Health Care Story - 7/22/10

Diane adopted Jimmy as a special needs infant when he was only six weeks old. Diane knew that he was born with a cleft palate and some other minor birth defects, but since she has private insurance and (as a special needs adoption) Jimmy also has TennCare, Diane thought all Jimmy’s needs would be covered by insurance.

It turned out that Jimmy’s minor problems at birth became significant impairments as he grew. By age 8, he had been diagnosed with autism, mental retardation, and cerebral palsy. His autism has proven difficult to manage, with behaviors ranging from running into the street and grabbing women’s breasts in public to obsessively chewing warts on his hands and a fascination with the sight of his own blood. Nevertheless, Diane knew that Jimmy had great potential and that all he needed to reach it were the right therapies and treatments. As she told TJC, “Despite his challenges, he is a sweet kid who tries very hard and who inspires most who meet him.”

Diane began searching for therapy to manage Jimmy’s autism soon after he was diagnosed. She even took him to a specialist out of state and paid out of pocket for ABA therapy when her insurance policy said it would not cover the treatment. As he got older and his behaviors worsened, Diane hired specially trained caregivers, once again paying out of pocket, to help care for Jimmy. Over the years, she has spent more than $100,000 of her own money to try to keep Jimmy safe. Unfortunately, all this money and effort has not allowed Jimmy to reach his full potential.

Diane contacted TJC for help getting Jimmy therapy to reduce his harmful behaviors. Jimmy’s PCP and psychiatrist prescribed applied behavioral therapy (ABA), but TennCare denied it as not medically necessary and Diane’s private insurance would not cover the expensive treatment. TJC helped Diane navigate the appeals process and discovered a TennCare procedural error, which allowed Jimmy to receive intensive in home ABA therapy for more than one year. His obsessive biting and other dangerous behaviors have been drastically reduced. In preparation for the family’s TennCare hearing, TJC located a pro bono attorney to assist Diane in court. Based on Jimmy’s severe needs and the successes the ABA treatment had produced, the Judge ordered TennCare to continue providing intensive ABA.

Because he has gotten the health care he needs, Jimmy is adjusting better in school and other public settings. His problem behaviors have gone down. His overall physical and mental health have improved, and he is a happier child. Through the tireless advocacy of dedicated mothers like Diane, Tennessee’s children have a brighter future ahead.