Movement or Communication?

If you have a typical child, would you force him not to speak for 4 months? Or would you let him speak but force him to be immobile for 4 months?

This was the choice given to me today by Nathan’s CCS coordinator. I am LIVID.

Let me back up. I posted the videos of Nathan playing with the communication device. Do you see the potential? Wouldn’t it be awesome if, with practice, he can tell us what he wants to eat, play with, he can play games, he can learn to COMMUNICATE! Imagine if you can’t speak at all – how frustrating would that be!

So I called today to figure out the funding situation for the communication device. Here’s what I found out:

– For his primary insurance to pay, we need pre-approval. This consists of a bunch of letters and medical examiners etc. I highly doubt they will approve – they didn’t approve for his walkers and a bunch of other things. But of course we will try.

– For Medi-cal to pay, we need to go through CCS. For CCS to be able to qualify, he needs to be enrolled in the local CCS medical unit. He qualifies for it but we haven’t enrolled him in it. The reason why is, if he is enrolled in the CCS MTU, he loses his physical and occupational services through Regional Center. Regional Center is what pays for the therapists to come to our house to work with Nathan. His therapists are WONDERFUL and Nathan really enjoys his PT/OT every morning. Every single day at 8:30 am Julie or Natalie come and he gets to work with them. They’ve taught him to roll, side sit, they’ve kept him stretched and stimulated. I know ABR and some other modalities don’t believe in traditional physical therapy. But for Nathan it has been wonderful – he loves his therapists and more than therapy it’s play time for him. He knows they will not stop when he whines and cries so he behaves very well for them!

Anyways, if we decide to enroll in the CCS MTU, we lose our in-home therapies through regional center. If we do not enroll in the CCS MTU, they will not pay for his communication device. They will not even give him a denial letter for me to seek funding elsewhere because for a denial letter he needs to be in the MTU.

So his coordinator’s answer was – you need to decide what’s more important to you. If you think the in home physical therapy is more important, then he’s going to have to wait to start the process for the device. It’s only a few months anyways. A few months. A FEW MONTHS! Shows how little these people care. What if I took her child and taped his/her mouth shut? Would that be acceptable? This communication device will BE Nathan’s VOICE. But in her mind, there are no issues with having him wait 5 months to START the process (which will then take a few more months before he actually gets the device). And if we join the MTU and lose our in-home therapies, the alternative they provide to his 7 hours of OT/PT are 2 30 min sessions / week. HELLO?

I am LIVID. These people need a heart. But you bet I will fight. My first phone call tommorrow – LAWYERS. Watch out you heartless, ridiculous, ignorant people! You’ve messed with the wrong mama.