Aug 07


Health and dental insurance are a pain to most people. However, for parents with a child with autism it can be much more of a hurdle in life. Over the years I have come to find out that most insurances, the one through our State (Brody has a secondary insurance he qualified for because he is on Arizona Long Term Care) and any of the private insurances we’ve had through my old job or my husband – they all try to shirk the responsibility of paying for anything. I know this first hand and over the years have (cumulatively) spent hours on the phone with both types of insurance companies and we have numerous doctors and specialists appointment over the years.

Example #1): We finally found a dentist who worked well with Brody and understood his sensory and behavior issues. I knew the dentist did not take both of Brody’s insurances but I was told I could bill the secondary insurance. I did just that after we incurred a very large dental bill. It was largely because it has taken almost a year of working with Brody for him to sort of tolerate a minute (if that) of brushing. Therefore, I knew his teeth might be in bad shape before we even went to the dentist. But that is why Brody is on Arizona Long Term Care, right? Cause his disability means there are extra dental and medical bills than the average child. As most people know, dental bills can be quite high even after insurance pays their portion. Well the conclusion of all the expenses is that the state insurance, Mercy Care was not able to pay anything towards Brody’s dental bill. This is because the state of Arizona passed a law back in 1997 saying that private insurance companies have to pay the same percentage of a bill as the state insurance IF it goes over that percentage then the state insurance cannot pay said bill. Because our private insurance has their own calculations on how much should be paid than the state insurance, we suffer the consequence because they refuse to pay! Okay I hope that reads okay because even explaining it in words is not only frustrating but also it makes NO sense. We are left with a bunch of dental bills. I was told the solution is in the future to find a dentist that takes both insurances. Well since, it took me a couple years of referrals and a dozen phone calls to find the right dentist capable to treating Brody I said I would “try” [insert sarcastic tone]! Next time we can either try a dentist who might not understand how to work with Brody (which usually means the same for the staff) OR continue to pay hundreds, if not, thousands more.

Example #2): It has been scientifically proven that Applied Behavioral Analysis (commonly called ABA) significantly helps lessen the symptoms of autism. Diets, nutritional supplements and sensory integration is debated among many professionals as treatment for autism but there has been something like 70 academically and peer-reviewed studies on the subject of ABA thus that is why I am saying it is proven. Unfortunately, insurance does not see things the same way the medical, scientific and academic world does. Unless it is a state where autism insurance reform has passed, most, if not all insurance companies do not cover services related to autism unless a person has purchased some amazing insurance. This applies to bigger companies that purchase insurance plans. These policies are most often self-funded which means the companies fund the claims and the employees pay or contribute to the monthly premiums of the policies (which was the case when I worked for Bank of America and currently through my husband’s work). Policies such as these do not have to follow state mandates only federal mandates. The head of the HHS advised those working the Affordable Care Act not to include ABA as a covered service. With that last hope dashed, the accountability then goes back to Brody’s state insurance and there it will stay! The entity that manages Brody’s state insurance is DDD. On this topic, DDD writes policies that dictate quite a bit of requirements a child has to meet in order to get DDD’s equivalent to ABA therapy.  First and foremost, it is a requirement by Arizona that a child needs to start the service before they reach 4 years old and sometimes like to see it end by the time the child reaches 5 years old. Age limit for ABA is unheard of to professionals in the behavior treatment or autism community. ABA can help anyone; age does not dictate its effectiveness. This policy of DDD is laughable because there are a very high percentage of children who are not even diagnosed until their third year of life! I could write a book all about this subject and our experience. I have spoken with university professors and experts in the ABA field so I feel I can say all of this. The issue specifically, my husband and I engaged in an administrative hearing in front a judge and we went toe-to-toe with an attorney from the State Attorney General’s office!!! All because I was fighting for my son to receive a service basic to anyone with autism and yet I did not even know DDD had a program like it until Brody was 4 months before from turning 4 years old. We resolved the issue but it took almost an entire year and half and a lot of my time learning the Social Security Act and learning my sons rights. The service is at least $50,000 a year so there was no way we could pay for it. Our private insurance we pay for every month has never covered anything related to autism. Speech therapy, occupational therapy, music therapy and anything else is at the mercy of the State insurance and all the regulations.

These are just two examples of the ongoing and past headaches we have had to endure. I have heard so much bull**** out of the mouths of reps to lawyers. Some were innocent people just doing their jobs and repeat the policies. Others do not seem to let anything penetrate their tough exterior. I have heard the comment, “well it is the parents responsibility to raise their child” as a reply to why we cannot have more habilitation hours. I am sometimes treated like a b**** cause I get upset when people don’t realize they might be doing their job but I am advocating for services for my son because 1) we can’t pay for it privately and 2) these services directly and significantly affect his progress and development.

I say ALL of this out of frustration and to lay out our predicament, which I am guessing, is the same as MANY others. Some say stop paying for the insurance through my husband’s work. Well we pay the same monthly premium despite the number of children we have. Others have said for me or my husband to go after jobs where the company’s insurance policies do follow the insurance mandate. That is very difficult right now in my husband’s career to be able to do that. I also firmly believe that no state government or health insurance company wants to incur the cost so policies and regulations written so both do what they can to evade responsibility. In the meantime, while bills are not paid more great doctors, dentists, specialists, and programs stop accepting insurances or not specializing in working with children with special needs. All the while, our son does not progress and thrive when the help and answers are out there – we just can’t afford it

To me that is the greatest injustice of it all. The growth and improvement of our son should not be related to our income, job or where we live BUT IT DOES.

Yes, this is a massive and major rant! As the mother of a child with autism, I happen to have many experiences related to this subject so this rant was bound to happen at some point. I hope people who read this can learn from this or at least see this subject from a different perspective.

P.S. For those who read this and can’t help but want to go off on the Affordable Care Act (negatively and often referred to as ObamaCare) just know that this post is not to debate and discuss it. My experiences with insurance has only helped me see that there does need to be reform and in a major way.

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