Sunday, September 23, 2012
Recently we had an issue with my daughter's staffing hours. My daughter who has intellectual disabilities has been living on her own by herself in an apartment. Great, right? Yes, or at least it was when she had good staffing. But staffing went downhill and changes had to be made.
Unfortunately by the time changes were made (due to a variety of issues with OID and her staffing) her paperwork and mail filled two huge Rubbermaid containers and she began to have additional health issues. Just cleaning up the mess was overwhelming. Getting her recipes and teaching her to cook so her stomach problems didn't act up was another. And that was just the beginning.
As experienced parents we scheduled an appointment with OID (Office of Intellectual Disabilities) and her supports coordinator to ask for an increase in hours.
Her previous supports coordinator has been out on long term disability so a temp came. He was late. And once he arrived did not write much down. This should have been our first alert that things were going to go downhill fast. But we had prepared a typed document with my daughter listing why she thought she needed help (her handwriting is not the easiest to read so she typed it) We added our opinions to it and gave it to the supports coordinator temp. He said he'd do the paperwork once he got back to the office.
Two weeks later we hadn't heard anything so called the office. It seems he was no longer on staff and no one had seen any paperwork on his visit. Great, just great! And us without anyone who had been there on Kate's behalf. See, we thought OID was working on her behalf not against her. We thought they'd let us know if suddenly her supports coordinator left. Obviously not. But the supervisor said to go ahead and work the hours, no problem.
But it seems there was a problem. The hours did not get approved. My daughter who needs these hours partly because of the disaster some of her prior staff left and partly because she has health issues she needs to learn to manage on her own was left with hours that hardly covered grocery shopping and banking. She definitely did not have the staff hours she needed. No time for health care. No time for filling out endless government forms. And certainly no time the continued need for clean up and general apartment upkeep, or for recreation which is supposed to be part of her staff time.
So I have one suggestion to any other parents out there reading this--get an ADVOCATE! No matter how experienced you are, no matter how 'in the bag' something seems to be, an advocate is always in your child's best interests. No matter how small an issue the meeting is about GET AN ADVOCATE. Because in the long run nothing about your child's well being is small. Everything is important. Take it from a parent who made the mistake of thinking they could do it on their own.