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Another attempt at legislating an autism-vaccine study

4 Aug

Last week someone forwarded to me an email from the SafeMinds lobbyist. SafeMinds promotes the idea that vaccines, and specifically thimerosal which was formerly in vaccines, caused the rise in autism diagnoses observed in the past decades. The email asked for support for proposed bill in the U.S. House of Representatives, HR 1757.

I am once again saddened that such a vocal minority of the autism communities are focusing their attention on vaccines. Consider that right now there are three bills before congress that come up on a search for “autism”:

Autism Understanding and Training in School Methodologies for Educators Act of 2013
(which is stalled in committee)

H.R. 1757, Vaccine Safety Study Act
(the one that prompted this article, also stalled in committee)

and a Bill introduced just this week (so recent that the text of the bill isn’t online yet)

To establish a health and education grant program related to autism spectrum disorders, and for other purposes.

Three proposed bills on autism, two attempting to improve the lives of autistics and one on vaccines. Surely as a Country, we can do better than this?

Are we hearing a call for support for the other bills from these parent advocate groups promoting autism as vaccine injury? Not that I’ve seen. Are the sponsors of the vaccine bill (Members of Congress Posey and Maloney) cosponsoring the other two bills? No.

As noted, the text of the last bill (health and education grant program) is not up, but the sponsors are Representatives Christopher Smith and Michael Doyle. These are people who were instrumental in getting the Combatting Autism Reauthorization Act passed. These are people with autism on their radar.

By contrast, the main sponsor of the vaccine related bill is not a member of the Congressional Autism Caucus. The cosponsor, Representative Maloney is.

The point I’m trying to make here is this: there are two autism related bills which are not strongly supported by the vaccine-focused parent groups, nor the Members of Congress who are sponsoring the vaccine bill.

Back to the vaccine bill. Bills like this are not new, the bill is similar to ones that have been proposed before:

Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009

All were proposed by Member of Congress Maloney. In 2006, the bill had 15 cosponsors. In 2007, 21 cosponsors. In 2009, 9 cosponsors. The present proposed bill has one sponsor (Representative Posey) and 1 cosponsor (Representative Maloney). Support for this bill, while never strong, peaked 6 years ago.

To put this in historical perspective, Robert Kennedy Jr.’s “Deadly Immunity” article (now retracted by Salon.com but still on Rolling Stone) and David Kirby’s “Evidence of Harm” were published in 2005. So it isn’t surprising that the bill enjoyed some support in the early iterations.

Most proposed bills do not get out of committee. The previous incarnations of this bill did not. Fewer bills become law. For example, in her tenure in the House, Member of Congress Maloney appears to have one bill make it to a public law. That bill was a reauthorization of an existing law (changing “dollars and dates”) Some motions by Representative Maloney, such as honoring ex President Clinton have been agreed to by the House.

I already mentioned that Congressman Posey is not cosponsoring the other two autism bills presently before the House. Nor is he a member of the Congressional Autism Caucus. In fact, Representative Posey, the sponsor of the current bill, was not a cosponsor of the 2009 bill, the year he was first elected to Congress. I don’t see him as a cosponsor of CARA. For whatever it is worth, he has received donations from a wealthy Floridian who has worked in the past to get autism vaccine research legislated (Crist backer Gary Kompothecras bullies Florida health officials)

So, with all due respect to Congressman Posey (and a request that he consider a broader support for autism related issues) I’m not seeing H.R. 1757 as an autism focused bill, but a vaccine focused bill. The name says it: H.R. 1757: Vaccine Safety Study Act.

How about the text of the bill? It was rebranded as the “Vaccine Safety Study Act” rather than the previous “Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009”. It starts with some simple findings:

(1) Securing the health of the Nation’s children is our most important concern as parents and stewards of the Nation’s future.
(2) The Nation’s vaccine program has greatly reduced human suffering from infectious disease by preventing and reducing the outbreak of vaccine-preventable diseases.

I wonder how few people currently calling for support of H.R. 1757 would support a House Resolution making only point 2. I suspect the number is small. Vanishingly small. That before we even add point 4 “(4) Childhood immunizations are an important tool in protecting children from infectious disease.”

Then we get to the proposed findings which are more to the core of the views of those promoting this bill:

(5) The number of immunizations administered to infants, pregnant women, children, teenagers, and adults has grown dramatically over recent years.

(6) The incidence of chronic, unexplained diseases such as autism, learning disabilities, and other neurological disorders appears to have increased dramatically in recent years.

You get both the “scary correlation” and the rather interesting use of the word “dramatically”. We saw a “greatly” reduced human suffering in point 2, not a “dramatically reduced” human suffering.

Here’s another interesting proposed “finding”

(9) Childhood immunizations are the only health interventions that are required by States of all citizens in order to participate in civic society.

Really? Vaccines are “required” for children and then up to the point that you can say “I don’t want to do that to my kid” in 19 states (philosophical exemption) or “it’s against my religion” in 48 states (religious exemption) or “my kid has a doctor’s note saying he/she can’t be vaccinated” (medical exemption) in all states. How much income tax would be collected if the “required” taxes had the same out as vaccines? Also, “childhood immunizations” are required by “all citizens in order to participate in civic society”? Really? So, since I didn’t get, for example, a chickenpox vaccine, the MMR (or, my guess, M, M or R vaccines), or, really most of the childhood vaccines, I am somehow barred from participating in civic society?

Let’s limit this just to kids. What is meant by “civic society”? Unvaccinated children are allowed in schools, they are allowed in public places, they can’t vote (neither can vaccinated kids…they are kids after all). That’s what exemptions mean. What restrictions are there on unvaccinated children that Representative Posey is talking about here?

Let’s go on:

(10) Public confidence in the management of public health can only be maintained if these State government-mandated, mass vaccination programs–

(A) are tested rigorously and in their entirety against all reasonable safety concerns; and

(B) are verified in their entirety to produce superior health outcomes.

Makes us accept a few unsupported assertions. Let me approach it like this: vaccine uptake has remained, on average, high for decades. This without the study proposed in this bill. Evidently, vaccines are tested rigorously and in their entirety against all reasonable safety concerns and are verified in their entirety to produce superior health outcomes. At least as far as the US public is concerned.

Then we get:

“(11) There are numerous United States populations in which a practice of no vaccination is followed and which therefore provide a natural comparison group for comparing total health outcomes.”

If you think one of the “numerous” populations considered are the Amish, you’d be correct. They are mentioned later in the bill. They’ve been mentioned in previous versions of the bill. Even though the Amish do, indeed, vaccinate. There was some very poor journalism promoting the idea that the Amish don’t vaccinate (and that their are no autistic Amish, another incorrect statement).

The bill then goes on the instruct the Secretary of Health and Human Services to initiate a study of health outcomes in vaccinated and unvaccinated populations. The bill proposes dictating how the study will be undertaken. For example, here are the proposed qualifications for the investigator (why only one?):

(c) Qualifications- With respect to each investigator carrying out the study under this section, the Secretary shall ensure that the investigator–

(1) is objective;

(2) is qualified to carry out such study, as evidenced by training experiences and demonstrated skill;

(3) is not currently employed by any Federal, State, or local public health agency;

(4) is not currently a member of a board, committee, or other entity responsible for formulating immunization policy on behalf of any Federal, State, or local public health agency or any component thereof;

(5) has no history of a strong position on the thimerosal or vaccine safety controversy; and

(6) is not currently an employee of, or otherwise directly or indirectly receiving funds from, a pharmaceutical company or the Centers for Disease Control.

OK. From now on when the vaccine/autism groups promote a study supposedly linking autism with vaccines, I’ll ask if said investigator “has no history of a strong position on the thimerosal or vaccine safety controversy”. Many such studies are by individuals or teams with clearly strong views favorable to the autism/vaccine hypothesis. I note that people funded by or members of vaccine/autism groups are not barred from the proposed study. No, just people receiving funds from pharmaceutical companies or the CDC, or public health employees, or people who are on any committee which is interested in vaccines…

Then there’s the “Amish” clause:

(d) Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish, members of clinical practices (such as the Homefirst practice in Chicago) who choose alternative medical practices, practitioners of anthroposophic lifestyles, and others who have chosen not to be vaccinated.

Why would the named groups be any more valuable to researchers than “…others who have chosen not to be vaccinated”?

It’s a useless clause. It’s worse than useless. One would want to study populations as similar in all respects save vaccination as possible. In their press release SafeMinds stated, ” Every 7th grader knows you cannot do a proper experiment without a rigorous control group that can be compared with the exposed group.” Choosing a group which is specifically different from the study group in areas other than the variable of interest would be, by definition, non rigorous. I’ll leave it to the reader whether every 7th grader would understand that, as some well educated adults do not.

The bill ends with:

(f) Transparency- To facilitate further research by the Secretary or others, the Secretary shall ensure the preservation of all data, including all data sets, collected or used for purposes of the study under this section.

This is essentially the “We want an objective researcher to perform this study but if his/her results go against what we hope for, we want the chance for our own people to work with the same dataset” clause.

One site I saw put the chances of this bill becoming law at 1%. In the email that was forwarded to me one thing I don’t recall being stressed was this. “http://thomas.loc.gov/cgi-bin/bdquery/z?d113:h.r.01757:

Sponsor: Rep Posey, Bill [FL-8] (introduced 4/25/2013) Cosponsors (1)
Latest Major Action: 4/26/2013 Referred to House subcommittee. Status: Referred to the Subcommittee on Health.

Yes. The bill was introduced 3 months ago (4/25/2013) and was referred to a subcommittee (4/26) and has not moved, nor collected additional sponsors in that time. Sure, it’s summer and things move slowly in Washington in the summer. But this has the markings of another failed bill. A waste of efforts. Efforts that could go towards supporting some other legislation, or creating some new bill which has the chance to impact the well being of today’s autistic population. But we aren’t seeing a call to action for that. Nor, I suspect, will we.

edit to add:

What’s missing from HR 1757? In my view, any mention of appropriations. The bill does not mention setting aside any money for this study. Sure, HHS probably can move money around and fund another study. But it makes me wonder whether anyone is serious about this getting out of committee.

The bill is essentially the same as the previous incarnations. The “transparancy” clause is new. Also new is this:

(b) Rule of Construction- Nothing in this Act shall be construed to authorize the conduct or support of any study in which an individual or population is encouraged or incentivized to remain unvaccinated.

Yes, they are making it clear that they are not asking for a prospective double-blind study where one group would be intentionally unvaccinated. I’d love to know how that new clause was inserted. It’s probably the simple reality that such a study is unethical and would make this bill dead on arrival.

—
By Matt Carey

Financial documents for the Canary Party

12 Jul

There seems to be a large number of groups promoting the idea that vaccines cause autism. A large number of groups who share the same principle members. SafeMinds, the National Autism Association, Generation Rescue and others come to mind. A few years ago, another group was formed, this time as a political party: the Canary Party.

The Canary Party is not a charity, so they do not file form 990’s with the IRS. They appear to not be a national political party a they are not listed with the FEC. Recently, a commenter at the Respecful Insolence blog (Narad)found that the Canary Party is organized in Minnesota and files their financial reports there.

Forms have been filed for 2011 and 2012.

The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012. The major contributors are (assuming I did my sums correctly):

2011:

Jennifer Larson (Canary Party President), $40,665
Mark Blaxill (Canary Party Chairman), $15,000

2012:

Barry Segal (founder of Focus Autism): $30,000
Mark Blaxill (Canary Party Chairman), $10,000

The largest expense is for a “media consultant”, Jennifer Taylor (apparently Ginger Taylor, a blogger).

$36,600 in 2011
$9,000 in 2012

Plus many expenses for advertising and other promotional expenses.

In 2012, travel became a larger expense. For example:

On January 26, 2012, $3,399.79 for expenses with Hyatt/Four-Seasons/Hyatt
(February 2nd 2012 was the date of the “Health Freedom Expo”, where other expenses were incurred)

On February 2, 2012, $1,841.43 for expenses with Hyatt/Ritz

It’s difficult from this to tell how many people were lodged at these hotels for these dates. One expense seems more clear: On 6/15/2012, expenses attributed to Canary Party president Jennifer Larson amounted to $1,541.42 for another Health Freedom Expo hotel stay, this time at the Hilton. Health Freedom Expos are typically 3 day events.

On 10/22/2012 the party hosted a convention, with apparently a tab of $11,382.02 for Hotel/Beverages/Hotel Fees.

Nothing particularly interesting. Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

—
Matt Carey

IACC meeting next Tuesday (July 9)

7 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will meet next week (Tuesday, July 9).

The agenda looks quite interesting. Dr. James Perrin, president of the American Academy of Pediatrics (AAP) and a clinical director of the Autism Speaks Autism Treatment Network (ATN) will speak. Dr. Tim Buie will speak on GI issues and autism. And there will be discussions of comorbid conditions, wandering and more.

The meeting will be videocast and be available via conference call (Dial: 800-369-3170 , Access code: 9936478)

9:00 a.m. Welcome, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
9:05 Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:20 Commentary on Parent-Physician Efforts to Address Wandering

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:30 Panel on Comorbid Conditions in People with Autism
9:30-9:45 Comorbidities Among Patients Served by the AutismTreatment Network

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:45-10:00 Gastrointestinal Disorders in Patients with Autism
Timothy Buie, M.D.
Associate, Department of Pediatrics
Massachusetts General Hospital for Children
10:00-10:15 Catatonia in Autism Spectrum Disorders

Lee Wachtel, M.D.
Medical Director, Neurobehavioral Unit
Kennedy Krieger Institute
10:15-10:30 Immune and Metabolic Conditions in Patients with Autism Population

Richard Frye, M.D., Ph.D.
Director of Autism Research
Arkansas Children’s Hospital Research Institute
Associate Professor of Pediatrics
University of Arkansas for Medical Sciences
College of Medicine
10:30-11:00 Committee and Panel Discussion
11:00 Meeting Report: Environmental Epigenetics Symposium
Held: March 22-23, 2013, UC Davis MIND Institute, Sacramento, California
Sponsors: Autism Speaks, Escher Fund for Autism and UC Davis MIND Institute

Jill Escher
Escher Fund for Autism

Alycia Halladay, Ph.D.
Senior Director, Environmental and Clinical Sciences
Autism Speaks
11:30 Rethinking Nonverbal Autism

Portia Iversen
Parent and Advocate
12:15 p.m. Lunch
1:15 Oral Public Comments Session
1:50 IACC Discussion of Public Comments
2:15 Break
2:30 Panel on Wandering
2:30-2:40 Wandering and Autism: What We Know, What We Need

Wendy Fournier
President and Founding Board Member
National Autism Association
2:40-2:50 IACC Activities to Address Wandering

Alison Tepper Singer, M.B.A.
President
Autism Science Foundation
Member, IACC
2:50-3:10 The Amber Alert Program

Robert Lowery
Executive Director, Missing Children Division
National Center for Missing and Exploited Children
Jeff Slowikowski
Associate Administrator, Office of Juvenile Justice and Delinquency Prevention
U.S. Department of Justice
3:10-3:30 Committee and Panel Discussion
3:30 Tips for Early Care and Education Providers

Shantel Meek, M.S.
Policy Advisor, Early Childhood Development
Administration for Children and Families
3:40 Science Update

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC
4:00 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

4:00-4:15 DSM-5 Planning Group Update

Geraldine Dawson Ph.D.
Professor of Psychiatry and Behavioral Sciences, Duke University
Chair, IACC DSM-5 Planning Group
4:15-5:00 OARC and IACC Business Update and Discussion
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
5:00-5:30 Round Robin and Open Committee Discussion
5:30 Adjournment

—
By Matt Carey

note: I serve as a public member to the IACC but all comments and opinions expressed here and elsewhere are my own.

IACC meeting Agenda for 9 April, 2013

9 Apr

Tomorrow is a meeting of the U.S. Interagency Autism Coordinating Committee. Full information is on her IACC website. This includes the agenda.

9:00 AM Welcome and Roll Call    
Thomas Insel, M.D.   
Director, National Institute of Mental Health (NIMH) and Chair, IACC   
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH and Executive Secretary, IACC   

9:05  Update from Administration for Children and Families   
Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison for Early  Childhood Development Administration for Children and Families (ACF)   

9:15 Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012     
Stephen Blumberg, Ph.D. 
Acting Associate Director for Science Division of Health Interview Statistics National Center for Health Statistics   Centers for Disease Control and Prevention (CDC)     
Michael Kogan, Ph.D 
Director, Office of Epidemiology and Research   Health Resources and Services Administration (HRSA)

9:45  Project SEARCH at the National Institutes of Health (NIH)   
Maureen Gormley, M.P.H., M.A., R.N.  
Chief Operating Officer, NIH Clinical Center 

10:15  Break 

10:30  Panel on Minimally Verbal Children with Autism    

10:30  NIH Autism Centers of Excellence Update 

Alice Kau, Ph.D.
Program Director, Autism Spectrum Disorders Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) 

10:40  NIH Workshop on Nonverbal School-Aged Children with Autism 

Connie Kasari, Ph.D. 
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

10:55 Communication Growth in Minimally Verbal Children with Autism 
Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles  

11:20 Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

11:45 Q&A with Committee 

12:00  Autism NOW Website 
Katherine Cargill-Willis
Program Specialist Administration on Intellectual and Developmental Disabilities (AIDD) Administration for Community Living (ACL)   

Amy Goodman, Kevin Wenzel, and Karen Wolf-Branigin  
The Arc

12:20 PM Lunch 

1:00  Oral Public Comments Session 

1:30  IACC Member Discussion of Public Comments  

2:00   IACC Business     

2:00 Science Update       
Thomas Insel, M.D.    
Director, National Institute of Mental Health (NIMH) and Chair, IACC     

2:10 Introductory Comments and OARC/IACC Update 
Thomas Insel, M.D.    
Director, NIMH and Chair, IACC    
Susan Daniels, Ph.D.   
Acting Director, Office of Autism Research Coordination, NIMH and  Executive Secretary, IACC 

2:25 Update from Subcommittee for Basic and Translational Research  

Question 1 Planning Group 
DSM-5 Planning Group   

2:45 Update from Subcommittee for Services Research and Policy 

3:00 Break 

3:15 Committee Discussion     

5:20  Wrap-Up 

5:30  Adjournment

I am extremely pleased to see this focus on minimally verbal autistics in this meeting. This is a focus area I and others have asked for.

—
By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism

8 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) sent a letter recently to Kathleen Sebelius, the Secretary of Health and Human Services calling for public and private health insurance coverage for behavioral interventions for autistic children. The letter and the press release are below:

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism (PDF – 79 KB)

Today the Interagency Autism Coordinating Committee (IACC) submitted a letter to the Secretary of Health and Human Services, Kathleen Sebelius, recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder (ASD). The Committee developed the recommendations following discussions in early 2013 concerning the Affordable Care Act (ACA). While the IACC heard about the gains made toward meeting the needs of people with ASD through the first steps of the implementation of the Act, concerns were also voiced by the community about remaining gaps, including the lack of access to insurance coverage for early behavioral interventions.

As a part of the implementation of the ACA, States are in the process of defining “essential health benefits” (EHB) that will be covered by private insurers. The IACC was particularly concerned about the benefit for “mental health and substance use disorder services, including behavioral health treatment.” Under this benefit, the Committee considered it to be critically important that the benchmark plans in all States provide the robust and consistent coverage for behavioral therapy that has been shown to be effective for children with ASD.

Currently, only approximately half of States have decided to offer private insurance plans that provide autism-specific behavioral interventions, while others are still in the process of making decisions. Even less is known about what type of coverage for early behavioral interventions may be available through Medicaid, a publicly-funded insurance program that is the single largest funder of medical care for children with ASD.

In light of increasing evidence for the effectiveness of early interventions, including a recent study funded by the Health Resources and Services Administration (HRSA)1 and a Cochrane analysis,2 the IACC drafted a letter to Secretary Sebelius recommending support for coverage of and broad access to early behavioral interventions for children diagnosed with ASD, including children covered under both private and publicly-funded (Medicaid) health plans. The IACC also recommended a Federal minimum standard of autism coverage through the essential health benefits for all health plans offered in the individual and small group markets and that minimum coverage include early intervention for children with ASD at a level of intensity indicated by the evidence.

The IACC considers access to early behavioral interventions for those with autism to be a critically important issue and hopes that this letter will provide helpful information to Secretary Sebelius as well as to the larger community as they consider the best ways to address the needs of all people with disabilities. The Committee believes that broadening access to evidence-based early behavioral interventions has the potential to improve outcomes and the quality of life for people with autism and their families.

References
1 Maglione MA, Gans D, Das L, Timbie J, Kasari C; Technical Expert Panel; HRSA Autism Intervention Research – Behavioral (AIR-B) Network. Nonmedical interventions for children with ASD: recommended guidelines and further research needs. Pediatrics. 2012 Nov;130 Suppl 2:S169-78. [PMID: 23118248]

2 Reichow B, Barton EE, Boyd BA, Hume K. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2012 Oct 17. [PMID: 23076956]

***

The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

—
By Matt Carey

note: I serve as a public representative to the IACC but all comments here and elsewhere are my own.

United Nations statements on Autism Awareness Day

4 Apr

The United Nations released two statments on April 2nd, Autism Awareness day. Those statements, from the U.N. Secretary General and the U.N. as a whole are below.

Secretary-General, in Message, Says Vital to Work Hand-in-Hand with Persons with Autism to Help Cultivate Their Strengths, Address Their Challenges

Following is UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day, 2 April:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide.

The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services. The Executive Board of the World Health Assembly will also take up the subject of autism spectrum disorders at its forthcoming session in May.

This international attention is essential to address stigma, lack of awareness and inadequate support structures. Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.

The General Assembly will hold a high-level meeting on 23 September to address the conditions of more than 1 billion persons with disabilities, including those with autism spectrum disorders. I hope leaders will seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole.

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

Films, Panel Discussions, Live Performances among Events to Mark Observance of World Autism Awareness Day at Headquarters, 2 April

A growing number of countries are heralding a new call for involvement in addressing autism and other developmental disorders that affect millions of individuals and their families and societies worldwide as the United Nations and communities around the globe mark World Autism Awareness Day on 2 April with commemorative events including film screenings, panel discussions and live performances.

“This international attention is essential to address stigma, lack of awareness and inadequate support structures,” said United Nations Secretary-General Ban Ki-moon in a message to mark the Day. “Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.” (See Press Release SG/SM/14890-OBV/1195 of 20 March.)

In December 2007, the United Nations General Assembly unanimously adopted resolution A/RES/62/139, declaring 2 April World Autism Awareness Day to highlight the need to help improve the lives of children and adults who suffer from the condition, so they can lead full and meaningful lives. The rate of autism — a lifelong developmental disability that manifests itself during the first three years of life — is high in all regions of the world, and it has a tremendous impact on children, their families, communities and societies. The number of children and adults with autistic conditions continues to rise across every nation and social group.

“Let us remind ourselves that together — whether we represent Governments, civil society, the private sector or the United Nations itself — we can make a significant difference in our collective goal to create a more caring and inclusive world for people with autism,” said Peter Launsky-Tieffenthal, Under-Secretary-General for Communications and Public Information.

Children and adults with autism face major barriers associated with stigma and adverse discrimination, lack of access to support, discrimination, abuse and isolation, all of which violate their fundamental human rights, according to a General Assembly resolution (document A/RES/67/82) sponsored by Bangladesh and adopted in December 2012. Giving young children the early and correct treatment is crucial for improving their prognosis and giving them the chance to maximize their potential, according to the text.

Those issues will be explored during two panel discussions, co-organized by the United Nations Department of Public Information and the Permanent Mission of the Philippines, to be held at Headquarters on 2 April from 1:15 p.m. to 6 p.m. in Conference Room 2 of the North Lawn Building. Panellists addressing their respective themes, “Finding the ability in the disability of autism” and “Successful transition to adulthood”, will be Stephen Shore, Professor of Special Education at Adelphi University; Elaine Hall, founder of The Miracle Project, a groundbreaking theatre arts programme for autistic individuals profiled in the award-winning HBO documentary AUTISM: The Musical; Neal Katz, a teenager with autism who was featured in that film; Fazli Azeem from Pakistan, a graphic design Fulbright Scholar in Boston who is on the autism spectrum; and Idil Abdull from Somalia, who has a child with autism.

That segment of the event will feature musical performances by Talina and The Miracle Project. It will include performers with autism and remarks by Mr. Launsky-Tieffenthal, who will also open a book-signing event at the United Nations Bookstore from 11:30 a.m. to 12:30 p.m. with Stephen Shore, author of Beyond the Wall.

While public awareness remains low, global awareness of autism is growing. The new General Assembly resolution demonstrates a commitment to helping affected individuals and families, and encouraging Member States and others to strengthen research and expand delivery of health, education, employment and other essential services.

A related panel discussion titled “Addressing the socioeconomic needs of individuals, families, and societies affected by autism spectrum disorders and other developmental disorders” will be held on the new resolution’s implementation. It is co-organized by the Permanent Missions of Bangladesh, Bahrain, India, Qatar, Saudi Arabia and the United States, in collaboration with the Department of Public Information and the Department of Economic and Social Affairs. It will take place from 10 a.m. to 1 p.m. in Conference Room 2 of the North Lawn Building. On 4 April, the Permanent Mission of Israel will host a screening of the film This Is My Child at 1:15 p.m. in Conference Room E of the North Lawn Building.

Throughout its history, the United Nations has promoted the rights and well-being of persons with disabilities, including children with disabilities. In 2006, the General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities, which sought to change the view of persons with disabilities as “objects” of charity to seeing them as “subjects” — capable of claiming their rights and making life decisions on the basis of their own free and informed consent — and as active members of society, thus reaffirming the fundamental principle of universal human rights for all.

This year, the World Health Assembly will take up the subject of autism spectrum disorders at its Executive Board session in May, while the General Assembly will hold a high-level meeting on 23 September to address the condition of more than 1 billion persons with disabilities, including those with autism spectrum disorders.

Mr. Ban hopes leaders attending the meeting will “seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole”. The Secretary-General says: “Let us continue to work hand in hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.”

Contacts: Fred Doulton, tel.: +1 212 963 4466 or e-mail: doultonf@un.org; and Eileen Travers, Department of Public Information, tel.: +1 212 963 2897 or e-mail: travers@un.org.

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By Matt Carey

HHS Secretary Kathleen Sebelius Statement on National Autism Awareness Month

4 Apr

The U.S. Secretary of Health and Human Services, Kathleen Sebelius, posted the following statement on April 2nd, in honor of Autism Awareness Month:

Every April during National Autism Awareness Month, we recognize the special challenges faced by those living with Autism Spectrum Disorders (ASD) and refocus our efforts on the best ways to support them and their families.

Autism is a developmental disability characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. The latest figures from the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) leave no doubt that autism is a critical public health issue that deeply affects the lives of millions of Americans.

Research sponsored by the National Institutes of Health (NIH), CDC, and HRSA has advanced our understanding of risk factors underlying the development of ASD as well as supported the development and effective deployment of tools for early detection and intervention. Screening at younger ages is increasingly helping children to get the most effective treatments as soon as possible.

Today, NIH announced it has awarded $5.3 million in initial funding to two new recipients of the Autism Centers of Excellence (ACE) program. Eleven ACE centers around the country are now funded to support collaborative, multi-disciplinary science aimed at exploring the causes and identifying the most effective treatments for ASDs.

There is also a growing understanding of the significant needs people with ASD face, including support for education, employment and housing to allow them to fully participate in community life. Through the recent formation of the Administration for Community Living, the Department of Health and Human Services has strengthened its commitment to maximizing health, well-being, and independence for those with ASD and their families and caregivers.

The Affordable Care Act also is helping to meet the health care needs of those on the autism spectrum. Because of the health care law, insurers are not allowed to exclude children with autism based on their pre-existing condition. Beginning in 2014, it will be illegal for an insurer to discriminate against anyone because of a pre-existing condition or to charge more because of it. Also because of the health care law, children are now able to remain on their parents’ health plan until the age of 26. For young adults with autism and their families, that means more options and greater peace of mind.

Among the preventive services that health insurance plans must now cover with no out-of-pocket cost is autism screening for children at 18 and 24 months.

This month, let us renew our efforts to make advances through research and effective services and supports that will enhance the lives of the people and families—our children, friends, and neighbors—who struggle every day with autism.

For more information about ASD, see www.hhs.gov/autism.

Learn more about HHS and interagency activities related to ASD at www.iacc.hhs.gov.

For more information about the Affordable Care Act, see www.HealthCare.gov.

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By Matt Carey

Presidential Proclamation — World Autism Awareness Day, 2013

4 Apr

I know I am late with the Autism Day announcements, but I thought it valuable to post some of these now. Here is a proclamation by President Obama on World Autism Awareness day:

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Today, public health officials estimate that 1 in every 88 children in America is growing up on the autism spectrum. It is a reality that affects millions of families every day, from the classroom to the job market. And while our country has made progress in supporting Americans with autism spectrum disorders (ASDs), we are only beginning to understand the factors behind the challenges they face. On World Autism Awareness Day, we recommit to helping individuals on the autism spectrum reach their full potential.

To achieve that goal, we need a health care system that works for children and adults with ASDs. The Affordable Care Act prevents insurers from denying coverage to children on the autism spectrum, and it ensures new health plans must cover autism screenings at no cost to parents. Beginning in 2014, the Act will make it illegal for insurance companies to discriminate against men and women with preexisting conditions, including ASDs. And looking ahead, my Administration is investing in medical research that can help unlock tomorrow’s breakthroughs in autism detection, intervention, and education.

Leveling the playing field for Americans on the autism spectrum also takes commitment in our schools. That is why we are advancing initiatives to help students with ASDs get a good education free from discrimination and undue hardship. And it is why we are making sure that education can lead to meaningful employment by supporting vocational rehabilitation programs and opening higher education to more people on the autism spectrum.

All Americans should have the chance to live full, independent lives and follow their talents wherever they lead. This month, we recognize Americans with ASDs who are walking through doors of opportunity, and we recommit to opening them wider in the years ahead.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2013, as World Autism Awareness Day. I encourage all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-seventh.

BARACK OBAMA

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By Matt Carey

IACC Meeting next Tuesday (April 9)

4 Apr

The U.S. Interagency Autism Coordinating Committee will meet next Tuesday, April 9, at the NIH campus in Bethesda Maryland. The agenda reads

The committee will discuss autism related issues and will host activities in recognition of Autism Awareness Month and World Autism Awareness Day.

The meeting is to be held at

The National Institute of Mental Health
The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852

The meeting will also be webcast live.

More information can be found at the IACC website.

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By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Robert Saylor’s death ruled homicide

19 Feb

A gentleman with Down Syndrome went to the movies recently. When the movie was finished, he decided to stay to see it again. In other words, he did not get out of his seat; he did not buy a new ticket. The theater has security guards. Three of them.  Off duty police who were in police uniforms.  All three were called in to deal with this gentleman who would not get out of his seat.

The gentleman, Robert Saylor, died of asphyxiation.

Yes, for “resisting arrest” the off-duty police used enough force to result in the death of the gentleman. Because he wouldn’t buy an $11 ticket.

More at:

Autopsy finds that Md. man with Down syndrome died of asphyxia while in police custody

Robert Saylor death ruled a homicide

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By Matt Carey

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