A person's a person, no matter how small.

I've been thinking about that Dr. Seuss quote today, as we muddle through another round of diagnosing and insurance questions.

On Monday, we took Emma and Daniel to a neuropsychologist for Autism Spectrum Disorder (ASD) testing. Dr. V at the Clinic was friendly, approachable, and made the children (and grown ups) feel at ease. She observed Daniel and Emma while they played, and took notes. Yesterday Adam and I met with Dr. V without the twins, and answered a series of questions from three different autism assessment tools, and provided information about Daniel and Emma's medical history.

Today Adam and I met with Dr. V to go over the reports.

The good news is, Daniel has not been diagnosed with an autism spectrum disorder.

The expected news (even if it is still hard to swallow) is that Emma was diagnosed with autism. We learned that Emma has the communication skills of a one month old and shows what were explained to us as the "classic signs" of early onset autism.

In many ways we were hopeful for a diagnosis, as Madison is an incredible city to live in when it comes to services for people with autism. While, of course, no-one wishes their child to have any kind of neurological issues, this would be a blessing in disguise. There are a multitude of options for infants with these kinds of diagnoses. With a diagnosis, we could get insurance to cover intensive therapy, which is what Dr. V recommends. Specifically, Dr. V said "The earlier and more intense her services, the greater the chance of her improvement in communication, social, motor, play, and living skills development." 

So, you can imagine my despair, when our insurance company declined coverage based on the Wisconsin mandate that Insurance companies are required to provide a minimum of $50,000 per year for intensive level therapy to children aged 2 to 9 for a minimum of 4 years. When I told them I needed to appeal that decision, I was told I needed to appeal to the state to change the mandate. This infuriated me! The mandate is there to make sure that services are provided to the most at-risk group, but to suggest to me that it is that mandate that means a child UNDER 2 should be denied is ridiculous. It saddens me to think of how many people have heard this statement and not felt that they were able to appeal. When I told them I would still be appealing, I was told that I would not be successful. I have NEVER had such a fire burning inside of me. If two doctors from within the insurance companies own system recommend intensive therapy, then intensive therapy is what my daughter will receive. 

Today we started the appeal process, and asked Emma's pediatric neurologist and neuropsychologist to write letters of support, and I will actively challenge the notion that insurance will not cover a child under the age of two by hiding behind a mandate that the state implemented to protect children rather than prevent them having access to services. 

I would be very interested to hear from other parents whose children have been denied for this reason. I believe that it is unethical for insurance companies to use this clause as a shield. 

We will not allow Emma's diagnosis to define her, but we will fight for her to receive the absolute best and most appropriate treatment available.

In the immortal words of Dr. Seuss, “Unless someone like you cares a whole awful lot, Nothing is going to get better. It's not.” 

Much love,

The Morgans x