April 1st, 2009
02:53 PM ET

Autism’s monetary costs nearly match emotional toll

By Stephanie Smith
CNN Medical Producer

When he, without warning, snatched my arm from my lap and nestled my hand into his, I must admit I was startled. My 10-year-old "captor," Darian Sepulveda lightly squeezed my hand, and would not let go. I turned to him and for the first time that day, found myself really looking at him.

In his eyes, I thought I saw glints of struggle and pain - but also a light, a profound understanding of the disorder that has hijacked his brain and his body. Darian, who is living with autism, has not been able to speak since he was 2 years old and he seldom gives people more than a split second of eye contact.

Just before he grabbed my arm, I had finished interviewing his mother, Ada Sepulveda, about the crippling costs associated with the care and therapies for Darian. From the moment Darian’s autism was diagnosed, when he was 2, the Sepulvedas began to rack up bill after unpaid bill. They have been devastated financially - taking out innumerable loans from family and friends, draining their 401(k) accounts. They've exhausted all of their resources trying to pay for Darian's treatment.

Ada is bitter about the almost daily battle she wages against her health insurance representatives to get Darian's autism-related health problems - including colitis and neurological and speech problems - covered by her health insurance carrier.

She was angry when she said, "Why do they do this with autism? Why is it treated differently than other diseases? It's inhumane. You don't tell a person that has a diabetic child, 'Oh well there's no cure for this.' You give them insulin. You treat them."

I posed the Sepulvedas' and other families’ cases to the Center for Affordable Health Insurance, which represents small businesses and health insurance companies. I asked why, when families are paying tens of thousands of dollars out of pocket for autism therapy and treatment, won't insurance companies foot the bill?

Kevin Wrege, a CAHI spokesperson, says that that services for autistic children are provided by each state: At schools, and through early intervention programs. CAHI's position is that the state should continue to help children with autism through the state system, instead of shuffling the burden of care to private health insurance companies. The result of that burden, he says, is that insurance rates will spiral even further for small businesses and individuals.

He added that diagnosis and medical treatment for autism are covered by most private health insurance plans. But therapies that are not definitively proven to help with autism - like applied behavior analysis, which is popular among parents - are not covered.

The coverage problems, according to families like the Sepulvedas, is not the more experimental treatments, but basic medical care. She says her claims have been repeatedly denied for basic medications that are not related to Darian’s autism and for things like an MRI when he exhibits neurological problems.

I turned to Christina Peck, who has 6-year-old twins on the autism spectrum, and who used to work in the health insurance industry. She says while the financial burden can be devastating to families, there is hope.

Peck helps families to work around the insurance companies coding system. She has advised families to, instead of calling an insurance representative and saying, “My child has autism, and we need occupational therapy,'” to simplify, by saying, “My child has low muscle tone, and we need occupational therapy.'”

Peck tends to get involved with families after they receive numerous insurance claim denials. She is trying, family by family, to decode and demystify the health insurance system so that families can get coverage while awaiting a cure for autism. Over the past two years, she has helped families recover $1.1 million in denied claims.

Still, Ada Sepulveda often feels defeated by the health insurance system. She resents that while attending to the exhausting schedule dealing with Darian's medical needs, she and her family also expend so much energy fighting insurance companies.

When they have time to think about it, Darian's family is tormented by questions. What if they had not had to fight so arduously for insurance coverage? Would he be better? Would he have progressed more?

I wondered the same things after leaving the Sepulvedas’ home. Would that flicker of understanding, of light, that I detected when I looking into Darian’s eyes be more brilliant, would he even be able to form a few words, communicate more if he had received all of the therapies his family believes he needed?

That is a question that may never be answered.

What do you think? Should autism therapies be covered by private health insurance or should states provide care and therapy for children with autism?

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