Thursday, June 6, 2013

The right to speak

We were denied for the Tobii when we submitted our first request back in January. We then spent several months doing a Tobii trial, and also trialling a Dynavox Eye Max which is a similar machine, but inferior. In the denial letter it stated that there was not sufficient evidence that Lu could use such a sophisticated device. We recently submitted an addendum to our original request that included a detailed assessment showing Lucy's ability to use the Tobii which was done by Dr. Sasha's speech therapist. In addition to that, our speech therapist included a detailed report on how well Lucy used the Tobii in the three weeks that we borrowed one. That is all in addition to the first report by Danielle and another report by Dr. Sasha's first speech therapist also stating Lucy's ability to use the machine. 

But, on Tuesday I was told by the Tobii funding lady who has been helping us, that Gateway, Lucy's medical assistance insurance, was going to deny it again.  Gateway told the Tobii lady that they had called Dr. Sasha's office and said they needed to speak to her by 4:00pm on Tuesday to do a "peer review" and if they didn't talk to her they were planning on denying it.  Dr. Sasha did not get any such message and knew nothing about it. She said that sometimes insurances will do that to get out of paying for things. She is seeing what she can do about it today. She has already told us that she will call as high up as she needs to and explain why it is so important that Lucy be able to tell us things immediately and independently. 

But why on earth should she have to! It is not rocket science why it might be important for a person to be able to independently communicate their needs. Does every person not have the right to "speak"?Yes, Lucy does a bang-up job communicating with her PODD, but that requires a partner to be sitting right there in front of her turning the pages and interpreting her signals. With the Tobii, Lu simply looks at it and finds what she wants to say. Not only that, but her PODD can be put into the Tobii, so she can continue with the language she is familiar with. We have shown that she can use it 10 ways to Tuesday, and they still want to deny her. 

It literally makes me sick that some stranger somewhere is just sitting around in their office deciding that Lucy is not worthy of the right to speak. Like, not everyone has the right I guess. I find that decision to be so incredibly offensive I am just about beside myself. I have woken up the past two mornings tense and anxious just wanting to know something. On top of that, Lu hasn't had a BM since Monday morning for no evident reason other than Rett Syndrome literally hates her guts this week. I have not given her too much cheese, I have given her all of her poop medicine, plus green smoothies full of spinach all week, and a prune and apple smoothie this morning and she still hasn't gone. 

Dear Medical Director of Gateway Health Plan,
My daughter can't use her hands, walk, or even take a poop sometimes, ON TOP OF NOT BEING ABLE TO TALK!!!!!!! Could she just have a freaking Tobii eye gaze machine? Could one thing in her life just be simple for her? Could it? 
Her loving mother

Here is a link to see what all of the fuss is about and a picture of the coveted machine:

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