Sunday, January 4, 2009

Spinning in circles - Tulsa World

Spinning in circles Time for Legislature to approve bill on autism benefits

By JULIE DELCOUR Associate Editor
Published: 1/4/2009
In retrospect, her spinning became a metaphor for all that the little-girl-next-door had faced in the first several years of her life and all the difficult years ahead. "Why is she spinning, doesn't she ever get dizzy?" her 4-year-old brother's group of pre-school playmates asked. "I don't know," he said, "she doesn't talk. She just likes to spin around."

While the other, younger kids played by the hour in her family's fenced yard she kept to herself, twirling across a grassy stage like Isadora Duncan without the scarf. That was the way it was for the entire time that we lived next door to her. Whenever she was outside she often would spin, arms outstretched, dipping, lifting and shifting in silent rotation. Or she would perform another repetitive behavior for hours.

The kids — no more questions asked did not invite her to join their circle knowing that she preferred to stay in her own. Her parents, meanwhile, moved in a frustrating circle of uncertainty, unsure why their daughter, so physically perfect, never talked and failed to interact with those around her. They speculated that a vaccination, given as an infant, caused developmental delays. But a lawsuit that might have validated their theory went nowhere.

Autism was mentioned. I cannot recall with certainty, however, if that was her final diagnosis. These were parents who wanted more than anything on Earth to unlock the mystery of why their child was different. Eventually, the little-girl-next-door went to school. The trips back and forth were tough for her. While the programs helped some there always were issues. Her parents fretted constantly about her future. I wish that I could report an ending to the story.

We moved away 20 years ago and eventually lost track of our former neighbors. The little-girl-next-door now would be in her 30s. I hope that if she were autistic that she received the particular behavioral therapies often helpful to those with autism. I fervently hope the same will come true for thousands of Oklahoma children who don't have insurance benefits for those therapies. Their families must shoulder the financial load or are forced to forgo treatment because of the expense.

Last week, Blue Cross and Blue Shield of Oklahoma announced it would provide additional coverage for clients with autism beginning in 2010. While that is a positive sign it is no guarantee that other insurers voluntarily will follow suit. The Legislature last year showed its unwillingness to make them. That bill, requiring insurance companies to cover autistic clients, passed in the Senate but was thwarted in the House by Republican leadership who claimed it would raise health insurance rates.

Sen. Jay Paul Gumm, D-Durant, has re-filed "Nick's Law," named for Nick Rohde, 11, an autistic child from Edmond. Like the Greek mythological character Sisyphus, Gumm again will try to push the stone uphill. Oklahoma will be among 10 states in which battles will be waged for autism-related benefits this year. We hope that the Legislature finally will do with bipartisan support what 20 other states have done, starting eight years ago with Indiana.

We understand that insurance mandates can be expensive and should be passed with caution. But those 20 other states have found the benefits worth the cost. Studies indicate that the earlier autism is diagnosed and treated the better for the patient and the more cost efficient for society. This is not a minor matter. One in every 150 children is diagnosed with autism, a complex developmental impairment affecting how a person communicates, reasons and interacts with others.

The fastest growing disability in the nation, it touches more children than cancer, diabetes and AIDS put together. Each child's challenges are distinct, and so are each family's. On behalf of those Oklahoma families with autistic children, we hope in the interest of fairness that the Legislature will bring itself to do the right thing this session. Please stop spinning in endless circles.

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