I don’t even know your last name, but you nicely spelled your first name for me. You could not have been kinder or more helpful, I guess that is why BCBS picked you to call me, gentle, courteous, thoughtful, and extremely helpful. If I had to spend over two hours on the phone with someone, I would have chosen you. In fact, now that I have your direct line, you may come to regret my admiration. It’s stops with you though.

Today before we talked I got two letters. The first was from our Governor; I have been officially appointed to be on the NC Board of Families with Children with Special Health Care Needs. It is a board I never knew existed, a group of parents that I had admired from afar, relieved I wasn’t in their club. Once my fourth child Amos secured my membership, I knew that to raise my voice was never even an option. I look forward to meeting every other month with the other dozen families and hopefully share the voices of the many people I know that I now admire from afar and call my friends.

My second letter was from my augmentative communication device coordinator; she is the one that has been so awesome and helped us figure out the best communication system for our nearly three year old son Amos. It is essentially a durable and lightweight computer so that he can tell us what he needs. It has been incredible and the agency she works with, the NC Technology Assistance Program, very kindly lent us a device to try and use while we waited for BCBS to approve the small box that gives Amos a voice and he can call his own.

The denial letter from BCBS was clear. The four reasons for denial were interesting but far from valid. Do you always say no when a member requests a device that costs thousands of dollars? I don’t blame you really, but did anyone think when they wrote that letter about the mother on the other side that was reading it? Truthfully, I expected it would have bad news, par for the course when you have a child with special needs and the insurance company sends you a letter. Everything feels like an argument, a fight, a battle. I wish it didn’t have to be that way.

Katrice, I appreciate your taking the time to note my concerns and asking me to read the denial reasons to you. Shakily, I read them to you one at a time. One, Amos is making progress in therapy. Yes, he is and at nearly three he now has three to six words, better than zero, I guess. Two, there is no evidence he will need this for his lifetime. No, there’s not and if there’s anyone that longs for his words to come it is me. Do you also now have to make me argue that it is hopeless to ever believe he will speak? Thank you for that. Three, we need to rule out other treatment modalities. Yes, we tried an iPad but his poor fine motor skills left him choosing the wrong things and his choice is the most pertinent reason to have a device. The last reason was the most heartbreaking; it’s “not clear if cognitive and physical abilities are adequate for the use of the device.” How can your own reasons contradict themselves? On one hand, he may not need this the device in the future and on the other, he is not even capable of using it today?

Katrice, I think you understood how this felt like a punch in the gut to this mother. You encouraged me to appeal and request a peer to peer review which is what we always do to argue the denials that come our way. You spent an exorbitant amount of time going over my therapy visits and I appreciated your soulful silence when I told you that I couldn’t decide what type of therapy to choose for his remaining five visits. I wondered aloud, should he get more help with walking so he doesn’t fall so often or would it be better to learn how to eat with utensils, now that he’s almost three years old and only has five visits left for the rest of the calendar year. In the compassion you demonstrated following my question, I felt your empathy. Just two mothers talking, one sharing her greatest hopes and fears.

You heard my complaints regarding your company’s travel blog and you did not argue when I commented that BCBS seems more interested in where my dog goes for the weekend than if Amos has an opportunity to communicate. You told me there would be no more travel blogs, I guess my complaining finally drove someone crazy. That’s something I guess. Thank you, Katrice. I may not know your last name but you made a mother feel heard today and I wish for you and me that you worked for a company that gave a damn about my son. He is wonderful. I just want him to reach his potential and if anyone inspires hope, it is him.

Sincerely,

Adrian H. Wood, PhD