Archive | February, 2010

Did TACA change the rules to deny a blogger attendance at a conference?

27 Feb

Two years ago, AutismNewsBeat was Expelled! from an autism “conference” (AutismOne). Today, he was denied admission to the TACA Real Help Now Conference in Wisconsin.

TACA’s stated policy on the website is:

TACA strives to ensure that the focus of our conference is education and support, and to provide a safe, supportive environment for our attendees. TACA reserves the right to refuse admittance to any individual.

But this seems to be a new addition to the website. The Google Cache version of that page, from February 11, doesn’t have that language at all.

Two years ago, AutismNewsBeat attended a conference and did what many other parents were doing: he videotaped.

That didn’t get him thrown out (although it was used as the excuse for why he was thrown out)

What got him thrown out was asking an important question in a respectful manner:

I also attended a Q&A with Dr. Jon Poling, MD, PhD, and his wife, Terry. The Polings have been on a media blitzkrieg since March when they were identified as test case petitioners in the Vaccine Omnibus hearings. The details of the case are shrouded in speculation, since the Polings have not publicly released their daughter’s relevant medical records. I asked the Polings if they plan to release those records soon. Terry Poling said she and her husband would not discuss their daughter’s case as long as there was ongoing litigation.

Soon after I asked my question, a hotel security official asked me to turn off my video camera. At the conclusion of the Q&A, 15 minutes later, I was surrounded by hotel security and escorted out of the building. I had registered six weeks earlier as media, and received a confirming email. I was handed a press pass and told to fill it out myself at the registration desk Friday morning, after being told the computer system was down and my name could not be pulled up. But the conference organizers were having none of it, although by now Westin security no doubt realizes I was totally truthful and cooperative, even turning over my driver’s license for photocopying.

The story as to why AutismNewsBeat was expelled has changed over time.

The first was that I had snuck into the gathering without registering. When conference organizer Ed Arranga realized that I was indeed registered, the story changed to “you broke your agreement not to videotape any of the meetings.” There was, of course, no such agreement, and no evidence of such an agreement. I filmed openly for two days without incident, as were dozens of other parents, not to mention film crews from local television stations. So that couldn’t be it either.

So, now he has been denied entry to a conference for a reason which may not have been in effect when he registered.

It should be noted that after AutismOne, AutismNewsBeat did what many people have done before: he posted his videos to YouTube. Videos such as this one from an autism and the media session.

Perhaps AutismNewsBeat breaks the unwritten code: don’t expose those parts of the autism parent conventions that are best kept behind closed doors.

In praise of pediatricians

27 Feb

Caught in the crossfire of the autism/vaccine debate are the pediatricians. Often the discussion of vaccines and autism devolves into insinuating that pediatricians all know about vaccines causing autism, but they make most of their much money from vaccines.

It is a disgusting lie, and one so transparent.

Maybe I have the only good pediatrician in the free world. Who knows, it could be true. But that guy has stayed with us and our kid at the hospital until midnight, stayed on the phone with the nurses until 2am, and then showed up again a 8am to review the lab tests from the previous day. On another occasion, that guy woke up every two hours through the night to check in with nurses to monitor the lab results and adjust the treatment.

It is very clear when we are in the waiting room of his office that most people there are not there for their kids vaccines. How anyone can say that pediatricians make most of their money from vaccines is beyond me. It is just so plainly, clearly a lie.

Maybe I have the only good pediatrician in the world. I kinda doubt it.

Here’s to pediatricians. They are good people fighting the good fight.

Successful blogging by Steven Novella: the Desiree Jennings story

26 Feb

I stayed away from this story until now. It isn’t about autism at all, except that “Jenny McCarthy and Jim Carrey’s Autism Organization–Generation Rescue” decided to take the story on. Why a supposedly autism organization took on the story of an adult who was supposedly injured by a flu vaccine is not clear to this reader. But, this story shows the power of quality blogging to affect the discussion of a national topic.

Short version of the story: Desiree Jennings was given a seasonal flu vaccine. Sometime after that she developed problems in movement and speech. She attributed these problems to the vaccine, citing dystonia as the condition. This was questioned by some bloggers, including a neurologist, Dr. Steven Novella. As a neurologist, Dr. Novella is experienced in conditions such as dystonia. Ms. Jennings was treated by a well known name in the autism-alternative-medicine community, Dr. Rashid Buttar. The story was given national attention, including a segment on the U.S. TV show Inside Edition.

The whole story of the alleged vaccine injury is long and strange. The current status, it gets even stranger. Ms. Jennings appears to have made a full recovery, walking and driving a car. She talks better, with the addition of a rather strange accent. This was found when Inside Edition decided to do a followup on Ms. Jennings, apparently after reading Dr. Novella’s take on the story. From Dr. Novella’s recent blog post:

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night

One reason to bring this story up now is highlighted by Dr. Novella: the effect of science bloggers on a major news story:

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.

Dr. Novella did well in blogging this story, and Inside Edition did well to reconsider the story in light of the well-reasoned discussion of Dr. Novella.

Video of the recent Inside Edition segment is here:

ABC Radio interviews Brian Deer

25 Feb

RearVision, an ABC (Australia) radio news program, has an interview with Brian Deer titled The MMR vaccine scare. They have both audio and transcript available.

Even before Keri Phillips of ABC gets to Mr. Deer, she makes it clear that this isn’t going to be some fluff piece with faux-balance:

What Richard Horton didn’t know at the time, and neither did some of Wakefield’s 13 co-authors, was that some of the claims in the paper were false. It wasn’t bad science but rather outright fraud that ultimately led to the finding of misconduct against Andrew Wakefield. We’ll come to that in a moment, but first, what really set this story running was a press conference that Wakefield held at the Royal Free Hospital where he worked as a gastroenterologist.

My guess is that most readers here know the Wakefield story, so I won’t quote discussion of that. I will note the suggestion of moving away from anonymous peer review made by Trisha Greenhalgh. I, for one, am not in favor of that. I feel that referees will be less critical if they know that the authors will know the referees names.

Here is a closing statement by Brian Deer:

The thing that really concerns me is that there’ve been three kinds of victim in all of this. Firstly there’ve been children who’ve developed measles, and we’ve had children in the UK who’ve died of measles as a result of this. They’re the first victims. The second victims are parents who really agonised and gone through hell over whether they should vaccinate their child. But there’s a third kind of victim, which I think people often forget, and these are parents who blame themselves for their child having autism because they took that child to be vaccinated. And you can imagine the nightmare that these parents go through, and I’ve spoken with some of them, and I’ve had mothers just collapse sobbing saying, ‘Not a day goes past when I don’t blame myself for taking my child to be vaccinated. It’s my fault that he’s got autism, it’s my fault that his life will never be the same as that of other children.’ And I really feel for those parents, and I think we should remember these victims of this scare because these mothers have suffered.

Then there are those of us who have seen 12 years of “autism” advocacy groups who can’t concentrate on anything but vaccines and 12 years of useless research trying to support what Keri Phillips calls not “…bad science but outright fraud.”

Mother Jones and Boston Globe on the DOJ investigation of the Judge Rotenberg Center

25 Feb

The recently opened Department of Justice investigation on the Judge Rotenberg Center is being noticed by the media.

Mother Jones has a piece, ‘School of Shock’ Under Federal Investigation, which references their 2007 article, School of Shock.

From the recent piece in Mother Jones:

“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,” wrote Nancy Weiss of the National Leadership Consortium on Developmental Disabilities. “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.” Weiss reported that the DOJ couldn’t give her an estimate on how long their investigation would take.


US opens Canton school inquiry
Shock discipline at Rotenberg center prompts concern

From that article:

Renee Wohlenhaus, deputy chief of the Disability Rights Section of the Justice Department, said in a letter last week that her agency would look into whether the Rotenberg Center violates the nation’s laws on the fair treatment of the disabled. She did not respond to a request for an interview.

While Wohlenhaus’s letter referred to the inquiry as a routine investigation, federal officials and disability advocates say the investigation is significant because the agency does not choose to probe all complaints they receive.

Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities and the author of the letter on behalf of the disability groups, said her conversations with Justice Department officials lead her to believe that their probe will be far from “perfunctory.’’

I’ll point out that Kev can be counted amongst the many bloggers who have discussed the JRC in the past. His piece, Judge Rotenberg Center has more comments than I can recall for any piece on this blog.

Addenda: Add UPI with Feds probe school’s shock treatments

and the Boston Herald: Feds probe special needs school

And the Washington Post: Feds probe Mass. special needs school

And FoxNews Boston: Feds Probe Massachusetts Special Needs School That Used Shock Therapy

Education News fumbles on the Judge Rotenberg Center investigation story

25 Feb

I recently blogged about the U.S. Department of Justice opening an investigation on the Judge Rotenberg Center (JRC). Many of the children in the care of the JRC are subject to electric shocks as part of their program.

EducationNews.org picked up the blog piece I wrote and copied it to their own blog, with one major difference. They added an introductory paragraph taken directly from the JRC’s website.

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.

This changes the tone of the story dramatically and gives the reader the impression that I believe that the JRC is “very effective”.

Here is my comment on their blog:

As the person who wrote (most of) the piece above, I am both glad that Education News has decided to pick up this story and, quite frankly, angered at the way it has been handled.

I was not contacted before Education News ran this piece. Had they done so, I would have certainly given permission to run the piece–as it was written. The opening paragraph was added to my piece without permission. That paragraph is how the Judge Rotenberg Center portrays itself, being a direct quote from the home page of the JRC website:

” 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”

“JRC has provided very effective education and treatment” frames the piece in a completely different manner than I intended.

Again, I would gladly give permission for the use of this piece, in its original form.

For the record, I am the parent of a child with multiple disabilities. In my state, aversives are illegal. Under no circumstances would we allow the JRC to operate here.

I would encourage readers to read the letter and addendum and ask again can we “condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population”?

Education News has yet to respond either on their blog or via email.

I am glad that the news is getting out about the investigation (more on that soon). I’d be totally fine with Education News copying my post–if they did it accurately. I want this message out there, but don’t tag the “JRC is very effective” message to my name (or pseudonym, as it is).

(note, I corrected EducationNews.com to EducationNews.org, and added a link to their post)

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.

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