Valerie’s Week in Review – Friday, July 10, 2015

Dear Governor Brown,

Valerie and I will be in Sacramento in August to give testimony at the continuing Exceptional Hearings. For now, we’re watching the broadcasts with great interest.

This week we saw the July 9th Assembly session. I hope you’re hearing what we are, that the members of this committee are clearly seeing and understanding the tremendous and urgent need to restore funding to the developmental service system.

Please listen to them, Governor Brown. And please do it now; don’t wait for task forces that won’t have any recommendations until next year. The system is falling to pieces NOW all over the state – you know that.

I do understand that you want to be careful and know where the money will be coming from, and it’s good to keep studying that. It seems to me that there are abundant sources.

This is an emergency.

Years after years of cuts are now resulting in programs closing everywhere and people being turned away from programs that do manage to stay afloat. This is happening NOW; it has been going on for quite a while, and it will get worse.

To be clear, as several of the Assembly committee members pointed out, this is not new money into the DD system being discussed here, we are talking about giving back money that was taken away.

My daughter and the other 280,000 Californians with developmental disabilities desperately need a 10% restoration of funding to service provider rates and Regional Center Operations. We need it now.

Thank you.


Audrey deChadenedes

Friday, July 10, 2015

This has been a week for adjusting and settling in – to Val’s new routine, to a new caregiver – and for catching up on sleep. Even a short hospital stay can take a few weeks to recover from.

Valerie seemed depressed this week, and she let me know with her communication device that she really missed the people at her old day program. Although her portion of the program is closing, the larger entity is still in operation. We decided to see if she could go for a visit during her program week, and she spent a happy afternoon with some of her favorite people.

I have to remember that even though I was able to get the pieces in place for Val’s new program without too many obstacles, it’s a big change for her – any change is a big change for her – and we need to give her the time she needs to get comfortable with new people and new situations.

It took her a while to get used to the two wonderful women who were her attendants at the old program, and it’s no different with the new young woman we’ve hired. Valerie, like so many people with developmental disabilities, needs to really get to know someone before she trusts them. After all, they’re involved with intimate details of her care, and she is helpless without them.

I was approached this week by another parent whose adult child is being displaced from the one-to-one program. Her case manager at the Regional Center told her there were no options for her daughter other than the self-directed program, and that it was very difficult to run. She called me for some pointers on setting it up and I was happy to oblige.

When I spoke to staff at the still-existing program, I was told that the promised replacements for the programs being closed were not yet in place, and that there were some problems. Thirty clients with extreme physical needs and nowhere to go….

We continue looking for activities to interest Val so much that she’ll forget her shyness; to support her ongoing physical recovery; and to try to keep up with developments in Sacramento.

The Extraordinary Sessions of both the Senate and Assembly will continue through August, looking for revenue sources to provide some restoration of funds to the collapsing developmental service system. We plan to make at least one more trip to Sacramento to listen in and speak up. We are greatly encouraged by the remarks of the members of these committees, which seem to show a level of compassion and commitment that is sorely needed now.

But as one of the people giving testimony on July 9th said: “Thank you so much for your beautiful words. But we don’t need more words, we need action – now.”

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