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California Senate Bill introduced to increase disability services funding

2 Jul

I just got an email forwarded to me from Senator Beall’s office.  The Senator has introduced a bill to increase funding levels for the regional center system.   Be ready to advocate for passage of this bill.

 

Here’s the email:

Today, Senator Beall introduced SB X 2-1 in response to the developmental community service system crisis. He is joined by Senators Pavley and Monning who are principal coauthors.

 

Specifically, SB X2  1 mandates:

 

  • Provides a 10% increase in the funding paid to a regional center and purchase-of-service vendors;

  • Requires funding to enable the regional center and the regional center’s purchase-of-service vendors to fund certain costs related to minimum wage requirements; and

  • Requires the Department of Developmental Services to develop a 10-year financial sustainability plan.

Action Alert: You guessed it, we need more emails to save our services

1 Jul
By now I hope most readers here are aware that there’s a fight ongoing in California to restore funding levels for developmental disability services.   We asked for a 10% increase, got a 5% increase and that was cut in a budget deal with the Governor.  But the budget isn’t finalized yet.  And there’s still a chance to get some restoration of funding levels into this budget.
It takes very little time to send an email using the link.  And not much more to send more emails using the other links.  Please take the time to do this, and take the time now.    There’s an “extraordinary session hearing” tomorrow morning at 10am.  A bunch of emails to legislators could make the difference in this last minute effort.
If there was one time to act, that time is now.
Here’s the letter.
Dear Friends,
We aren’t doing very well generating emails to legislators this time around to save our developmental services.
I’m not sure why. Too many glitches? I get that and I apologize. Discouragement? More about that in three paragraphs, but first here’s what I’m imploring you to do now. It will take about 40 seconds and it will make a difference.
And second, if you’re in LA County, please click a second time email the 10 legislators there who we think have the most power to decide whether our community gets the funding increase we need to stabilize our service system. (After I set up the system to try to make it easy to email the 10, I found that two of them now only accept emails from outside their districts if they come through their web sites, so the ones you send them will bounce back. If you’re willing to spend another minute on this… Click here to email Senator de Leon. Click here to email Assembly Member Gomez. If you want to send them the same message you sent the other eight, you can cut and paste it into their web site forms.)
Now for the analysis/opinion.
 
It’s hard for me to know whether to feel encouraged or discouraged about the continuing battle to stop our community services system from disintegrating. The two things I know for sure are that we’re in a different kind of situation now than ever before, and that we have no choice but to go on fighting.
On one hand, last week Governor Brown signed a budget that contains no funding relief for regional centers and provider rates and continues the community system down the path to system collapse. The Legislature accepted the governor’s consistently, unrealistically low revenue estimates, leaving little money for anything new. They gave in, evidently, because they know he has a line-item veto and can simply take out any money they put in beyond his revenue estimates. They gave no evident consideration to a veto override, as earlier Legislatures tried and sometimes succeeded in doing the last time Jerry Brown was governor. And after they accepted his low revenue estimates last month, they didn’t prioritize us high enough to get any of what little new money Governor Brown admits exists; or at least that’s what the governor said at his press conference with the legislative leaders.
Sounds bad, doesn’t it?
On the other hand, the legislature and governor put us into the special legislative session along with high-priority, big-ticket items like road repair and MediCal provider rates, while they left a lot of other services on the cutting room floor. There’s not a chance in the world we’d be in the special session were it not for our community’s first-ever united lobbying in the Capitol, our low-budget but effective media work statewide, and the unrelenting grassroots campaign of meetings, calls, rallies, tweets, Facebook postings, petitions, and emails. We’ve got more genuine sympathy in the Legislature — and more political power — than I’ve ever seen. That’s been reflected again in the last two weeks by public statements from the legislative leaders and very strong speeches on the Senate floor by both Democratic and Republican legislators. And the Democrats have a plan that just might work to convince the enough Republicans to vote for targeted revenue increases to cover the costs.
So that sounds good, doesn’t it?
There’s no way to tell how the fight will turn out, or whether it will go on a few weeks or many months. So all I can suggest is let your anger over being left out of the budget get you motivated, and let your hope for an ultimate win keep you motivated. What else can we do?
Thank your advocacy.
Greg
PS. And as I usually ask, after you send the emails, please forward this Action Alert far and wide. We’ve got more political power than ever, but we need to demonstrate more.
 
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

Protesting Kerri Rivera and Chlorine Dioxide Abuse

26 Jun

You always hear from groups promoting false cures “listen to the parents”. Well parents, like me, see MMS (Miracle Mineral Solution) aka CD (Chlorine Dioxide) as abusive. There is no evidence that it works. There is no good explanation for why it should work as a therapy. And there is the chance of adverse reactions.

No benefit and a risk. Risk/reward ratio is 0.

The Skeptical Beard

Guest Post by Alison Bernstein of Mommy, PhD

This past Saturday, a small group gathered outside the Loews Chicago O’Hare Hotel to protest the presentation by Kerri Rivera at the AutismOne conference. Kerri Rivera promotes the use of chlorine dioxide, or CD, an industrial bleaching agent, for bleach enemas to “cure” children with autism. Here, I am sharing stories from three of the protesters. (If you haven’t read about this issue before, please see the end of the article to learn about CD, Kerri Rivera and why we were protesting her presentation at AutismOne.)


Rebecca F is a mom to two boys, one with autism. She joined to promote awareness and respect for her son and all those with autism. She wanted the opportunity to talk directly to parents because so many people try to exploit special needs parents, both financially and emotionally.

Kim Z is a mom who participated…

View original post 2,360 more words

Illinois to Kerri Rivera: Show that MMS works or stop making claims.

26 Jun

MMS is a scam, plain and simple. And it has been very frustrating to watch as people make grandiose claims with no one making them actually back those claims up.

Which is why I appreciate that the State of Illinois basically asked Kerri Rivera “Put up or Shut Up”. And she chose the latter. At least in Illinois.

NBC Chicago has an article up: State Takes Action Against “Miracle Treatment” For Children

In that article they quote the Illinois Attorney General:

“I’m very thankful that NBC 5 actually brought this to our attention,” said Illinois Attorney General Lisa Madigan. “Because clearly, you have a situation where there are people, complete quacks, that are out there promoting a very dangerous chemical being given to young children.”

And, further:

Madigan’s office dispatched investigators to a Rivera appearance at a suburban Chicago hotel in late May. After her seminar, they served her with a subpoena, demanding that she substantiate the claims she had made of her protocol’s effectiveness in treating autistic children.

Madigan’s office said Rivera entered into what is known as an assurance of voluntary compliance, where she agrees not to conduct future seminars in Illinois.

Substantiate the claims: put up.

Agree not to conduct future seminars: shut up.

Here’s the agreement.

This autism parent thanks the State of Illinois for stepping up and taking action. MMS is a scam and it is about time people started taking action to stop the overblown claims.

—
By Matt Carey

TED Talk: Steve Silberman: The forgotten history of autism

22 Jun

Steve Silberman has been researching the history of autism for 5 years.  I met him at the start of this journey, at IMFAR in San Diego and even then he had a good grasp of autism.  Since then he has unearthed a great deal and I am eagerly awaiting his book (which I have already pre-ordered).

Recently, Mr. Silberman gave a TED talk: The forgotten history of autism.  And it is now online.

—

By Matt Carey

More California Advicacy Needed: take 20 seconds to protect services

22 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Yes, this is a repeat of an article posted over the weekend. But weekends get low traffic and we need to keep this effort moving forward. And I am adding the message I sent my legislators below.

As a citizen (born here!) of California, I made a promise to disabled Californians that I would help support them. I do this with my taxes and have for years.

Now that I have a disabled child, I see that the level of support we offer has been low and recently has been diminishing.

We Californians made a promise, we need to keep it.

I am extremely disappointed with the Legislature for caving in to Governor Brown and passing a budget with not one dime to stop the deterioration of our developmental services.

Please do much, much better in the special legislative session. Give the developmental disability community the emergency 10% across-the-board funding increase we need starting NOW. Anything less won’t stop the service system from collapsing, just slow it down.

And please, don’t pass any more unfunded mandates on our community service providers. When you vote on Senate Bill 3 to raise the minimum wage and any other bills to make our providers spend more, insist that the state cover the full costs to prevent the loss of ever more of our services.

The people who take the front lines in supporting our disabled have one of the most demanding jobs in our State. I started out on the minimum wage and know the limitations of it. I’m support an increase.

Be compassionate with the minimum wage, but understand that we have to realize that this will impact our most vulnerable citizens.

Respectfully Submitted,

Matthew J. Carey

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More California Advicacy Needed: take 20 seconds to protect services

21 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed 

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

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San Jose (and across the State) Keep the Promise Rally

16 Jun

Just got this letter and am posting it here: Rallies are being held to advocate to protect the budget for disability services in California.  This letter focuses on the San Jose Rally, but also gives links for rallies across the state.

We need to do what we can to preserve services here in our state.  Now is the time to act–call, fax, attend a rally.

KEEP THE PROMISE RALLY

 

Friday, June 19

12:15 pm to 1:00 pm

San Jose City Hall Plaza

200 E. Santa Clara St.

 

Join Senator Jim Beall for an important rally with consumers and advocates from the developmental disabilities community to urge Governor Brown to approve the Legislature’s modest budget increase and reform proposal for the developmental disabilities services programs.

 

Programs are in crisis and closing at record numbers. The gains obtained in the Legislature’s budget cannot be lost.  We must keep lobbying because 280,000 people are counting on us.

And as you lobby the Governor and Leadership remember: Your stories matter and your advocacy has an impact.  Join us Friday and share your story directly with the Governor by following the instructions below.

 

Leave your message via these options:

Phone: 916-445-2841 // Fax: 916-558-3160

 

https://www.facebook.com/jerrybrown

https://clicktotweet.com/em7dn

https://govnews.ca.gov/gov39mail/mail.php

Advocates across the state have organized a statewide campaign to tell Governor Brown to support the budget and reform proposals for developmental services! Learn more about how you can participate and get involved.

 

Keep The Promise Rallies will be taking place at the following locations:

 

New! San Jose

www.tinyurl.com/06-LC-SJ

 Sacramento

www.tinyurl.com/LC-06-sac

 Oakland

www.tinyurl.com/LC-06-oak

New! San Francisco

www.tinyurl.com/06-LC-SF

New! Los Angeles (2 rallies)

www.tinyurl.com/06-LC-LA

San Diego

www.tinyurl.com/LC-06-SD

Online Vigil

http://thearcca.org/38.html

 

 

The California Budget Battle Continues: Let It Shine: Candlelight Vigil

14 Jun

There is still a big legislative effort on achieving a budget increase for disability services.   People pushed for a 10% increase. But this was reduced to 5% by committee–and that could be reduced or eliminated as the budget goes through the legislature and to the Governor’s desk.  Now would be a good time to tweet, email and call.  If you can do all three, please do all three.  Here’s a video to link in a tweet and some hashtags to include.

#LetItShine #KeepThePromise #DoTheRightThing #CABudget

 

How to get involved in the virtual vigil
  • Include the hashtags: #LetItShine #KeepThePromise #DoTheRightThing #CABudget

  • And tag the two legislative leaders and governor: @kdeleon @ToniAtkins @JerryBrownGov

 

Here’s a message from The Arc & United Cerebral Palsy California Collaboration:

Make 5 short calls or fax 5 short letters
For those who haven’t yet made five short calls or faxed (not just emailed) five short letters to the five top decision-makers, please do that as soon as you can, too. People who’ve been making the calls tell me that some of the staffers answering the phones are getting so many calls they can practically tell the callers what they are going to say. That’s a big tribute to our united community effort and a demonstration of our new political power. But we need a lot more.
Here’s who to call or fax:
–           Governor Jerry Brown, 916-445-2841 (fax 916-558-3160)
–           Senate President Pro Tempore Kevin de Leon, 916-651-4024 (fax 916-651-4924)
–           Assembly Speaker Toni Atkins, 916-319-2078 (fax 916-319-2178)
–           Senate Budget Chair Mark Leno, 916-651-4011 (fax 916-651-4911
–           Assembly Budget Chair Shirley Weber, 916-319-2079 (fax 916-319-2179)
What you might say
 
“My name is __ and my address is __. I’m calling about the developmental services budget because ___ [tell them why you care].
“The budget conference committee’s actions will not be enough to stop our community service system from continuing to crumble. But they will save some of our services that that will close without them. Please don’t allow any cuts from what the committee passed.
 
“And please support the system reforms that the committee approved -– especially the language that says the savings from closing the developmental centers should go to the community services.
“Thank you.”

‘Miracle autism cure’ seller exposed by BBC investigation

12 Jun

The BBC have a new story taking on the so-called “Miracle Mineral Supplement” in ‘Miracle autism cure’ seller exposed by BBC investigation.

MMS (AKA chlorine dioxide, CD, or part of a so-called “parasite protocol”) is a bleach solution produced by mixing two chemicals which are sold separately and manufactured often in rather dubious factories. Case in point, the BBC tested the chemicals they were given and found they were much stronger than labeled.

Through his website, Mr Edwards, who says he is not attending the conference, sold the researcher the one bottle of liquid labelled as 22.4% sodium chlorite and a second labelled as 4% hydrochloric acid.

When the BBC sent the chemicals to Kent Scientific Services, an independent laboratory, they were found to be 57% and 45% stronger than the advertised concentration respectively.

The BBC approached a seller of MMS and purchased the chemicals. The person selling MMS, one Leon Edwards, made the usual huge claims: it cures malaria, HIV, cancer and, of course, autism. Of course they don’t say “cure”, they say in this case “purge”.

MMS is a scam, plain and simple. It is sold as a cure to autism parents for use on their disabled children. The sales pitches present it with the usual approach: claims of children “recovered” together with some scienc-y sounding discussion to make it seem legitimate. And, of course, if you blame vaccines for autism and claim your product somehow heals vaccine injury, you will get nothing but support from a vocal group of autism parents.

Fiona O’Leary–an autism parent–is quoted in the story. She’s been a major advocate for autistic kids through her efforts to expose MMS.

Fiona O’Leary, a mother of two autistic children, is a leading campaigner against MMS. She warned: “This has been offered as a cure for autism in 60 countries.

“What worries me is people normalising this treatment – it does not even warrant the word treatment, autism is not a ‘disease’ that you can ‘cure’ with bleach.

“We need legislation so that people offering it are always prosecuted, but we don’t see the authorities addressing this issue.”

She added: “The suffering children are going through is shocking – it’s child abuse.”

—
By Matt Carey

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