Penn Jillette doesn’t know his ADA from a hole in the ground

23 Jun

Apologies for the title. But watching a Penn and Teller Bull**** episode a few times over has inundated me with profanity.

Penn and Teller are a magician team. They also have a show on American cable TV, Bull*****. They have an upcoming episode on the anti-vaccine movement and because of this Penn has recently put out a short video about Andrew Wakefield. When I blogged that piece, one commenter noted that Penn and Teller have taken on the Americans with Disabilities Act (ADA), claiming it is “bull**** on wheels”. OK, the commenter didn’t quote the “Bull**** on wheels part, but that’s how Penn describes it.

I found that there was an episode of Bull***** called “Handicap Parking”, in which Penn and Teller take on the ADA. The episode is below. Warning, Penn is fluent in profanity.

This is the first episode of “Bull****” I have watched. I will say parts of it are interesting. Watch what is going on in the background. There is a guy who is very adept at getting around in his wheelchair. Certainly more of an athlete than either Penn or Teller (or I, for that matter). Even while is he there to make the point that one can be in a wheelchair and still be quite capable, he also would not be able to get out of his car if someone were to park right next to him–and that is at the very beginning of the episode. No one is free from being poked at. Take the gentleman who most closely tells the story that Penn is promoting. At one point they have a voiceover from that gentleman talking about how with the ADA in place, people are not compassionate and accommodating. In contrast to that message, the video shows strangers pausing to open doors and be polite to him.

But those events are minor compared to some of what is said and done on that show:

Where to begin? I realize that they only had 30 minutes, but the ADA is not just about physical disabilities and certainly not just about parking. Penn’s approach is not so much ableist as libertarian: the government shouldn’t be mandating “compassion”. There’s ableism in there, don’t get me wrong. When discussing accessible buses he comments, “if you were disabled and lived in New York City what more could you ask for…other than not to be handicapped?”

Now here’s the bit of chicanery that got me to blog this. This comes about 4 minutes into the part 2 video.

“Who does the ADA classify as disabled? It starts with people who use a wheelchair, cane, crutches or a walker…” He goes down a list until he gets to “Now it gets a little vague. And here’s where it gets f***ed up. You see, in order to get to that 50 million number, according to the government, also includes people who have difficulty keeping track of money, doing light housework, and using the phone. No s***.”

They then cut to Teller in his car looking quizzically at his cell phone. When he can’t figure it out, he puts up a handicap placard and gets out. Yes, if you can’t use a phone you get to park in a blue space.

They are using the absurd to make a point with Teller and the phone. Sure. But what about Penn’s voice over leading up to that? Is he quoting the ADA? No.

The definition of a disability according to the ADA is:

(1) Disability

The term “disability” means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment (as described in paragraph (3)).

(2) Major Life Activities

(A) In general

For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.

(B) Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.

(3) Regarded as having such an impairment

For purposes of paragraph (1)(C):

(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.

(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.

No language “if you can’t use a phone, you get a handicap parking space.”

Where did that come from? They have a visual in place to support Penn’s voice over. That document is here. Did you notice the link? That’s a document from the Census Bureau, not a quote of the ADA at all. It’s a bit of sleight of hand, if I may call it that. He tells us the figures and definition are from the ADA website, but is actually using a document and statistics from another agency (the Census Bureau) created for a different purpose.

Maybe ada.gov has the 50 million disabled statistic Penn refers to. If so, I can’t find it. It doesn’t change things. Penn uses one definition of disability–a broad definition–to make the claim that the ADA is too broad.

This allows Penn to say, “The ADA equates the difficulties of a 21 year old blind girl with severe autism to some a-hole who can’t figure out how to use redial”.

No. The ADA does not equate the two. But that would get in the way of Penn’s narrative–that there are a lot of people without “real” difficulties who are misusing the ADA. One of his guests asserts that “Without this law, the *truly* handicapped would be socially, morally and financially better off than they are today”. Rather than back that statement up with some data Penn goes to comedy, pushing a guy in an iron lung around Hollywood.

As the episode goes on, they bring up a man who does appear to be misusing the ADA to demand money from businesses he claims are not accessible. Yep, there are bad people of all sorts. I won’t disagree there.

Nothing, including the ADA, should be above criticism. I have no problem with Penn and Teller taking a critical look. The ADA is far from perfect. But it’s important enough to get their facts straight. Also, I would disagree with the claim that society would be as accommodating if the ADA weren’t in existence.

His take, as I mentioned above, is rather libertarian. He quotes part of the purpose of the ADA, “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities”. He then follows with, “How about the government sticks to courts, police, defense and corruption and leaves compassion to the people who f***ing have it!”

Nice straw man there. The ADA isn’t about compassion. The word “compassion” isn’t in the text anywhere. One can be bereft of compassion and not discriminate and one can discriminate while being full of compassion. It isn’t about making people physically equal as Penn asserts.

I’ll leave you with one last segment. One of the guests comments that accessibility is similar to racial discrimination. Penn counters, “Equating handicap access with racial discrimination is bullshit. Black people weren’t allowed in the front of the bus due to Jim Crow laws of segregation. Handicap people can’t get on the bus because of Isaac Newton’s laws of physics”.

What a strange comment. Here’s a hint for Penn: lift mechanisms on buses use Isaac Newton’s laws of physics.

The Court–part of what the government is supposed to do in his libertarian view–can require buses use Newton’s laws to allow access. Frankly, buses aren’t included in Penn’s litany of what the government should do anyway, but don’t let that get in the way of a good narrative.

Ari Ne’eman appointed to National Council on Disability

22 Jun

Ari Ne’eman has been appointed to the National Council on Disability. This will make him the first autistic member of the Council. Mr. Ne’eman is the Founding President of the Autistic Self Advocacy Network (ASAN).

I have been checking the Senate Calendar periodically to monitor the status of his nomination, which was on hold. When I found his name was no longer on the calendar, I did a quick google search and round Senate Confirms Controversial Autism Self-Advocate To National Disability Council. Disability Scoop notes that Mr. Ne’eman’s appointment was unanimously approved by the Senate.

Earlier this year, Mr. Ne’eman was appointed to the Interagency Autism Coordinating Committee.

In support of David Gorski

22 Jun

To whomever it may concern,

You have probably recently had to deal with a handful of vitriolic comments regarding the online activities of David Gorski. You will probably have been pointed to an online essay by a young man called Jake Crosby in which he makes a series of claims regarding David Gorski and his ‘ties’ to vaccines/vaccine manufacturers and other entities.

I urge you to read these comments and this essay very, very carefully. Once you do I am in no doubt that you will see what the rest of us clearly can – that this work is the work of a highly impassioned young man who believes that he is right. He believes that vaccines cause autism to state it clearly and he believes that by having some kind of – any kind of – tie to a pharma organisation means that David Gorski is ‘tainted’. But what really annoys master Crosby is the fact that David Gorski regularly blogs in support of the science that clearly shows vaccines do not cause autism and blogs against the pseudo science that attempts – and continually fails- to draw any kind of a link between vaccines and autism.

So this, in master Crosby’s eyes, is David Gorski’s crime – supporting the science and decrying the bad science.

In order to cast some kind of suspicion over David Gorski’s support of science, Crosby has ‘discovered’ that Gorski is conducting research into ways to reuse some types of drugs – drugs developed by Sanofi-Aventis who of course also manufacture some vaccines. And that, despite another few hundred words from master Crosby is that. That is the sum total of his ‘investigation’ and the sum total of David Gorski’s crime.

The only real eye-opener on this issue is that Jake Crosby managed to wring out as many words as he did on this total non-issue.

I have known David Gorski online for a number of years. We often quote one another and link to one anothers posts. We regularly email each other and I was disappointed to be unable to meet him for drinks on a visit to the UK he took a few years ago. In my experience of the man he is rigorous, almost fanatical with regards to accuracy and brings these traits to many areas of blogging and online writing including the investigation of bad science.

Why does it matter to me? It matters because I have an autistic child and an autistic step child. When my autistic child was first diagnosed I firmly believed that her autism was caused by vaccines. It was only through being exposed to writings of David Gorski and his peers on the science of autism and the bad science of the autism/vaccine connection that I eventually saw for myself what was obvious: vaccines don’t cause autism and never did.

Scientists such as David Gorski often blog and write online anonymously. They do this because to be exposed to the sort of people Jake Crosby colludes with often means being exposed to harassment and threats. David Gorski is now finding that out for himself. I hope that you as his peers, colleagues and employers will see how vital it is that David Gorski continues blogging and that you will support him in both his work and his blogging.

Penn Point: Anti Vaccination is Bull Andrew Wakefield and Jenny McCarthy

21 Jun

Penn of Penn and Teller has an internet TV show called Penn Point. In the recent installment Penn discusses Andrew Wakefield and Jenny McCarthy. I hesitated posting this as Penn is proficient, fluent even in, in profanity. So be warned. I also hesitate because I don’t want to get into the “My celebrity is better than your celebrity” arguments. I’m not putting this out because Penn is an expert. No, he’s no expert. He’s a celebrity. A celebrity who wants to champion the little guy being trampled by “the Man”. In this case, he says, “The man is right”, Mr. Wakefield and Ms. McCarthy are wrong.

Penn Point: Anti Vaccination is Bull*** Andrew Wakefield and Jenny McCarthy

Penn and Teller have been working for some time on an episode of their Cable TV program “Bullshit” which takes on the anti-vaccine movement. They fought with Showtime to do anti-aniti-vaccination. Yes, they had to fight to do this show. The anti-vaccine groups have had the sympathy of the media for some time. But, times are changing. Now, even a show like Bullshit, which takes on “The Man” (the establishment), is willing to take a critical look at people like Andrew Wakefield, Jenny McCarthy and Oprah.

The short bit in Penn Point notes that at the time they did the show Mr. Wakefield was not yet struck off so they were more careful with him. Keep that in mind when the episode airs. They went easy on him. Also of note, Penn references the Bad Astronomy blog. Bad Astronomy mentions this Penn Point in Penn’s – and the syringe’s – point.

The Penn Point show is here:

http://revision3.com/player-v5834

I could write the responses to that episode now, complete with complaints about how Mr. Wakefield’s study isn’t completely discredited ( [a] “it isn’t a study, it is a case series, [b] it has been replicated in five countries, [c] how dare he claim that Jenny McCarthy isn’t helping people–look at her books and talks….etc.).

But, again, I’ll stress: I’m blogging this not to say Penn is correct or to use his words as some sort of expert in the discussion. No. To me this is about the fact that the media viewpoint has shifted away from sympathy and false balance for the vaccines-caused-an-autism-epidemic groups. Consider the recent episode of Frontline and the recent episode of Dateline which both covered the vaccine-autism discussion and (especially in the case of Dateline) Mr. Wakefield. Both were very critical of Mr. Wakefield, and that was before Mr. Wakefield was struck off the General Medical Council register.

The groups focusing on vaccine causation have relied upon a sympathetic media for some time. Without it, they would have had a much harder time putting out a message which their media representative claims “…has severely eroded confidence in the cornerstone of health care: THE CHILDHOOD VACCINE PROGRAM.”

That said, I was actually looking forward to winding down discussion of Mr. Wakefield. He’s moved from front-page news in reputable media sources to a late night guest on AM radio shows which concentrate on UFO’s.

But, as long as I am on the subject of Mr. Wakefield (regular guy), let me make a few recent observations:

Mr. Wakefield recently gave a talk in London. Or, as it was billed, people were able to have an “audience” with Andrew Wakefield. The lecture presented his current stump speech and was followed by a book signing. About 40 people attended. The live feed of the event was to be carried “pay per view”, with a fee of about US$70. The organizers abandoned that idea and put it out free. Even with that they were only able to get about 150 online viewers, which included many skeptics (including members of the Bad Science forum).

A good example of the sort of information Mr. Wakefield’s speeches include is a shifting of blame for the drop in immunizations in the UK to the government. It was there decision, he asserts, to remove the single vaccines which led to the outbreaks. As noted in the Telegraph recently, the UK has never had a single mumps vaccine:

‘Rubbish,’ says Salisbury. ‘There was no mumps vaccination licensed for routine use – certainly none available in the UK. We had never used a single mumps vaccination.

We could go on and on. Mr. Wakefield, who has supposedly thoroughly researched vaccines and their safety, still thinks the Amish have prohibition on vaccination. Just for example. Rather than go through all those points, I’ll leave you with this. The “audience” had to be moved to a different location than originally planned. The organizers claimed there were “threats” that caused the move. The Bad Science community, however, noted:

The venue is the offices of a well regarded independent television production company. So Becky Fisseux wrote some of the directors: “I’m writing to express my extreme disappointment that such a well thought of production company as Objective is playing host to this event tomorrow evening.” … continuing with an explanation of the anti-vax nature, and rise of measles ending with …”Should you allow this event to go ahead, I fear your company’s reputation will be seriously tarnished, and respectfully ask you to reconsider your decision.”

She got a reply from a director who was confused… and that they will look into it. She says “Next morning, at about 9am I received emails from two directors saying that their rehearsal studio had been booked via a third party who was known to them, but the person who took the booking was not informed of the nature of the event, nor of the links to Wakefield and the anti-vax lobby. They withdrew the offer of the room.”

It’s not longer about a scientific debate when it comes to vaccines and autism and Mr. Wakefield. It’s about image management. If Penn is any indication, they need a lot of “management” for Mr. Wakefield’s image.

addendum: I forgot to credit the Countering Age of Autism blog for bringing the Penn Point episode to my attention.

Interagency Autism Coordinating Committee (IACC) wants your input

18 Jun

The Interagency Autism Coordinating Committee creates the Strategic Plan for the US Government’s research efforts in autism. They update this every year. They are seeking input from the public.

What do you think should autism research should focus on in the future? Now’s your chance to let your voice be heard. Public comments can be entered here: http://iacc.hhs.gov/public-comment/2010/index.shtml.

The website will take you through the entire Strategic Plan, section by section. You don’t have to respond to everything. If you just have a few short messages for the IACC, go ahead and let them know.

IACC Issues New RFI to Solicit Public Input to Inform the 2011 Update of the Strategic Plan

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 20, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

To access the RFI, please go to: http://iacc.hhs.gov/public-comment/2010/index.shtml.

Audio of the Cedillo appeal part 2

16 Jun

We’ve recently discussed the first part of the audio from the Cedillo appeal (the part where Miss Cedillo’s attorney was speaking) in Audio of the Cedillo appeal part 1. Here I share notes on the second half of the audio: where the government’s attorney is speaking.

I should have done this before, but a little nomenclature:
The U.S. Government is represented by the Secretary of Health and Human Services. She doesn’t actually take part, but is represented by attorneys from the Department of Justice (DoJ). The government is referred to as the “Respondent” in these proceedings.

The Cedillo family is represented by their attorney, Ms. Chin-Caplan. Michelle Cedillo is the “petitioner”. Her case is one of the “test cases” heard in the portion of the hearings to determine if MMR causes autism. Her case served two purposes. First, to argue that in her specific situation vaccines resulted in some or all of her conditions. This is referred to as “specific causation”. Second, her case presented evidence on the general question of whether the MMR (alone or with Thimerosal) could cause autism. This is referred to as “general causation”.

Ms. Chin-Caplan is working as both the attorney for Ms. Cedillo and as a member of the “Petitioner’s Steering Committee” or PSC, which is the association of attorneys working with the 5,000 plus families who filed petitions claiming autism as a vaccine injury. Those 5000 plus cases are grouped in the Omnibus Autism Proceeding, or for short: OAP, or “Omnibus”.

Again, my observations are added in italics.

The DoJ attorney didn’t even finish her introduction before one of the judges jumped in to ask about the fact that in a regular civil court, the underlying documents would have to be produced or Prof. Bustin’s testimony would be excluded. The fact remains that in the vaccine court, that rule (rule 26) does not apply. As noted in the first half of the audio, the PSC attorneys could have asked for those rules to apply but they did not do so.

The judge goes on to say that it was the government’s responsibility under the federal rules to obtain the documents to support the testimony.

I will add here that I am somewhat unclear if these are the Federal rules for the vaccine court, or the Federal rules (e.g. Rule 26) for the civil court. It sounds to me like they are the rules for the civil court.

The DoJ attorney noted that they tried to get everything from the UK litigation. All the expert reports and information. However, the solicitors they were working with in the UK suggested that their petition was too broad and would be denied. So, on advice of those solicitors, the DoJ narrowed the request down to only the three expert reports.

It sounds to me as though the DoJ attorneys were possibly unaware that the evidence–in this case the actual lab notebooks from the Unigenetics laboratory–were not going to be produced in full with the expert report. Even if so, I don’t see this really as an excuse.

However, some of the pages which Prof. Bustin used in his testimony were reproduced. These include pages that showed that Unigenetics made corrections after the dates on the notebooks.

Another observation: the laboratory notebooks are not all of the information from which Stephen Bustin made his report and it is not all the information which he used to form his testimony in the Cedillo case. Not all of his testimony would be excluded without the full laboratory books, in my opinion. Prof. Bustin spent considerable time investigating Unigenetics

The DoJ attorney noted that they went to the UK to obtain the information only after they learned that the Unigenetics laboratory results constituted a key part of the petitioner’s case–four months before the case was heard. They had to “hussle” to get the information unsealed. The judge asked if the DoJ had a responsibility to inform the petitioners of their intent to obtain this information. The DoJ stated that she did not believe that was the case.

The full witness list for the government was not finalized and made public until shortly before the proceeding. One list of potential witnesses was made available to the petitioners in March 2007–four months before the hearing–but that list is not public. The final list for both sides was made public on June 12, 2007. To me, this may indicate that the DoJ attorneys were *not* required to give more lead time on their witnesses or strategy.

The petitioner’s attorneys were given a year after the hearing to request the lab notebooks from the UK. DoJ attorneys offered to join in the request and the Special Masters wrote a letter of support for the request. The petitioners never filed an application in an attempt to obtain the documentation.

The DoJ attorney stressed again that the Special Master stated that he didn’t need the testimony from Prof. Bustin or some of the other information to make his decision.

I keep thinking that in many ways the Special Master should have been present in this appeal. Both Ms. Chin-Caplan and the DoJ attorney spent a considerable amount of time discussing what the Special Master thought and did. I realize that is not how appeals work, but as the appeals judges keep saying, this is not supposed to be an adversarial procedure. The goal is to bring in all the information and weigh it

One of the judges made a short speech about how scientific opinion progresses and that new data, new techniques could emerge which might support the petitioners. The DoJ attorney noted that the Courts can not wait indefinitely for the science. The petitioners deserve to have cases settled.

First, this is precisely why the evidence standards in the vaccine court are low. The idea is to give the petitioners the chance to win cases before the evidence is in. This is what happened in the DTP cases in the early phases of the vaccine court. Many cases were decided–for the petitioners, mind you–which later evidence showed were not supported. Second, this is not the purview of the appellate court. They shouldn’t be deciding on the merits of the evidence but on procedural questions. Third, as time progresses, the MMR causation theory has only become more implausible. The Hornig study, for example, came out after the Cedillo trial and was a clear rebuke of the early papers by Wakefield’s team

At one point, the DoJ attorney suggested that the underlying data would have buttressed Prof. Bustin’s testimony and she wishes she did have it. One judge, quite rightly in my opinion, corrected her with “how do we know that?” The Judge asserts that Prof. Bustin relied upon the documents to determine that Unigenetics was “a bad laboratory”

I would disagree at this point. The lab notebooks were *part* of the data Prof. Bustin used to form his opinion. But, they were not *all*

Ms. Chin-Caplan claims that she would have joined the DoJ in their attempt to obtain the documents had she known they were attempting that. One judge pointed out that she was given a year after the hearing to obtain the documents and failed to even make the attempt.

I don’t see how Ms. Chin-Caplan aiding the DoJ in their attempt would have changed what she is claiming it would have changed. She demonstrated that she was unable to obtain the documents on her own, so her expertise would not have been helpful. What this would have done is signaled to her 4 months in advance that the DoJ planned to challenge the quality of the Unigenetics laboratory. Frankly, that should have come as no surprise. There was much criticism of the Unigentics laboratory and the resutls in the public arena. The petitioners were aware of the UK litigation as they had also attempted to get data from that proceeding–and some of the petitioner’s experts had worked on the UK litigation.

Ms. Chin-Caplan argues that the one year she was given to obtain the documents was not enough because it was “an impossible task”. One of the judges points out that she has no way of knowing it was impossible since she didn’t try.

Ms Chin-Caplan stated that she didn’t want to waste the taxpayer’s money on an attempt to get the documentation since she wasn’t sure it could be obtained. She argues that it would be difficult because it involved possibly two foreign jurisdictions.

This is a very weak argument. First, the question of whether she was sure or not really doesn’t apply. The only thing that would apply is if she was sure are request would be denied. Second, the idea that she was saving the taxpayer’s money doesn’t really work. The costs of the appeals far outweigh the savings involved. Third, the DoJ had already shown that it could obtain documents from the UK litigation in a matter of four months. The DoJ offered to assist the petitioners, but they apparently did not avail themselves of that opportunity.

Another observation: the petitioners relied upon the Unigenetics laboratory. This is a laboratory which refused to be allow standard inspections to be come an accredited laboratory. It strikes this observer that it was the responsibility of the petitioners to obtain the laboratory notebooks. Without them, the DoJ was unable to effectively cross examine their witness who was claiming that Unigenetics was a good laboratory. That expert, Dr. Kennedy, took part in the UK Litigation, so he too was relying at least in part on data which was not entered into evidence.

The Judge asked Ms. Chin-Caplan if she could have made her case if Dr. Bustin’s testimony were excluded. Ms. Chin-Caplan claimed that she could

this is counter to what the special master who heard the case and wrote the decision *clearly* wrote in that decision

I think it is safe to say that *neither* the DoJ *nor* the petitioner’s attorney came away without some very tough scrutiny by the judges.

More on this appeal can be found in a piece on the VaccinesWork blog, Appeals Won’t Succeed – Olmsted Isn’t Honest

Even though I give away the ending of his excellent post, I quote it here:

The Court of Appeal panel in Hazlehurst faced roughly the same arguments as the Cedillo panel. The Court of Appeal reviews the trial court decision ‘de novo’, or brand new. If they don’t like the trial court decision, they replace it with theirs. However, the appeals court and the trial court can’t merely replace their judgment for the Special Master. All quotes below are from the Court of Appeals decision in Hazlehurst.

By statute, the Court of Federal Claims may set aside the special master’s decision “only if the special master’s fact findings are arbitrary and capricious, its legal conclusions are not in accordance with law, or its discretionary rulings are an abuse of discretion.”

Appeals courts are very limited in what they can do when they disagree with the facts decided by a trial court (in a criminal matter) or the medical facts (before the Special Master). But normally the Court of Appeal can substitute its views on admissible evidence for that of the trial court (criminal court) or the Special Masters. That isn’t the case here, because following the statute that governs the Vaccine Court, Rule 8 states:

In receiving evidence, the special master will not be bound by common law or statutory rules of evidence but must consider all relevant and reliable evidence governed by principles of fundamental fairness to both parties.” Vaccine R. 8(b)(1) (2009).

Even if the Court of Appeals thinks that the Special Master was wrong when letting in Dr. Bustin’s testimony after giving the plaintiffs a year to apply to the British for access to the reports, that isn’t enough for them to substitute their opinion for that of the Special Master.
So there is near zero chance that the appeal would succeed. Dan Olmsted should have said so and explained why.

ARC of California action alert–Help Save Lanterman Act Services for People With Disabilities

16 Jun

If you live in California you likely know that the state is under a huge budget crunch. If you are reading this blog you may also know that the state has implemented some drastic changes in the Lanterman Act–the law that set up the regional centers and governs much of how the developmentally disabled are supported.

Here is the action alert from the ARC of California. If you live in California, consider going to that site and sending the email to the legislature. The ARC’s message is below:

Help Save Lanterman Act Services for People With Disabilities

Dear Friends,

I’m asking you to take 45 seconds to make sure that no one is cut off from services funded through a regional center without a chance to participate in the decision.

The Arc’s bill to stop that horrible practice is going to face a hearing and vote soon in the Senate Human Services Committee. Please click on the blue “Take Action” line in the upper right and follow the simple instructions about how to send a pre-written support e-mail.

About 700 people sent these e-mails to the Assembly Human Services Committee in April, which is one reason why our bill passed that committee 5-1 and then the full Assembly 65-7. Can we reach 1,000 this time?

Under the Lanterman Act, everyone with intellectual and other developmental disabilities and their family members is supposed to able to participate in the decisions that affect their own lives through the individual program plan or individual family support plan process.

But, especially in the last year, in hasn’t always worked that way. In the chaos caused by the drastic 2009 budget cuts and the sometimes confusing new laws that the Legislature and Governor Schwarzenegger passed along with the cuts, some regional center staff members have mistakenly simply cut people off.

Assembly Bill 2702, introduced by Assembly Member Wesley Chesbro and sponsored by The Arc, will it make it clear that the Lanterman Act hasn’t changed – it still gives decision-making power to the planning teams, which include the people with intellectual and other developmental disabilities and their parents or other advocates.

Please forward this Action Alert far and wide to anybody you know in California who might be willing to send an email to help our community.

Thank you for your advocacy.

Greg

Age of Autism Abandon Pretence part II

16 Jun

A while back Kev wrote a piece, Age of Autism Abandon Pretence, pointing out how they are drifting away from any real connection to the autism communities in favor of attacking the vaccine program. It wasn’t shocking then to anyone who reads the Age of Autism blog. It isn’t shocking now.

In her piece, Dr. Mayer Eisenstein’s New Book Merits Close Attention, Anne Dachel wrote:

These are people I’m in touch with everyday and who’ve written on autism and on vaccines. Some I’ve had on my threads for years. And as someone who’s been active in the national autism community for a long time, I’ve seen tremendous changes. More and more people are speaking out. We are now an organized and united group, thanks mainly to the power of the Internet. Our message has severely eroded confidence in the cornerstone of health care: THE CHILDHOOD VACCINE PROGRAM. (And keep in mind that there are many more experts writing about this, people I’ve never been in contact with, all challenging the unwavering safety claims of our health officials.)

Bold added by me.

Previous comments on the Age of Autism blog include:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

True vaccine safety advocates don’t resort to attempts to bring “… the vaccine program to its knees” or eroding “…the cornerstone of health care”.

Moving computers away from text: iPods and iPads

15 Jun

Visual. As a parent of a young autistic child I hear that term a lot. Visual schedule. Picture Exchange Communication System (OK, not using the word “visual”, but related) Autistics are visual learners.

I’ve had this piece as a draft for some time. Then I saw a recent post by Shannon Des Roches Rosa entitled The iPad: a Near-Miracle for My Son With Autism. I had to finish this.

Consider computers. Computers started as language based–text entry and output–devices. Anyone remember punch cards? Teletype terminals? The story goes that Steve Jobs went to Xerox’s research center (Palo Alto Research Center, or PARC) and was shown three things: object oriented programing, networking and the graphical user interface and the mouse. All of those were to be major advancements and, of those, he fixated on the graphical user interface.

I’ve written in the past about the program Proloquo2Go in the past in a post Insurance bureaucracies slow to catch up on new AAC devices, as well as a recent attempt by a special education teacher who was trying to win a grant to obtain iPod touch’s and Proloquo2Go. I first heard about this AAC solution from a post on Change.org by Dora Raymaker.

Here is a video discussing Proloquo2Go.

http://www.myfoxtampabay.com/video/videoplayer.swf?dppversion=6494

Beyond just AAC functionality, the iPod/iPhone/iPad user interface has some distinct advantages. It is not text-based. Doesn’t take a keyboard. Sure, some functionality and some content require text, but much can be accomplished without it. Want to watch a video? No need to set up a DVD player. No need to navigate some “on-demand” menu.

As Shannon points out, the iPad is not just a big iPod touch. She puts it quite well:

After Leo spent five minutes with his iPad, I realized that any assumptions I had about it being merely a bigger or a more breakable iPod touch were idiotic. It’s a tough little device. And for Leo, the larger scale of the iPad makes everything he wants to interact with just the right size, and therefore totally accessible. He may have a hard time writing on paper or typing on a computer keyboard, but he is a world-class iPad swiper and tapper, and his excellent visual memory means he can use that swiping and tapping to navigate between apps and videos with precision.

The portability of the iPod Touch (and the lower cost) makes it very portable. Visual schedules can be made on-the-fly without need for huge icon books. Portable music and videos can be excellent for regulation, or just plain entertainment! As Shannon points out in her piece, there are a lot of apps and games which are very accessible.

And, they are cool.

I am quite taken with the iPad/iPod technology where I’ve seen it in action. They are expensive (the iPad starts at $500), and look oh-so-fragile. But they are really much more than toys.

Audio of the Cedillo appeal part 1

15 Jun

The vaccine court case of Michelle Cedillo is apparently the last one of the Omnibus Autism Proceeding which is still undergoing appeals. I wrote about the appeal recently on LeftBrainRightBrain, but those were responding to second-hand accounts of the hearing.

With thanks to commenter Anne, the audio is here:

Cedillo appeal arguments

Below are notes I took on the first part of the hearing–the part where the lawyer from the Michelle Cedillo (also representing the rest of the petitioners) was speaking. I’ll get to the second half shortly. I tried to put my own commentary in italics.

Suffice it to say, the notion that the petitioners presented compelling arguments and the judges were entirely favorable to them isn’t born out from the audio.

Ms. Chin-Caplan (attorney for the petitioners, including Michelle Cedillo) argued that the rules of the civil procedure do not apply in the vaccine court and that the government used them as “a club and a shield”.

She complains that the government required them to go to a foreign jurisdiction (the UK) to obtain documents.

I found that odd in light of the fact that the petitioners did try to obtain documents from the UK as early as 2004.

In response to the complaint that the Special Masters required the petitioners to work with this foreign jursidction, the judge asks if the petitioners filed a motion (under rule 26) to compel the government to produce the documents. Ms. Chin-Caplan argued that the Federal rules of procedure do not apply in the vaccine court. The judge responded “that’s not quite true”. Under rule 7 of the vaccine rules, Ms. Chin-Caplan could have asked that the Federal rules be followed. The judge asked if the petioners made a motion to follow those rules.

The judge asks, since they wanted the underlying data why didn’t Ms. Chin-Caplan ask the Special Masters to “please compel the government to bring in the underlying data”. Rules were in place to do that, but the petitioners didn’t do this. Ms. Chin-Caplan discusses that they worked with counsel in the UK for advice on how to proceed in the UK. However, they gave up before filing for the documents.

Ms. Chin-Caplan argues that lack of due process was “pervasive” in the proceeding. One judge asks what other pervasive violations of due process existed. She referred back to the same situation about Dr. Bustin.

In other words, she dodged the question of “pervasiveness”.

Judge–weren’t you given the opportunity to follow-up and to question and challenge the testimony? Ms. Chin-Caplan talks about how new information was presented at the hearing.

She doesn’t discuss the opportunity to challenge the testimony in post-hearing briefs.

Judge–points out that the petitioners didn’t follow through on all avenues to get the material from the UK.

The petitioners abandoned the opportunity to request the material from the UK based on advice from the counsel they consulted with in the UK. In other words, they didn’t actually try to get the courts in the UK to unseal the documents.

Judge Lyn notes that there was a concession that Mr. Conway (Ms Chin-Caplan’s colleague in this case) conceded that the lack of access to these documents did not prejudice the case.

Ms. Chin-Caplan is stuck trying to argue that her own colleague’s concession was incorrect.

Ms. Chin-Caplan argued that the test-cases were supposed have the “general causation” arguments only made during the Cedillo hearing, not the Snyder hearing. Thus, when Dr. Rima testified in the Snyder hearing, council for the Cedillos were not present. Ms. Chin-Caplan argues that Dr. Rima presented a calculation based on information about Michelle Cedillo and that this was in error. She further argues that since she was not present for this hearing, she didn’t know about that until the decision was handed down and it included reference to this testimony.

I find it very odd that her argument is that she wasn’t following the other test cases in the Omnibus.

Ms. Chin-Caplan argues that she submitted the alleged Rima miscalculation–and added more post-hearing information that should have been admitted. This was filed for reconsideration of the decision. This includes a textbook by Prof. Zimmerman of the Kennedy Kreiger Institute and a paper.

The Judges point out that much of the information was available before the decisions were handed down. Ms. Chin-Caplan argues that the Special Master didn’t have time to read the textbook (it came out a month before the decisions).

One of the judges points out that the petitioners would still have a difficult time with the present state of the science proving their case.

Ms. Chin-Caplan notes that the Althen standard: that they have to present a plausible theory of events and have a timeline.

Ms. Chin-Caplan makes a statement I have a difficult time parsing: “Plausibility to some people for whatever reason seems to mean “possible”. But plausibility in the scientific and medical world means that it makes sense from a thinking it through from a scientific and medical standpoint that this can occur.”

Ms. Chin-Caplan discusses the theory they have for MMR causing injury in Miss Cedillo. A judge points out that Ms. Chin-Caplan appears to asking them to reweigh the evidence, which isn’t their job.

I would argue that Ms. Chin-Caplan and the others in the OAP did not present a plausible theory for how MMR would cause autism. Multiple witnesses for the government showed how each leg of their theory was implausible.

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