United Brachial Plexus Network

our 5 yr old daughter is with her biological mom in NM and did not receive any therapy while in her custody for 2 yrs., now court has ordered PT/OT and mother is complying reluctantly. Her former therapists were at Children's Hosp in Phila. Her father and I have been trying to arrange therapy and also support services from 2 thousand miles away with very little coop from bio mother. Now public school says they do not provide support services for OT/PT in the school setting unless a student is severely compromised. I know she would get help in NJ in our districrt. The NM CST refuses to provide services. They say each state is different and that NM provides only the minimum services for the most needy child.
Is there a support group that could help us determine legal recourses we might have? All of the therapy our daughter has received have been while she is in father's custody. Mother is uninterested and uncomfortable with daughter's disability. Now that she is in Kindergarten, the differences between her and her classmates are more pronounced and in 1st grade it will be worse. Writing and fine motor skills are very weak and upper body strength is poor. She is so needy. I am a member of our own school's Child STudy Team which makes it so much more frustrating for us to see our own daughter languish without services or reinforcement from the school system. She gets no help from her mother in the home. The school is her only hope right now and they will not help her. They say she is "coping" okay and they will her support her in her "coping skillls." I think that this is outrageously inadequate response from the school system.
Does anyone have experience with their CST?

Judith
My heart goes out to you, your husband and especially your daughter. I hope and pray you are able to help her. Your post brought tears to my eyes this is so sad.
Kath

We just moved from Albuquerque NM & had a fabulous therapist at Explorablities (they specialize in children). From my experience in NM, there are not many people who acknowledge BP injuries, we couldn't even find a doctor who knew anything about it (even at the Children's Hospital) - we kept being told to go to Texas.

I saw - more than I'd like to say - both children & adults who had suffered from BPI's & apparently never had any pt/ot or specialist care. It was very sad...