Valerie’s Week in Review – Friday, July 17, 2015

Dear Governor Brown,

It’s been almost a month since assistance for developmental services was taken out of the budget and moved to the Special Sessions, and still no decisions have been made. Meanwhile, the situation gets worse by the day as the system continues to collapse.

I appreciate that the committee members seem to understand the urgency of the need and that, with the help of your financial analysts, they’re looking for taxation funds to rescue our system when the sessions resume in August.

But why do we even have to look for the money? Your Department of Finance reports that General Fund cash is running far above the 2015-16 Budget Act forecast ($815 million extra for June, $713 million extra this fiscal year-to-date). This would more than amply cover the 10% restoration we so desperately need.

Why not use the General Fund? Didn’t the savings from previous Developmental Center closures go into the General Fund? I know you like having the budget balanced, but at what human cost?

This is an emergency.

I also know you like keeping plenty of money available in the Rainy Day Fund. But, Governor Brown, with services falling apart all over the state, with people with no day programs, no housing, no supported living or employment services… for those service providers forced to downsize or close their doors entirely, for individuals with developmental disabilities, this is a downpour.

Thank you


Audrey deChadenedes

Friday, July 17, 2015

Valerie had a busy week. I was able to find more fun, free activities for her to participate in as part of her self-directed day program, and she enjoyed herself thoroughly. The activities need to be free because the budget for this program just barely allows enough money to decently pay her direct support staff. All administration work (mine) is done on a voluntary basis.

On Monday she went to her Conversation Club, held at the Noe Valley Library and sponsored by Support for Families of Children with Disabilities. There, she and other AAC (Alternative and Augmentive Communication) users practice conversing with each other using their devices.

On Tuesday she attended Dance and Drama Class, part of the City College Disabled Students Program.

On Wednesday she visited her old day program and watched a movie. She was so happy to be among her old friends.

On Thursday she and her attendant visited the Botanical Gardens, and she was enchanted by the 12 pianos temporarily living among the trees.

On Friday we traveled to Santa Rosa for a memorial service for her paternal grandmother. We spent the night and had dinner and breakfast with family who had flown in from all over the country.

Obviously, an overnight trip is a major undertaking with all of Val’s medical needs. I’ve already written about the steps needed to prepare for a trip to Sacramento for the day; this required all of that and quite a bit more, but we took a deep breath and managed to get through it with only a little lost sleep.

Throughout the service and the following social interactions I observed, as I have many times before, how uncomfortable many people are when they encounter someone with obvious disabilities. Even Valerie’s extended family, dear people who don’t get to see her that often, weren’t quite sure how to communicate with her and tended to keep their distance after their initial greeting.

Her late Grandmother understood her, took it as a given that she was smart, and expressed her love for Valerie openly and often.

Of course we miss her terribly, and we’re sad for her difficult final days and the loss to all of a vibrant and generous soul. But beyond that, I feel a particular loneliness with one more person gone who sees beyond Valerie’s disability to who she really is: a bright, funny, strong-minded young woman. I can only begin to imagine the loneliness that Valerie must feel.

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