Valerie’s Week in Review – Tuesday, Nov. 3, 2015

Dear Governor Brown,

I took a few weeks off from writing to you about the developmental services budget; I hope you understand. I was exhausted and downhearted after the legislature’s failure to come up with any remedy at all, after all those hearings and special hearings, after all the talk from both parties promising they wouldn’t let us down.

Well, they did. They followed your lead and turned their backs on the 280,000 Californians with developmental disabilities.

It breaks my heart to know that you and all those legislators listened to the facts, the history, the personal stories – really seemed to understand the enormity of the problem – and still did nothing.

Before your May revise, committees from both houses came up with reasonable plans to provide restoration of funding to this seriously damaged system. But you convinced them to take developmental services out of the budget and into special sessions instead, where all efforts to find additional money were met with the Republicans’ refusal to raise taxes. You knew this would happen, didn’t you?

While I can in no way justify the Republicans’ no-tax stance, they are not wrong to say that there’s enough money in the General Fund to support a 10% restoration of funding. We all know that the General Fund is in great shape and that state revenues have exceeded projections by $637 million since the fiscal year began.

I truly hope that you’re writing this 10% into the 2016-17 budget that you’re working on now. The situation has only become worse this past year, with more group homes closed, more day programs out of business, more transportation companies gone, and many more just barely hanging on. Please don’t put the developmental disability community through another frightening year, as the infrastructure continues to crumble.

Please look to to your best self as you plan for the next budget year. Please remember the people here in the community whose services are literally on the brink, who need and deserve much more than 10% put back into their service system.

For now I probably won’t write every week, but I will keep writing and keeping you updated about Valerie’s life. I appreciate your attention.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Tuesday, November 3, 2015

In the several weeks since I last reported, Valerie has been pretty healthy and fairly happy. She’s attended her regular activities – Conversation Club, City College Dance and Drama class, and outings to museums and malls and parks. But she’s lonely. She has expressed this in many ways, including the clearest way possible: saying “lonely” over and over with her communication device.

We’re working to arrange meet ups with other friends in the same self-directed day program, but what she really misses is the busy, active, very social home base that exists at her old big day program. A partial solution has her dropping in to say hi every couple of weeks. They’re happy to see her and she feels connected again for a while.

What she misses is community.

Just in case there was another possibility, I checked in again recently with Val’s Regional Center social worker. I knew there were no appropriate day programs for Val in San Francisco, but I wondered if there might be something in Marin or San Mateo county.

The answer, which didn’t surprise me, was no, because:

1. There were only a tiny few programs appropriate for Valerie in the first place and some have closed.
2. None of those existing have openings; some aren’t even taking any more waitlist names.
3. Even if they did, there’s no transportation available to go inter-county.

So I’m back to brainstorming, and Val soldiers on.

There has been, as always, plenty happening in Valerie-land, the usual assortment of eligibility renewal forms and doctor visits and prescription and supply refills.

In the last month, forms arrived from three different apartment waiting lists, to be filled out and returned as confirmation of her wish to remain on these lists. She’s been on them for six years, and there are no prospects in sight. In truth, I’m really enjoying her living here and I think she is too, but she needs a life that will go on when I’m gone. I’m strong and healthy, but I’m 66, so that could change in a minute. I need to set up a life for her while I can still be around to help it run the way she wants and needs it to.

Will there be housing for her? Will there be a day program that can run without me? Will she have Supported Living Services? And most of all, will there be people who value and love her?

As great direct-service people quit to make a living wage, as programs close, as things fall apart all around us, I am terrified for my daughter’s future.

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One thought on “Valerie’s Week in Review – Tuesday, Nov. 3, 2015

  1. Hello Audrey and Valerie, I saw your story on my iPad NPR site. The situation in California breaks my heart. I have a daughter who is 46, who is on the spectrum and has intellectual challenges. So you can understand why I understand your situation. We live in Keene, New Hampshire. Funding is a huge issue here as well, as it is in most states. My daughter, Laura, is fortunate to be funded by the state to live with what we call a home provider. It is an excellent match, and gives Laura independence from her parents which, Valerie can understand. Unfortunately, our developmental disabilities system is being challenged by A new method of Medicaid care management by insurance companies, which are for-profit. Sigh.
    I am 75 years old, and have the same concerns as Audrey.
    Wishing you well…….Betsy &Ed

    Like

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