Valerie’s Week in Review – Monday, Sept. 14, 2015

Dear Governor Brown,

Although you may not be directly at fault in the legislature’s failure to pass SBX2-14 last week, I hold you responsible.

The Republicans say that developmental services should have been funded in the budget, and they’re right. They still should have voted for Senator Hernandez’s bill; the MCO tax still needs to be restructured, and having them look backwards and point fingers doesn’t help the developmental service system now.

We don’t need a tax though, to provide the desperately needed 10%. The money is there. The General Fund is healthy and state tax revenue for this fiscal year – just two months – is now $637.8 million above what was originally projected.

I’m angry and profoundly sad that both Democrats and Republicans are more concerned with their parties’ philosophies than about the welfare of California’s 290,000 citizens with developmental disabilities.

I’m grateful to Senator Hernandez for SBX2-14, and to the many Democrats who supported it, but it wasn’t enough. At this point there needs to be a bipartisan solution. We wouldn’t be here if you had put the 10% restoration of funds into the budget.

I appreciate that special sessions will continue and I look forward to a better outcome. In the meantime, the developmental service system continues to crumble, programs continue to close, and people continue to lose services, as California’s leadership continues to fail its most vulnerable population.

Sincerely,

Audrey deChadenedes

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Valerie’s Week in Review – Saturday, September 5, 2015

Dear Governor Brown,

Valerie and I were in Sacramento for the Speak for Justice rally on Thursday, September 3rd, along with more than 1,000 others. Did you see us? I know that people have sent you messages and photos and beautiful, powerful videos from that day. I hope you’ve given them the attention they deserve.

There were other rallies during the week, in San Diego, Santa Barbara, and Los Angeles. Hundreds more came out to speak up for their rights, for their needs, for fair and legal treatment. Did you notice? Did you care?

I hope you were moved, and I hope that you understand the moral imperative to restore funding to the developmental service system and to provide relief to people who are losing the supports that allow them to live meaningful lives in their communities.

If, somehow, you don’t see the ethics of the situation, I’m sure you understand the legalities. As you certainly know, the Lanterman Act says “the state of California accepts a responsibility for persons with developmental disabilities and an obligation to them which it must discharge.”

This responsibility is not being met, in fact California is also falling short regarding the ADA and the Olmstead decision.

How can you turn your back? Do you think we’ll just go away? We won’t. The developmental disability community is angry, frightened, and desperate. We are running out of options and the only thing we can do is keep fighting.

With the Lanterman Act, California made a promise to people with developmental disabilities. Please don’t let your legacy be the destruction of this important piece of legislation. Please, Governor Brown, keep the promise.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Saturday, September 5, 2015

Valerie had a good week, with both her energy and her mood on the rise.

The main event was the rally in Sacramento on Thursday. We did our now familiar prep and packing the night before and were on our way earlier than either of us usually even opens our eyes. We picked up a couple of friends on the way to the bridge and headed East.

Everyone gathered first at the Crest Theater for a program of inspiring speakers and videos, then we all marched to the Capitol for the rally. I loved seeing the theater full to capacity, the lobby overflowing, people who had traveled from all over California, people with developmental disabilities, family members, service providers, and advocates. I was told that there were 1,500 people in attendance.

There were some amazing speakers at the theater, among them Tony Coelho, who was primary sponsor of the Americans with Disabilities Act. My favorite feature was a video from labor leader and civil rights activist Dolores Huerta. Ms. Huerta emphasized that disability rights are civil rights. People with disabilities “deserve to have full lives – not only of happiness but also of opportunity. This is a civil rights issue and we must demand that we get the financial resources that we need for people with developmental disabilities.”

After the program everyone marched to the Capitol, carrying signs and chanting, on foot, in wheelchairs, and walkers . The crowd assembled at the Capitol steps for more speakers, including members of the legislature and members of our community.

Valerie watched and listened and chimed in using her communication device.

Before heading home, Val and I stopped in at the Capitol and left some mail for the Governor and some of our legislators.

Back in our everyday world, Valerie’s feeding supplies needed my attention. I spent time on the phone every day trying to get her regular monthly delivery, due last week, before we ran out of crucial items. She’s received the same inventory from the same company for more than 10 years, but somehow this month communication between that company and her doctor’s office became hopelessly confused and took a while to untangle. I’ll skip the details here since it will only give readers the same headache I had, but I will say that we finally received delivery on Friday, truly in the nick of time, and I only need to make a few more follow-up calls next week.

On Friday evening Val and I attended a monthly jazz concert for people with neurological differences. She enjoys this event enormously and her friend Joe usually comes along. Unfortunately, his staffing problems continued from last week – his Supported Living provider is experiencing a severe personnel shortage – and he couldn’t  join us. We sent him a little phone video to keep him included and we sat back and enjoyed the wondrous music. It was a long week, but a good one.