Valerie’s Week in Review – Friday, June 5, 2015

Dear Governor Brown,

I continue to be amazed at your refusal to restore funding to the developmental disability community. I’ve been closely watching the Joint Conference Committee proceedings. Thankfully, the committee members have clearer vision than you do. Here are some of their comments:

Senator Mark Leno – This issue of the serious underfunding of developmental services is not a partisan issue. It impacts each of our districts and touches each of our hearts and we know it’s our responsibility to help individuals and families. As we are in this transition (away from Developmental Centers) we have simultaneously starved our local community infrastructure in many places. As we continue let us remember that our community partners are literally doing the Lord’s work and we have to be there for them.

Assembly Member Shirley Weber – We want to do this right. This is a commitment we have to the disabled community that’s very clear….throughout the year members from both sides of the aisle have said that this is the year to do something significant for our disabled community.

Assembly Member Melissa Melendez – It is certainly a community that deserves our attention. I think their funding levels have been abysmally low, considering who they serve, and I would ask that the members of the committee reconsider perhaps giving them the 10% that would keep them afloat.

Assembly Member Richard Bloom – Over the last few days I’m sure all of us have received the volume of phone calls, and the tweets by the hundreds…this is a group of individuals in the state that are organized around a very righteous issue from my perspective and I think the two houses have different approaches, but we are really aiming at the same goal, and that’s to try to repair something that’s been broken for a very long time.

Senator Ricardo Lara – Theres no doubt in my mind that we have clearly devastated the funding for regional centers and really impacted the lives of thousands if not millions of children and their families. We’ve really done a disservice to these families and these communities and the buck stops here, we are the ones who have to do everything we can to support these families.

I don’t yet know what their final recommendation will be, but I am heartened to know that they truly understand the need. Please follow their lead and approve their proposal to rescue this collapsing system.

Read on for Valerie’s Week in Review to see how my daughter’s life is being impacted now. You can also find this at http://www.valeriesweekinreview.wordpress.com

Thank you for your attention.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, June 5, 2015

It was encouraging to hear the support voiced by the members of the Budget Conference Committee this week. I am very hopeful as I wait to hear what they propose to the Governor. Meanwhile, low provider rates hit home:

On Monday we confirmed that Valerie’s Day Program is indeed closing. She’s been attending a tiny program contained in a large program; hers has been serving 14 clients who need one-to-one support, mostly due to a high level of physical disability. Another small program, the Senior Program for elderly clients, is also affected by this change. The entire Senior Program is moving from its’ offsite location; whatever remains of it will now be inhouse. All clients from both of these programs who have “intensive medical needs” are being sent elsewhere. What that means here is everyone who wears diapers, who needs to be fed, and who needs a gait belt for walking. There will be 20-30 clients affected by this closing.

The alternative being mentioned is an Adult Day Health Center, designed to serve “older adults” – a senior center. They’re not yet vendorized by Golden Gate Regional Center to serve the developmental disability population and there will certainly be a learning curve. At the time I spoke to Regional Center staff they hadn’t even started a conversation with them.  And while this may be a good fit for some in the Senior Program, the younger 1:1 clients might well prefer to spend their days with people closer to their own ages. I know Valerie does.

Even if every client finds a suitable placement, any move at all will be traumatic to the individuals in these programs. New locations, new caregivers, new bus schedules – all these changes are hard on clients and hard on their families. We must acknowledge how badly our system has failed when this large, nationally-affiliated service provider finds itself so hurting for funds that it’s forced to stop serving its most vulnerable clients.

I’ll be interested to see how the transition to an ADHC goes for all of the displaced clients, but it’s not an appropriate placement for Valerie. She and I have decided instead to return to the Self-Directed Program, which is what Val did during the 4 years she was on the waiting list to get into the 1:1 Program.

In the Self-Directed Program the family is vendorized by Golden Gate Regional Center to run an individualized day program. Families design the program, set goals and schedules, outline hiring criteria, training systems, and monitoring methods. The entire plan is then submitted to GGRC. Once approved, we locate, hire, train, and supervise staff; find activities in the community and keep daily records. We also establish ourselves as employers with the state and federal government and collect and submit payroll deductions. It’s a lot of work, and not something many parents want to or can do.

Is this the best choice? I think so. It worked well for Valerie before, and it will be a relatively easy change for her. She has a few more friends who are in this program now and she’s looking forward to getting together with them during her program day. It will certainly be more work for me, but I’ve done it before and I know what to expect.

It’s a step backward in my ultimate goal to build Valerie a life that doesn’t depend on my presence, but this is where we are now. We’ll work with what we have, and look toward the future for opportunities for improvement. As a state, we have a long way to go.

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