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Insurance Coverage Denied

Autistic boy's speech therapy in jeopardy

Anyone who has tried to talk with my son could easily see that Kai needs speech therapy. Yet his health insurer has now deemed that it is not necessary.

I have written about my son’s chatterbox personality, and the progress he has made from long after most of his peers were talking. But Kai still has a long way to go with his communication skills.

His conversations run mostly one way. While he can talk endlessly about Pokémon, he has trouble answering questions that require him to say more than a few words. He rarely is able to give us even the most basic details of his day at school. He has a hard time telling why something happened.

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So it seems obvious to me that Kai needs speech therapy.

But it is not just my opinion. Professionals who regularly work with Kai concur.

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One psychologist spent weeks conducting a comprehensive neuropsychological examination on our son. She concluded that “private speech and language therapy is critical to help him develop his receptive, expressive and social communication skills.” Teachers and therapists have expressed similar thoughts.

But beyond even the professional opinions, we have objective measurements that support the need for therapy. 

Our son’s longtime speech therapist periodically gives Kai formal tests to measure his progress. These exams are widely accepted throughout the industry. The latest results show year-over-year progress that clearly indicates that Kai is benefitting from the structured language intervention he receives. But it also shows that he remains quite deficient is some areas such as pragmatic language.

Pragmatic language – that means things like being able to sustain a conversation. You would think something like that is important, wouldn’t you? The insurer apparently does not.

The test results are right there in black and white. It is clear as day.  Yet the insurer has denied coverage.

Illinois’ Autism Insurance Law

In Illinois, a law was enacted about three years ago that requires health insurance companies to provide coverage for the treatment of autism spectrum disorders, and specifically includes coverage for speech therapy.

When the law was passed, it gave hope to many families that insurance would cover more of the therapy that so many of our kids need. But it has not worked out that way for us.

And that is because my son’s insurance plan is exempt from this state law.

My wife and I do not have access to a group insurance plan. So we are on our own when it comes to health insurance. And with our son’s autism diagnosis, no insurance company would accept coverage for him.

That meant that we had to take coverage through the Illinois Comprehensive Insurance Plan (ICHIP), a program partially funded by the state that is intended for people whose pre-existing conditions prevent them from getting any other insurance. ICHIP is not welfare or a charity; I’d wager that the premiums charged for Kai are much higher than what most of you pay for your kids’ insurance. 

Yet those covered under ICHIP are not protected by the Illinois Autism Insurance Law.

Does that make sense? Kai can’t get insurance through normal channels because of his autism. But because of that, he doesn’t qualify for protection under a law designed to help those with autism. Sounds like the worst kind of Catch-22 to me.

What now?

Claims going back to early July have been rejected. That means there will be no reimbursement for nearly five months of therapy. That equates to thousands of dollars.

We are going to appeal the decision, but the appeals process does not go to an independent arbitrator. Rather, folks in the very same organization that denied the initial claims will now review to see if they need to overturn the decision. What do you think our chances are that we will win the appeal? 

The other issue with an appeal is that it takes time. Oh, we will get our paperwork in promptly, but the insurance side can take two months to reach a decision. That means we would be risking two more months of out-of-pocket expenses. That is something we cannot afford.

So, with much regret, we are stopping our son’s speech therapy.

In raising a child with special needs, we accept that there are going to be tough times, and I’ve learned that keeping a positive attitude and blocking out negativity are vital to persevering through some difficult moments.

But something like this is incredibly frustrating. 

Is it too much to ask that an insurance provider give the coverage it is supposed to?

Enough already. Let my son have the therapy he needs.

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