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Lisa

Photo by Fran Cliff

Fourteen-year-old Sean has been on multiple medications since he was five for attention deficit hyperactivity disorder (ADHD), post traumatic stress disorder (PTSD),  depressive disorder, bipolar disorder, developmental delays and familial tremors.

Late last year, Lisa was told by Sean’s pediatrician that all her son’s diagnoses were wrong and that Sean should come off all medications so he could be tested for a proper diagnosis. Most of the doctors who are qualified to administer the tests that Sean needs will not accept TennCare insurance and will not see him.  Faced with problems in obtaining care for her child, Lisa contacted the Tennessee Justice Center for help.  By federal law, children on TennCare should receive all the medically necessary care they require.

When Lisa contacted the Tennessee Justice Center in early 2008, arrangements were made for Sean to be tested at Vanderbilt University’s autism center.  However, Vanderbilt told the family that they would have to pay $1,400 before testing could begin because TennCare would not pay for the tests. Sean’s tentative diagnosis is Asperger’s Syndrome, a form of autism, and TennCare does not recognize autism as a primary diagnosis. The family does not have the money for the tests. Six months after Sean was removed from his medicines, Lisa is still waiting for her son to be tested so that he can receive medically appropriate care.  Meanwhile, Sean’s behavior has become more difficult to control, to the point that Lisa has started home schooling him to avert potential risk to Sean and others in the classroom.

Sean and Lisa are not alone in their struggles with TennCare. Across Tennessee, children with autism diagnoses struggle to receive TennCare services, services to which federal law says they are legally entitled.

“It has been so frustrating.  Sean needs a test to ensure that he gets proper treatment.  He deserves to get care, whether his illness is autism or something else,” said Lisa. “By delaying this test, TennCare is robbing Sean of his future. I hope that fighting for Sean’s rights will help not only our family, but thousands of Tennessee families who have children with autism.”

Sean said he's appreciative of his mother's efforts. “My mom has been doing a lot things for me,” he said. “I think that she really deserves the award. It's very rare that anyone I know gets recognized and I think that she deserves it a lot.”

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