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With this quick message, you can help push for better services in California

28 May

As noted in yesterday’s article, we here in California are working to gain back some of the lost ground in services for the developmentally disabled.

If you follow the link and spend literally 2 minutes or less, you can send the message below to your legislators. You can also take more time and modify the message to your own unique message.

Take the time and be heard.

Here’s the message sent for me, with my address and phone number redacted:

Assemblymember
Senator
Message text follows:

Matthew Carey
[address]

May 27, 2015

[recipient address was inserted here]

Dear [recipient name was inserted here],

Please speak out urgently in your party caucus for the Assembly version of
funding for developmental disability community services — but starting
the funding on July 1. The system is collapsing, and more programs will
close without a rescue in 2015.

The Assembly version is preferable to the Senate version because it is an
across-the-board increase. This is vital because the entire interlinked
service system is endangered when any part fails.

And please support the Senate language to develop a realistic rate system
based on services’ actual costs, and to help fund the community services
by using the future years’ savings from closing the obsolete developmental
centers.

Thank you for all your efforts to save the services people with
developmental disabilities need, and for your continuing support now – no
matter what Governor Brown says.

Sincerely,

Matthew Carey
[phone number]

Dear Policymaker — This constituient sent you the above message via The
Arc and United Cerebal Palsy of California, a coalition of people with
developmental disabilities and their families, friends, volunteer
advocates, and service providers.

The Arc and United Cerebral Palsy California Collaboration urges you to join the Lanterman Coalition’s efforts to save the community services system.

28 May

While I’ve been taking a break, a major legislative effort has been going on in California: an effort to bring funding back to the system here that supports people with developmental disabilities.

Below is a letter from The ARC of California and United Cerebral Palsy about the efforts to improve services.

If you don’t have the time to read the letter below, go straight to this website and enter your zip code to find your legislators. Follow the quick directions and you will send a message to them right away. Took 2 minutes for me:
Take Action.

The Last Few Miles of the Marathon to Save Our Services

Take Action!

We have made incredible progress together this year and while the end is in sight for this budget session we still have a lot of work ahead of us.

The Assembly proposes our 10% request but spreads it out over 2 years and delays it’s implementation.

The Senate puts forth bold proposals for sustaining the community system with developmental center assets and rate reform but selects some families and people with disabilities over others to receive desperately needed relief.

We need you to urge for the best of both proposals for a road map to bring the California system back to #KeepThePromise and preserve the Lanterman Act.

Remember a majority of Senators and Assembly members have already shown their support for the 10% across the board proposal in Senator Jim Beall’s letter.

The Latest Developments

If you’re already up to speed on the latest developments, skip the explanations below and take 20 seconds to email your legislators, click on the blue “Take Action” button at the upper right of this Action Alert, enter your ZIP code in the box at the top (right of “Action Alert”), click “Go,” and follow the prompts. The situation keeps changing and getting more urgent, so we’re asking you to email them now even if you’ve contacted them before.

For those who want an explanation, briefly here it is as of today (Wednesday May 27, 2015):

The Senate and Assembly budget subcommittees voted Thursday. Both of them clearly heard our community’s united, vocal request for a 10% across-the-board funding increase this year to save our developmental services system. Each of them voted to give us some — but not all — of what we asked for. We like part of the Assembly version and part of the Senate version.
The two full budget committees will continue meeting through probably Thursday May 28, 2015. They’ll pass their separate budgets then take floor votes, and at some point they’ll announce who will be on the conference committee.

The two versions will go to the Senate-Assembly budget conference committee for action, as early as this week. The final budget will depend on what that committee decides and, especially, on the legislative leaders’ negotiations with Governor Brown, who doesn’t want to increase our services’ funding at all.

The Assembly version would give our services a 10% across-the-board increase phased in over two years, starting January 1, 2016. We like that it’s across-the-board, but we want it to start July 1, because our entire system is in deep trouble and we believe some programs will close without more money this year.

The Senate version would give 10% to some to services and nothing to other services such as day programs, group homes, and regional center operations. But it would do two things that we like a lot: direct the administration to develop a realistic funding formula for future years that actually is based in the services’ costs; and give our community services the money from future years’ budget savings produced by closing the developmental centers.

So we’re asking all 120 legislators to tell their leaders and budget conference committee members to support the Assembly 10% across-the-board funding increase (but starting July 1) and the Senate language on future actions – no matter what Governor Brown says. That’s what the email I’m asking you to send them says. And of course, you can also add your own thoughts.


By Matt Carey

Lilady: goodbye, old friend.

26 May

As some of you may know from other writers online, lilady, frequent commenter here at Left Brain/Right Brain, has passed away. She’s known online now largely for her efforts combating misinformation about disability and also vaccines. But her best work was in advocating for her son, who had very significant disability. From her last comment here:

My son was born with a rare genetic disorder which caused multiple and profound physical, intellectual and medical impairment (pancytopenia, including leukopenia http://www.md-health.com/Leukopenia.html We depended on herd immunity to protect him…and parents who did not opt out of vaccines for their children

Lilady fought hard for appropriate placement for her son and her “other son”, back in the day when it was even harder than it is now to accomplish this.

I knew her through emails as well as comments and sincerely regret not meeting her in person when I had the chance. I thought I would have the chance again but it didn’t come to pass.

I will miss her greatly. She was more than an online and offline advocate. She was a friend. I wish her family well and thank them for loaning her to us.

Other tributes to lilady:

Todd W at Harpocrates Speaks:
In Memoriam: Lilady

Orac at Respectful Insolence:
In memoriam: lilady

Skeptical Raptor:
LILADY RN – A MEMORY OF A PASSIONATE VACCINE SUPPORTER

edit to add: more tributes
Rene F. Najera:
The people you thought were immortal

Just the Vax
In Remembrance of Lilady

Autism Mum:
Goodbye, Lilady RN

by Matt Carey

I like living in a free country

25 May

In the world of vaccine antagonistic groups and the fake-medical approach to “treating” autism (how can you “treat” anything with fake medicine like MMS?) we hear a lot about the lack of freedom and how we are in some sort of a police state. Anyone who openly counters the misinformation is likely to be branded a “Nazi” or similar epithet (remember Andrew Wakefield’s video where he claimed the CDC were running a new Tuskegee experiment with vaccines, and that the CDC were worse that Hitler, Pol Pot and Stalin? And remember how many groups and blogs actually promoted this embarrassment?)

Much as it is aggravating to watch my own community (autism parents) spread misinformation and work against public health (remember J.B. Handley bragging that his team are “… in the early to middle stages of bringing the U.S. vaccine program to its knees”?). Much more, it’s very, very painful to watch groups like AutismOne promote fake medicine (for example chelation, chemical castration, bleach enemas) for use in disabled childen.

I’d be very happy if these practices ended. But I do not, have not and will not advocate that these groups be “silenced”. I and others counter the misinformation. And that’s the way of a free society.

I was reminded of this in a recent business trip. To Beijing, China. I did not blog during that time and not just because I was very busy. WordPress (the platform on which LeftBrainRightBrain.co.uk is hosted) is blocked in China. As are Twitter, Facebook, Yahoo, Gmail, Google and many other sites.

Groups with misinformation complain that they aren’t given “balance” in the press in the U.S.. They complain over and over (and over) again in ways which are just not available in a non free society.

I was attending a science/engineering conference. Conferences are very different from parent conventions like AutismOne and the newer Generation Rescue meetings. While they bill themselves as conferences and they have “scientific” talks, they lack one very important thing: criticism. No one stands up and speaks out against clearly wrong ideas. Mark Geier, for example, can stand up and give a ridiculous talk about mercury and testosterone (which is in reality just an advertisement for his “Lupron Protocol”) and no one will stand up and say, “Mark, could you explain how your logic, in which you discuss mercury/testosterone complexes produced in beakers of hot benzine, has anything to do with the brains of autistic children?” (which is how scientists say, “your talk was a bunch of hokum”).

No. No one speaks out. Not any of the self-proclaimed leaders of this movement. Not Andrew Wakefield. Not Mark Blaxill. Not Brian Hooker. Not anyone at the Age of Autism Blog, the so called “thinking mom’s revolution”, AtuismOne. The list goes on and on of the fake leaders. They lack courage. Plain and simple. They will never stand up to people who claim that vaccines cause autism, no matter how wrong or harmful their proposed “therapies” are. They will circle the wagons and accuse their critics of being against treating autistics.

You want to talk courage? Of all the sites in Beijing that people wanted to see, Tiananmen Square was number one. And for only one reason: to stand where perhaps the bravest act I’ve ever seen happened. I’m speaking of the man who stopped a row of tanks in 1989.

Tienanmen Square is the fourth largest public square in the world. But public is an interesting word. The square is closed to the public from 10pm to 5am. And when it is open all entry points require a security check. And there are security cameras. Everywhere cameras. To get to the Palace (the Forbidden City) one must walk through a few large gates. No big deal there. But at the first gate, the one leaving the square (the one with the giant picture of Mao on it), I counted no fewer than 20 security people watching people walk through.

After you pass through the first two gates, at the entrance to the Forbidden City, just across from the Palace Museum ticket booths, there is a small garrison.

DSCN1852

Think that is a ceremonial guard? Well, if you come back later, the guys are training in camo gear. And how about the armored personnel carrier?

DSCN1900

Those who throw out terms like “police state”, “Nazi” and “censorship” belittle those who live under a very real, very strong, controlling government.

And don’t mistake the fact that my ability to write here is very dependent on living in a free society. As I noted above, WordPress is blocked in China. And I have little doubt that many of those who ask for “health freedom” would not support a free criticism of their actions were they in power.

Coincidentally, today is Memorial Day in the U.S.. A day when we remember and thank those who served and especially those who gave all in the protection of our freedom. I am more aware than ever of what they have given to me and my family. I don’t think that those with failed ideas about autism, vaccines and more who cry about a lack of “freedom” honor the people who fought for that very freedom.

There’s a reason why those ideas don’t gain traction. It’s not because they aren’t heard. They are heard. The ideas fail because they aren’t right.


By Matt Carey

You know, “Dr. Bob”, minority health disparities are HUGE in the autism community.

1 May

Robert “Dr. Bob” Sears is advertising himself again on the TacaNow blog. He’s telling us all about how he was an early adopter on biomed approaches to autism and how it’s all about listening to the parents. He tells us about how it all started with a parent asking for a prescription for an antifungal. No discussion of actually testing the kid for a fungal infection, just the standard story: parent asks, DAN doctor writes prescription story, DAN doctor takes credit for any gains, and no mention ever of any adverse reactions.

So, clearly, a case of same old/same old. So why write about it here? Because once again “Dr. Bob” shows how out of touch he is with the needs of the autism community. Oh, sure, he knows what parents at conventions like AutismOne want to hear (snarky remarks about vaccines and, you, the parents are always right). But what is one of the biggest problems in the autism communities right now? And has been for, well, ever? Disparities in diagnosis and access to treatment.

Here’s an example: racial and ethinic minorities are vastly under diagnosed and under served. In my state (same as “Dr. Bob’s”) if you are Hispanic, you are about 70% less likely to get special education services under the autism label as if you are white. I’ve plotted it out for my district that that ratio has remained basically constant for the past 14 years (as far back as the data are available).

I’m sure “Dr. Bob” can rattle off the latest CDC autism prevalence figures, or at least some of them. But if one actually reads the report, what does one find?

Non-Hispanic white children were approximately 30% more likely to be identified
with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.

Given that, take a look at what Dr. Bob wrote on the TacaNow blog:

Yet, there is a shadow over all this success: April was supposed to be Autism Awareness Month. Did anyone even know? I checked the CDC website, and they proclaim April to be National Minority Health Month, with the catch phrase “Learn about CDC and HHS efforts towards eliminating health disparities,” as if THAT is the most important health crisis facing America today.

If “Dr. Bob” really believes that biomedical approaches are so helpful, why discount the need for outreach to minorities? Really, we have a HUGE problem with under diagnosis of autism in California among minorities. But you seem unaware of this.

One does wonder how many minorities, especially those with low incomes are served by the Sears clinic. I grew up in “Dr. Bob’s” home, Orange County, going to school along side farmworker kids. There’s a huge population of underserved minority kids there.

As an aside, here’s how one does an internet search, “Dr. Bob”. Top hit is Announcement: Autism Awareness Month and World Autism Day — April 2015. But that’s an MMWR (Morbidity and Mortality Weekly Report) from the CDC, and as a doctor you must follow those, right? Especially since the MMWR’s include, say, information about the recent California measles outbreak which you downplayed.

Here, while we are at it, let’s do another google search. The word “minority” on the “Dr. Bob’s” family website (askdrsears.com).

Gee, 5 hits. One on how only a minority of families skip the MMR vaccine. Only one on racial/ethinic minorities, an article on lice.

No hits for “Hispanic” on the Sears family website.

“Dr. Bob”, if you want to pretend to speak for the autism communities (you don’t), at least show us the respect of acknowledging one of the big issues in our community: under served and under diagnosed populations.

Of course, to acknowledge these points you have to also acknowledge that autism isn’t always diagnosed, and that we need awareness to get diagnoses and services to these communities.

Which is to say, you have acknowledge that autism “rates” are under counts. And that doesn’t fit with your ideas on vaccines causing autism, does it? Or did I misread you when you wrote that you were waiting to “proclaim from the rooftops” that the MMR causes autism? (odd how you edited the original version of that article to remove that comment, isn’t it.)

Seriously, “Dr. Bob”. Get out of the corner of the autism community you profit from and take a hard look at what we really need.


By Matt Carey

comment on: When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

1 May

Having just discussed a study on what happens after autism “recovery” it may be worth taking a look at another study that just came out this week. This study isn’t yet published but was presented at a conference:

When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

The abstract is below, but in this study group there were significant gains in a subgroup and a loss of ASD diagnosis. The subgroup had much less intellectual disability on follow up.

And they also had a number of other disabilities and support needs. Most still had some diagnosis, if not ASD. Most were still getting some level of extra support in school.

BACKGROUND: It has been documented that some children with early diagnosis of Autism Spectrum Disorder (ASD) do not meet criteria for the diagnosis at a later age. It is unclear, however, if deficits remain after ASD symptomatology resolves.
OBJECTIVE: To characterize residual learning, cognitive, emotional/behavioral diagnoses and educational needs of a group of children with early ASD diagnosis that resolved.
DESIGN/METHODS: Review of 38 children diagnosed with ASD at a University-affiliated inner-city early intervention program 2003-2013 who had follow up evaluation indicating resolution of the original ASD diagnosis. The group represents 7% of the 569 children diagnosed with ASD by the program during this period. Original and follow up diagnoses were made by an experienced multidisciplinary team based on DSM-IV criteria, Childhood Autism Rating Scale(CARS) and/or the Autism Diagnostic Observation Schedule(ADOS). All children had re-evaluation an average of 4 years later. Initial cognitive level was based on the Bayley, and follow up on WPPSI, WISC, or Stanford Binet. Data collected included: demographics, cognitive level, CARS, diagnoses and services originally and at follow up.
RESULTS: Mean age at initial diagnosis 2.6±0.9y and at follow up 6.4±2.8y. 80% male; 44% Hispanic, 36% Caucasian, 10% African American; 46% had Medicaid. Mean initial CARS 32±3 and at follow up 25±4. The initial ADOS (21/38) categorized 29% as autism and 67% ASD and was negative at follow up when available (23/38). On initial cognitive testing (29/38): 33% with intellectual disability, 23% borderline, 44% average. At follow up (33/38): 6% borderline, the rest average. At follow up, 68% had language/learning disability, 49% externalizing problems (Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Disruptive Behavior Disorder), 24% internalizing problems (mood, anxiety, OCD, selective mutism), 5% significant mental health diagnosis (psychosis.nos), and 8% warranted no diagnoses. 26% were in mainstream academic settings without support and 13% with support, 29% in integrated settings, and 21% in self-contained classes.
CONCLUSIONS: When an early ASD diagnosis resolves, at least in the early years, there are often learning and emotional/behavioral diagnoses that remain. Understanding the full range of possible outcomes is important for parents, clinicians, and the educational system.


By Matt Carey

comment on: “Recovery” from the diagnosis of autism – and then?

1 May

Before commenting on the paper, there are a few general comments on the idea of recovery that need to be addressed. The fact that some people are diagnosed as autistic and later are found not to be autistic is not a new idea. Here’s a study from 1975 where 75% (of an admittedly very specialized) subgroup were diagnosed as autistic and later found to have “…social responses appropriate to their level of function; those who did not generally were over 3 years of age at the time of their first examination or had initial DQs of 35 or less”. I.e. they were no longer considered autistic. The idea that losing a diagnosis would be labelled “recovery” does seem to be a new idea. “Recovery” implies that one was originally not autistic, became autistic and was later “recovered” to the original state. Whatever one’s stance on whether that accurately describes autistic regression, it doesn’t describe at least most of autism.

Given this, I find the use of the term “recovery” by academics to be problematic at best. My personal feeling is that the authors of the study below shouldn’t have used the term. But it’s worth noting that this, like many topics in autism, is a minefield (no safe place to stand). When a team discussed kids as having an “optimal outcome” from autism, they too came under a great deal of criticism.

All this said, a new study came out discussing kids who were diagnosed as autistic (age 4 or younger) and two years later did not meet the criteria for a diagnosis. This group was followed up later (about age 10) and were found to have significant challenges. In fact, some had declined in Vineland test scores.

And, a “substantial minority” were once again autistic, according to the parents.

So, “recovery” may not be all that it’s cracked up to be. But is there more valuable lessons that we can learn from this? Well the researchers point out that these kids would have and still could benefit from significant support. Clearly, an autism diagnosis is the be-all and end-all of what should determine a child or adult’s need for support.

Here is the abstract:

Background: The aim of this study was to follow up the 17 children, from a total group of 208 children with autism spectrum disorder (ASD), who “recovered from autism”. They had been clinically diagnosed with ASD at or under the age of 4 years. For 2 years thereafter they received intervention based on applied behavior analysis. These 17 children were all of average or borderline intellectual functioning. On the 2-year follow-up assessment, they no longer met criteria for ASD.
Methods: At about 10 years of age they were targeted for a new follow-up. Parents were given a semistructured interview regarding the child’s daily functioning, school situation, and need of support, and were interviewed using the Vineland Adaptive Behavior Scales (VABS) and the Autism – Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview.

Results: The vast majority of the children had moderate-to-severe problems with attention/activity regulation, speech and language, behavior, and/or social interaction. A majority of the children had declined in their VABS scores. Most of the 14 children whose parents were A-TAC-interviewed had problems within many behavioral A-TAC domains, and four (29%) had symptom levels corresponding to a clinical diagnosis of ASD, AD/HD, or both. Another seven children (50%) had pronounced subthreshold indicators of ASD, AD/HD, or both.

Conclusion: Children diagnosed at 2–4 years of age as suffering from ASD and who, after appropriate intervention for 2 years, no longer met diagnostic criteria for the disorder, clearly needed to be followed up longer. About 3–4 years later, they still had major problems diagnosable under the umbrella term of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations). They continued to be in need of support, educationally, from a neurodevelopmental and a medical point of view. According to parent interview data, a substantial minority of these children again met diagnostic criteria for ASD.

Keywords: autism spectrum disorder, autistic traits, AD/HD, A-TAC, Vineland, cure

Here is a video presentation that was published along with the paper


By Matt Carey

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