Wednesday, January 13, 2016

Autism and Health Insurance - Part 3

After 17 months, 5 trips to Detroit, numerous evaluations, autism diagnoses from two speech pathologists, two neurologists, and six psychologists, and $3000 in health insurance premiums with no therapy benefits received, Blue Cross Blue Shield has finally approved Emery for ABA therapy.

This has been a long, frustrating, heartbreaking, and exhausting road. In addition to the above, numerous hours have been spent on phone calls, emails, research, travel, and appointment. Continuing from where I left off from Part 1 (March 12, 2015) and Part 2 (March 19, 2015), following Emery's evaluations at the AAEC (Approved Autism Evaluation Center), we received a written report from the AAEC with a diagnosis of ASD. By this time, it was already two weeks into July, 2015. Nearly one year from when we initially started on this road. Report in hand, I contacted three BCBS approved ABA Therapy facilities in Grand Rapids. All were filled up for the Summer. One facility suggested I begin the admittance procedures right away so I can get Emery in therapy in the Fall. I emailed the report from the AAEC and completed all necessary paperwork.

I was immediately contacted by the ABA facility (Behavior Analysts of West Michigan - BAWMI) letting me know that a BCBS required form was left out of the AAEC's report. I contacted the AAEC. At this time I was told that in addition to the AAEC's psychologists diagnosis, BCBS requires an evaluation and autism diagnosis from a neurologist and a speech pathologist in order to receive the completed form. Ugh! Seriously. Whether I missed this information somewhere during this grueling process or it wasn't explained to me, is a mystery. The AAEC said I could send the most recent evaluations that I already have from Emery's current neurologist and former speech pathologist. I obtained the reports and emailed both reports in and specified to contact me right away if any additional information was needed. The AAEC acknowledged receipt, stated the reports would be reviewed and the required form would be issued within 3 weeks. Three additional weeks seemed like forever, but we were leaving on a week long vacation, and I didn't want to stress about it.

We enjoyed our vacation and waited out the remaining weeks. A few days passed by the 3 week mark, then I contacted the AAEC. I was told the neurologist report was accepted. The speech pathologist report was not accepted because it was not within the BCBS time frame. The report was dated in January, 2015 and fell out of the 6 month time frame imposed by BCBS. It fell within the time frame of the AAEC's evaluation and report. But was not considered valid because it was outside of the time frame that the required form would be dated. So BCBS was requiring Emery to have another evaluation by a speech pathologist. I am not even kidding you. This was absolutely ridiculous. I was so angry and upset. But, what could I do? I had already paid $1500 to BCBS in insurance premiums and still could not get Emery into therapy. In case you didn't remember, you cannot even schedule an ASD evaluation with an AAEC until you have insurance that covers ABA therapy. So as I am paying monthly premiums, for the sole purpose of obtaining therapy, BCBS is making me jump through hoops to even get the therapy approved. CRAZY!

Why would it take so many hurdles and so much time to receive services to treat autism? Because this is what BCBS of Michigan requires for a child with ASD to receive treatment. Not only do they decide which psychologist provides your child's ASD diagnosis, they also require a second diagnosis from a neurologist and a third diagnosis form a speech pathologist. Why are the second and third diagnoses even required? Does BCBS not trust the psychologist that they made you go to in the first place? hmmm?

Just to let you know, this BCBS of Michigan. Apparently, such requirements are not necessary in other states. For example, in Illinois, a diagnosis from any licensed psychologist is sufficient to obtain covered ABA therapy for your ASD child. If Emery's insurance was through BCBS of Illinois, she could have started therapy in September of 2014. Hard to believe and so difficult to swallow.

Now, I understand that ABA therapy is extremely expensive. For an insurance company to be mandated to cover such costs is daunting. Never mind the fact that this therapy has been proven to be the most widely successful treatment for ASD, but aren't all medical treatments expensive? What if insurance companies put a recently diagnosed cancer patient through all of these hurdles? Isn't cancer treatment extremely expensive? Well, we all no the outcome if cancer were treated like ASD. What about heart patients? I nearly lost a close friend this past Summer to an undiagnosed heart condition. Seriously folks, she coded twice in the hospital. Thankfully, she pulled through. Do you know what her 17 day stay in the hospital cost her insurance company? Just under $400,000. Was her life worth it? I imagine her 3 year old daughter thought so. She has insurance. Does she have a right to treatment? Should an insurance company have the right to deny treatment? Isn't that why we have medical insurance? To cover the high costs of treatment when we need it?

In addition to the high cost argument, another comment I heard in defense of all the hurdles to obtaining ABA therapy for our ASD kids, almost makes me laugh (you know, if I weren't so emotionally drained from this ordeal). "BCBS needs to be certain medical professionals are not diagnosing autism randomly." What? Why would doctors be diagnosing such a serious condition randomly? "Some parents might push for a diagnosis." What? If they truly believe their kid has autism, yes, maybe they are pushing. But, why would any parent in their right mind want to subject their child to numerous evaluations and hours and hours of intense therapy, if their child didn't need it? I know there are hypochondriacs out there, but seriously? It was recommended that Emery receive 20 to 24 hours of ABA therapy per week. Why would a parent want to put a kid in therapy for that many hours for no reason? I cannot believe that all of these hurdles to obtain services for ASD are in place to prevent unnecessary ABA therapy treatments.

Sorry, I'm ranting and getting away from my story.

So, we are now near the end of July and need to get Emery evaluated for autism by a speech pathologist. I first made certain I had an accurate list of BCBS approved speech pathologists. Trying very hard to avoid any unnecessary bumps, as the insurance company has already placed too many in this path. My first contact was to DeVos Children's, a designated BCBS autism center. They did not do just speech evaluations for autism. I contacted Pine Rest, another BCBS designated AAEC. They didn't provide just speech evaluations for autism. Both facilities stated that the evaluation had to be part of the entire ASD evaluation. Pine Rest did give me the name of a speech pathologist they used for their evaluations. The pathologist also had a private practice. I contacted her. She was very willing to evaluate Emery for ASD. Problem: She was not approved by BCBS. ugh. She contacted Pine Rest for me, to see if she could schedule an evaluation through their facility, so it would be covered by BCBS. They told her no. I contacted them myself and practically begged for an evaluation. I spoke to the manager. He told me they would not do the speech evaluation because BCBS was denying payment for the service. What? BCBS is requiring an evaluation that they won't cover? Seriously? The manager said they had a backlog of unpaid BCBS invoices. I understood where he was coming from. Why would he perform a service that he wasn't getting paid for? He told me he would check to be sure and call me back. Never heard from him. I contacted two more pathologists. Same story. BCBS was denying payment.

So here I was, stuck. I kept googling speech pathologists and calling. I finally found a place that would evaluate Emery and deal with BCBS from their end. The place, Comprehensive Therapy, got her in right away. By now it was the first of September. The evaluation was completed and I received the written report about three days later. I immediately emailed the report to the AAEC in Detroit. They contacted me and said the report would be reviewed and if it was accepted, I should receive my complete autism diagnosis in 3 weeks. So more waiting.

I received the final complete autism report from the AAEC by the end of September, which included the form I needed. I contacted the ABA therapy place (BAWMI) and they prepared the paperwork to forward to BCBS to obtain the approval they needed on their end. During October, BAWMI received the insurance approval and Emery was scheduled for their evaluation the beginning of November. BAWMI had to provide BCBS a recommendation of the number of hours per week Emery needed of ABA therapy, based on the evaluation. BAWMI recommended 20 to 24 hours per week for Emery. By the end of November, the approval was received from BCBS. BAWMI was closed over the holidays, so they recommended starting Emery's therapy the first of the new year for transition purposes. We agreed this would be best.

So on Monday, January 4, 2016, Emery started ABA therapy. We love BAWMI. It is close to our house and Emery loves going there. She goes to therapy 3 days per week from 9:00 to 5:00 and attends school the other two days. Her transition was seamless. I was so grateful for that.

So after 17 months, Emery is finally receiving the intensive therapy she so desperately needs. It still bothers me that she missed out on nearly a year and a half of therapy. If BCBS of Michigan accepted Emery's original autism diagnosis, she could have started ABA therapy in September, 2014 and saved a lot of time and resources. My heart goes out to parents battling insurance issues associated with autism.

Disclaimer: Since I am memory challenged, I had to go back and check my calendar and notes to complete this 17 month timeline. So, if I miscalculated anything or misspoke somewhere in these posts, please cut me a little slack. :)

Friday, January 1, 2016


We are still having issues with Emery. The increase in fluoxetine had zero effect. We ended up bringing her back down to her normal dose. We then began reducing her clonodine and slowly adding guanfacine. After many ups and downs and an appointment with the neurologist, we now have her on the maximum dose of guanfacine and completely off clonodine. I am still playing with the timing of the doses. She gets 4 pills per day and they can be taken all in the morning or some in the morning and the balance at lunch time. Splitting them two and two did not work. The two in the morning did not calm her down enough. Four in the morning knocked her out for two hours. We just tried a three and one split. She was more balanced today. Will try it again tomorrow. We still have not completely got rid of the throwing, hitting, poking and pushing. Although there has been a significant reduction. Her face pressing seems to have increased a bit, but her focus has improved. She has been able to focus on her iPad apps more often and for longer periods. Her spontaneous talking has also increased. Not sure why that is, but we all enjoy hearing her voice more frequently. The neurologist believes she has impulse control issues as opposed to aggression issues. With aggression issues, the harm to others is usually accompanied by anger. This is not the case with Emery. She is almost giddy when she hits, pushes, pokes, throws. This doesn't not help the recipients of this behavior at all. It does help the doctor determine what type of medication to try. Her behaviors became so bad the last week of school before break, I had to keep her home from school 2 and 1/2 days. She is still pulling out her hair. She basically has about a 2 inch strip of baldness in the back of her head that runs from the top to the bottom. This is the third fall/winter that Emery has had some sort of hair loss issue. So many unknowns with this kid. She did well through the holidays and really enjoyed unwrapping gifts, visiting Santa, making cookies and celebrating New Year's Eve. She also has been more interested in doing things for herself. She has dressed herself most days over the break and even has brushed her own hair and cleaned her own eye glasses. She still occasionally gets her shirt on backwards, but other than that, does a good job. I also have her doing her own showering. She still needs several prompts and help with rinsing her hair, but she does fairly good with everything else. My next step is to divide the entire showering process into sections, print picture cards for the 4 or 5 steps per section, and start one section at a time having her complete the steps with no prompts. It is a slow process, but she will get there. Despite all of her issues, Emery is a happy and loving kid. She wants to sit on my lap several times a day just to be held and cuddled. She is not happy when I leave the house without her. When I return, I get kind of a look of disgust from her. But, within a few minutes, she puts her arms out to be picked up and I get a very long big hug. Yes, I can still pick her up at 60 pounds, but I know that time will be over soon. So I hold her any time she wants. It's amazing how much you can love such a high maintenance little being :).

Hope everyone enjoyed the holidays. I can't believe we have to get back to normal in just two days. It goes by so fast, but is always a lot of fun. We took the Christmas tree down today and undecorated the house. Big project! Still have to put away all the Christmas dishes. On my list for tomorrow. I am officially rejoining the workforce on Monday, after 12.5 years of being a stay at home mom. Only part-time, but I really need to get organized on Sunday so I can still feed everyone next week, send them to school in clean clothes, and hopefully not forget to pick up anybody from anywhere! Should be an interesting change to our household. Probably will need a few prayers!