Archive by Author

U.S. Department of Justice opens investigation on Judge Rotenberg Center

23 Feb

The Judge Rotenberg Center (JRC) is probably the best known and most controversial special education school in the world. The JRC describes itself as:

The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.

If you haven’t heard of them, you are probably wondering how they could be controversial. From the JRC website:

If positive and educational procedures alone are not effective, then after trying them for an average of 11 months, we approach the parents to suggest supplementing the rewards with a corrective (aversive) consequence for the problem behavior. If the parent approves, and if we obtain an individualized authorization from a Massachusetts Probate Court, we apply an aversive in the form of a 2-second shock to the surface of the skin, usually on the arm or leg, as a consequence each time the problem behavior occurs.

Yes. The JRC uses aversives. Not just any aversives, they use electric shocks. When I first read that it sounded like they get parental and Court approval for each shock. Not so. Children are fitted with backpacks or “fanny packs” which have control units. Children are monitored 24/7. If a staff member believes an aversive is called for, the JRC staff can remotely signal the control unit to apply a shock to the child. Children can be shocked 30 times–or more–in a single day.

A coalition of disability organizations have filed a complaint against the Judge Rotenberg Center with the United States Department of Justice.

The Department of Justice responded with a letter stating they have opened a “routine investigation”.

A letter from Nancy Weiss informing people of the investigation is below. Ms. Weiss is from the National Leadership Consortium on Developmental Disabilities and the University of Delaware.The Complaint letter, signed by 31 disability organizations, is quoted below that.

Disability advocates have cause for celebration today. In response to the September 30th letter signed by 31 disability organizations, the U.S. Department of Justice, Civil Rights Division has announced that they have initiated an official investigation of the Judge Rotenberg Center (JRC); see the Department of Justice letter attached.

I’ve been waiting to receive the official notice before announcing this exciting news for the 31 disability organizations that signed the September 30th letter and for all of the disability advocates who have been fighting for over twenty-five years to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation as methods of behavior control. Our September 30th letter was sent to seven government agencies and three human rights organizations (see list of letter’s recipients below and the letter and addendum, attached).

The initial response of the Department of Justice was that they didn’t believe that they could take action because they didn’t believe they had jurisdiction over privately operated facilities (like the Judge Rotenberg Center) since CRIPA, the Civil Rights of Institutionalized Persons Act (http://www.justice.gov/crt/split/cripa.php) applies only to state-run (not state-funded or -licensed) institutions. I suggested to them that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities (see my email to them below). Their letter states that they are pursuing this investigation under Title III of the ADA which prohibits discrimination against people with disabilities.

None of the other government or human rights organizations that were recipients of the letter have so far been able or willing to take action – Human Rights Watch and Physicians for Human Rights had other priorities; Amnesty International is seeking guidance through their international headquarters in London but, as has been our experience in the past, they have shown little interest. The U.S. Department of Education referred us to their efforts with regard to seclusion and restraint, which, while related and important issues, do not address the concerns about electric shock and other aversive procedures described in the letter. The Office on Disability suggested that advocates should “think about finding a way to connect this issue to regulatory compliance,” though clearly we have pursued this approach with limited success for over twenty-five years.

While it is not possible to say how long the Department of Justice investigation will take (they just chuckled when I asked this) or what the impact of this investigation will be, we know that Department of Justice investigations are customarily thorough and rigorous. I will certainly keep the 31 signing organizations and others who have expressed interest in this effort informed along the way. If you are not sure you are on that list and would like to be kept posted, just send a reply email.

If you have first hand knowledge of JRC/BRI related issues and would like to be interviewed by the Department of Justice investigators, please let me know and I will pass this on to them.

To each of you who has maintained energy for this issue over a long, frustrating and mostly unproductive battle, I am most appreciative of your continued commitment. When you think about how long these abuses have been known and generally ignored, I know you share my sense that we must have fallen down the rabbit hole. We can only keep our fingers crossed that this is the first step in righting a long history of wrongs.

With renewed hope,

Nancy

This is the complaint letter.

September 30, 2009

We are writing to ask the above Government agencies and human rights organizations to take action to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation – all inhumane and unnecessary methods of behavior modification used in some schools and residential facilities for children and adults with disabilities in the United States. This letter is signed by 31 disability organizations concerned with the humane treatment of people with disabilities.

The attached information focuses on the practices of the Judge Rotenberg Center in Canton, Massachusetts. While there are examples of the use of prolonged seclusion and unnecessary restraint in schools and residential facilities across the country, studies prepared by government agencies and investigative reports that have appeared in the media suggest that the Judge Rotenberg Center uses these procedures as well as painful electric shock and food deprivation. According to public sources, residents of the Judge Rotenberg Center receive painful electric shocks for behaviors as innocuous as stopping work for more than ten seconds, getting out of their seats, interrupting others, or whispering1. In the view of the undersigned, the use of painful and dehumanizing behavioral techniques violates all principles of human rights. We are sending this letter to a number of government and human rights organizations. We ask that you show leadership in protecting the rights of all people in the United States by acting to put an end to these inhumane practices wherever they occur.

The type of practices against which we ask you to take action have been documented in numerous government reports and other public documents. One of the best documentations of these practices is the June, 2006 New York State Education Department report2 that noted the following concerns about the Judge Rotenberg Center (JRC):

“Students wear the GED device [the device that delivers the electric shock] for the majority of their sleeping and waking hours, and some students are required to wear it during shower/bath time. The GED receivers range in size and are placed in either “fanny” packs or knapsacks. Staff carry the GED transmitters in a plastic box. Students may have multiple GED devices (electrodes) on their bodies. For example, one NYS student’s behavior program states, “C will wear two GED devices. C will wear 3 spread, GED electrodes at all times and take a GED shower for her full self care.” (p.7)

“A combination of mechanical restraint and GED skin shock is also used to administer a consequence to students that attempt to remove the GED from their bodies. In instances where this combined aversive approach is used, the student, over a period of time specified on his or her behavior program, is mechanically restrained on a platform and GED shocks are applied at varying intervals. … An example of this is found on one NYS student’s behavior program; a consequence for pulling a fire alarm is to receive 5 GED [shocks], over a 10-minute period, while being restrained on a four-point board.” (p. 9)

Another example of these inhumane practices was documented by NPR Health Reporter Joseph Shapiro, in his book No Pity. His observations of The Judge Rotenberg Center include the following:

” … one young man got tired of picking out matching shapes on a computer screen. But his teacher demanded that he continue and pinched him on the palm for disobeying. The young man …made a guttural noise of protest and tried to get up. In a second, two staffers had thrown him face down on the floor. This only made him more agitated. Then came a squirt in the face with ammonia water. The man spent a minute on the floor, trying to move and protest, but was restrained by one staffer’s knee in his back and another’s grip on his arm.”3

The JRC website describes these practices as “intensive treatment procedures”4 but almost every national disability organization agrees that the use of painful procedures to change a person’s behavior is unnecessary, inhumane, and should be banned.5

With this letter, we ask The House Committee on Education and Labor to take legislative action to end the use of these practices. In our view the practices described in the New York State Education Department report on JRC meet the definition of torture in the United Nations’ Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment that is, “any act by which severe pain or suffering, whether physical or mental; is intentionally inflicted on a person; for such purposes as:

* obtaining from him/her or a third person information or a confession;
* punishing him/her for an act s/he or a third person has committed or is suspected of having committed;
* intimidating or coercing him/her or a third person;
* or for any reason based on discrimination of any kind;

when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity.”6

We the undersigned urge you to review the attached information which documents extensive instances of inhumane practices and take legislative and regulatory action to halt the continued abuse of children, adolescents and adults with disabilities. Through numerous pleas and campaigns, advocates have seen little action from federal, state or local regulatory agencies or the criminal justice system. These entities have been aware of the documented abuses for over thirty years. Even though there is broad professional agreement that a wide range of positive interventions are available which are at least as effective in managing dangerous behaviors, and which do not inflict pain on or dehumanize individuals with disabilities, no regulatory agency has been able or willing to act to eliminate these practices.

As a group of advocates concerned with the support of persons with disabilities, we call on these Government agencies and human rights organizations to work with us to expose and condemn these behavioral techniques, take the legislative and other necessary steps to protect the rights of people with disabilities, and bring an end to these practices.

For additional information, to discuss proposed action, or to contact the organizations below, please contact Nancy Weiss by phone: 410-323-6646 or e-mail: nweiss@udel.edu

Signed:

Alaska Youth and Family Network and YouthMOVE

Anchorage, AL

American Association on Intellectual and Developmental Disabilities

Washington, DC

Association of University Centers on Disabilities

Silver Spring, MD

The Arc of the U.S.

Silver Spring, MD

Autism National Committee (AutCom)

Forest Knolls, CA

The Autistic Self Advocacy Network

Washington, DC

Center on Human Policy, Law, and Disability Studies, Syracuse University

Syracuse, NY

The Coalition for the Legal Rights of People with Disabilities

Boston, MA

Cobb and Douglas Counties Community Service Boards

Smyrna, GA

Connecticut Council on Developmental Disabilities

Hartford, CT

Disability Rights Education and Defense Fund

Berkley, CA

Easter Seals

Chicago, IL

Exceptional Parent Magazine

Johnstown, PA

Hope House Foundation

Norfolk, VA

The Learning Community for Person Centered Practices

Annapolis, MD

The Maine Independent Media Center

Waterville, ME

Maryland Coalition for Inclusive Education

Hanover, MD

National Association of County Behavioral Health and Developmental Disability Directors

Washington, DC

National Association of Councils on Developmental Disabilities

Washington, DC

National Association for the Dually Diagnosed (NADD)

Kingston, NY

National Disability Rights Network

Washington, DC

The National Leadership Consortium on Developmental Disabilities, University of Delaware

Newark, DE

Respect ABILITY Law Center

Royal Oak, Michigan

RHA Howell, Inc.

Raleigh, NC

Self Advocates Becoming Empowered

Kansas City, MO

TASH

Washington, DC

United Cerebral Palsy

Washington, DC

Values Into Action

Media, PA

University of Medicine and Dentistry of New Jersey, School of Nursing

Newark, NJ

University of San Diego Autism Institute

San Diego, CA

The Voices and Choices of Autism

Lakewood, CO

Here is an addendum letter.

Addendum to Sept ’09 Letter from Disability Advocates – End Inhumane Practices.doc

If you can stand reading more about JRC, Mother Jones ran a story on JRC in 2007, School of Shock.

The disability advocates say it much better than I ever could. Picking but one sentence: We cannot condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population.

Autism Sunday, UK Style

22 Feb

One of the best things about being British is that whenever there’s something that needs attending or observing you can be assured that Cliff Richard will be there intently attending and observing. [insert personal diety here] save us all, if that other great UK institution (the rain) chances along then Sir Cliff may even threaten to sing at said event!

Alongside His Royal Cliffness on the 14th were lots and lots of politicians at All Saints Church in Woodford Wells – not quite Premier League politicos (Gordon Brown and David Cameron sent best wishes) – but even so, those whose portfolios fell vaguely within the remit of suggesting they had to care about people.

My gently mocking tone might give rise to the idea that I’m anti autism Sunday which isn’t true. I think anything which raises awareness _of the right sort_ is a good thing. I’m not sure if Ivan and Charika Corea who founded Autism Sunday and are parents of an autistic child had any idea beyond stating ‘this is Autism Sunday’ when creating the concept but this year they commendably asked the UK Gvmt to remember that amongst the many many victims in Haiti were autistic victims and that the prosaicly named ‘the Autism Clinic’ (a name which gives rise to the uncomfortable suspicon its the sole one) needs a LOT of help to get itself up and running again. Ivan said:

I am also urging the Government to help re-build the Autism Clinic in Haiti. The clinic was completely demolished by the earthquake. I have contacted the Prime Minister, Foreign Secretary David Miliband and International Development Secretary Douglas Alexander to spend a fraction of the promised £18 million aid package to Haiti to re-build the clinic. My heart sank when I saw the television news of the disabled dying of starvation on the road and there was no one coming to their aid. I kept thinking what if it was my son who was on that road? I appeal to HM Government not to walk by on the other side and help re-build the Autism Clinic in Haiti.

Quite. The terrible images coming out of Haiti and the idiotic media ramblings portraying Haiti as a lawless zone sliding into violence should serve to remind us that autistic people exist everywhere and that our duty as an international autism community don’t end at our own borders. Please urge your politicians, wherever you live, to promise aid for the Autism Clinic directly.

Andrew Wakefield’s Autism Organization?

22 Feb

There has been a major push to show support for Dr. Andrew Wakefield following the clear and decisive ruling against him in by the General Medical Council and the retraction of his flagship paper in The Lancet and his departure from Thoughtful House.

I have some advice for those who are supporting Dr. Wakefield. I realize advice from me is about as welcome to them as me seeing Dr. Wakefield in my pediatricians’ office, but here goes:

If you want to show real support, add him to your board of directors. Add him to your Science Advisory Boards. Call yourselves “Andrew Wakefield’s Autism Organization”. When big donors call, have them speak with Dr. Wakefield. When you lobby the legislature, bring Dr. Wakefield.

Don’t keep him at arm’s length while trying to rehabilitate his reputation.

The way I see it, right now Dr. Wakefield is a liability. It is one thing to write blog posts or letters to newspapers. It is quite another to spend your organizations reputation.

Between the time I started a draft of this post and it now, Dr. Wakefield has made his first public statement about his departure from Thoughtful House. He mentions that he has an “entirely new sort of opportunity that will allow me to continue my work on behalf of autism families”. Who knows, maybe one or more of the existing orgs will take him on.

Obama’s disappointing education budget

21 Feb

One of the key features of the Obama commitment during the campaign was a commitment to fully fund the IDEA (Individuals with Disabilities in Education Act). The IDEA made a commitment that the U.S. Federal Government would pay 40% of the costs of special education. In reality, the government typically pays about 17%.

Here is the wording from his plan. It was inspiring to hear a presidential candidate make such a bold commitment. One that could make a huge difference for disabled children.

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and
consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress
promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has
never lived up to this obligation. Currently, the federal government provides less than half of the promised
funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped
school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA
will provide students with disabilities the public education they have a right to, and school districts will be able
to provide services without cutting into their general education budgets. In addition to fully funding IDEA,
Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

Here is what the 2011 budget proposes:

The $12.8 billion request for Special Education programs focuses on improving educational and early intervention outcomes for children with disabilities. For the Grants to States program, the Administration is requesting $11.8 billion, an increase of $250 million over the 2010 appropriation, to maintain the Federal contribution toward meeting the excess cost of special education at about 17 percent of the national average per pupil expenditure (APPE), and provide an estimated average of $1,750 per student for about 6.7 million children ages 3 through 21. Funding for the Grants for Infants and Families and Preschool Grants programs would be maintained at their 2010 levels

17%. Status quo. Disappointing.

Proposed HHS budget has $16M more funding for autism research

21 Feb

The United States Department of Health and Human Services is proposing an increase in autism research funding of $16 million, or about 8% over the 2010 budget:

Addressing Autism Spectrum Disorders: The Budget includes $222 million, an increase of $16 million, for Autism Spectrum Disorders (ASD). NIH research will pursue comprehensive and innovative approaches to defining the genetic and environmental factors that contribute to ASD, investigate epigenomic changes in the brain, and accelerate clinical trials of novel pharmacological and behavioral interventions. CDC will expand autism monitoring and surveillance and support an autism awareness campaign. HRSA will increase resources to support children and families affected by ASD through screening programs and evidence-based interventions.

The Obama administration had originally projected $210M by 2011, so if this gets approved they will be ahead of the original plan.

Last year the Obama administration proposed $211 million:

Supports Americans with Autism Spectrum disorders (ASd). The President is committed to expanding support for individuals, families, and communities affected by ASD. The Budget includes $211 million in HHS for research into the causes of and treatments for ASD, screenings, public awareness, and support services.

If I do my sums correctly, congress actually funded $206 million. Don’t be surprised if the amount funded for 2011 is less than the $222 million proposed. Then again, according to Jocelyn Kaiser at Science:

And in any case, the president’s budget proposal doesn’t mean much because Congress usually ends up giving NIH more than the president requests.

The budget mentions autism in other places:

INVESTING IN SCIENTIFIC RESEARCH AND DEVELOPMENT
Exploring Scientific Opportunities in Biomedical Research:
The Budget includes $32.2 billion for NIH, an increase of $1 billion, to support innovative projects from basic to clinical research. This effort will be guided by NIH’s five areas of exceptional research opportunities: supporting genomics and other high-throughput technologies; translating basic science into new and better treatments; reinvigorating the biomedical research community; using science to enable health care reform; and focusing on global health. The Administration interest for the high-priority areas of cancer and autism fits well into these five NIH theme areas. In FY 2011, NIH estimates it will support a total of 37,001 research project grants, including 9,052 new and competing awards.

Emphasis added.

also,

Autism and Other Developmental Disorders: The Budget requests $55 million, an increase of $7 million, as part of the President’s Initiative to support children with autism spectrum disorders and their families. This funding will continue to expand Federal and State programs authorized in the Combating Autism Act to research, and support screening and vidence-based interventions when a diagnosis is confirmed.

also,

National Vaccine Injury Compensation Program: The Budget requests $7 million for the Vaccine Injury Compensation Program to prepare for projected increases in claims and continue reviews of over 5,100 claims from autism proceedings.

also, under ADDRESSING RESEARCH PRIORITIES IN FY 2011:

In FY 2011, for autism spectrum disorders, again building on significant Recovery Act investments, NIH will undertake complete genome sequencing and comprehensive DNA analyses of 300 autism spectrum disorder cases, and will launch the first epigenomic studies of brain samples from individuals with and without autism. NIH will also use a network of health maintenance organizations to identify patterns of environmental exposure during pregnancy and perinatal life that may contribute to autism.

and,

In FY 2011, NIH will also accelerate Phase 3 clinical trials of a promising mGluR5 antagonist, begin a clinical trial of the drug rapamycin, and create a translational pipeline for advancing additional small molecule drugs for autism.

Would I like to see more funding applied to autism? Heck yeah. But, this is twice the commitment that the previous administration made in autism research.

The proposed budget continues the NIH commitment to research on environmental and gene-environment causation of autism.

Mark Blaxill attempts to support Andrew Wakefield?

20 Feb

As most have now gathered, Andrew Wakefield’s career in the UK is finished. However, the PR machine keeps spinning in the USA as a new fascinating web piece from Brian Deer reveals.

Brian tells the story of how Max Clifford’s daughter – who works for her father – had apparently been ready to take on Andrew Wakefield as a client:

They are looking to take us on for a few months…

However, her father – who previously refused to work with Michael Jackson – had other ideas:

It’s my company, and my daughter works for me, he said

…

We are not involved, and we will not get involved unless they are backed by top medical experts…

Heh. Not much chance of _that_ happening.

During the piece Brian discovers who might be financing Andrew Wakefield’s about-face in the public eye. He suggests a couple of names to Clifford’s daughter who confirms the participation of one Mark Blaxill:

…she appeared to take the bait over Blaxill. “Right, Mark. Okay. Mark is…” But then she paused to ask: “Brian, what’s your background?

Amazing that someone who was preparing to work with Brian Deer didn’t know who Brian Deer was but more interesting to me was the possibility that Mark Blaxill was preparing to fund Max Clifford’s PR firm to try and rehabilitate Andrew Wakefield’s public image. Go read the whole thing, its pretty interesting.

It’s official, Dr. Krigsman to leave Thoughtful House

20 Feb

Thoughtful House, the clinic and research center founded by Dr. Andrew Wakefield, is losing both Dr. Wakefield and, now, Gastroenterologist Dr. Arthur Krigsman.

From a Yahoo group (as posted by Mike Stanton in the comments on LeftBrainRightBrain):

Re: Dr. Krigsman

Dr. Krigsman’s decision to relocate his clinical practice to a facility outside Thought House reflects his belief that the complexities inherent in a referral-based practice can be best addressed by his working independently. We will continue to refer patients for GI evaluations when appropriate, and we look forward to continuing to work with Dr. Krigsman on research projects. We are grateful to Dr. Krigsman for his dedication to Thoughtful House and for the work he does on behalf of the children we serve.

Just to be clear, this is official.

Jane

Fees for the Omnibus Autism Proceeding hit $7M

20 Feb

In the United States, the court hearings on whether vaccines cause autism were held under the Omnibus Autism Proceedings (OAP). These proceedings represented over 5,000 families who filed for consideration that they had a child who (a) suffered a vaccine injury and (b) this injury resulted in autism.

The OAP heard six “test cases”. Each test case represented both the question of whether the specific test-case child considered suffered a vaccine injury and also the general question of whether the idea that vaccines cause autism was proven.

The first three test cases considered the question of whether the MMR vaccine could cause a vaccine injury resulting in autism. The second three test case considered the question of whether thimerosal containing vaccines could cause vaccine injury resulting in autism.

The decisions from the MMR cases have been handed down, and they were unanimously and definitively against the MMR causes autism theory. These have been appealed and that appeal was denied. I believe an appeal to the U.S. Supreme Court has been either filed or planned.

The decisions in the thimerosal cases have not been handed down yet.

The OAP was a very long process, starting in 2002 and still ongoing, involving multiple law firms and many lawyers and experts. It has been an expensive process. We are slowly learning just how expensive.

Last year an interim award of over $2M in legal fees was granted for lawyers working on the Cedillo test case. That was the first case heard in the MMR segment of the AOP.

The Court has now granted an interim award of $2,300,000 for the King test case, the first heard in the Thimerosal segment of the AOP.

During an unrecorded telephonic status conference on July 1, 2009, the law firm of Williams, Love, O’Leary, and Powers (WLOP) agreed to reduce its interim attorneys’ fees and costs request from $3,101,764.84 to $2,300,000.00, including $2,070,000 in fees and $230,000 in costs. Respondent’s counsel then indicated that respondent will not object to that amount. WLOP’s reductions included: the withdrawal of time and expenses relating to direct legislative lobbying, that is, any activity relating to efforts to affect the outcome of the political process; the withdrawal of time and expenses relating to “case specific” work in cases other than this claim, and unrelated to “general causation” work on the OAP; the withdrawal of time and expenses WLOP conceded were related exclusively to civil cases outside of the Vaccine Program; and the withdrawal of time and cost claims relating to public relations and media work during the pendency of the OAP. In addition, WLOP generally reduced the fees it requested for time spent on the OAP. Finally, WLOP agreed to significantly reduce the expenses for which it sought reimbursement, particularly those costs incurred while on travel.

Let me highlight a couple of statements:

the withdrawal of time and expenses WLOP conceded were related exclusively to civil cases outside of the Vaccine Program.

and

WLOP’s reductions included: the withdrawal of time and expenses relating to direct legislative lobbying, that is, any activity relating to efforts to affect the outcome of the political process

Bold is mine.

Apparently, the law firm applied for and was denied funding for work done for civil cases that were outside of the vaccine program and for lobbying efforts. What were they thinking trying to get tack that onto their fee request? Let’s face it, the Omnibus has already subsidized any upcoming civil cases by giving the lawyers time to research their arguments and pay experts. And, really, asking the program to pay for lobbying?

This is only an “interim” fee request. Fees are still mounting, and not all the past fees have been assessed:

Of note, this Decision resolves all fees and costs requested by the WLOP firm in the King interim fees application, at Tabs A & B of that application. This Decision does not resolve the amounts requested at Tabs C through U of that application.

I don’t know how much is involved with “Tabs C through U”, but it sounds like the remaining fees could be considerably more than the $2.3M granted.

It is interesting to note that the father/son team of David and Dr. Mark Geier have expert fee requests submitted (and as yet unpaid) for this case, even though they were not called as witnesses and, to my knowledge, did not submit expert reports:

This does not resolve the vast majority of fees and expenses relating to Drs. Geier and Young. The majority of expenses relating to Dr. Geier, David Geier, and Dr. Young are included in the PSC Committee Costs, at Tab C of the initial Fee Application

The Geier’s are well known “experts” in the vaccine court. Young, I suspect, is the same person as co-authored a paper with the Geiers purporting to show a link between neurodevelopmental disorders and thimerosal in vaccines. That paper was reported to have been recieved funding “…from the Autism Petitioners’ Steering Committee of the no-fault National Vaccine Injury Compensation Program (NVICP).”

I am all for petitioners in the Vaccine Court having access to good experts. I don’t consider the Geier team to meet that standard. Should the Petitioners’ Steering Committee have decided to fund this reasearch, I see that as their expense, not one that should be passed on to the vaccine program. Dr. Mark Geier has been referred to in court documents as:

There are multiple cases where Dr. Geier’s opinion and testimony have been given little or no weight because they exceeded the scope of his expertise.

and

Dr. Geier is “a professional witness in areas for which he has no training, expertise, and experience”

I frankly suspect that funding The team of Young, Geier and Geier in this instance is another attempt to get the Vaccine Program to pay for work the lawyers expect to use in the civil cases that will follow the likely rejection of the Vaccine Court hearings. Remember, they weren’t called as expert witnesses in the Omnibus.

One other expert witness of note, Dr. Vas Aposhian, is also mentioned in the fee ruling:

This decision resolves the $34,048.25 that WLOP requested for expenses related to Dr. Aposhian ($31,750.00 in fees; and $2,298.25 in expenses incurred in May 2008). This decision does not resolve the $207,382.53 in fees and expenses included in the PSC Committee Costs for costs relating to Dr. Aposhian, nor does it resolve the $7,910 requested by Williams Kherkher for costs associated with Dr. Aposhian. See Tab C at 3887 and Tab E at 4396-98.

We don’t have the decisions from the King hearing yet, but here are some comments from the Cedillo decision:

Thus, concerning this issue [genetic hypersensitivity to mercury], I conclude that the testimony of Drs. Brent and Cook was persuasive, and that the testimony of Dr. Aposhian was not.

I find that Dr. Brent’s testimony on this point [the lack of an established mercury efflux disorder] was persuasive, and that the testimony of Dr. Aposhian was not.

I wonder if Dr. Brent, whose expertise was persuasive, will be paid anything like the roughly quarter million dollars that Dr. Aposhian has billed.

So we have $2M in fees granted for the Cedillo hearings, and now $2.3M for the King hearings. This is part of a total of over $7,000,000 requested in interim fees:

In their application, the petitioners sought a total of $7,202,653 for interim fees and costs. This total reflected the fact that this case was, as explained above, one of the “test cases” in the OAP. Because this was a “test case,” in which the petitioners sought to present all of the “general causation” evidence concerning the theory that thimerosal-containing vaccines can cause autism, several different law firms participated in the development and presentation of the evidence, while five expert witnesses prepared expert reports and testified at length for petitioners during the evidentiary hearing. The high total sought reflects the participation of all those law firms and expert witnesses.

I don’t think anyone is surprised that this is a very expensive proceeding.

Millions of dollars were spent trying to prove the now discredited (and never well supported) hypothesis of Dr. Wakefield. The thimerosal hypothesis also never had much substance, and has cost millions more.

One thing good out of all this is that the proceeding also paid to compile expert reports from some real experts debunking the MMR and Thimerosal myths.

It’s time to get past the idea that autism is genetics

19 Feb

Or, at least, this is what David Kirby has to say in a recent interview.

Yes, I’m tired of David Kirby too. But some statements are just plain silly.

“I don’t believe autism is genetics,” he said. “I wish we could just get past that argument and accept the fact that these kids have been hit with some environmental trigger of some sort, or sorts, combined with these genetic predispositions … and get on with it.”

Here’s an admittedly sarcastic response: I am so glad when outsiders to the autism community spend years promoting an agenda that attempts to take focus away from needed science.

And, yes, I noticed that to David Kirby it is still all about “these kids”. Adults just don’t register on his radar.

Mr. Kirby is not always consistent. In the past he has stated:

I have always said there may be a small percentage of people with autism spectrum disorder (perhaps those with Asperger Syndrome) whose symptoms are a result only of their genetic makeup, with no environmental factors involved at all.

So, “a small percentage” in his view, can now be forgotten as we “get on with it”.

I wish Mr. Kirby well with his new book. I hope for the sake of the people whose lives he will affect, he has learned from the damage he caused to the autism communities.

Was Dr. Wakefield the complainant in his own GMC case?

19 Feb

Pop quiz: of these two people, who was the first to request that the General Medical Council (GMC) investigate Dr. Andrew Wakefield

a) Brian Deer
b) Dr. Andrew Wakefield?

Ah–trick question! Brian Deer didn’t ask the GMC to investigate Dr. Wakefield. Mr. Deer offered and gave information to the GMC, but, it turns out, only after Dr. Wakefield called for an investigation.

Let me start by saying I hesitated to publish this post as it will be just make it seem like there is a real controversy here. There isn’t. But after noting that the addendum to the Press Complaints Commission (PCC) complaint filed against Brian Deer included citations to LeftBrainRightBrain I decided to check into the “complainant” question.

Here’s the PCC complaint. Here’s the addendum.

There is a long “forensic analysis” argument to make the case that supposedly Brian Deer was the complainant. This struck me odd. Why do a “forensic” argument, unless you don’t have substantial proof.

In the matter of Dr Wakefield and the GMC, and based upon forensic analysis of all the available documentary evidence, one is entitled to believe that Mr. Deer was the original and only substantive complainant to the GMC, whether or not he was the ‘Complainant’ who instructed the legal prosecution of the case (which was the GMC through its lawyers Field Fisher Waterhouse).

OK, Brian Deer was the complainant, whether or not he was the ‘Complainant’. Everyone got that? Clear as mud?

It wasn’t to me, so I contacted the General Medical Council to ask a simple question:

I am sorry to bother you, but I was hoping you could help with a question. Is it public knowledge whether Mr. Brian Deer was a “complainant” for the Wakefield case? Was there any “complainant” or was this case brought forward by the GMC itself?

I received a very simple answer:

Dear Sir/Madam

The General Medical Council can act in response to complaints about doctors but we do not require someone to make a formal complaint to us before we can act. We can in fact initiate action against doctors of our own volition. This enables us to launch an investigation in response to publicly expressed concerns about the conduct of doctors, whether or not those concerns have been directly and formally referred to us.

The case against Dr Wakefield, Professor Walker-Smith and Professor Murch was brought by the GMC there was no complainant in this case.

I hope you find this information helpful and if you have any further queries relating to this case please do not hesitate to contact me.

When I asked if I could make this public, I was informed that this information is already public. Yes, I forgot the fact that Brian Deer had a letter from the GMC’s attorneys already. That is from May, 2005. I guess this whole, “he’s a complainant even if he isn’t a Complainant” thing has been going on for some time.

The “forensic analysis” seems to rest on the fact that Brian Deer has communicated with the GMC. There doesn’t seem to be any actual complaint filed, but, as we are told:

But what Deer does not reveal is that on February 25, 2004, three days after his article attacking Wakefield had been published in the Sunday Times, he had written to the GMC…

Yes, according to this timeline, Brian Deer published his article and then contacted the GMC 3 days later. It is characterized as a “spontaneous” communication in the complaint. As in, Brian Deer just out of the blue decided he needed to contact the GMC.

Dr. Wakefield left out an important part of the timeline. Namely, his own call for a GMC investigation. Here is a timeline:

February 22, 2004, Brian Deer’s article, Revealed: MMR research scandal is published.

February 23, 2004: Dr Wakefield states, “I’d welcome inquiry”

“Serious allegations have been made against me in relation to the provision of clinical care for children with autism and bowel disease, and the reporting of their disease. It has been proposed that my role in this matter should be investigated by the GMC. I not only welcome this, I insist on it and I will be making contact with the GMC personally.”

Two days later, on February 25, 2004: Brian Deer emails the GMC. This appears to be the first contact between Mr. Deer and the GMC. According to the excerpt in the PCC complaint filed by Dr. Wakefield:

email from Brian Deer to Tim Cox-Brown, Caseworker GMC, 12.16 pm 2.25.04. This is a sixpage letter concluding with the statement “As a matter of public duty, I write to offer this outline of my main findings, and to offer the GMC my fullest cooperation in getting to the bottom of these matters”.

Which, according to Dr. Wakefield, makes Brian Deer the “complainant” in the GMC hearing:

This reads as a spontaneous and intentional contact with the GMC for the purpose of requesting to put before them the substance of his complaint and in fact, doing so i.e. making a complaint.

Spontaneous? I guess if you leave out critical details like Dr. Wakefield’s own call for investigation. As I titled the post, couldn’t one say that Dr. Wakefield is the complainant? After all, it is Dr. Wakefield who appears to have called for the investigation.

← Older Entries
Newer Entries →