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Tennessee Justice Center names Jonesborough woman ‘MOTHER OF THE YEAR’

Jonesborough resident Evelyn Human was honored as a 2010 Mother of the Year by the Tennessee Justice Center for her fight to obtain and keep healthcare for her 25-year-old son, John.
She battled the TennCare system, which cut her son’s care hours after declaring he did not seem to need constant care, Human said.
John has several medical diagnoses that make it impossible for him to be left alone, and he is also mentally retarded.
“John has severe cerebral palsy. He’s had many diagnoses this year. He has COPD (chronic obstructive pulmonary disease), sometimes failure to thrive,” she said. “He has gastroesophageal reflux disease with aspiration, and he takes lots of meds.”
Her son also has seizures, and last year developed Clonus, which she described as a disease “where his brain begins to shut down and his body doesn’t function as it should.”
In the fall of 2008, TennCare began limiting home healthcare for all adults on the program, but Human said she could not allow her son’s care to be cut. Previously, he had been receiving enough in-home nursing care from TennCare for his mother to work and provide for the family.
“I work, and I’ve always worked,” she said.
Under TennCare’s new rules, 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.
“As he’s gotten worse, if he’s having a bad night, it takes me and a nurse to take care of him,” Human said.
Instead of providing the care John needed to stay safe, the MR Waiver, a supplementary program John is enrolled in along with TennCare, only agreed to provide four hours of care per day.
Waiver representatives told Human this care would be delivered in 15 minute intervals throughout the day. However, there were no nursing agencies that would agree 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.
“They think and still think he doesn’t need nursing,” she said.
Human was unable to work due to the constant care she had to provide.
“I am a working single mom,” she said. “They try to push you to put them in homes, but John is my child and I don’t think they can make you do that.”
Human contacted TJC, which 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 apparent violation of John’s rights.
The attorneys agreed, and John began receiving his supplementary care. However, there were still long gaps throughout the day when John would be alone. Human was forced to stay home to care for her son. She appealed and asked for more nursing hours.
TJC helped locate Knoxville attorney Leslie Muse, who provided pro bono services to represent the family. After a hearing lasting several hours, the judge agreed with Human and John’s doctors that his needs make constant care medically necessary.
“They helped me line up all my appeals, and introduced us to Leslie Muse,” she said. “She donated her time for John because she believed in the cause.”
Muse actually told John’s story in Nashville and “how wrong it is that families who work and want to keep their children at home are pretty much punished for trying to take care of them,” Human said.
“In her fight to reinstate John’s care, Evelyn Human also spoke for many other parents struggling to obtain care for their children,” according to the TJC.
Currently, more than 600,000 Tennesseans rely on TennCare for their health care.
“Every day, Tennessee mothers bravely stand up for the rights of their children who are sick or have disabilities. Evelyn Human’s dedication to her son and her tireless fight for what he needs is an inspiring example.” said Michele Johnson, managing attorney at the TJC. “Our annual Mothers of the Year recognition acknowledges the struggles, sacrifices and devotion of caregivers who face many obstacles in obtaining the care that their children need, and taxpayers have already paid for them to receive. Their courage and persistence is unyielding.”
Human said all her work was for her son.
“I’m very proud. I just can’t believe I won this,” she said. “It’s all due to John. He is one of the most awesome people you ever met. To be in his condition, he can really light up a room. He is just full of love.”
Human’s message to parents is to get involved in their children’s lives and health care.
“I want parents to be involved,” she said. “They’re not involved.”
The TJC is a non-profit public interest law and advocacy firm serving Tennessee’s families. It gives priority to policy issues and civil cases in which the most basic necessities of life are at stake and where advocacy can benefit needy families statewide.
For additional information about the Tennessee Justice Center and its services, visit www.tnjustice.org or call 615-255-0331.
Human also encourages anyone who has questions about healthcare to call her. She can be reached at (423) 737-3863.