Written by Trish Thrush, WAAA Health Law Advocate (Insurance Navigator)

Six years ago I knew very little about Autism, Insurance or Special Education. The phrase “you don’t know what you don’t know” has never been more true than the day I was handed a diagnostic report for my five year old daughter, Lina. My concerns were finally confirmed; Classic Autism, Anxiety Disorder NOS and ADHD.

I had known for a long time that something was making life difficult for my daughter so getting the diagnosis was mostly a relief. It hurt, of course it did, because I didn’t want her to struggle. I didn’t want simple things like wearing a shirt with a tag or having the wind blow over one of her toys to be so hard for her. Mostly I was happy about the diagnosis. Finally! I would get a map -the diagnostic report- with clearly defined instructions for how to help her. Right?

The diagnostician had prescribed Applied Behavioral Analysis, Occupational Therapy and Speech Therapy. She had recommended placement in general education with a paraprofessional, social skills support and positive behavioral supports. Sounded good to me. Surely the insurance company and the school would already have done this before. Yep, I could handle that. As Lina would say, “Easy peazy lemon squezy.” Savvy Autism parents I can hear you shaking your heads and laughing at this point. I don’t blame you. I had never been more wrong.

The next day I called our insurance company, Aetna funded by the City of Seattle, and requested referrals for the prescribed treatments. The customer service representative told me our insurance was self-funded which meant the employer chose the benefits in the Plan. Our employer, the rep said, had chosen to exclude ABA and to limit Neurodevelopmental (OT/ST/PT) services to age seven.

Lina was just about to turn six so this meant she would only be able to access Neurodevelopmental Therapy for little over a year and she wouldn’t be able to receive ABA therapy unless we paid for it out of pocket. At the time we lived in a rural area and the only providers were an hour to two hours away most with waitlists that were over a year. I had the sobering realization that by the time we got intervention for her the insurance company would deny it.

Surely that couldn’t be right, could it? Insurance companies weren’t allowed to just discriminate against children with special healthcare needs. No way. It’s the twenty first century. Obviously there had to be laws preventing this. Lina had rights, didn’t she? There had to be some mistake. I just needed to let the City of Seattle know about this and it would be taken care of.

I called the City of Seattle’s Benefits Department. Uh oh. Wrong again. They already knew about the Plan limits and Exclusions and had no intention of changing it. I remember crying, holding the phone and staring at it like a magic genie would pop out and help me. As soon as my tears dried I became furious. How dare they do this to children who needed help? Didn’t they know this was wrong? Either way I was going to stop them. I just had no idea how I was going to do it.

Later that afternoon I attended my first IEP meeting. Unfortunately the school was not prepared to implement the recommendations from the diagnostician. They were placing her in a secluded classroom with other students with disabilities. Well, they were the professionals right? They knew what they were doing. Of course they did. I was just uneasy because this was all so new. I signed for the IEP and went home feeling defeated, exhausted and nauseous… wait nauseous?

That evening I took a pregnancy test. It was positive! I was overjoyed but also apprehensive. I was so stressed about the insurance denials and the secluded classroom that I wasn’t sleeping or eating well. I knew the extreme stress would not be good for my baby and I was right. My health suffered and I barely had enough energy to get out of bed in the morning. Adding to my fatigue Lina’s reacted adversely to the changes happening in our house. She started to become violent towards me and had meltdowns for hours. One day she came through a door and could have really hurt herself. Thank goodness for cheap manufacturing.

Desperate for help we saw a counselor who recommended institutionalizing her for the sake of my unborn child. I’m afraid my reaction to that was less than ladylike but who could blame me? I was hormonal, exhausted and what he had just suggested sounded like abandoning one child for the sake of another. That was the last straw. We couldn’t wait anymore and no matter how tiered or how sick I was I had to do something. I started calling every disability rights and advocacy group I could find on the Internet. If you’ve done a similar search you already know I made hundreds of calls and it took weeks.

Not being able to get intervention for my daughter was a weight I carried with me everywhere I went. It was my job as her mother to make sure she got everything she needed to grow up and be a happy adult. I felt like I was failing her and it was a terrible feeling.

We finally found an ABA provider and a great PT who worked with sensory sensitive children but the out of pocket costs were high. We had to choose between the bills and therapy. Essentially we were being forced to choose between basic necessities and Lina’s future.

I knew there had to be someone who could help us and thankfully there was. Many of the places I called recommended I call Arzu Forough CEO and Founder of Washington Autism Alliance & Advocacy and Ele Hamburger, an attorney with Siranni Youtz Spoonmore Hamburger.

I have never been so relived than the first time I spoke with Arzu and Ele. They had the map! They were the genies I had been looking for. They gave me clear instructions on what to do. I had been right that there were laws preventing insurance companies from discriminating against children with Autism. The Federal Mental Health Parity should have made it impossible for Aetna to exclude medically necessary treatment for children with Autism but I soon realized there was no enforcement when insurance companies violated this law. I would need to appeal and potentially to litigate to enforce Lina’s rights.

Insurance advocacy was so far out of the realm of my knowledge that it was pretty confusing for me. It took repeated explanations from Arzu and Ele for me to understand the process. They took my repeated calls and emails and were both encouraging and patient. They didn’t know Lina and received no financial compensation. I couldn’t believe there were strangers as generous and compassionate as they were. They spent countless hours volunteering their time to help us over a four-year period and we won! The City of Seattle agreed to remove the limits and exclusion in all of their plans.

At the same time Arzu helped me to realize the IEP we had in place for Lina wasn’t sufficient and that Lina had regressed significantly. It turned out I had a reason to be uneasy with the secluded classroom. Arzu taught me how to positively advocate for evidence based instructional practices. From her I learned that knowing how to be an educational and insurance advocate are skills that a parent will use throughout their child’s lifespan. Kind of like car maintenance. It takes time and can sometimes be confusing to learn but it’s something you’ll use thousands of times.

At age three our son Devin was diagnosed with Autism. When the insurance company denied his treatment and the school denied special education services I knew exactly what to do. I had the map this time and knew where to go if something wasn’t on the map. Okay fine, yes, I have been watching a lot of Dora the Explorer recently. Too bad there’s not really a magical map you can call when you get lost…oh wait GPS. Somebody really needs to get Dora a GPS. And I really need to get out of the house more often, obviously.

Anyway now Lina and Devin are doing incredibly well thanks to the medical and educational intervention they’ve benefited from. Lina’s diagnosis of Classic Autism has changed to Autism Spectrum Disorder Severity Rating One (Asperger’s) and Devin attends full time general education Kindergarten with minimal support. These two things are HUGE indicators of how far they’ve come and it would not have been possible without the support we received from WAAA.

When Arzu gave me the incredible opportunity to help other families experiencing insurance discrimination I jumped at the chance. I know firsthand how confusing and overwhelming it can be. I’ve felt the terrible weight of feeling like you’re failing your child when you can’t get them what they need. It’s amazing to be able to help other parents learn how to navigate the insurance advocacy process the way Arzu and Ele helped me.

I feel fortunate to be part of such an amazing group who care so much about the future of children with Autism. The best part of my day is talking to parents who need help with insurance and knowing that after they hang up I’ve given them the things Arzu and Ele gave to me; compassion, understanding, support and most all hope.