Valerie’s Week in Review – Friday, June 12, 2015

Dear Governor Brown,

I don’t understand. I don’t understand how you can remain unmoved by all the phone calls and emails and tweets you’ve received from families and individuals with developmental disabilities. I don’t understand how you can refuse to restore funding to the developmental service system, the system that has been destroyed by decades of budget cuts, the system that’s falling apart before our eyes.

I don’t understand how you can provide funds for community-based services for people transitioning out of Developmental Centers and none for people already living in the community, watching their services come crashing down now. Do you think the people in the community are less disabled? Less deserving? Don’t you know that they’re the same people, that if they had been born 20 years earlier they might be in a Developmental Center too?

I don’t understand why you can’t see how financially impractical it is to let the current system fall apart even as you acknowledge your responsibility to provide stable community supports for transitioning DC residents. Don’t you understand that rebuilding a destroyed system will be much more expensive than expanding a thriving one?

I don’t understand why you think that the state has no responsibility to the people with developmental disabilities now living in the community. I’m pretty sure you’ve read the Lanterman Act, which says exactly the opposite.

I don’t understand why you don’t get that the people with developmental disabilities currently living in their communities are saving California enormous amounts of money. Residents of Developmental Centers cost the state around $500,000 a year; the same people living in the community – the people here now – cost an average of $60-70,000 annually, with a high of $300,000 for those with the most intense needs.

I really don’t understand how you can justify not putting the savings from DC transitions back into the developmental service system. You plan to close Sonoma Developmental Center by 2018. Even if all 400-plus residents there are at the highest level of need in the community, this will be a savings to the state of $80 million a year. Which you want to put into the General Fund instead of the DDS budget? How is there anything right about this?

I don’t understand what you expect people to do as their day programs close, as their transportation no longer arrives, as their caregivers quit. What do you expect aging parents to do as the supports we thought were in place for our adult children come crashing down? Families take care of their children because they love them. We are willing to give up our time, our earning ability, our freedom to come and go, and in many cases our health. But we won’t live forever…What will happen to our children? Their community supports are disappearing and you don’t want to fix this broken system.

What will happen to my daughter? Valerie is 30 years old and has Rett Syndrome. She definitely would have been a candidate for a Developmental Center had she been born in an earlier time; now she happily lives with me, in the community. You could say that we’ve been saving California money all these years. That’s – at minimum – $6 million so far.

You don’t need to thank me. But please – give my daughter a day program – hers is closing in July. Give her safe and affordable housing – there is none. Give her support staff who are well-paid enough that they don’t need three jobs to survive. You have the power to fix this. Please.


Audrey deChadenedes

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