Dealing with insurance companies can be very frustrating, especially when you’re already anxious about the diagnosis, what is possible, what is covered and what is not.  Although you think you have good coverage, with behavioral and mental services things can be more complicated. Sometimes they do not cover everything: they will cover only a specific amount of hours, days, or sessions of each specific therapy (each will vary), and the rest you have to pay out of pocket.  I found this link to be a wonderful resource to help you understand your benefits and the different types of insurance. A great resource to bookmark on your browser is autismspeaks.org.

Also, take note how much insurance coverage varies state by state. This link is what insurance companies must cover for autism therapies in the state of Texas by state law.

It is unfortunate that I cannot give you a specific answer on this, but I can offer you our example.  Ultimately, you have to do the homework and find out everything you need for your child.  It’s not easy, but it is doable and very enlightening. It is a process of discovery that definitely creates more awareness in you, what you pay for, and what is important in life.

 Therapy is definitely not cheap, but it is priceless.

 Once Martin and I understood how important it was to have the right therapies for Will, we went to work in finding out the right place for him. 

 During our search, I was impressed at how we were seemingly guided to the right place for us.  I was at my beloved yoga studio when I mentioned Will’s diagnosis to a dear friend of mine. She told me how one of her grandchildren also had autism and attended Texas Star Academy in Grapevine (a branch of Easter Seals North Texas that is no longer there. They now have two campuses, one in Fort Worth and one in Carrollton.)  She swore by what they were able to do for her grandson. This was the first time I heard of this place. Since I was a little overwhelmed at the time, I thanked her for her suggestion, but didn’t give the place much thought. The second time we heard about Texas Star was at Dr. Mike Rios’office in Grapevine. Dr. Rios is a developmental pediatrician and we were there waiting to start the medical diagnosis process. While Will and I were waiting, we met a mother with her seven-year old autistic boy who I assumed was normally developing.  Not only does she mention Texas Star, she gave me the name and number of the director, Jessie White.  Her son was proof of how well they worked with children on the spectrum. But still, I did not give it much thought.  The third time we heard about Texas Star was at our last appointment with Dr. Rios. He gave Will a Moderate to Severe Autism diagnosis, and he too mentioned Texas Star. He said it was one of the best places for autism therapy in the metroplex.  I guess third time’s the charm, and we finally decided to give it a try.

At the beginning, it seemed like a dream come true, but little did we know that it would be more than that.  The school was unique. In each classroom, there were 5 autistic children, 10 normally developing children, and 6 teachers.  Each autistic child had a certified ABA therapist and Lead teacher creating programs and lesson plans specific to the child’s needs. Parents got to meet with this team each month to discuss their child’s progress by looking at charts presenting data that gave the team real-time information allowing them to make adjustments wherever it was necessary to continue to make progress. The school even trained us parents on ABA therapy so that there could be a continuation of lessons at home, making even faster progress happen and less stress due to better communication between parent and child.  I believe ALL parents would benefit from ABA therapy training.  This training has been indispensable for us and has taught us so much about empathy and compassion towards everyone.  

 It had been a little under two years since Will began his therapy at Texas Star Academy in Grapevine. He had had nothing but progress.  When he began at the school, he did not respond to his name, he hardly had any words, he had meltdowns that could last 20 minutes that would throw the rest of the day off, and he had fixations with things or activities that made transitions almost impossible.  At the end of our tenure there he had changed into a completely different child.  In fact, Will took the ADOS test again with Dr. Rios.  His original score on the ADOS was a 9 out of 10 on the high end of the Autism spectrum. His new score on the ADOS placed him at a 4 out of 10 on the low end of the spectrum!  The results were just AMAZING!   

Although they were not in our network of providers and we had to pay out of pocket, we decided to work with Texas Star because they were doing such a great job and the improvements in Will were astonishing.  At one point, my husband had received a $9,000 bonus check from his sales job for Christmas and we had to give the whole amount to pay off Will’s therapy. It hardly made a dent on what we already owed. When Stevie got diagnosed with autism too, what was a $60,000 a year therapy for Will, turned into $120,000 a year for both boys. The math made it impossible to pay for the therapy and live. I’m a Spanish instructor at a university and barely make a quarter of that a year.

Yes, ABA therapy is expensive, but well worth it.  Luckily for us, miracles do happen and we got introduced to a wonderful woman and her autistic daughter.  The mother had received her MBA from the university where I teach and they were doing a marketing presentation on campus.  My husband and I decided to attend.  We fell in love with them!  It was especially touching for us when her autistic daughter, then 17 years old, gave a presentation on how much all her therapy did for her.  She was even planning on go to college and hopefully become a therapist too.  It was heart wrenching listening to her story and her uphill battles, but it was amazing to see the success, the peace in her smile.  It gave us such relief and hope that our boys would be able to make a life for themselves too.  You could tell that Sonia, her mother and owner of her place of therapy Pediaplex, was passionate about helping others and was successful at it.  Her daughter was beautiful living proof.

 They gave us their information and told us Pediaplex was in-network with our insurance at the time.  She further reassured us by connecting us with the insurance person at her business who could confirm and help us figure out our benefits. They were in-network and we had a max out of pocket of $11,000 or so for the family.  That meant that if we reached the max, every other doctor visit, prescription, etc. would be paid in full by our insurance company for the rest of that year.  It would start from scratch again the next year, but that was a HUGE relief for us. 

Emotionally, I was still very much afraid that changing the boys from Texas Star to Pediaplex would not be enough for them. I had seen it work and I was so blinded by the progress Will had made at Texas Star, that I could not see in my mind how he could make such improvements elsewhere.  It turned out that one-on-one therapy was the best decision we could have made for BOTH boys. This is how I learned to trust that when one door closes, another one opens.  I learned to trust the process and the flow of life.

Although we had resolved the place of therapy and insurance issue, we still had gotten into really bad debt.  We had to sell our house and move into a two-bedroom apartment.  It was not an easy decision, and it was painful to have to sell all of our furniture to start again in a much smaller place, but it was exactly what we needed to do. It saved our family.  It was the closeness that we all needed to experience and it helped bring focus to the important things in life.  Us. 

Yes, we are still trying to pay off our debt, but we’re on our way.  Would we do it all over again?  Absolutely.