. Earnestine makes sure that Destiney eats three healthy meals a day, with plenty of fruits and vegetables. Her favorite foods are peas and mandarin oranges.

Earnestine also makes sure that Destiney gets plenty of sleep every night, brushes her teeth 3 times a day, stays hydrated and clean. Destiney said her grandma takes her “to different fun places to have fun… (She) loves me and she takes time out with me every day.” Earnestine knows that keeping kids healthy allows them to get the best start in life and reach their full potential.

Health Care Story of the Week - 4/1/10

Jacob, age 7, has a rare genetic disorder that requires him to use a machine to keep his lungs clear so he can breathe. He uses another machine to eat and braces and a walker to get around. While Jacob’s condition means that he has many medical needs, he can talk and his friendliness and growing intellect shine through in his speech.

When his doctor said Jacob was ready to attend school, he prescribed a one-on-one nurse to ensure his safety. However, Amy was unable to find a nursing agency that would provide a nurse for Jacob. She appealed to the insurance company for help, but was told that there was nothing the company could do. Wanting her child to learn and be part of a community of other students, Amy contacted the Tennessee Justice Center for help. Since Jacob is on TennCare, TennCare is ultimately responsible for providing needed care. After TJC contacted TennCare, a case manager was assigned to coordinate Jacob’s care. Soon a nursing agency arranged staffing for Jacob. He is now attending school, learning and socializing in a stimulating environment, all thanks to Amy's dedication.

Amy's best friend, Linda, puts it this way, "I have never seen a more protective, providing, loving mother. Amy has ALWAYS put her family first, being at home and trying to find work from home so she would be able to care for her sick child. I am very proud of her love and her strength and determination to get things done where any one of us would have given up a long time ago. She endures."