No Matter How Experienced You Are Take An Advocate
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!