Archive | February, 2012

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

20 Feb

I received the notice below recently from the Autistic Self Advocacy Network (ASAN).

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

Please disregard the prior email sent out. Due to a small technical issue, the link to apply does not work. This issue has been resolved and we apologize to any inconvenience. Thank you.

– The Autistic Self Advocacy Network Communication Committee

The Autistic Self Advocacy Network with the help of the Mitsubishi Electric American Foundation is launching a new program for Autistic college students. In August 2012, ASAN will be inviting 13-18 Autistic students to participate in the Autism Campus Inclusion leadership training.

Drawing from the powerful Navigating College handbook and the Empowering Autistic Leaders booklet scheduled for release in early 2012, participants will learn valuable skills to effect systems change in their individual campuses and increase their own skills in self-advocacy and self-help.

This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training. Applicants must be currently enrolled in a higher education institute or college in the United States (including the District of Columbia), with at least one year left after completion of the leadership training.

If you have any more questions or comments, please direct them to Melody Latimer at mlatimer@autisticadvocacy.org

We look forward to hearing from you.

Thank you for your advocacy,

The Autistic Self Advocacy Network

APPLY NOW

With special thanks to…

Judge Rotenberg Center: Teen tied and shocked for hours; mom calls it “torture”

20 Feb

From a tip by Massachusetts Students United Against The Judge Rotenberg Center (A Facebook group) comes this story at Fox News in Boston: Teen tied and shocked for hours; mom calls it “torture”

(FOX 25 / MyFoxBoston.com) – Video of a disabled teen tied down and given painful electric shocks for seven hours should be made public, the youth’s mother said, so everyone can see what she describes as the “torture” her son went through at the controversial school, the only one in Massachusetts that uses pain to treat its clients.

“This is worse than a nightmare,” Cheryl McCollins said about her disabled son, Andre. “It is horrific. And poor Andre, who had to suffer through this, and not know why.”

The ordeal began after Andre hit a staff member. Inside a classroom, as a camera was recording, he was tied to a restraint board, face down, a helmet over his head.

He stayed like that for seven hours without a break, no food, no water, or trips to the bathroom. Each time he screamed or tensed up, he was shocked, 31 times in all. His mother called the next day to check on him.

“I said, ‘Andre.’ I said, ‘Hello.’ And so he said, ‘Help me,'” McCollins said.

“help me”

Andre spent 7 hours strapped to a board, shocked 31 times. As a result he ended up hospitalized. The mother wants the video of the incident made public. JRC wants to keep the video sealed.

The full story is here and Here is the video of the news report from Fox News:

http://www.myfoxboston.com/video/videoplayer.swf?dppversion=11212

Teen tied and shocked for hours; mom calls it “torture”: MyFoxBOSTON.com

Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011

17 Feb

Children with neurologic and neurodevelopmental conditions are at increased risk for severe outcomes from influenza, including death. Those aren’t my words. They are the first sentence in a new report by the CDC: Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011.

Individuals with developmental disabilities are at a higher risk of harm or death from infectious diseases. They are also often more difficult to diagnose due to many factors including difficulties with communication.

The residents included a high percentage of individuals with great challenges. For example, of those with severe infections, nine had “do not resuscitate” orders (the reasons for this is not given).

All 13 residents with severe influenza had severe to profound neurologic and neurodevelopmental disabilities, including physical limitations (e.g., scoliosis, hemiplegia or quadriplegia, or cerebral palsy) (Table 1), and nine had “do not resuscitate” orders.

The story from this Ohio facility is bad on many fronts. An outbreak of influenza swept through the facility. 130 residents total. 76 residents had acute onset of respiratory illness. 13 were severely ill. 10 were hospitalized, and seven died.

All of those severely ill had the influenza vaccine. However, during the investigation it was found that the refrigerator that stored the vaccines was 27 degrees F. If the same temperature was in effect while the vaccines were stored, the low temperature could have inactivated the vaccine.

In other words, these individuals were given vaccines but they could have been rendered useless by the storage conditions.

Here is the abstract:

Children with neurologic and neurodevelopmental conditions are at increased risk for severe outcomes from influenza, including death. In April 2011, the Ohio Department of Health and CDC investigated an influenza outbreak that began in February 2011 in a residential facility for 130 children and young adults with neurologic and neurodevelopmental conditions. This report summarizes the characteristics and clinical courses of 13 severely ill residents with suspected or confirmed influenza; 10 were hospitalized, and seven died. Diagnosis is challenging in this population, and clinicians should consider influenza in patients with neurologic and neurodevelopmental conditions who have respiratory illness or a decline in baseline medical status when influenza is circulating in the community. Prompt testing, early and aggressive antiviral treatment, and antiviral chemoprophylaxis are important for these patients. When influenza is suspected, antiviral treatment should be given as soon as possible after symptom onset, ideally within 48 hours. Treatment should not wait for laboratory confirmation of influenza. During outbreaks, antiviral chemoprophylaxis should be provided to all residents of institutional facilities (e.g., nursing homes and long-term- care facilities), regardless of vaccination status. Residential facilities for patients with neurologic and neurodevelopmental conditions are encouraged to vaccinate all eligible residents and staff members against influenza.

The story notes the relatively low efficacy of the influenza vaccine (about 60%). If the vaccines were compromised by low temperature storage, 60% efficacy could have saved 4 of the seven people. So called “vaccine safety” groups should be calling for more effective vaccines, not downplaying the need for vaccines using the 60% figure.

What are the take-away messages from this? For one, influenza *is* a serious disease. Especially to many in the disability community.

Eugene Hoskins Is His Name

16 Feb

Slate.com has a very interesting story up: Eugene Hoskins Is His Name, The long-forgotten story of a black autistic man in Oxford, Miss., who crossed paths with William Faulkner. The story describes a man from the early 20th century with calendar (and other) savant skills,

“Eugene Hoskins is his name. He lives at Oxford, Miss., a University place of about three thousand people. He is well known about town for his eccentricities.” Thus begins the 1920 account of a 24-year-old black man whose constellation of neuropsychological symptoms—that is to say, his “eccentricities”—are now immediately recognizable as those of an autistic savant. Remarking on his “uncanny knowledge of dates,” the case report relates how “a bystander said to him: ‘I was married on the 8th of June, 1901.’ Without a moment’s hesitation Eugene said: ‘Dat was a Satu’day.’ Given the month, day and year, he will give the day of the week. He never fails, never hesitates. Vary if you will by giving the year and month and asking what day of the month was the second Tuesday, or the fourth Friday—he answers just the same.”

The paper they reference is from 1920. Here is the abstract:

The case of a feeble-minded negro is described. He is chronologically 24 years and mentally between 8 and 9. He has a rather short auditory memory span failing on five digits. He has committed to memory a large array of facts about dates, places and locomotive engine numbers. Given a date—month, year, and day of month—he will give day of week. He cannot go back of 1901 nor forward beyond 1924. Between these limits he never fails. From Psych Bulletin 18:01:00034. (PsycINFO Database Record (c) 2010 APA, all rights reserved)

Not all savants are autsitic. Certainly, not all autistics are savants. But the story is interesting nonetheless.

Follow up on Redwood City special ed teacher story

16 Feb

Last week I wrote about a news story: Redwood City teacher accused of slapping, kicking special needs students. If you are reading this, I would urge you to read two posts by Shannon Des Roches Rosa. On BlogHer: Alleged Special Ed Abuse and the Court of Public Opinion and on Squidalicious: Fair Witness. Ms. Rosa knows the teacher in question quite well.

A Comparison of Urinary Mercury between Children with Autism Spectrum Disorders and Control Children

16 Feb

Researchers are still looking at the question of whether autism is caused by mercury intoxication. One of the measures used in the past is to check the mercury content in the urine of autistic and non autistic children. Claims have been made that autistic children are “poor excretors” of mercury. This is defined as “more mercury in the urine than other children” or “less mercury in the urine of other children”.

A group of researchers from the UK and US have tested a group of autistic children, special needs non autistic children, siblings and regular school children. What did they find? No difference.

Background

Urinary mercury concentrations are used in research exploring mercury exposure. Some theorists have proposed that autism is caused by mercury toxicity. We set out to test whether mercury concentrations in the urine of children with autism were significantly increased or decreased compared to controls or siblings.

Methods

Blinded cohort analyses were carried out on the urine of 56 children with autism spectrum disorders (ASD) compared to their siblings (n = 42) and a control sample of children without ASD in mainstream (n = 121) and special schools (n = 34).
Results

There were no statistically significant differences in creatinine levels, in uncorrected urinary mercury levels or in levels of mercury corrected for creatinine, whether or not the analysis is controlled for age, gender and amalgam fillings.

Conclusions

This study lends no support for the hypothesis of differences in urinary mercury excretion in children with autism compared to other groups. Some of the results, however, do suggest further research in the area may be warranted to replicate this in a larger group and with clear measurement of potential confounding factors.

There were outliers of high mercury content in the special needs children (both autistic and non autistic). Expect those promoting the autism/mercury connection to focus on those children and to build connections between the funding agencies and pharmaceutical companies.

Attorney for Prof. Walker-Smith: alleged link between MMR and autism utterly disproved

14 Feb

Prof. John Walker-Smith was a colleague of Andrew Wakefield, a co-author on the no-retracted 1998 Lancet paper and shared the same fate as Mr. Wakefield after the General Medical Council Hearings: he was struck off the medical register. Prof. Walker-Smith has appealed (Mr. Wakefield did not). A few news stories have come up about this appeal. In Doctor struck off over MMR controversy appeals against ruling, the Guardian notes:

Prof John Walker-Smith tells high court he was denied a fair hearing before he was struck off by the General Medical Council

Many are looking to this appeal for vindication of Mr. Wakefield and his theories on MMR being linked to and causal in autism. Prof. Walker-Smith’s attorney appears to have made a rather clear statement to the contrary:

Miller said it had been important that the disciplinary panel “separate out research from the clinical medicine – but that was a task that appeared to be beyond them”.

The judge asked Miller whether the alleged link between MMR and the vaccine “has now been utterly disproved” in the opinion of “respectable medical opinion”.

Miller said that was “exactly” the position.

edit to add:

I took the statement “The judge asked Miller whether the alleged link between MMR and the vaccine “has now been utterly disproved” ” to be a mistaken report by the Guardian because, as written, it does not make sense. My own interpretation was that the actual question was whether the MMR and *autism* was the point. However, I should have made that assumption very clear in the above piece and I apologize for that. I have written the paper as well as some other people who might be able to clarify the statement.

CBS Pulls Attkisson From CPAC Award Event

10 Feb

Sharyl Attkisson, CBS journalist best known here for her bias towards those promoting autism as a vaccine injury, was slated to accept an award Thursday from Accuracy In Media (AIM). This was discussed on Left Brain/Right Brain recently.

Media Matters is reporting CBS Pulls Attkisson From CPAC Award Event.

CBS still accepted the award, though:

CBS Correspondent Sharyl Attkisson did not appear at the Conservative Political Action Conference today to receive her journalism award from fringe group Accuracy In Media (AIM), despite previous reports that she would speak at the event. Instead, CBS Vice President and Washington Bureau Chief Christopher Isham accepted the award on her behalf.

As one commenter on MediaMatters wrote, this just looks like Ms. Attkisson had better things to do. It would have been good, in my opinion, for CBS to decline the award.

The Panic Virus: now in paperback

9 Feb

The Panic Virus came out just over a year ago. We discussed it on Left Brain/Right Brain (here and here). As one who has spent a great deal of time reading and writing about the autism/vaccine discussion, I found the book to be extremely well researched and very well written.

The author, Seth Mnookin, now teaches science writing at the Massachusetts Institute of Technology (MIT) and writes for the PLoS blogs.

Here is a blurb on the book:

WHO DECIDES WHICH FACTS ARE TRUE?

In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.

Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.

In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.

The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.

If you were waiting for paperback to save some money, here’s the Amazon.com link. Other booksellers will have it too.

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