Call it Anything But Autism

by Sandra Ollamok
(Oklahoma City, Ok US)



Call it anything but Autism!



Parents many times want their disabled child to have a label. Any label will do. Why? So they know what they are dealing with and can start a plan of attack. Or, can finally put a name to what they have faced for so long. They never dreamed that it could force them into being denied basic insurance coverage for an illness or service, but it can.

Please don’t give up. Please continue to fight. There are still ways to get things covered. It takes a lot of endurance but these types of parents to this everyday anyway.

One must first study their insurance plan. What is covered? That is right! Do not look for what is not covered. Read the guide you are given over and over. Become familiar with diagnostic codes. ICD9 coding is used by most insurance companies. Here is a web site that could be of use: icd9cm.chrisendres.com/. The way something is coded is the key to getting insurance to pay for the illness or service.

According to an Occupational Therapist, OT, one specific code not to use is 299.00, which is Autism. The code 783.40 is Developmental Delay, another area that insurance has denied often. The code the OT has received the best payment from is 781.3, Praxis or Motor in Coordination. The code has to relate to a medical need, if insurance is to pay.

Through unique circumstances a teacher noted that my son seemed to have a curved spine. My husband and I thought she was wrong. We finally consulted an Orthopedic Surgeon. This resulted in a prescription for Physical Therapy (PT) services, Social Skills Training and Speech Services. He has Scoliosis. The Doctor wrote the Rx for services based on a need to increase spatial body awareness and the diagnosis of Scoliosis, Asperger’s and Dyssemia. Dyssemia is:

“The term comes from the Greek dys (difficulty) and semia (signal). These difficulties go beyond problems with body language and motor skills "A classic set of studies by Albert Mehrabian showed that in face-to-face interactions, 55 percent of the emotional meaning of a message is expressed through facial, postural, and gestural means, and 38 percent of the emotional meaning is transmitted through the tone of voice. Only seven percent of the emotional meaning is actually expressed with word"]. Dyssemic persons exhibit difficulties with the acquisition and use of nonverbal cues in interpersonal relationships. Dyssemia represents the social dysfunction aspect of Nonverbal Learning Disorder”

The insurance did pay for PT and the other services were not used at that time. Yet, this was a physical reason to write for these services. This Doctor says he sees Scoliosis in children with Autism a lot. This doesn’t mean to take in all children with Autism to an Orthopedic Surgeon. By all means go through the Primary Care Physician (PCP) first.

What this is saying, is there are reasons other than Autism to bill insurance for services. Insurance will pay for these. One has to look at what insurance will pay for and see if their child has these conditions. Does it seem like a game? Well it just might seem like it. If it does, that means you have a chance of winning. If one does try, there is a 50/50 chance of winning, but if one does not try, the result is a loss.

Do you know what a Carve Out Plan is? Do you know what the Birthday Rule is? Do you know if your insurance company is a PPO or an HMO? One can go to www.parenttoparentnys.org and download a book on understanding insurance. Most states will have guide to Medicaid that tells what is covered.

There is another web site that has a guide to understanding private insurance, www.healthinsuranceinfo.net. Knowing these terms will help you when you are navigating the insurance network.

A Carve Out Plan will not pay for anything that another plan does not pay for if one has two or more plans. The Birthday Rule is where both parents cover a child, the parents’ birthday that comes first is the primary insurance and the other insurance is secondary. My birthday comes first in the year, so if I had insurance then mine would be primary and my husband’s would be the secondary.

Other things to bear in mind besides what to call it, believe it or not are the geography of where you live. Some states mandate coverage for Autism. If they do cover Autism, one might still want to consider calling it something else. What are the caps these states have put on covering Autism? Some have put it at very low. That means the insurance companies win and you lose. These are just things to consider. Just check on what the dollar amount is.

A New York Times article, "A Road Map to Help Parents Deal with Financial Burden of Autism," talks about fighting insurance to pay for Autism and stretching the Autism dollar. Of course, one needs to keep copies of all records: Explanations of Benefits, Doctors Receipts and other documents such as denial letters. What the article states about stretching the Autism dollar is if the services one gets at school, such as Occupational Therapy (OT), PT and Speech are good, then one can save the other dollars to pay for out of pocket expenses not covered by insurance where needed.

Insurance often requires one to go all the way through the process of getting a denial and through the appeals process. Sometimes it helps to talk with the State Insurance office. This is not a guarantee and one may have to sue with a lawyer.

Remember getting a lawyer may cost money. Even if one does attempt to sue for coverage it is not a given that one will win and sometimes it is good to know when to quit or give up the process. It may cost too much money to pay a lawyer and lose that money too. Please make the best informed decisions for your family.


Playing the insurance game is no fun. I hope this article has brought some strategy to your side. Paying for Autism is a never ending process. Remember call it anything but Autism. Look for something real that your child has, this should be easy. I pray that I have helped you in some way. Bless you for allowing me to share in your trails and blessings.


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May 28, 2016
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Marvelous Post NEW
by: Sam Kkc

THis is such a marvelous post and i just amazed to be here and to read this perfect post.Thanks for share this with us.I just delighted so much to explore it more.Thanks
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Jul 27, 2015
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informative!!!!!!! NEW
by: Dayne

Never call a child with the name of autism. If you do that, then you are just restriction the child’s growth as a whole. This actually makes him believe that he is not going to get anywhere. Try to motivate him than calling him autistic. outlook not responding

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