Questions circle Asperger's syndrome removal from diagnostic manual

West Virginia was the 25^th  state to implement a law that requires some health insurance providers to cover treatment for children with autism.

 
But experts say there’s still work to be done in coverage, teacher training, and access to care.

Dr. Susannah Poe, licensed Psychologist and associate professor of the West Virginia University School of medicine in the pediatrics department points out there is still work to be done.

”One of the kinks in this insurance is that it does not cover everyone," Poe said. "It only covers about a third of the people in the state and those are the people who are covered by large insurance companies doing business in West Virginia that are not self-funded.”

Poe says the law does not require coverage for those on Medicaid, people who work for small employers, and self-funded policies offered by many coal companies and hospitals.

The law covers children up to age 18 on the autism spectrum which currently includes pervasive developmental disorder, autism or Asperger’s syndrome. But that's expected to change in May.

The American Psychiatric Association plans to remove the term ‘Asperger’s syndrome’ from the manual of mental disorders. Instead people with Asberger’s will be grouped under the general umbrella of autism spectrum.

The manual is considered incredibly influential in the medical field. It’s used by doctors to diagnose patients and insurance companies refer to the manual when determining reimbursements.

Stacey Jewell’s 15 year old son Donald was diagnosed with Asperger’s syndrome; a diagnosis that some say is overused. People with Asberger’s have normal intelligence but often have difficulty with social interaction.

Jewell says finding treatment, especially in the southern part of the state, is already challenging.

“We literally have muddled our way through," Jewell said, "fought, and clawed for every service we could ever find. We have educated ourselves nobody has stepped up to say hey, this is what you need to know or this is what the symptoms are we’ve done it all ourselves.”

“Now I’m scared with the APA taking away the diagnosis from the DSM that we’re going to be back at square one again and it’s not me that’s only concerned there’s a lot of parents concerned."

Studies show that the best form of treatment for autism is applied behavioral therapy but there are no certified ABA specialists in Southern West Virginia.

Donald is doing well seeing a therapist in Beckley and receiving other services through the school system. Individuals like Donald who are already diagnosed with Asperger’s will be grandfathered in and will still be eligible for services.

But Jewell points out that changing the way Asperger’s is diagnosed might create a situation where there are no insurance billing codes to match up with the diagnosis. She fears there will be no coverage.

“Severity levels, level three requiring substantial support," she reads from the DSM, "level two requiring substantial support, level requiring support."

"A lot of these people don’t meet these qualifications they’re high functioning. They need support they need social skills class that’s it or they need a therapeutic service that helps them deal with emotional issues. It is on some level of support but once you start going in here and start looking at, I just there’s just some people that aren’t going to qualify.”

Poe says the change will undeniably bring more confusion.

“Those of us who do diagnosis are really going to have to really get used to this," she said, "and figure out where our old methods work with the new methods and learn the new methods.”

Poe says the West Virginia School of Medicine plans to help families, providers, and insurance representatives navigate the new terms and potential new coverage through a grant, from the Benedum Foundation. The project is called train, an acronym that stands for Training and Resources for Autism Insurance Navigation in West Virginia.

“Parents of any child with any autism diagnosis know how hard it is to get the services that their child needs," Poe said. "Now what this is going to do is add some confusion for a while I think until we are clear on what the new label means in terms of treatment in terms of service provision through insurance and through school systems.”

“Right now a school system must provide services depending on the child’s need and not necessarily the child’s diagnosis.”

Poe says it’s too early to tell exactly how the removal of Asperger’s from the manual will affect coverage. At this point she encourages parents to be an advocate for their children.

Something Stacey Jewell says she learned the hard way.

“I had an advocate look at me when all this abuse allegations came out she said you’re stupid," Jewell explained. "Nobody’s going to advocate for your child better than you can. You know your child better than anybody.”