Not Ready!!!!

Wow, things have been really rough. Grace  has really been struggling. We went to visit last weekend and she had been in trouble at Hogwarts. When they brought her out to visit with us she was wearing some awful sweats and a t-shirt. I asked why she was wearing these awful clothes? I was told she was on restriction and while on restriction she can't wear her own clothes. Grace got really rude with the staff member who brought her out to me. I told her if she was going to talk to her like that that she could just stay in the awful clothes. She apologized to the staff member, they did let her change into her clothes for our visit after she changed her attitude.
 This last week I couldn't make the drive down for family therapy. We did a phone conference instead. I was already a little nervous about therapy because Grace's regular therapist was on vacation. The call started out just with some small talk. Then Grace started to complain about the other girls in her group. She got really worked up very quickly about how awful they all are. Then she started to say how much she hated all of them. I tried to distract her and move to another subject, but she wanted to talk about coming home instead. Grace then got completely stuck on talking about when she would get to come home. I told her that we needed to talk about other things before we would be ready to talk about her coming home. She just lost it and shut down. It was so hard because I couldn't see her and read her body language. Finally I said that I felt that it was best for me to hang up. She just started to scream and beg for me not to hang up. That is when you know that you have to anyway. I just hate seeing or hearing her like this.
 After our disaster of a phone call I got a call from another therapist at Hogwarts. I was informed that insurance had denied more time and we needed to be prepared to pick up Grace by the end of the day!!!! I was shocked!!! I really was not excited to go and bring her home when the last thing I heard from her was screaming. I lost it and just started to cry. How could this be happening? I started calling everyone from the school to the insurance company. I finally after tons of phone calls found the right person to talk to and they were able to authorize another day while they figured out what was happening. So in the end what I learned was that the therapist should have never called me and said insurance hadn't come through and he should never had said I was going to have to pick her up. He jumped the gun. What was really happening was the insurance company need some clarification and they place a pending note on her file. What needed to happen was Grace's doctor needed to talk to the doctor at the insurance company. What a mess. I talk to the insurance company today and was told that everything is fine and that Grace is covered through next Tuesday for sure. At that point they need another report to determine if she is still meeting medical necessity. So what is medical necessity? The insurance company wants to know can Grace's care be managed at a lower level? Is she a danger to herself or to others? It is a very small window of what they want in order to justify keeping her there. What I am learning is this means the insurance is getting very anxious to get Grace out of there. I talked with Grace's doctor just last week and the doctor told me that they think Grace needs about 9-12 months of care at Hogwarts. Well obviously the school and insurance company are not seeing eye to eye. Now it feels like we need a miracle. I called the billing office just to see how much self pay would be. Lets just say that one month at a discounted rate would buy a nice used car. That is not going to be an option. At this point I have decided that I need to work with Hogwarts to make the most of the time we have left. In the mean time I have to call and set up tons of meetings for once Grace is released. I have to have a physiologist set up and ready to see here, try to get in home therapy set up, and call the school district to get an IEP for her. Not to mention we are still trying to set up the neuropsychological testing. This is such a crazy system to navigate. The insurance person I spoke to today asked me to please write a book about how to do all of this. Who knows maybe I will? In the mean time I will keep pushing to get the best help I can for my Grace.
 Basically what I am figuring at this point is yes Grace will need long term care, however not necessarily from a long term treatment facility. Her care at some point will be managed by us from home. This really scares me at this point. Also it was suggested that if Grace does have a ABI then we need to file for disability for her. Having her on disability would help us with the co pays for her care as well as resources to help us avoid hospital stays. It's one more thing to do, but it may be the most important. Baby steps to figuring this all out.