Archive | February, 2011

Should a person who victimizes the disabled be allowed a short sentence?

18 Feb

A recent case in the Los Angeles area involved the sexual assaults of women in group homes. The case came to light when videos of the assaults were provided to the police. At least two of the assailants have been identified.

One of them has pled “no contest” to the charges. In return he is being offered a reduced sentence: 8 years (down from a maximum possible of 27). He would have to serve at least 85% of the time, and would have to register as a sex offender.

The deal is not sitting well with everyone:

The mother of one of the victims, a Rosemead woman, said that the deal came as a surprise and that she hoped the judge would reject it.

“Eight years is nothing for all the damage he has done to all these kids and their families,” the mother said.

A spokesperson for the LA district attorney’s office is quoted as:

“With these kinds of cases we never want to subject the victims to more trauma, and this was a difficult case because of the victims’ disabilities,” she said. “We felt that this [resolution] was appropriate.”

I am left with the question of whether the victims approached on this plea deal. Were the victims willing to testify, it should be their decision. The rationale put forth by the DA’s office that this is to prevent further trauma.

ARCA, the Association of Regional Center Agencies, has come forward calling the plea deal an injustice:

The Association of Regional Center Agencies, an advocacy group representing 21 California regional centers serving children and adults with developmental disabilities, says the plea bargain for Juan Fernando Flores is an injustice.

Irony and fear

17 Feb

I tried to stay away. Honestly. I’ve had enough of Andrew Wakefield for a long time. But a news story came out with two paragraphs that I couldn’t let go.

From DallasNews.com is an article “Some parents embrace discredited researcher whose studies link autism to vaccinations”. In it, Andrew Wakefield is quoted as saying:

“The tragedy is that it’s taking attention away from the real issues of how to help these poor children,” the 54-year-old surgeon said in
an interview Friday.

How much time has been wasted by parents and researchers in the MMR story?

That’s the irony. Now the fear.

Today, Wakefield, who hopes to open an Austin residential facility for autistic adults, said he regrets having to spend so much time
defending his 13-year-old study.

OK, I don’t really fear this as (a) I doubt it will come to pass and (b) I doubt my kid will end up in Austin.

So many thoughts go through my head thinking about Andrew Wakefield running programs for autistic adults. I seriously am at a loss for how to put those thoughts into words.

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

16 Feb

Most of what we hear (especially on this blog and other autism focused sources) about the Autism and Developmental Disabilities Monitoring Network (ADDM) is, well, autism related. Mostly we get the prevalence estimates for the CDC from this source. Sometimes I admit, I forget that “and Developmental Disabilities” is in there.

A recent paper shows that the ADDM is more broad than just autism. And, at the same time, gives some interesting autism information. The paper is: Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

Here is the abstract:

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network.

Kirby RS, Wingate MS, Van Naarden Braun K, Doernberg NS, Arneson CL, Benedict RE, Mulvihill B, Durkin MS, Fitzgerald RT, Maenner MJ, Patz JA, Yeargin-Allsopp M.

Department of Community and Family Health, College of Public Health, University of South Florida, 13201 Bruce B. Downs Blvd, MDC56, Tampa, FL 33612, United States.
Abstract

AIM: To estimate the prevalence of cerebral palsy (CP) and the frequency of co-occurring developmental disabilities (DDs), gross motor function (GMF), and walking ability using the largest surveillance DD database in the US.

METHODS: We conducted population-based surveillance of 8-year-old children in 2006 (N=142,338), in areas of Alabama, Georgia, Wisconsin, and Missouri. This multi-site collaboration involved retrospective record review at multiple sources. We reported CP subtype, co-occurring DDs, Gross Motor Function Classification System (GMFCS) level, and walking ability as well as CP period prevalence by race/ethnicity and sex.

RESULTS: CP prevalence was 3.3 (95% confidence interval [CI]: 3.1-3.7) per 1000 and varied by site, ranging from 2.9 (Wisconsin) to 3.8 (Georgia) per 1000, 8-year olds (p<0.02). Approximately 81% had spastic CP. Among children with CP, 8% had an autism spectrum disorder and 35% had epilepsy. Using the GMFCS, 38.1% functioned at the highest level (I), with 17.1% at the lowest level (V). Fifty-six percent were able to walk independently and 33% had limited or no walking ability.

INTERPRETATION: Surveillance data are enhanced when factors such as functioning and co-occurring conditions known to affect clinical service needs, quality of life, and health care are also considered.

I will admit that I did not know that the prevalence of ASD amongst those with cerebral palsey was so high, 8%. It is interesting to note that there is a geographic variation in the prevalence estimates of CP, from 2.9 to 3.8 per 1000. This is not quite as large as the spread in autism prevalence estimates by state, but it is pretty big.

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Special Education Programs, Private Placements, Under Assault

15 Feb

Education week has an article, Special Education Programs, Private Placements, Under Assault, describing some of the recent efforts by states to reduce special education costs.

From Michael Bloomberg suggesting pulling students out of private placements. He cites $100M spent for 4,000 students. I had to check on what that means–it works out to $25,000 per student.

Would this really save money? Probably not:

Sweet said there’s actually very little difference between the dollars spent on private and public schools for special education students because both can easily cost more than $25,000 annually compared to about $17,000, on average, for a general education student.

EdWeek reports that a Texas lawmaker proposed charging parents tuition for state-run schools for the Deaf or Blind (a proposal that is against federal law). And Utah suggested cutting cutting schools for the deaf and blind altogether. They just forgot about the fact that deaf and blind students would still be in Utah and need an education.

Times are tough, economically. Special education is expensive. Let’s hope that few lawmakers go for the false economy of cutting special ed. It really isn’t going to give a real return.

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.

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