Dear Governor Brown,
This week Valerie and I were at the Capitol in Sacramento for a day, and we stopped at your mailroom to leave you a hard copy of the letters and reports we’ve sent you so far. I hope you received them; I thought you might like to see a picture of Valerie, and to know that you can now read these letters and reports online at http://www.valeriesweekinreview.wordpress.com
We are writing again to remind you how much Valerie and others with developmental disabilities need funding restored to developmental services. We ask, we plead, for 10% now and 5% annually until this system is working.
If our report this week seems tediously like some of our earlier reports, well, it felt like that to us too as we were living it. There are so many issues I want to write to you about – housing, case management, the rising autism population – but again this week, we focus mostly on transportation.
Thank you again, Governor Brown, for listening to our stories.
VALERIE’S WEEK IN REVIEW
APRIL 17, 2015
On Monday morning we headed down to meet the van taking Valerie to her Day Program. The van was 45 minutes late (one hour of waiting for us, since we’re asked to be outside 10-15 minutes early). The van had a new driver, which was surprising since the ‘old’ driver had only been working since April 1st. In the afternoon the van arrived 40 minutes late, with a different driver. He was angrily complaining about having to cover this route instead of his usual route.
Fortunately, we had already decided to skip Valerie’s Monday afternoon Conversation Club meeting since Val was still catching up on rest after last week’s breathing challenges. Otherwise, with the van this late we would have missed it. Conversation Club is a group of young adults who get together once a week to practice communicating using their Speech Generating Devices. This would not have been the first time Val had to miss this group because of van delays.
On Tuesday the van didn’t pick Valerie up at all! I had called on Monday to cancel the afternoon portion of her ride since I was planning to pick her up myself for an appointment, but she was mistakenly cancelled for the whole day. When I called after the bus didn’t show up, the customer service agent apologized for the error on their part, but told me the bus company would not send anyone back to pick Valerie up. We were on our own, again.
On Wednesday the van came to pick Valerie up, but she wasn’t there because I had called two days earlier to cancel. We were on our way to Sacramento when I received a call asking why she hadn’t come down. Later in the day I called back, just to be certain that Val would get picked up on Thursday.
It worked, and the van did pick Valerie up on Thursday. It was forty minutes late but at that point I took it as a win.
I probably don’t need to mention that when people get paid enough they stay longer, they’re more qualified, and maybe they care more about the kind of job they do.
On Friday, Val had a seizure in the very early morning. As usual, she fell into a deep sleep after the seizure subsided. I waited for her to wake to see whether this would be a wake-up-alert-and-ready-to-go day or a complete-zombie-must-sleep day, and I thought nervously again about how close we were getting to her maximum allowed days out from her Day Program. It’s not the program’s fault that they have to bump clients if they miss too many days – they don’t get paid if people don’t come, and they can’t afford to keep fillable slots empty.
The good news is, Valerie woke up with a smile on her face and full of energy. The van came only 10 minutes late, and arrived in the afternoon within 20 minutes of the official time. I give thanks for small miracles and go into the weekend counting my blessings.