I would definitely get her on those waiting lists while you guys are searching out other options. I would also suggest starting physical therapy now because I'm sure you've seen in your reading that RSD is a use it or lose it sort of condition. I know it's painful but if you can find the right physical therapist they could really help get some of that function back and stop the vicious cycle of not moving because it hurts, and it hurting worse because she is not moving. Those children's programs, from what I understand, have intense physical therapy as part of the treatments. This is probably going to be the biggest key to treating her RSD (it was for me).

You've already gotten great advice from everyone else. Please keep asking questions as you think of them and we will all do our best to try and answer them based on our own experiences. You are a VERY good friend to be doing this for your friend and her daughter. Don't we all wish we have supportive people in our lives like you.