Valerie’s Week in Review – Friday, May 29, 2015

Dear Governor Brown,

I know it’s another week or two before you receive the amended budget. During this time, I humbly ask you to give some attention to the Developmental Service System, and how badly it needs your help.

Think back to the cuts and discounts and freezes this system has suffered for decades. Consider the erosion of services as funds dwindled. Think about programs offering less effective services, then fewer services, and finally closing. Think of people with disabilities living in the community, as is their right, with the supports that allow them to live independently slipping away. Think of low-paid staff who don’t show up on time or at all, transportation that’s so unreliable that appointments are impossible to keep. Think about fewer and fewer choices and think about how much restoration of funds would benefit these people, this long-suffering and much-deserving system.

I’ve heard people say that you don’t like entitlements. What does that mean? It can’t mean that you don’t see that some people need help to survive. It can’t mean that you think people with physical disabilities, developmental disabilities, mental illness, are at fault for their situations and don’t deserve help. It can’t mean that you don’t realize that we as a civilized society have a moral responsibility to take care of our most vulnerable citizens.

Please, Governor Brown, have some compassion. Restore funding to Developmental Services.

Thank you for your consideration.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, May 29, 2015

This week we learned the outcomes of the subcommittee hearings in Sacramento last week. The news was a little good and a little not-so-good. There were two different proposals.

The Assembly proposed a 10% increase across the board over two years… which means 5% in 2016 and 5% in 2017. I love that it’s across the board – money is desperately needed everywhere! – but it’s only 5% now, and it won’t start till January 2016 – too late for some programs that are just barely squeaking by now.

The Senate proposal is almost great. It provides the full 10% to many services. It provides for funds coming out of Developmental Centers to go into the DDS budget, and it provides for updating of rate setting methodologies. However, it ignores some critical services, like Regional Center operations, Group Homes and Day Programs.

Day Programs are very much on my radar this week since we received a confusing letter from Valerie’s program late on Friday, of course too late to speak with anyone there until Monday.

It addresses the 20-30 clients who are in the Senior Program and the 1:1 Program (Valerie’s program), in both cases clients with a high level of need. Although the letter is strangely indirect and cites no specific policy change, it mentions twice that individuals with “intensive medical needs” or “high levels of medical care and need” may no longer be served by this program. They say people who need to move will be supported by the Regional Center to make the necessary changes, and the letter assures us that there are possible options.

Does this mean Valerie? Maybe. Probably. She definitely has high medical needs, but they don’t actually do any medical care at the program. In fact, we contort her hydration and med schedule around her day there because they specifically do not give medication or deal with g-tubes.

Whether this means us or not, there are 20-30 people with high medical and support needs who will now have to be transitioned elsewhere. I – and the other folks who received this letter – will just have to wait until Monday when we can speak to someone at the program to find out what’s coming next.

This week the Budget Conference Committee will meet, look at the Senate and Assembly proposals, and come up with one that everyone agrees on to send to the Governor. Listen up, Conference Committee…Day Programs are shrinking before our eyes. We need help urgently, we need it across the board and we need it NOW.

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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.

Valerie’s Week in Review – Friday, May 15, 2015

Dear Governor Brown,

I am beyond disappointed. I am angry and I am shocked at the way you have completely disregarded the needs of Californians with developmental disabilities.
It’s difficult to address you with the respect due the governor’s office when you clearly have no respect for me, my daughter or our community.

During this budget season I have heard many people in the Capitol say that you don’t care about our issues. I didn’t believe them; I couldn’t believe that the heart-centered man you once seemed to be no longer exists. I believe them now.

We have been asking for 10 percent to be restored to DDS – not a new 10 percent, but in fact a small portion of the monies that have been drained from this system over the years. Developmental Services were hit hard during the great recession and though the state has recovered, though funding has been restored to so many other areas, services for the most vulnerable of our population remain critically underfunded. In fact, you and all other elected California officials were just granted a 3 percent raise, weren’t you? How can you possibly justify this?

How can you justify not allocating even 1 percent to us, not even a mention, or a plan for moving forward? You know, I know you have been told, how the numbers are growing, how autism alone is expected to double in the next 5 years and triple in the next 10. How can you leave this mess for future governors?

I’ve heard people say that you only care about your legacy. Do you care that you’ll be remembered as the man who let the developmental service system fall apart? Who turned his back on the Lanterman Act, and left the directives coming from the Federal government’s Final Rule to be somebody else’s big problem? Don’t you think that will reflect badly on you? I no longer have hope that it makes any difference to you what happens to the 280,000 individuals in California with developmental disabilities. I hope at least that you’ll consider what future Californians will think of you when this system comes crashing down, and adjust the budget to support these vulnerable citizens who are counting on you. We will not forget your actions.

Sincerely,

Audrey deChadenedes

Valerie’s Week in Review – Friday, May 8, 2015

Dear Governor Brown,

I know that your budget revisions will be coming out later this week. I’m keeping my fingers crossed in hopes that you’ve heard everything we’ve been saying. I’m hoping that you’ve understood the importance of restoring funding to the developmental service system; I’m hoping that I wasn’t wrong to vote for you. I’m hoping that you do care about people and that you understand that every person’s life matters and everyone has something to contribute.

I’m sure you’ve seen Senator Jim Beall’s letter. I hope you’ve taken it very seriously. He clearly explains the situation and the steps that need to be taken. Please listen to Senator Beall and the 62 other Senators and Assemblymembers who have signed this letter. Please support a 10% increase in the regional center operations and purchase of services budget.

Thank you so much for your consideration. Again, you can also read this at http://www.valeriesweekinreview.wordpress.com

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, May 8, 2015

We spent a fair amount of time this week finishing up Valerie’s annual eligibility paperwork. For In-Home Operations (the nursing portion of her IHSS), I need to fill out a 13 page report twice a year, then get it to her primary doctor for his signature, pick it up when his office calls, and mail it off to Sacramento. Fortunately, there were no major roadblocks this time around and I was able to get everything in the mail by Wednesday. I also reviewed a draft of Val’s new IPP and spoke with her case manager about it.

Val had two small seizures this week – not big enough to keep her home, but reflecting a definite increase in seizure activity this last month and worth scheduling a neurology visit. I called for an appointment, left a message, then called again two days later when I hadn’t received a call back. Another message; I’ll call again on Monday. Valerie was able to go to her day program all week, but she slept through her Tuesday night dance and drama class, which is one of her favorite activities.

Later in the week we attended a rally to Save Our Services at Civic Center Plaza in San Francisco. Around 100 people participated, individuals with disabilities, their families, and service providers. Our concerns – the same concerns I’ve been mentioning over and over – are inadequate rates for services, insufficient funding for regional centers, and the impact of this funding shortfall on the quality and availability of services.

We need 10% this year!

Service providers have been pushed to the edge. Where new programs once opened, long-serving ones now close or cut back on services, leaving fewer and less satisfactory choices for consumers. To be clear, 10% is only a band-aid. 10% will bring the system up to 1996 levels and hopefully will serve as a stopgap measure that will mitigate the damage long enough for real reform to occur.

Then, we need a 5% annual increase.

Real reform is complex and takes time, but the system is so far behind; inflation and the growing numbers of people needing services force us to keep moving forward. California’s service system needs the assurance of 5% annual increases while work is ongoing to prevent the temporary gains of the 10% increase from being eroded.

Finally, we need reform.

Most service provider rates have been frozen for well over a decade. Most salary levels in the “core staffing formula” used to create regional centers’ budgets haven’t been updated since 1991. Service provider rates and the core staffing formula must be reformed to guarantee that future funding levels are both adequate and sustainable.

As our good friend Liz Grigsby said at the rally: “We didn’t ask to be disabled, but since we are, we want to have a life just like everybody else. Please help us, Governor Brown, to maintain our independence and stay in our community”

*If you’d like to read Senator Beall’s letter, go here:

http://www.arcanet.org/docs/Local-Advocacy-Beall-Subs-Letter.pdf

Valerie’s Week in Review – Friday, May 1, 2015

Dear Governor Brown,

Hello again. I hope you’ve been thinking about how much money you want to budget for Developmental Services. I hope you’ve decided to increase their funding by at least 10%. I’m sure you’ve heard the same statistics I have and know that the shortfall is closer to 45%. Please don’t leave Californians with developmental disabilities stranded.

Valerie had a busy week. The issue that stands out the most is housing, and that’s what Valerie’s Week in Review will focus on. I’m sure you know how dire this situation is. How is an aging single parent supposed to ensure her daughter’s safe, healthy, and happy future when there’s no place for her to live? When even the services that do exist are hanging by a thread? Please help. Thank you again for reading our report.

You can also read it online at http://www.valeriesweekinreview.wordpress.com

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
MAY 1, 2015

This week was a busy one for Valerie. Besides her usual 5 days at her day program, Monday evening Conversation Club, and Tuesday evening Dance and Drama Class (City College), she had an appointment with her Pulmonologist, a Physical Therapy appointment, and her annual IPP meeting.

One of the key team members at her IPP was a representative of a Bay Area non-profit that works to find affordable housing for people with disabilities.

We started talking and thinking about this at least 5 years ago. As previously stated, I won’t live forever, and it seemed wise to explore options for Valerie’s future and put a plan into place while I can still work with providers to create a home and supports that serve Valerie’s needs. We visited group homes – in Val’s case, she’d have to go to an Intermediate Care Facility because of her medical needs. She decided she did NOT want that. The places we visited looked and felt like hospitals, not homes, and the residents didn’t interact at all. Valerie wants to live in a lively, active, integrated environment, with people of differing abilities. She loves being part of her community and this is not only good for her, I believe it’s good for the community too.

At that time, 5 years ago, we were advised to start getting Valerie onto waiting lists, as the typical wait time was 2-5 years. Val is now on 5 waiting lists for housing and according to the very discouraging information we received at her IPP, there is no change in sight.

In fact, she didn’t even make it to the wait lists for the last two housing opportunities we heard about. There was a lottery to get onto each wait list; the woman who attended Val’s meeting told us that for just one of those “opportunities”, a building with 65 units, 10,000 applications were submitted.

In the 1980s California began the process of de-institutionalizing people with developmental disabilities, explicitly requiring “community-based” housing solutions. As a result, every housing element must contain a plan for addressing housing needs for the developmentally disabled within the jurisdiction. Public policy is one thing. Reality is another: there is currently no available housing for the growing numbers of developmentally disabled San Franciscans and no plans to expand availability of developmental disability housing in the city.

So Valerie goes on (or tries to go on) long, long wait lists, along with all the others eligible for low income housing. The numbers are daunting. A report issued this week by the California Housing Partnership states that California has a shortfall of 1.54 million homes for VLI (Very Low Income) and ELI (Extremely Low Income) renter households and this affects every county in the state. Individuals with developmental disabilities, who often live only on SSI, fall into these categories. Only 12% of adults with disabilities in CA have full-time employment. State and Federal investment in the production and preservation of affordable housing in California has dropped 69% since the great recession.

What do we do? We’ve joined with other local families trying to locate and create solutions (PANDH SF), and we try to connect with our legislators in hopes that they will understand and address this dire need. I pray that they will hear us.