Monday, April 09, 2007

Autistic children may get better treatment options

Forum looks at coordinating services; Senate may force insurance coverage

Published: Sunday, April 8, 2007 - 2:00 am

Melissa and Scott Forster suspected something was wrong with their son when he hadn't spoken a word by age 3.

When they learned Aaron was autistic, one question was answered. Many more were raised.

Where could they go for help? Would insurance cover his treatment? What would become of him as he got older?

"I remember thinking, 'What are we going to do? Will he ever go to school, have friends, be able to drive a car?' " Melissa Forster said. "What happens is, you get this diagnosis -- your child has autism. Now what? It's terrifying."

Because autism services can be fragmented, the Center for Developmental Services in Greenville is sponsoring a Family Autism Forum this month aimed at better coordinating these services in the community, said executive director Jenny Fetterolf.

The center, which links families with six organizations that provide developmental evaluation, treatment, education and support, saw nearly 200 children with autism last year, she said. And the numbers are increasing.

"With a diagnosis of autism, parents often don't know where to go or where to start," adds Dr. Anne Kinsman, a pediatric psychologist with Greenville Hospital System who's been working on the forum.

"There are huge questions. And a lot of fear," she said. "The goal is to bring everybody together so that maybe we can work more cohesively over time to help these children."

At the forum, parents will be able to talk to professionals from Greenville Hospital System, the School District of Greenville County, the Piedmont Autism Division, Hope Academy and other organizations. At a meeting last month, the professionals explored forming a task force to work on improving services for autistic children in the Upstate, Fetterolf said.

Part of the problem is that so many entities are involved -- the doctors, the state, the school system, says Kinsman. All are working to help the children, but each functions independently under different rules, funding sources and processes, confusing things for parents and health-care providers. Perhaps they can be streamlined so they're more efficient and accessible, she said.

Forster, 38, says she learned about services serendipitously by running into people who provided leads. A lot of parents just stumble along, and their children don't get the best services as a result, she says.

"There are people out there who don't know what's available," she said. "So what I would like to see with this group is to have a resource for parents."

Another hope is that the forum will empower a grass-roots movement for autistic children and their families, advocating for insurance coverage for therapies, for instance.

"We hope it will provide parents with some answers," said Fetterolf. "And we hope it will morph into something bigger and more long-term."

One treatment shown to have a profound impact on many autistic children is an intensive early intervention called applied behavioral analysis. Since Aaron Forster has been getting ABA, he's talking, making eye contact, spending less time on repetitive behaviors and even has begun to show affection, his mother says.

"I think one of the reasons he's doing so well is that we caught it early and that we started the intense therapy," she says with a smile as Aaron throws his arms around her neck and kisses her cheek.

But the treatment isn't covered by insurance. The Forsters, of Greenville, spend about $2,000 a month on it. But some children need more hours of therapy, and it can cost upward of $50,000 a year for them.

"This is a disease. And many studies have proven that the therapy, especially if you start very early, you can get them to where they can function in life. And it's so much more cost effective (than eventual institutionalization)," she says. "It's so frustrating that insurance won't cover it."

A bill that would mandate coverage for autistic disorder passed the state Senate Banking and Insurance Committee last Wednesday and is headed to the full Senate, said Marcella Ridley, a Columbia mother who's been pushing for the legislation. It would limit coverage to $75,000 a year per person, she said.

Forster says Aaron, now 4, is doing so well he'll be in kindergarten this fall. And they're actually hopeful about his future.

"When they told me he had autism, I was devastated. And there are days when we take two steps back," she said. "But he has done remarkably well. We're optimistic."


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