Autism meeting reveals hope, frustration

By Liz McMahan
Muskogee Phoenix Staff Writer

March 14, 2009 08:24 pm

— Frustration was a common bond shared by parents, grandparents, caregivers and educators attending a community forum on autism Saturday morning.

They are frustrated not just by the difficulties and challenges they face every day in rearing their children, but also with a system that compounds those challenges many times over.

Autism is a brain development disorder that affects as many as one in 150 children, said Christi Kellogg, founder of the Hope Foundation for Children With Autism and Related Disorders, which hosted the forum at the Muskogee First Church of the Nazarene.

Jeff Edwards of Developmental Wings of Sallisaw said the number of children with autism is expected to get progressively larger. He said he recently talked to teachers who said they are seeing an 800 percent increase in the number of children with autism.

Four state representatives attended the session — two Democrats: Mike Brown of Tahlequah and Eric Proctor of Tulsa and two Republicans: Kris Steele of Shawnee and George Faught of Muskogee.

Steele is principal author of a bill that has passed the House that establishes a certification process for therapists working with autistic children.

That is the first step, he said, in getting insurance coverage for the condition. The bill will become effective Nov. 1 if it is signed into law.

He and Faught have opposed “Nick’s Law,” a Senate measure that would provide insurance coverage for services for autistic children.

Faught said the legislation would put an unfair burden on people like himself who don’t have group insurance. It could raise rates for the self-insured an estimated 7 percent to 20 percent, he said.

Brown took issue with the studies that estimated that increase. Other studies have shown private insurance rates would be increase 0.5 percent to 1.5 percent.
Proctor said insurance companies do not want to pay for treatment for autistic children because it would take away from the billions of dollars of profit they make every year.

He called for the state to place controls on insurance companies.
Those attending Saturday’s meeting said they want solutions now — that early intervention has proven to be of great help to autistic children.

Muskogee pre-school teacher Vickie Garrison said she saw great improvements in the 3-year-olds she used to have in her program. But the program has been cut and she now doesn’t get to see the youngsters soon enough or for long enough periods.

To delay helping parents get help with their children will have a long-ranging impact too, said Wayne Rohde, head of the Oklahoma Autism Coalition and father of Nick, the 11-year-old the proposed law is named for.

He quoted a Harvard study (actually per CDC - misquote) that shows 400 children are being diagnosed with autism each year.

“If we can get to them early enough and aggressively enough, almost 50 percent can recover by the time they reach grade school age,” Rohde said.

Those who are older have little chance of improvement(if not diagnosed properly and receiving treatment), he said. The first group of those children will become adults in four years and will be eligible for disability benefits. The Harvard study shows the cost of caring for autistic adults is $3.2 million per child for a lifetime.

Rohde said he shares the same frustration as all those attending Saturday’s meeting. He is especially frustrated in working with the Legislature in trying to get its help.

“We fight the schools, we fight the doctors and now, we’ve got the disrespect of the legislators,” he said.

Reach Liz McMahan at 684-2926 or lmcmahan @muskogeephoenix.com.