Archive | July, 2010

The Arc Action alert – HELP PASS THE ABLE ACT IN THIS CONGRESS!

8 Jul

This is an action alert for citizens of the United States. The Arc is gathering support for a bill, the ABLE act, which would allow people to make tax deductible contributions to a savings account which could be used for them to use for “qualified expenses”. Here is the action alert:

HELP PASS THE ABLE ACT IN THIS CONGRESS!

Take Action!
Contact Your Representatives to Convene a Hearing and Vote on the ABLE Act

The Arc and UCP strongly endorse the Achieving a Better Life Experience Act (ABLE) of 2009 (S. 493/H.R. 1205).

Background

The ABLE Act will give individuals with disabilities and their families the ability to save for their child’s future just like every other American family, and help people with disabilities live full, productive lives in their communities. The ABLE Act will allow individuals with disabilities a tax deduction, up to $2,000 per year, for contributions to an “ABLE account.” The account could fund a variety of essential expenses including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation continues to have widespread, bipartisan support. However, even though the House bill now has 180 co-sponsors and the Senate bill has 21 cosponsors, the bills have not advanced since they were introduced more than a year ago.

The time to pass this bill is now – Please contact your Representatives today to encourage them to convene a hearing and vote on the ABLE Act! Once the House votes, the Senate should follow. If we don’t get the ABLE act passed by the end of the year, we will have to start all over again next year.

Status of the Bills

House bill (H.R. 1205)
2/26/2009 – Introduced and referred to the Committee on Ways and Means and Committee on Energy and Commerce

Senate bill (S. 493)
2/26/2009 – Introduced and referred to the Committee on Finance

Take Action

Please call your Representative’s home district office during the Independence Day recess (July 2-12). Click on the “Take Action” link and enter your zip code to get the home district office number.

What to say:

* May I please speak to the staff member who covers disability issues?
* I am calling to urge Representative ________________ to pass the Achieving a Better Life Experience Act (ABLE) of 2009 (HR 1205) this year.
* I would like to request that Representative _______________:
* ask Ways and Means Chairman Levin to convene a hearing on the bill
* encourage House leadership to schedule a vote on the bill this Congress.

In case you are wondering what a “qualified expense” would be, below is the text from the House bill on what constitutes a “qualified expense”

`(i) EDUCATION- Expenses for education, including tuition for preschool thru post-secondary education, books, supplies, and educational materials related to such education, tutors, and special education services.

`(ii) HOUSING- Expenses for housing, including rent, mortgage payments, home improvements and modifications, maintenance and repairs, real property taxes, and utility charges.

`(iii) TRANSPORTATION- Expenses for transportation, including the use of mass transit, the purchase or modification of vehicles, and moving expenses.

`(iv) EMPLOYMENT SUPPORT- Expenses related to obtaining and maintaining employment, including job-related training, assistive technology, and personal assistance supports.

`(v) HEALTH, PREVENTION, AND WELLNESS- Expenses for the health and wellness, including premiums for health insurance, medical, vision, and dental expenses, habilitation and rehabilitation services, durable medical equipment, therapy, respite care, long term services and supports, and nutritional management.

`(vi) LIFE NECESSITIES- Expenses for life necessities, including clothing, activities which are religious, cultural, or recreational, supplies and equipment for personal care, community-based supports, communication services and devices, adaptive equipment, assistive technology, personal assistance supports, financial management and administrative services, expenses for oversight, monitoring, or advocacy, funeral and burial expenses.

`(vii) OTHER APPROVED EXPENSES- Any other expenses which are approved by the Secretary under regulations and consistent with the purposes of this section.

`(viii) ASSISTIVE TECHNOLOGY AND PERSONAL SUPPORT SERVICES- Expenses for assistive technology and personal support with respect to any item described in clauses (i) through (vii).

Autism Science Foundation’s interviews with IMFAR researchers: David Mandell

8 Jul

INSAR, the International Society for Autism Research hosts the the largest autism research conference: IMFAR, the International Meeting for Autism Research. 1700 people attended, largely from the research community. The program book has nearly 50 pages of researchers. It’s big.

This year’s conference was held in Philadelphia in the United States. The people heading the organization of this year’s conference were Program Chairs David Mandell and Manny DiCicco-Bloom and Meeting Chairs, Jennifer Pinto-Martin and Susan Levy.

The Autism Science Foundation has a strong presence at the conference. They were sponsors of the conference and they held luncheons for the graduates students which the ASF is supporting. In addition, the ASF sponsored a number of stakeholders to attend the conference. One of these stakeholders, D’oC, blogged about the conference here on LeftBrainRightBrain.

The Autism Science Foundation took the opportunity to interview a number of the researchers at IMFAR. Those interviews are now up on YouTube. I thought I would blog some of these interviews. Given that Prof. Mandell was one of the Program Chairs and gave an overview of the conference, I decided to start with his interview:

Prof. Mandell discusses the new studies that are coming out. Amongst the subjects: how there is a shift to groups crossing regular boundaries of genetics, biology and behavior are related; how treatment research is moving beyond the randomized control trial methods targeting all autistic types to targeting subgroups; and how there is much research on young autistics in school settings. Groups are moving beyond the early genetics studies which merely identify “hot spots” in the genes to trying understand what the genes do. He gives the example where groups of autistics with the same genetic differences give similar results in how their brains work, as detected through functional MRI.

Chicago Tribune racks up another award for series exposing autism quackery

7 Jul

The Chicago Tribune has earned honorable mention from the The Casey Medals for Meritorious Journalism for its year-long series on unproven and potentially harmful “treatments” for autism.

Reporters Trine Tsouderos, Patricia Callahan, and George Papajohn “courageously challenge doctors who peddle alternative autism remedies to parents desperate for help,” said Casey’s press release “Through inquisitive, fact-based reporting, the series exposes the flimsy science behind the anecdotal testimonials that underpin uncontrolled experimentation on children.”

The prestigious Casey Medals for Meritorious Journalism have recognized exeptional coverage of disadvantaged children, youth and families since 1994. The Tribune previously won recognition from the Association of Health Care Journalism for the same series.

Congratulations to the Chicago Tribune for their unbiased and well-informed coverage.

Lorene Amet of Autism Treatment Trust discusses her beliefs about autism

6 Jul

Lorene Amet, Principal Scientist at Autism Treatment Trust and I got into a debate at Autism Gadfly blog during which I asked her to discuss her view on vaccination. She expanded these views into a blogpost which she entitled ‘Autism and the Environment’. I was puzzled at first as to why she would name a debate about vaccines such a misleading title but then, look again at the ATT page in which Lorene Amet is listed at ATT. Her heading is described as Dr Lorene Amet and whilst she is no doubt a doctor, it is maybe a little misleading that her biography does not make clear that she isn’t a medical doctor.

Amet’s post is awash with Truthiness. Take this passage for example:

First point I would like to make is that Autism Spectrum Disorders (ASD), regressive autism, Pervasive Developmental Disorder-Not otherwise Specified (PDD-NOS) are conditions that are on the increase starting from about 1988. I believe this is a real increase that is not just related to a greater awareness of the conditions and change of diagnostic criteria. However, there is no clear picture as far as Asperger Syndrome (AS) is concerned. There is no data on prevalence of AS alone, and almost certainly this condition was essentially unnoticed, considered as some sort of quirkiness, even in very recent past. Equally, many adults with AS have remained undiagnosed to this day. It is therefore possible that AS is not on the increase, in any case, the data is not there yet to answer this question accurately. However for the rest of the ASD kids, the increase seems real. I can argue this point using a range of additional arguments, but let’s not get too distracted, even if this is an essential point.

Feels true doesn’t it? Except that ‘on the increase’ is a pretty ambiguous term. ‘On the increase’ suggests that there was a clear, unambiguous starting point where we knew exactly what the prevalence of autism was. The truth is, we don’t. There is no agreement from 1988 on an international level about the prevalence of autism. Even on a county by county level in the UK or State by State level in the US, data diverges wildly if it exists at all. If anyone disagrees with this, I’d love to see concrete figures from 1988. Because only from a concrete starting point can we make concrete estimates about ‘increases’.

Amet also falls into the trap of assumption. Assumption that the only two non-environmental aspects of an ‘increase’ can be a) greater awareness and b) change of criteria. Besides these two, there are issues such as greater attainment (more centres and more experts capable of diagnosing autism), diagnostic substitution and change in public policy towards ASD (amongst others).

So is there an autism epidemic? The absolute truth is that nobody knows. To claim or even infer otherwise is misleading. As Richard Roy Grinker says in Unstrange Minds:

…the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.

Amet then goes on to discuss things other than autism – a lengthy part of her post which, as it doesn’t touch on autism, isn’t important to me or _this_ post.

She then says:

The fourth point I would like to make is that Autism is associated in about 60% of the cases with health issues, digestive system, immune system and commonly presents with a regressive feature (again about 60% of cases). Some preliminary reports can be found discussed in the BMJ. This is important because we are starting to conceive that some people might be more vulnerable than others if they are placed in situations of overload. Overload can be understood quite broadly. Overload in terms of insult to the immune system, overload in terms of specific toxins (e.g. organophosphates), or overload in terms of stress, etc.

This is a very contentious argument which is again more truthiness than true. The 60% figure is unsourced and _seems_ to be numbers gained from a very biased source – ATT caseload. I would warn Amet against the dangers of cherry picking data that seems to support your ideas. Maybe it would be better to find support from the independent science on this issue.

Although this is a post that is supposed to be about vaccines and Amet’s own views on the matter, the only ‘hard’ unequivocal statement on the matter comes here:

In short, yes, in my opinion vaccination is implicated in some cases of autism, my guess estimate is in about 20% of cases of today’s autism, possibly more, but not less. There are other issues that are very important to consider and vaccination almost certainly affects a person in combination with others environmental factors and together with a genetic susceptibility.

No data is presented to support Amet’s guess, or even to support Amets guesstimate of 20%. This is the crux of the matter to me and yet I see nothing of any substance in Amet’s long post to support this belief.

ABC Nightline video on the Judge Rotenberg Center

1 Jul

“No detrimental effects whatsoever”. That’s what Matthew Isreal has to say about the shocks used as aversives. I somehow remain unconvinced. The Judge Rotenberg Center has now come under the scrutiny of the United Nations Special Rapporteur on Torture, who has called on the Obama administration to investigate the center.

Obviously, major electrical shocks can be quite harmful. The most serious physical damage occurs when current passes through organs, like the heart. The JRC device appears to be designed to keep the shocks local. At about 50 seconds into the video they apply an electric shock from one of the JRC’s devices to the Nightline commentator. The shock is applied to her arm, but watch her leg twitch. The effects aren’t exactly localized, are they? That is troublesome to me because we don’t know what is going on internally from the shock.

As to emotional long term side effects, who knows? Seriously, can Dr. Isreal really make the claim of “no detrimental effects whatsoever”? Based on what evidence?

From a previous press release criticizing the JRC

The Judge Rotenberg Center (JRC) in Canton is believed to be the only facility in the country that uses often painful electric shock therapy on disabled children in order to alter behavior. In 2007, the State launched a criminal investigation into an incident where a prank phone call to the school led to the repeated electric shocking of two individuals in the dead of night. One of them, a child, was shocked 29 times, the other was shocked 77 times – sometimes while restrained, causing burns so severe they needed to be treated at a hospital. That investigation is apparently ongoing. In October 2009, the JRC made headlines again when Director Matthew Israel was fined by the Massachusetts Division of Professional Licensure for allowing 14 unlicensed employees at the school to use the title “psychologist.”

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

UN Calls Shock Treatment at Judge Rotenberg Center ‘Torture’

1 Jul

The Judge Rotenberg Center (JRC) is a school for special needs children. The JRC is known for the fact that they use aversives–in the form of electric shocks–as part of their program. Not all students get the shocks, but it is a part of the program there.

The ABC program Nightline will air an episode on JRC tonight. Their website already has a story, UN Calls Shock Treatment at Mass. School ‘Torture’.

Here is a quote from that story:

“To be frank, I was shocked when I was reading the report,” said Manfred Nowak, the UN’s Special Rapporteur on Torture. “What I did, on the 11th of May, was to send an urgent appeal to the U.S. government asking them to investigate.”

The United States Department of Justice already opened an investigation on the JRC earlier this year after a consortium of disability organizations sent a complaint letter.

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