Valerie’s Week in Review – Friday, May 22, 2015

Dear Governor Brown,

Valerie and I were at the Capitol this week; we were there for Senate Budget Subcommittee #3 on Health and Human Services on Tuesday, 5/19. I wish we’d been able to go the Assembly hearing on Monday, to show our support and to hear Assemblymember Tony Thurmond voice his strong support for restoring funding to developmental services.

The members of the Senate Subcommittee were also, all of them, vocal in their support of funding services for the developmental service system and disappointed and frustrated by your unwillingness to understand this urgent need. We listened to testimony after testimony, from self-advocates, from family members, from service providers, heartbreaking stories of program closures and system breakdown.

It was said, over and over: We’re not at the brink of collapse – the system is collapsing now.

It’s great that you put money in the budget to provide community-based supports for people coming out of the Developmental Centers in the near future. But the people already living in the community are suffering now from the disintegration of the infrastructure they rely on, that they deserve, that they have been promised.

Governor Brown, the state can afford this money. There is money now, and there will be a tremendous net gain to the state as more people are transitioned from Developmental Centers into the community. Please reinvest in this system now before it’s too late. So many service providers have closed their doors, more are barely hanging on.

Please. Open your eyes. Open your heart. Open your wallet.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, May 22, 2015

This week Valerie and I went to Sacramento to listen and give testimony at the Senate Budget Subcommittee hearing.

Val and I both wanted to go. We agreed that it was important to show up and speak up for this cause that matters so much in Valerie’s life.

But it wasn’t easy. First, we had a few things to decide:

-Can we go both Monday for the Assembly meeting and Tuesday for the Senate?
No. I could arrange to take that much time off, but Valerie needs to save some time at her day program in case she gets sick later this year. (I’ve mentioned in an earlier post that due to funding concerns, her day program will be forced to drop her and fill her slot with someone on the waitlist if she misses too many days.) We decided to take a calculated risk and skip one day, but that two days would be too many. So we were only there for Tuesday’s meeting.

-Can we bring an attendant with us? It will be so much easier to have help with driving and feeding and toileting and lifting and parking, and better for Val to have someone with two hands free to attend to anything that might come up for her during the 2-3 hour drive each way. The two real questions are: Is anyone available? And, am I willing to give up two nights out in exchange for this help, since we’ll be using that many IHSS/respite hours?
Yes and yes!!

-Can Valerie use her communication device to give testimony herself?
Sub-questions: Is she sufficiently up to speed with her new system and does she have enough motor control (especially under stress) to deliver her message accurately and at the right time? Do I have time/energy/brain power to program specific content into her device for this?
Probably not and probably not. Guilt factor: huge. We’ll bring it along.

Steps to take to get ready:

-Arrange for staff to come along
-Contact day program in advance (so they have time to plan for the best use of limited staff) and let them know Val will miss a day
-Contact bus company to let them know. But not until the day before, or they might (again) make a mistake and not pick her up on Monday
-(Call the bus company again from Sacramento to be sure they will pick her up on Wednesday)
-Plan medication schedule for the day (since it will be different timing from everyday)
-Strategize toileting/hygiene
-Strategize hydration, feeding, cleanup

Pack:

-Medications and supplies for administering
-Formula and tube feeding supplies
-Soft snacks for oral feeding when possible/necessary, and special utensils
-Personal hygiene supplies
-Communication device, charger and mount
-Extra clothing just in case
-Towels, washcloths, trash bags
-Buckwheat/flaxseed pillows to help Val stay comfy while spending hours in her chair
-Calming music and headphones
-Bells to ring at the 9AM Ring My Beall rally in support of Senator Jim Beall’s letter in staunch support of rescuing the developmental service system

We got to Sacramento; we found parking; we made our way to the rally and then on to the hearing. We listened to panelists speak of the complexities of closing Developmental Centers and the ongoing challenges to existing community-based services. We listened to testimony and we offered our own.

-Senator Holly Mitchell said that the Governor’s failure to respond to this funding crisis was “tragic and disappointing”. She said her office had received 275 phone calls in support of the Lanterman Coalition’s agenda.
-Senator Bill Monning said that he appreciates us, hears our calls, and that he feels a “moral imperative to heed our voices”
-Senator Jeff Stone pledged his commitment to the developmental disability community, and spoke of his bill, SB638, designed to ensure that funds coming out of Developmental Center closures go back into this system, not into the General Fund.

All emphasized the continued urgent necessity for us, the stakeholders, to keep reaching out to our legislators and to the Governor. We made our way home feeling slightly hopeful and ready to begin yet another round of emails and phone calls.

Later in the week, we learned that the joint subcommittee meeting on Thursday, 5/21 had yielded two proposals for restoring funding to our system, each one partly responding to this crisis and partly missing the point. It’s progress, but clearly, more conversation with our legislators is needed. Voting will take place next week; our work is cut out for us.

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