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Raising Special Needs Kids Raising Special Needs Kids

No Matter How Experienced You Are Take An Advocate

Posted by on Sep. 23, 2012 at 8:27 AM
  • 11 Replies

 I've been dealing w/the 'system' for over 35 years now for my daughters and yet last month I made a 'rookie' mistake--I didn't take an advocate to a meeting! My oldest daughter lives by herself in an apartment and has been having staffing issues. So when she had a appointment with the Office of Intellectual Disabilities I thought 'I can do this!' no need for an advocate. WRONG! Turned out what we were asking for got turned down due to a screw up by the person who had taken the place of her supports coordinator never turned in her paperwork and never wrote down the information or turned it in. We had made a long list of reasons her staffing needed more hours, it should have been simple. It wasn't, it got turned down, my daughter is distraught and feeling like she wants to give up on living on her own. She's been doing so well, getting things organized since she has new staff. But the lack of hours  means she is having health issues because in order to organize she has to give up some of her hours that are devoted to nutrition and cooking and grocery shopping, things she still needs help with. It seems to me there is something wrong when despite staff hrs a parent is putting in twenty extra hours working with their child--we're trying to get her independent but the state is NOT making it easy. I can't afford to basically work for her unpaid for twenty hrs. Sure, I'm her parent, she'll never go without as long as I can do anything to help her become more independent, but TAKE AN ADVOCATE! I have a feeling this issue wouldn't have derailed the way it did if we'd had one at the meetings. So this is my piece of advice to anyone, no matter what the age of your child and how much experience you think you have--TAKE AN ADVOCATE! PLEASE!

by on Sep. 23, 2012 at 8:27 AM
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Replies (1-10):
CameronsMommy23
by on Sep. 23, 2012 at 12:05 PM
Sorry you're having trouble getting the help she needs! Good advice on taking an advocate!
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gma12.1
by on Sep. 23, 2012 at 9:38 PM

Exactly what is an advocate and do you need to have one for an IEP meeting with an elementary, jr hs or high school?

letstalk747
by Joy on Sep. 23, 2012 at 10:16 PM

sorry to hear all this , it hurts deep

Elyssa414
by Elyssa on Sep. 23, 2012 at 10:20 PM
That's good advice!! And I'm so rsorry to hear about the staffing issues with your daughter! *hugs*
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amiesmomma
by on Sep. 23, 2012 at 10:25 PM
You can bring anyone to an iep meeting. Grandparent, advocate, attorney, whomever makes you comfortable
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mandee1503
by Amanda on Sep. 23, 2012 at 11:23 PM
Sorry to hear that.
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darbyakeep45
by Darby on Sep. 24, 2012 at 5:05 AM

I'm sorry to hear this mama!  Thanks for the advice though!

WDWEditor
by on Sep. 24, 2012 at 8:14 AM

re: what's an advocate?

depending on your needs you can just take someone extra along as an 'extra set of ears' or you can call your local ARC and they have professional advocates (usually parents who have kids in the system who have attended specialized training). As you child ages out of the school system there are also advocates for adults. Which was what I should have gotten! Live and learn! Now I have the headaches of the continuing saga of OID! As noted above, an advocate is never a bad thing to have! No matter how much you know and how on top of things you think you are, as you can see, I learned the hard way--to take an advocate!

natesmom1228
by on Sep. 24, 2012 at 10:29 AM

I have an advocate for Nathan. I have her go to every school meeting and IEP conference. She is a valuable part of our team for Nathan.

WDWEditor
by on Sep. 25, 2012 at 8:49 AM
1 mom liked this

we have a meeting today and were lucky enough to get an advocate for this last minute meeting. We went through Handicrafters in PA where they have advocates for adult issues. If anyone lives in suburban Philadelphia (I know they serve Delaware and Chester Counties at least) it's the go to place. The woman is someone Kate had worked with before so she knows some of K's issues already. Someone up there is looking out for my daughter! My thanks to everyone who works in the system who really cares.

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