My Story starts with Five Words – YOUR SON HAS HEART DEFECTS.
My youngest son, Matthew, was diagnosed with having severe heart defects while still in utero. I, of course, was horrified by the news. However, the great doctors, medical staff and surgeon at Nationwide Children’s Hospital had a plan. He would need several heart procedures and his first open heart surgery when he just 5 days old. After paying a HUGE deductible, our insurance thankfully covered most of Matthew’s treatments. And that executed plan and exceptionally talented medical staff saved Matthew’s life!
But my autism story is not about Matthew. It is about his older brother, Michael who was almost two when Matthew was born. Michael was born healthy. He was developing physically but his speech was a little delayed and his doctor told us he would catch up. In the summer of 2013 Matthew needed his second open-heart surgery. It was at this time we noticed behaviors in Michael that are deemed odd or different from typical children. We thought, well he is boy, boys are rambunctious, their speech is slower than girls and maybe he is just missing the routine since mom and dad are spending so much time at the hospital.
We met with Michael’s day care advisor and she recommended we get him tested. After several weeks and months of sorting through the process and waiting lists, we finally got Michael tested.
And then we got the news – FOUR WORDS – YOUR SON HAS AUTISM. Although it was upsetting, I was prepared to hear it. At least now we know. So similar to Matthew we will get a plan and work the plan. But it is not that simple for developmental disorders. What is the plan? How do we get him help?
Our research lead us to get Michael ABA – Applied Behavioral Analysis. High Intensity ONE-ON-ONE therapy to train Michaels brain to work better in the world we live in. OK – How do we get started? And How are we going to pay for all of that?
At the time I was the sole income provider for my family and I did what most employed people would do – I called HR to get the necessary paperwork started for insurance coverage. I can still remember the daywhen I received the call from the benefits provider and was told TWO WORDS that devastated me. I was told that the company’s insurance policy has an…“AUTISM EXCLUSION” - AUTISM EXCLUSION. Which means that autism therapies, like ABA, will not be covered.
So – in the midst of Autism Awareness and social acceptance, as we are being told to teach our children, family and neighbors acceptance of Autism, the REALITY for families seeking treatment for Autism in OHIO is the EXACT OPPOSITE! They are NOT ACCEPTED. THEY ARE EXCLUDED!
OK…so what do you now? After A YEAR, a Year, of phone calls, emails, meetings with various people from schools and the county, we were awarded some financial assistance for Michael. A YEAR where Michael had the diagnosis but not the critical therapy he needs…and why? Because he has Autism and lives in Ohio.
We are grateful for the funding we receive but it isn’t enough to cover all of Michaels therapy. We made the decision to make the financial, professional and personal sacrifices to get Michael the treatment he needs – ABA – and pay for it OUT OF POCKET. It costs thousands and thousands of dollars.
I am happy to say that it is paying off for Michael. In four months of ABA, we saw significant improvement. Before ABA, Michael could only speak 3 – 4 word phrases; he would bang his head against hard objects, couldn’t follow simple instruction like “Come Here” or keep any eye contact. It’s only been 8 months with ABA and now Michael has greater command of his body, can look you in the eye for a couple seconds, speaks in full sentences, is potty trained, can dress himself. He can even convey his emotions at times and can follow up to 7 directions.
ABA is dramatically improving Michael’s life! And in my opinion, ABA is saving Michaels life! Similar to the way Matthew’s doctors, surgeon, and nurses saved his life!
However, Matthew was born with an atypical heart and was covered under insurance. Michael was born with an atypical brain and was NOT covered.
All children with autism should have access to ABA. They need it and the sooner the better. Michael is doing well but NOT A DAY goes by that I don’t regret not getting him the help sooner. That year that we lost trying to figure out funding that wasn’t available from insurance haunts me. Those TWO WORDS haunt me – AUTISM EXCLUSION.
We have a short window to make a dramatic improvement for children with autism and give them a better chance at a full independent life. Michael is fortunate in that we were able to make the professional and financial sacrifices to get him ABA. But most families do not have the means. Without the help of insurance, most families cannot afford ABA. And their children with autism will not receive this life changing therapy. And WHY?...because they live in OHIO???
Please make the right choice and pass HB 350 so that families with autism in OHIO will no longer BE EXCLUDED but ACCEPTED!!