When I received my first phone call of the day on Monday morning, I was on location outdoors for a video shoot for work in Washington DC. And so it began.
That call was from my HR representative to tell me that Aetna was indeed denying coverage of the UCLA program. Meanwhile, Michael was already on his way to UCLA back in LA. I felt like disappearing. I had NO idea what to do or who to call for help. I felt panicked, desperate and hopeless. We got so close we literally could taste it, and now my son's best chance of improving his future was taken away. I got angry. Really angry. One of my colleagues at the photo shoot asked me what was wrong. When I told him, he got angry too. He told me about his dad, who is an advocate for people with disabilities in Michigan. He asked if I minded if he called his dad. Of course, I was open to anything.
He got his dad on his cell and told him what was happening, then he handed me the phone. Within the next five minutes, that man became one of my angels. He said to me "This is NOT over. You get on the phone right now with your senator's office and your congressman's office. You tell them this is an emergency and you need their help now. Tell them that you need them to intervene and tell Aetna to resolve this matter immediately. They can write a letter to the CEO. Then you start gathering your notes from your calls with Aetna and get ready to appeal." I had no idea I could call my senator or my congressman for such help. He lit a fire in me that day and gave me the confidence and knowledge I needed to reach out for help and not stop until I found a solution. I will be forever grateful to him.
I excused myself from the photo shoot, as this was a family emergency if ever there was one. I situated myself in the grass on a hill in the DC heat, armed with my cell phone and some scrap paper I had in my purse. I made and received 72 phone calls that day. Many back and forth to my senator's and congresswoman's offices. Some calls were to other advocacy groups. Many calls were dead ends. But I would keep dialing until I found more people who could help. I also cold-called the benefits director at the holding company in New York that owned my company. I called the main number I found online and kept getting transferred until I found his office. I kept calling until I got him on the phone. He had the power to make Aetna pay for my coverage since he managed the self-funded plan. He refused, but strung me along by telling me that he would have Aetna look into my issue further, and to look for their notes and recordings of my calls.
By the end of that Monday, letters from my Senator and my Congresswoman had been faxed to the CEO of Aetna urging them to attend to my matter immediately. I had Aetna "searching" for their notes, and I had gotten another 24 hour stay of execution from UCLA - they agreed to not give Michael's spot in the program to another child until end of day Tuesday. But sadly, they asked him not to come back until we were admitted. I couldn't blame them, so I thanked them.
At the end of his second at UCLA, Michael's dad came to pick him up. He started clearing out his cubby and packing up his things, including the picture of Michael glued to a big yellow star that was hanging on the wall with the other four kids in the program. Michael got upset and said "No Daddy - that's my cubby. That stuff stays here!" Michael's dad explained that we would bring this stuff home and we might be going back to his old school. Michael said "No Daddy! Call Mommy. She'll tell them I can stay!" When I heard that from 3,000 miles away, my heart melted and I promised myself that I would not stop until he was back in that program, with his picture on that wall and his things back in that cubby, no matter how long it took.
On Tuesday, there were more phone calls, more tears, more ridiculous conversations. I knew I wasn't crazy, they HAD told me TWICE that we would be covered. They quoted my plan document (which I did not have a copy of) and said that there was an exclusion for "services and treatments relating to learning disabilities and developmental delays". I asked them where it said there was an exclusion for Autism. It didn't. I asked them where it defined in writing that Autism is in fact a developmental delay. It didn't. I asked them if there was a problem with Michael's Medical Necessity pre-certification. There wasn't. They told me it was an administrative decision, not a medical one. WHAT??? How could this be happening? It was like trying to reason with a rock. On my way back to the airport to fly home, I received the most insulting call of my life. It was someone from Aetna who I hadn't spoken with before. She said "Sorry for your inconvenience, but we couldn't locate our recordings since they were probably deleted, and our notes from the dates of your two phone calls were inconclusive. Therefore, coverage for Michael for the UCLA program is denied. But feel free to appeal." INCONVENIENCE?!?! I admit it, I totally lost it on that woman and my metro car driver must have thought I was completely nuts. I continued to scream into the phone at the curb outside the airport, to the point where a police officer gave me a sideways look. But the woman on the other end repeated "I'm sorry for your inconvenience. I'm hanging up now." CLICK.
I cried all the way home behind my sunglasses on my Virgin America plane. I didn't care who saw me. I had just failed my son and I had no idea how to face him when I got home.
To be continued...
