United Brachial Plexus Network, Inc.

Hello. I'm looking for some feedback please. Nicole is almost 3 y.o. and will be leaving the birth to 3 / early intervention program soon. We had our first "Transition" meeting with the school last month and have our first PPT meeting scheduled where we will create Nicole's first IEP. Well, last week I got a call from the Preschool / Special Ed Teacher asking me to come in for a meeting with her, the PT and the OT. She said the purpose of the meeting was to discuss Nicole's educational needs and so that they could tell me what our options might be. So, I invited Nicole's B23 therapists (who attended the Transition Mtg and who will also attend the PPT Mtg) and when I told the Sp Ed Teacher that the PT would be coming, she reminded me that it wasn't the PPT meeting and re-iterated the purpose for the meeting. So I told her I realized that and thought it was a good idea to meet. It makes me wonder though, like she didn't want the B23 PT (who is advocating for Nicole to get svcs) at the meeting. Furthermore, both the B23 PT and OT, as well as their supervisor, said that they've never heard of a meeting being held between the Transition Mtg and the PPT Mtg. So, finally to my point, I was wondering if anyone else has had such a meeting. In fact, they thought it sounded odd. The PT said that it was up to me if I wanted to go and that she didn't mind attending it with me, but she told me that I wasn't obligated to go and she forewarned me not to agree to anything they might try to get me to agree to (which I wouldn't do anyway). I don't mind attending the meeting for the purpose of getting more info. from them. However, I don't feel that they should need any additional info. from me b/c we already had one meeting during which I distributed and reviewed a 3-page write up I did about Nicole and a 1-page health history summary. Also, they've done a preschool screening with Nicole and they will receive a copy of her final B23 evaluation at or before the PPT meeting. Oh well, this is all new to me and it's a big mystery so I'm looking for feedback here. Thanks.

-Tina

P.S. I also gave them the Awareness document on BPIs related to schools -- THANK YOU to UBPN and to the AWARENESS COMMITTEE for that EXCELLENT document BTW!!!

tina - this all sounds so complicated.... here's what we did:

I gave them the Peabody / OT evaluation from her hospital based OT. Then I gave them the TES evaluation done by hospital based PT. They also knew that Maia was having more surgery. And that was it.

We met - we looked over the goals they wrote up - we adjusted them a bit here and there - they retyped it and sent it to me to sign. And one month later, maia had services.

I know this doesn't help you figure this meeting thing out but I am just wondering why it seems to be so complicated or are we in a good county /state so that we don't have to fight so much it seems. (at least for this)

And the other thing is that Maia was SO delayed - 21 months is a HUGE delay - that there really wasn't any question.

When you go to this meeting - keep your eyes and ears open and beware of hidden alligators (in their verbiage, I mean).. don't understand why that one PT wouldn't be there...you should be able lto have whoever you wish at these meetings. Here in PA it is law that you can have whoever you wish to attend.

I wish you the best of luck in getting all that Nicole needs. I know you will fight until the moment she does.

-francine

Sounds like what they have done to Katie in our state. She lost all b3 services (they did reestablish ot visits) because she could now walk. That is what they basically took it down to. And now I just found out that she is losing her secondary medicaid assistance because of the income level being too high. It was my understanding that since she qualifies for special needs services that she was automatically eligible for the medicaid card.

Geesh, this all sounds way too complicated and upsetting. Watch out for them Tina, sounds like they don't want anyone there that might point out to them that Nicole needs these services on more than just a "mom" level.

Keep us posted and best wishes.