....aaaand the fighting continues
If there's anything I've learned over the past 6 months, since Holden's diagnosis, it's that you don't get anything unless you fight for it. I've been going back and forth with Early Steps since last Monday - 10 days - about Holden's services. He was approved because there was a NEED. Yet, it's like pulling teeth to get them to send an approval to providers. See, it must be on their terms. The fact that home-based therapy didn't work for us over the past 6 months (3 therapists, only 50% of the hours used due to therapists not showing, and starting services LATE, and, excuse me for being blunt, but crap services), means nothing to them. I was told today by the provider I chose that they could't get an approval because they weren't willing to drive this far to give us home-based therapy sessions. Um, hello?! Last Friday, I was told that the services AT THE CLINIC would be approved. Now, they're telling me that's not an option. That it's a federal mandate that it has to be home-based. Well, wtf people? How come the assistant director didn't know that 5 days ago when she told me all was well and she would send the approval for CLINIC based services? When I got off the phone with her today, I cried. I cried because of frustration at the system. The "No Child Left Behind" act. Cause, honestly, my child is being left behind. My child sits and waits while they get their shit together. My child suffers because they don't have competent therapists through Part C to provide services. My child is left behind because he has autism. It's not fair. I cried because it's painfully clear to me already, at the ripe old age of 2 1/2, that nothing will ever be easy for him. I cried because I feel like I fight so hard to get him what he needs and deserves, as every other kid does, and it's all a bunch of paperwork-federal mandate-bullshit. I cried because this is such a critical time in his therapy/development and he can't get what he needs. I cried because I can't get a straight answer and I feel like I'm on a rollercoaster that won't stop. I cried because I know there are other children who are doing clinic-based therapies (Holden being one of them, for OT) and now they're saying MY child can't. I don't understand this system that's supposed to help our children. I don't understand the "No Child Left Behind" act. Especially when my child is being left in the dust.
Posted by -Rhonda