Valerie’s Week in Review – Friday, July 3, 2015

Dear Governor Brown,

Although I wasn’t able to be in Sacramento, I did manage to watch a recording of the second Extraordinary Session on Thursday, July 2nd.

I appreciate that you have directed the committee to come up with sources of sustainable funding for developmental services, and I hope this means that you do understand the enormous and urgent need.

The committee members are taking this issue very seriously, and it seems to me that they understand quite clearly what’s at stake.

Although DDS is only one piece of the issues being looked at, my daughter Valerie, along with many others, also relies on MediCal and IHSS. My letters to you have been focused on Regional Center services, because that house is burning down now, but people with complex multiple disabilities like my daughter depend on a variety of services, each one of them critical. We’ve been limping along for years with 7% fewer IHSS hours, with difficulties finding medical and dental providers, and so I want to say that all of these efforts are appreciated. However, please don’t leave Regional Center service provider rates behind again.

Your financial analysts spoke of the pressures of complying with the new Federal regulations for Home and Community Based Services, and of closing the Developmental Centers. They spoke of raising funds through MCO taxes and through taxes on cigarettes and soft drinks.

These are not bad ideas, but I have to ask you again, as several of the Senators did:
Why isn’t the money saved by moving people from the DC’s into the community going back into developmental services? Why is it going into the General Fund? Why have the funds from the centers that already closed gone into the GF and not into the DD community? Again, a bed in a Developmental Center costs $500,000 a year; the same person living in the community with all necessary supports costs the state $75,000-300,000 annually. Shouldn’t these dollars saved stay in the system that needs them so desperately?

You have earmarked $46.7 million from the General Fund to develop new community resources for the DC population, even as you let the existing community resources fall apart. I don’t understand why you can’t see how short-sighted this is. These resources can support everyone if you invest in restoring their funding and allow programs to return to full strength.

Perhaps you think that these services can’t meet the complex needs of DC residents. In fact there are already many, many people living in the community with conditions every bit as complex – my daughter is one of them – and with behaviors just as challenging. And before funding started slipping away and services started disappearing, they were living quite successfully.

Reinvesting in existing community programs will not only improve the quality of life for those individuals with developmental disabilities already living here, but it will allow for expansion from a stable base for the clients leaving DC’s. Please direct funds for these programs to rebuild – there is no need to reinvent the wheel.

I appreciate your apparent willingness to find solutions, but please don’t cripple this system further by allowing months, years of Task Forces and Work Groups to figure out the details. We’ve already done that. We need solutions NOW.

Senator Leno said it: “The system is disintegrating now and the infrastructure is at risk of dissolving.”

Please listen to him.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, July 3, 2015

This week, as Valerie’s health continued to improve, we made great progress toward getting her Self-Directed Day Program running smoothly.

We were able to identify a number of engaging low- or no-cost activities for Val to participate in. We decided to increase the time she spends at her City College Theater Arts class. In recent months, her busy Day Program schedule had only allowed her to drop in to this class occasionally, but now she can spend two afternoons a week with her old friends. On her first day back, she said repeatedly, using her eye-gaze activated communication device – “I missed you”.

We’re taking advantage of the abundance of free outdoor performances that San Francisco offers during the summer, free movies at the main library, free museum days. This will be an ongoing process, and of course I’m researching classes and other possibilities for the fall, but so far, so good.

Training for our new staff person continues, a bit more slowly than I’d hoped, but I expect she will work out very well in time.  Meanwhile, my own time is not quite free as I support and monitor her.

At the end of the week Valerie and I watched the Extraordinary Session Informational Hearings on our computer and she was as interested as I was. We are very encouraged by the compassion and commitment of the committee members. Our heroes especially:

-Senator Mike McGuire, who asked some hard questions about the reality of the time frames being looked at.
-Senator Holly Mitchell, who spoke of her frustration with endless task forces that went nowhere and asked why the DC closure money can’t go into the developmental service system.
-Senator William Monning, who pointed out the huge savings to the state of moving people out of the Developmental Centers
-Senator Richard Pan, who brought up the issue of access to MediCal and quality of services, and who made the important point that for this population “services are all interlinked, and the same people are getting hit by budget cuts multiple times”
-Senator Mark Leno, of course, who has been our champion for years. He said, “We will have failed in our mission in this committee if we close without having raised some respectful restoration of funding to this system”

Amen to that, and my most sincere thanks to all of these hard-working legislators.

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