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Obama Budget Brings Mixed Bag For People With Disabilities

15 Feb

President Obama has released his proposed budget. From Disability Scoop: Obama Budget Brings Mixed Bag For People With Disabilities.

As far as special education, there is a slight increase proposed:

In a plan featuring flat or reduced spending for many programs, special education got a boost. President Barack Obama included $200 million in extra funds for state grants for the Individuals with Disabilities Education Act, or IDEA, and added $50 million to help young children with disabilities.

The increase is “modest” for an $11.5 billion program, says Deb Ziegler of the Council for Exceptional Children, which lobbies on behalf of special educators. But, she adds, “in this budget climate, we’re appreciative of anything we get.”

While not fully funding IDEA, this is good in light of republican plans to cut Special Ed funding.

On the other hand, support of adults is not faring well:

Other programs for Americans with disabilities are likely to fare worse. Under Obama’s proposal, funding to ensure voter access for people with disabilities will be eliminated. And there will be $104 million less in federal money available to build new housing for those with disabilities.

What’s more, a program that administers federal grants to promote the inclusion of people with developmental disabilities in the community is slated to be cut nearly in half.

“There’s a lot of stuff that’s very concerning,” says Ari Ne’eman, president of the Autistic Self Advocacy Network. “Everybody recognizes that these are difficult fiscal times but we need to make sure that we aren’t sacrificing the long-term rights and opportunities for people with disabilities.”

These are indeed difficult fiscal times. But we need to support people with disabilities. All people, not just children.

More at Disability Scoop.

House GOP Looks to Slash Education Spending

14 Feb

House GOP Looks to Slash Education Spending is an article at Education Week. It’s a scary read.

It starts out:

House Republican leaders put out a bill last night that would slice and dice education funding far below current levels and far below what President Barack Obama wanted in his never-enacted fiscal year 2011 budget request.

Fiscal year 2011. That’s this year. Yes, they would cut funds out of the budget that’s already ongoing. How much?

The measure, which would continue federal funding for rest of the fiscal year, takes aim at some programs that were previously considered untouchable, including special education spending and Pell Grants to help low-and-moderate income students pay for college. Overall it would cut $4.9 billion from the U.S. Department of Education’s fiscal year 2010 budget of $63.7 billion.

$4.9 billion. That’s a big chunk of change. About 8% of the total budget.

What really scares this reader is this statement:

Special education, which is typically a Republican priority, would be cut by $557 million, below its $11.5 billion funding in fiscal 2010.

About a 5% cut.

As we’ve discussed a number of times, in the US, the Federal government “committed” to pay 40% of special education costs. That commitment has never been met, with federal support levels of about 17% being more typical.

Schools will be facing budget cuts in the following year. State and local tax revenues, the primary source of elementary and secondary education funding, are down. Now is the time for the federal government to step in and make good on their commitment. Step in and help save the programs, help school administrators to focus on keeping kids in appropriate placements, not force them to make bad decisions in order to meet budgets.

The Autism Action Network is steaming mad at Bill Gates

13 Feb

I’m calling on readers to join an action alert by A-Champ (now the Autism Action Network). Well, “join”. You see, they are really mad at Bill Gates for calling out Andrew Wakefield in an interview on CNN. They want people to use a link to send a message to Mr. Gates. Well, the thing is, you get to send the message you want to send.

Here’s the backstory. Sanjay Gupta asked Mr. Gates about the recent press coverage of vaccines, specifically the autism question and Andrew Wakefield:

Gupta: There has been a lot of scrutiny of vaccines recently — specifically childhood vaccines. There has been a lot of news about is there a connection with autism, for example. What do you make of all that? Dr. [Andrew] Wakefield wrote a paper about this [in The Lancet in 1998] saying he thought there was a connection. And there were lower vaccination rates over a period of time as a result in Britain, then the United States. What are your thoughts?

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important

A-Champ, now the “autism action network” reworked this and focused Mr. Gates comment on themselves:

“We think Bill Gates should clarify who he thinks is killing children when he referring[sic] to parents who think vaccine injury may have caused their child’s autism.”

They provide a link to a site where you an send Bill Gates an email: http://capwiz.com/a-champ/utr/1/NRIKOOVHZR/CVCJOOVIIG/6429002946

The recommended message is:

Dear Mr. Gates,

I watched you on the Sanjay Gupta, MD program and was stuck by your description of people who question vaccine safety and the possible role of vaccines in causing autism as “baby killers.”

The Bill and Melinda Gates Foundation has, as one of its stated goals, improving vaccine safety. How is that different from the goal of the vaccine safety advocates you described as “baby killers?”

There is no question that vaccines injure and kill a portion of the people who get vaccines. This is an undisputed fact. And there is no question that vaccines can be made and administered with greater safety. But your comments only serve to end rational and meaningful discussion of vaccine policy.

I ask you to clarify who exactly who you are describing as “baby killers.” And to apologize to those people who have been injured or killed by vaccines and their families.

Sincerely,

Of course, you can delete this and add whatever your own message is. You can even change the subject line (probably a good idea if you want to have any chance of being read). Nothing keeps you from telling Bill Gates (or, more likely, his screener) that you disagree with groups like A-Champ.

A-Champ asked in their call “Please forward this message to friends and family and please post it to Facebook and other social networks.”

Glad to help.

Another Big Day in Sacramento – And the Fight Goes On

11 Feb

An action alert from The Arc of California and United Cerebral Palsy. Yesterday was one of the hearings on the proposed budget cuts for the disabled in California. Due to good advocacy, there was a big turnout.

The fight goes on. If you are in California and you haven’t called your representatives yet, do so.

Dear Friends,

We had another great turnout in the Capitol yesterday, even bigger than last week.

The members of the Senate subcommittee conducting the developmental services budget hearing – Senators Mark DeSaulnier, Elaine Alquist and Bill Emmerson — listened to us attentively. The hundreds of you who talked to them were, if anything, even more articulate and compelling than last week, and they heard you.

And everyone in the Capitol was aware of our presence. They could hardly overlook it when the security people had to close off admission to the 4th floor.

Neither the Senate nor the Assembly budget subcommittee took votes on Governor Brown’s proposed $1.1 billion cut in the budget for community services for people with developmental disabilities. (The governor’s proposal calls it a $533.5 million cut, and we’ve been estimating it at $750 million including lost federal funds, but the new Senate staff analysis put the total cut at more than $1.1 billion.)

So the fight goes on. The Senate and Assembly budget committees could start making real decisions as early as next week.

Here are two things you can do now:

1. If you haven’t called your own local state senator and assemblymember to protest the cuts, please call today.

The most important thing when you call is to speak from your heart. Tell them why you care and what the end of Lanterman Act services could mean to you and those you care for.

If you’re worried that they might think you’re being alarmist, you can quote the Senate budget subcommittee staff’s comments from yesterday’s hearing agenda. In dry government language, the staff member says the same thing we’ve been saying:

“Subcommittee staff believes that the overall [proposed budget cut] is not fully feasible…. Significant reductions have occurred within the developmental services system over the past several years. These reductions have included some eligibility changes, significant changes to services, increasing family cost-sharing, reducing rates, and related actions. As a result, reductions of the magnitude that are proposed are not achievable if the Lanterman Act is to be maintained.”

And again, if you don’t know who your local state senator and assemblymember are, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials, enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.” Call their Sacramento offices unless you already know someone who works in one of their local offices. And be sure to get the name of the staff person you talk to, so you can call or email the same person in the future.

2. Forward this Action Alert to everyone you know who you can ask to make the calls and also join UCP-Arc Action E-List, our most important tool for mobilizing support at critical moments.

To join the list, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials (the same place you go to find out who your senator and assemblymember are), scroll down a little to “California Legislative Action Center,” click on “Action E-List,” and fill in your contact information.

And thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California

The Autism-Vaccine Debate: Why It Won’t Go Away

11 Feb

Who said it was? Backstory: “The Autism-Vaccine Debate: Why It Won’t Go Away” is a recent blog post by David Kirby at the Huffington Post. Yes, he’s come back to talk about autism and vaccines.

I say again: who says the debate is going away? The scientific debate on the main issues: thimerosal and the MMR is over. That scientific debate has been over for some time. The rising autism “rate” wasn’t caused by mercury. It wasn’t caused by MMR. Autism isn’t a “novel” form of mercury poisoning. These facts don’t stop activist groups and online discussions, or the debate elsewhere for that matter.

The debate isn’t going away, but is is morphing. From the piece by David Kirby:

There is clearly no single cause of autism, and we are not going to find answers looking only at genes, or for that matter, only at thimerosal or MMR.

David Kirby’s main contribution to the discussion was his book: Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. Mr. Kirby has been a major proponent of the mercury hypothesis since he started on that book, fed by research garnered by SafeMinds founder Lyn Redwood. The book wasn’t about “vaccines” and the autism epidemic, or “environmental causes of an autism epidemic”, it was about “mercury in vaccines and the autism epidemic”.

The debate isn’t going away, but it is getting weaker. And it’s just moving a few goalposts: Let’s play down mercury. Let’s play down MMR. It’s the “Autism-vaccine” debate, not “Mercury in vaccines and the autism epidemic”.

Mr. Kirby does in this blog post what he has done so well for the past few years. He puts the current talking points out there, nicely packaged. Here’s a good example, where he even manages to include a plug for the latest pseudo-research. It’s amazing, really:

That’s because evidence of a vaccine-autism link did not come to them via a 12-year-old study published in a British medical journal, nor from Hollywood celebrities: Not very many had heard of Wakefield until recently.

Some of these parents actually keep up with the science, including a new review of autism studies in the Journal of Immunotoxicology which concludes: “Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.”

Simply amazing. People haven’t heard of Wakefield, but they know about a paper that just came out yesterday in a relatively obscure medical journal? It’s product placement. Very slick. Mr. Kirby plugs this paper as though it is as natural as all the judges on “American Idol” drinking from great big red Coca Cola cups.

He also gets in the “the discussion isn’t all about Wakefield” theme that is in the current responses to the disclosure of fraud in Mr. Wakefield’s research. “Not many people had heard of Wakefield until recently.” As a side note, the obscure Mr. Wakefield appears on 30 pages of Mr. Kirby’s book, Evidence of Harm.

Let’s check whether people have heard about Mr. Wakefield. According to a recent Harris poll (one that Mr. Kirby cites, by the way):

In the new Harris Interactive/HealthDay poll, 69 percent of respondents said they had heard about the autism-vaccination theory — but only half (47 percent) knew that the original Lancet study had been retracted, and that some of that research is now alleged to be fraudulent.

The question “Are you aware that the medical journal that published the paper linking vaccines to autism has now withdrawn the paper, and a published account describes the research as fraudulent?” 47% of people asked said yes.

That’s a pretty big number of people who not only (a) knew about Mr. Wakefield’s paper but also (b) knew it had been retracted and described as fraudulent. What other research paper would the public know about in such great numbers, 12 years after publication?

To state the obvious, yes, Mr. Wakefield and his research was known. Well known. It has been a big piece of the vaccines-cause-autism debate.

Here’s the table from that Harris poll question, showing that 47% of people had heard about the retraction and fraud. Even more important, take note of the fact that people who are informed about the retraction and the fraud are much less likely to believe that vaccines cause autism (click image to make big):

Yep, 65% of people who have heard about the retraction and fraud say that the vaccines-cause-autism idea is “not true”. Mr. Wakefield’s work was known and important to the vaccines-cause-autism cause.

Mr. Kirby then goes into the standard talking points of the day: only two vaccines (MMR) and one ingredient (thimerosal) have been explored for relationship to autism, followed closely by a denial that any of those studies were of any value because they are performed by people who have a “vested interest”.

Of course, “vested interests” in those promoting the vaccine hypothesis, both professional and financial (of which Andrew Wakefield is only the most prominent example) are ignored. As we quickly see as Mr. Kirby warns us that the expected SafeMinds response is on the way to the recent paper showing no link between thimerosal exposure and autism.

Mr. Kirby finishes with “The CDC estimates that there are about 760,000 Americans under 21 with an ASD. Even if just 1 percent of those cases was linked to vaccines (though I believe it is higher), that would mean 7,600 young Americans with a vaccine-associated ASD. ”

Yes, Mr. Kirby is adapting. Adapting in much the way that I have said the vaccine-causation community needs to adapt in order to stay alive. They need to abandon the “epidemic” rhetoric. Claim that if there are people with vaccine-induced autism, the number is very small, too small to be picked up by epidemiology.

Rather than really adapt, Mr. Kirby wants to play both sides of this. He wants to say, “what if the number is really small” and say that the data available show that the rise in autism prevalence is correlated with vaccines.

At the risk of being accused of “product placement” myself, I can’t help but bring up an incident discussed in the book “The Panic Virus“. I don’t have the book handy, so I apologize if I get this not 100% accurate. Seth Mnookin tells of talking to Dr. Jon Poling, father of Hannah Poling, during an AutismOne conference. While Dr. Poling is telling Mr. Mnookin that, yes, the concession in the vaccine court isn’t about causation, David Kirby is giving his talk saying exactly the opposite.

One question I know I will face soon is: why do I bring up David Kirby again? Why not move on from the vaccine debate. In the end it is because of statements like this:

In my opinion, many children with autism are toxic.

After over five years as a self-described member of the autism community, David Kirby still uses damaging language. Children are not “toxic”. Even children who have demonstrated heavy metal poisoning (which autism is not) are not “toxic”. If you touch them, you don’t get poisoned. They are “intoxicated”. But, that doesn’t read well, does it? I’ll say it again, autism is not a form of mercury poisoning. I really don’t need my kid labeled “toxic”.

I don’t know if David Kirby is “anti vaccine” or not. If you notice, I rarely use the term. I don’t care if David Kirby is anti vaccine. It isn’t the label “anti-vaccine” that matters. David Kirby is intellectually dishonest and his actions are irresponsible. On a more personal note, he puts forth an image of autism that is damaging to my kid.

Sloppy science – a perfect example of how the anti-vaccine crowd will listen to anything

11 Feb

Both Age of Autism and David Kirby have recently reported on a new review paper with Age of Autism describing it as ‘pretty interesting’ and David repeating a part of the abstract:

Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.

So, should we all in the skeptic camp be reaching for our humble pie and our knife and fork? Not exactly. Lets take a look at the contents of this paper. Lets start here:

The vaccine organism itself could be a culprit. For example, one hypothesis of the cause of autism is that the pertussis toxin in the DPT vaccine causes a separation of the G-alpha protein from retinoid receptors in genetically at-risk children (Farfel et al., 1999; Megson, 2000). The pertussis toxin creates a chronic autoimmune monocytic infiltration of the gut mucosa lamina propia and may disconnect the G-alpha protein pathways, leaving some G-alphamodulated pathways unopposed. In turn, the non-specific branch of the immune system is turned on and, without retinoid switching, cannot be down regulated.

Wow, blinded with the cool science yet? No, me neither. Go back to line one where it says ‘one hypothesis’. All that follows from that point is mere opinion. There’s no science to back it up.

Another organism of suspect is the live measles virus…

Yeah except its really not. The issues with the Wakefield hypothesis are so many and so thoroughly debunked, it really isn;t worth my time or yours going through them again and again.

There is evidence that Thimerosal (which is 49% ethyl mercury) is indeed harmful. Since the 1930s, Thimerosal has been extensively used as an antibacterial agent in vaccines (Geier et al., 2007). Thimerosal has been implicated as a cause of autism. Not only is every major symptom of autism documented in cases of mercury poisoning but also biological
abnormalities in autism are very similar to the side effects of mercury poisoning itself (Bernard et al., 2001)

Oh dear. Reliance on more thoroughly debunked rubbish in the form of well, anything by the Geier’s and the ridiculous Bernard ‘paper’. I’m happy to go through why these are rubbish but I think I’d be preaching to the converted.

The rest of the paper is a rogues gallery of debunked and fringe science. Helen Ratajczak cites the Geier’s numerous times, DeSoto and Hitlan, Nataf and Rossignol to name but a few. This isn’t a paper so much as an advert for the sort of poor science that was examined in the Autism Omnibus proceedings and roundly rejected by the Special Masters. For goodness sake, she even cites David Ayoub of the Black Helicopter infamy.

When it comes to this paper – handle with extreme caution. Its toxic rubbish.

The Thinking Person’s Guide to Autism

11 Feb

If you aren’t following this blog yet, you really should consider it. The Thinking Person’s Guide to Autism is a group blog, and a big and diverse group it is. Some of my old favorite bloggers are there (e.g. Corina Lynn Becker, Kristina Chew, Clay, Emily Willingham, Liz Ditz…) and many people I haven’t read before the TPGTA.

Kev wrote about the blog last June when it was fairly new. They are definitely living up to the hope that Kev expressed then.

The blog allows submissions and has a book coming out as well.

The mission statement lays it all out:

The Thinking Person’s Guide to Autism (the website and the book) exists to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy. We also want to encourage respectful attitudes towards autistics and people with autism.

Why We Are Doing This
The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our loved ones with autism were first diagnosed.

Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized.

We also want to help new autism community members develop a positive yet realistic attitude, to appreciate the strengths while supporting the struggles of our loved ones with autism.

Our attitude is cautionary yet loving — we are interested in strong opinions, but not in negativity. Our families need their energies for evidence-based optimism!

How We See Ourselves
Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our authors are parents, professionals, and people with autism.

Our writers have defined opinions, and may not always agree with each other. That is both acceptable, and realistic, because autism means something different for every person with a diagnosis. We are not here to tell you what to do; we are here to give you tools and information so you can make informed decisions for yourself, your child, or your family.

Process and Submissions
We’d like TPGA to be a transparent, community-based effort. It helps that our community contains so many prominent and experienced voices.

Feel free to pitch us an essay topic. We also don’t mind if you submit an essay you’ve previously published. We want TPGA be comprehensive, not proprietary.

Please review our submission guidelines before sending in your essay.

You can also help us improve our Autism Resources page by leaving a comment about useful autism websites, books, movies, communities, and organizations.

Timelines
The submission deadline for our book was August 16. We’ll continue publishing essays online. The book will be published in Winter, 2010 through Deadwood City Publishing, and will be sold through Amazon.com.

Seriously, a blog well worth following. Professional, good content, broad spectrum of ideas. An excellent voice.

Autistic young adults missing out on much-needed services

9 Feb

Prof. Paul Shattuck, of Washington University in Saint Louis, is one of those people I greatly admire. He has repeatedly taken on studies of groups who are often overlooked in the majority of studies.

In a just release paper, Prof. Shattuck has studied what happens to young autistic adults as they transition out of high school. Sadly, about 40% stop receiving services post high school. Levels of services for speech therapy, mental health, medical diagnostics and case management all dropped notably after high school.

Low income and African American young adults were much more likely to not receive services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

Rather than summarize this work here, let me present the news release. Follow the link for a video press release with Prof. Shattuck.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

In his study, published in the current issue of the Archives of Pediatric and Adolescent Medicine, Shattuck looked at medical, mental health, speech therapy and case management services.

He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management and 9.1 percent for speech therapy.

This compares with service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy and 63.6 percent had a case manager.

Shattuck says that the years immediately following the age at which students typically exit from high school are pivotal for all youths.

“A positive transition creates a solid foundation for an adaptive adult life course and a negative transition can set the stage for a pathway fraught with developmental, health and social difficulties,” he says.

“Youths with ASDs are especially vulnerable during this period because of their challenges with communication and social interaction, greater reliance on others for aid and high rates of health and mental health problems.”

Shattuck notes that there is a dearth of nationally representative data on the prevalence and correlates of service use among young adults with ASDs.

“Basic descriptive data on the prevalence and patterns of service use are necessary for planning by policy makers and administrators,” Shattuck says. “Knowledge of service use can help identify underserved populations and plan targeted services.

“Estimates of service use and correlates will help clinicians, service providers and family members be more informed and better prepared as they try to help teens with ASDs navigate the transition from adolescence to young adulthood,” he says.

Data for this report came from the National Longitudinal Transition Study 2 (NLTS2), a 10-year study conducted from 2000-2010 by SRI International for the U.S. Department of Education that followed more than 11,000 youths enrolled in special education as they aged into adulthood.

The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.

The study’s co-authors are Mary Wagner, PhD, principal scientist in the Center for Education and Human Services at SRI International, and Sarah Narendorf, Paul Sterzing and Melissa Hensley of Washington University in St. Louis.

More on the Stark Threat to Our Community

9 Feb

Below is an action alert from The Arc and United Cerebral Palsy in California. There is another hearing to discuss budget cuts for services for the disabled in California. That meeting is tomorrow. Now is a good time to act. Call. If you can, attend the hearing.

If you don’t know who to call, the Arc and UCP make it easy to find out:

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

This is local to California, but there are likely similar decisions being made in your country, your state. Find out how to act.

More on the Stark Threat to Our Community
Action Alert from
The Arc and United Cerebral Palsy in California

Dear Friends,

The stark threat to the existence of the Lanterman Act system of supports and services for people with developmental disabilities is becoming clearer.

I hope you’re planning on coming to Sacramento tomorrow (Thursday) to tell the Legislature that Governor Brown’s proposed cut to our system is just too big. And I hope that you plan to call your local state senator and assembly member today with the same message, if you haven’t called them yet.

If those are your plans, here’s some information that might help you decide what to say to them. If not, I hope this information will convince you to at least make the calls today.

Our friends at Keeping the Lanterman Promise have posted some simple figures showing examples of what the governor’s proposed $750 million cut would have to mean to real services. They helped me wrap my mind around how crushing the cuts would have to be to reach that total. Here they are: http://keepingthelantermanpromise.net/inform/governor-browns-2011-budget-proposal-what-every-family-member-needs-to-know

And just in case anyone thinks we’re just being alarmist, look at the Brown administration’s own proposed bill spelling out how they want to make a lot of these cuts: http://www.dds.ca.gov/Budget/Docs/201112_620RCPOSStandards.pdf

The first time you read it, you can skip the soothing words in the paragraph that begins “(a).” After you read on and see what the bill would really do, you can reach your own conclusion about whether the Lanterman Act would still exist in anything other than name.

When you get down to “(b),” you’ll see that the Brown administration wants the Legislature to commit itself to “standards” that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families.” The “standards” could even “prohibit the purchase of specified services” — whether the consumer needs them or not.

These arbitrary “standards” would turn the Lanterman Act on its head, taking the decision-making away from the people with disabilities, their families, and the rest of their IPP/IFSP teams.

So, if you can, please come to Sacramento tomorrow to tell the Senate budget subcommittee what you think of these cuts. We need to fill not just the room but the Capitol building, like we did for the Assembly hearing last week. The hearing starts at 9:30 a.m. or later in Room 4203. The Assembly budget subcommittee, which held last week’s hearing, may be voting on the cuts later in the morning across the hall in Room 4202.

And whether or not you can come to Sacramento, please call your local state senator and assembly member today. Tell them your address, why you care, and what you think about these cuts. Call their Sacramento offices unless you already know someone in one of their local offices. And whoever you talk to, save their names so you know who to call next time. Please believe me, there will be a next time.

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

And finally, when you testify to the subcommittee or talk to your legislators’ staff, be sure to mention that you’re a registered voter — if you are. If you’re not, it’s time to register. Go to: http://www.sos.ca.gov/elections/elections_vr.htm

Thank you for your advocacy.

Greg

P.S. Your probably noticed a new banner at the top of this Action Alert. That’s because United Cerebral Palsy and The Arc have joined forces to strengthen our community’s voice in California public policy struggles. Just in time, don’t you think?

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
(916) 552-6619 x16

Prof. Paul Shattuck discussing his paper on lack of services for young autistic adults

9 Feb

I recently posted the press release for Prof. Shattuck’s latest paper. At the time, the video was only on his university’s webpage. Now that the video has been posted to YouTube, I can embed it and you can hear Prof. Shattuck telling you about the important points himself:

I apologize that there do not appear to be an option for subtitles.

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