United Brachial Plexus Network, Inc.

I was wondering if BPI children were being served through IEP's in elemetary school or if parents are providing services themselves. Our therapists say we need either delay/disability in two areas or two standard deviations in one area (whatever that means)!

Mary,
Our daughter is in 1st grade and receives servies through CSE and gets PT and OT (not much) and we also do Aquatic Therapy 2 times week and PT once a week on the outside. The school therapist are kind and nice, but sometimes they have never worked with BPI children. You have to fight for the services and have your teacher back you. Right now she just had surgery (the 4th ) and we wull fight for more service, but they tell us they are a medical issue and not a educational issue. Each School Board is different in each County and State. Good Luck.
Kathy

I really think you need and IEP to help your child to get through the politics of school....such as more time allowed to make up work because of missed school for doctor appointments or therapy appointments...Or being able to not have to do chin ups etc...in gym. I know it sounds stupid but we have had so much trouble with school that it is just easier to have the IEP in case, even if your child isn't elligible for therapy through the school. Kind of a safety net for the future...We didn't really get an IEP until our son was in the 5th grade...That's when we noticed that the school wasn't willing to make any allowances on writting and missed days...It can really add up and then you have a child hating school because they are so far behind in their work that they feel like they can't catch up.
Good luck to you.
T.

My son is now 4 and is a pre K program. He receives school services (speech 2x a week and OT 2xs) He also received PT but through my insurance. I had to fight VERY hard for my son to receive these services. I was at the school board meeting 3 times before they finally approved services(they denied us twice). My son will be going to Kindergarten in the fall and I have to continue to fight for the services in the fall for him. ALL school districts and states are different. Some people I talk to have NO problem getting services for their child. I once read that Brachial Plexus injuries are considered an "orthapedic impairment" which is listed under the 503c law. I brought this up at my school board meeting once and they told me this ONLY comes into play when the child is 5 and in a "school" setting (not a preK). Soooo...since my son is starting school in the fall I'm gonna bring it up again and see what happens. No school board I know of WANTS to pay for the serivces for you. You have to FIGHT for what you are entitled to. Good Luck to you. Keep us posted as I will too.

Wow, wish Katie was getting that stuff from B-3 again! Right before caps (I think I upset someone when I started questioning their statements that she would receive nothing after 3 years of age) they cut all services except 2 ot visits per month. Said her condition was more of an acute medical condition...we are in the process of appealing starting tomorrow.

Presently she gets 3 AT at my insurance's expense. Just found out today that she has an elbow contracture and bless their precious little hearts (sarcasm, can you tell) they didn't know that we needed to know and I overheard them whispering about concocting some kind of arm splint!

Anyway, I agree that all schools are different. Each state's b-3 even, when I asked for documentation to show me that they weren't supposed to be doing all that stuff they had paid for for over 18 months they provided me with information from New Mexico's program. Guess they thought I couldn't read that part of it!

Get an ISP going, keep up the fight, that is our lot in life being from a BPI family.

Depending on how old your child is, they have different material you can ask for. For IEP for K - and up, our daugthers school district has a parents guide of rights. The hard thing we are dealing with is the 503 issue and is it a medical or educational issue. Everytime we have a formal meeting and I bring all the information I have found - I fight back and win for our daughter. She gets her services, but it is a yearly fight and they can take them away if they feel they are educationally imoroving. ALso make sure you speak with any therapist that you are working with because they have to submit an evoluation forthe IEP Hearing - it's a good idea to find out ahead of time what they are going to report.
Kathy

I've been trying to set up an IEP for my 5 year old and have been told by the school counselor that she is so determined that she'll not have any problems in school. To her detriment!They are not at home with her answering her questions about why she can't do some of the things the other kids do. They don't deal with her self esteem. I was also worried about the future and wanted to get it set up while she is in pre-k so I wouldn't have to deal with it later. I keep getting stonewalled. I was also told she needs to be mainstreamed cause it's not that bad and since she is mainstreamed they can't afford to give her any special services such as PT or OT.Her pre-k teacher doesn't know how to deal with any of this and expects her to perform "like any other child". "We just give her more time".Then she got upset when my daughter started wetting again because of the frustration. What is 504 anyway?