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Proposed Changes in the Way Autism is Diagnosed Threatens Insurance Coverage for Families

Elmhurst Mayor Pete DiCianni is asking residents to contact their state legislators immediately to support a new Illinois bill.

Elmhurst Mayor Pete DiCianni traveled to Springfield on Thursday to testify before the Illinois House Insurance Committee in support of families of children with autism.

Proposed changes in the way autism is diagnosed may mean some families who are receiving insurance coverage for autism treatments and therapies could lose that coverage—unless the Illinois General Assembly passes Senate Bill 679, DiCianni said. The bill would "grandfather in" all Illinois children currently receiving insurance coverage for autism—up to $36,000 a year and unlimited doctor and therapists visits.

The current law guaranteeing insurance coverage was written by DiCianni and passed by the General Assembly in 2008. DiCianni's own daughter Brianna was diagnosed with autism at the age of 2.

The American Psychiatric Association, the entity that writes the Diagnostic and Statistical Manual of Mental Disorders (DSM), is proposing a more specific set of criteria to indicate a diagnosis of autism. It is in the process of writing its fifth edition of the DSM, the first revision in about 10 years.

Right now, as the DSM is written, autism is an "umbrella disorder" that can include everything from behavioral and intellectual disorders to Asperger Syndrome, Rett's disorder and pervasive development disorders not otherwise specified, Mary Kay Betz, executive director of Autism Society of Illinois, said.

"They want to narrow it down so it's not so broad," she said Wednesday. "It's going to help ensure people are getting better treatment."

For example, Asperger Syndrome is very different than regressive autism, she said. Children with regressive autism might lose language skills as they get older; children with Asperger Syndrome will not. As another example, Betz said if a child rocks back and forth and can't talk or write, but they can make eye contact and smile at someone, they may not get the autism diagnosis if the changes are written into the DSM.

The chief sponsor of SB 679 in the Senate is Sen. Don Harmon (D-Oak Park). Rep. Angelo "Skip" Saviano (R-Elmwood Park) is the chief sponsor in the House. The bill recently passed the Senate 56-0, and on Thursday passed the House Insurance Committee. It is headed to the House floor for a vote.

If passed, it will ensure that children who have improved due to therapy and intervention don't lose their diagnosis and, consequently, their benefits, DiCianni said.

DiCianni urges families and friends of those affected by autism to contact their state representatives immediately and ask them to sponsor and vote for SB 679. A list of all state legislators can be found on the Illinois General Assembly website.

"Safeguards need to be in place in order to ensure that children with autism have the ability to get the help they need in order to unlock their world and enable them to reach their full potential," he said.

Statistics show that every 20 minutes a child is diagnosed with autism. Statewide, 20,000 children live with autism. In DuPage County that number is more than 2,500 children, and in Elmhurst, it's 120. But Betz said that with early intervention, autism is "very treatable."

"That's why it's so important for this bill to pass—so they can still get their therapies," she said. "Educational, behavioral, biomedical all have to work together to help bring that child back to us."

The American Psychiatric Association is accepting public comments through June 15 on the proposed changes to the fifth edition of the DSM. Two previous comment periods netted nearly 11,000 responses. Once the current public comment has been considered and incorporated into any revisions, a final recommendation will go before the psychiatric association's board in December.

Read more about the proposed changes here.

Dan May 18, 2012 at 03:05 AM
A little over a year ago we had a child diagnosed with high functioning autism. From my experince I believe the criteria is too broad and creating a narrower definition is a good thing to prevent kids from being mislabeled. In my child's case it seemed to be a stretch to diagnosed her as autistic. From my perspective it had more to do with giving the doctor an insurance code that could be used to bill the insurance company than providing a meaningful diagnosis that could help her. Label a kid for life just to have that precious insurance code. The doctor even joked that soon every child will have their own diagnosis. As far as insurance coverage goes having a high deductible policy meant that we didn't receive any reimbursement from the insurance company despite this law. The bill was stunning. It cost us over two thousand dollars for a few hours of the doctors time and a report that was 100 percent useless. I wish our represenitives would work on a law that would make it illegal for doctors and hospitals to charge some people two to three times more for the same services others receive at a fraction of the cost.
Darlene Heslop May 18, 2012 at 05:47 AM
while i'm not taking any position one direction or the other, just stating what one of the many, many, too numerous to mention proposals on the table relative to president obama's healthcare plan, is for standardized costs associated w/medical care and procedures, so that whatever procedure, test, therapy, etc. is presribed and done, there would be a set fee, regardless of the type of insurance, insurance company, etc., so this would, theoretically, prevent what you are describing.
Dan May 18, 2012 at 02:59 PM
Is there a link to where the American Psychiatric Association is taking public comment on the changes to how autism is defined? As a parent of a child who was given this diagnosis I strongly believe that the current definition is way to broad and needs to be narrowed down. My experience is that the current method is very subjective and ends up labeling kids with a diagnosis that isn't meaningful. At the same time those who face more definite cases of autism are impacted by a watered downed definition that includes far larger numbers people. The fact that " ever 20 minutes someone is diagnosed with autism" might suggest that the diagnosis is being over used and has less to do with what in the past was consider autism and more to do with giving a diagnosis that the health insurance industry is required to make payments on. As a parent of one of the 120 kids in Elmhurst with this diagnosis I hope you will consider that the current definition is likely including children as autistic that do not benefit from this diagnosis and the label could negatively impact them in the future.
NancyC May 18, 2012 at 03:48 PM
Right on Dan. I would also like that link.
Karen Chadra (Editor) May 18, 2012 at 04:30 PM
Here is a link to DSM-5 information in great detail: http://www.dsm5.org/Pages/Default.aspx Here is a link to the recent proposed updates to the DSM: http://www.dsm5.org/Pages/RecentUpdates.aspx Apparently, you have to register to leave comments: http://www.dsm5.org/Pages/Registration.aspx Hope this helps!

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