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It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

The myth that the IACC doesn’t support environmental causation research

21 Oct

Say a lie often enough and people will believe you. That is the strategy over at the Age of Autism blog, and for the organizations that sponsor it.

One of their favorite lies is the idea that the IACC (Interagency Autism Coordinating Committee) doesn’t support research into environmental causes of autism.

We are lucky that the IACC has published their research portfolio, showing not only the budgeted amounts, but the amounts committed so far. Below is page 11 from this document, for “Question 3. What Caused This to Happen and Can This Be Prevented?”

Question 3. What Caused This to Happen and Can This Be Prevented?
3.1 Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years. 2008 research funding $7,600,673

3.2 Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years. 2008 research funding $4,065,392

3.3 Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years. 2008 research funding $713,227

3.4 Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years. 2008 research funding $4,603,867

3.5 Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years. 2008 research funding $184,628

3.6 Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years. 2008 research funding $1,803,628

3.7 Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years. 2008 research funding $2,742,999

3.8 Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years. 2008 research funding $36,966,711

3.9 Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years. 2008 research funding $17,297,788

Adding those topics funding environmental causation and gene-environment causation, I get a budget of $135,500,000 for six topics.

Summing the gene only projects (3.2 and 3.8) I get $77,600,000, for two projects.

Yes, about 60% of the causation budget is on environment and gene-environment mechanisms.

Why isn’t the Age of Autism blog writing about this? Why aren’t Generation Rescue, SafeMinds, the National Autism Association…all of the “environmental causation” organizations happy with this level of funding?

Why isn’t Lyn Redwood, IACC member and SafeMinds co-founder claiming a huge victory? How about Mark Blaixill, who is on an IACC subcommittee, and is also a member of SafeMinds? Why isn’t he discussing this?

The reason is obvious, to me at least. There isn’t a specific project calling for research into vaccines.

Guess what, there isn’t anything ruling out vaccine research either.

If the vaccines-cause-autism groups want to call for transparency in the process, why don’t they practice it? Why are they hiding information from the autism community? Do they actually care about environmental causation aside from vaccines? It doesn’t seem like it to this observer.

NIH director on the lack of trust within the autism community

20 Oct

This video is taken from the Simons Foundation blog. The Simons Foundation was able to get NIH Director Francis Collins to make a statement about the resignation of Story Landis from theIACC .

I am impatient for answers. If there were any good evidence that vaccines were causal in autism, I’d be pushing for research on that subject.

As Dr. Collins notes, we should not assume that there is “just one path” that will get us to the truth. I would assert that it is precisely the vaccine/autism organizations who can’t leave behind their one path. We need to move forward, not spin our wheels in the same place that hasn’t proven fruitful for the past 10 years. It’s time to move beyond vaccines.

http://vimeo.com/moogaloop.swf?clip_id=7156587&server=vimeo.com&show_title=1&show_byline=0&show_portrait=0&color=6854a1&fullscreen=1

Dr. Landis resigns from IACC: Vaccine-autism lobby shot themselves in the foot

19 Oct

Here’s a big “oops” moment for the good people at the Age of Autism blog and the organizations it represents.

They may have forced the resignation of someone sympathetic to their cause.

Here’s the back story. Dr. Story Landis is one of the government’s representatives on the Interagency Autism Coordinating Committee (IACC). She wrote some notes during a past meeting. After the meeting, someone found the notes and passed them to a blogger at the Age of Autism, who published one of them with a scathing blog post calling for her resignation.

Dr. Landis has resigned.

Note that the blog post was timed to coincide with last week’s IACC meeting. Also note that no one appears to have contacted Dr. Landis prior to posting the blog piece. For that matter, no one appears to have contacted her prior to her resignation.

Here’s what the note read:

I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

Would be a good justification for looking at vaccine injured kids who have gotten awards.

Mr. Kirby has blogged the incident. He includes an email he received from Dr. Landis, quoted below:

I can understand people’s reaction seeing just the note that I wrote during the recent IACC scientific workshop. I felt it important to apologize immediately to the autism community, which I did at yesterday’s IACC, subcommittee meeting. Let me repeat my apology for the record: “I have seen some thoughts that I jotted down during the recent IACC meeting posted on Katie Wright’s blog. I am very sorry that my personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend. As a responsible and committed member of the IACC I am sorry for the upset that it has caused and the concerns that it has raised.”

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

Repeated for emphasis: “The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. ”

If things are as they appear, the Age of Autism bloggers may have just gotten someone sympathetic to their goals to resign from the IACC.

Mr. Kirby’s comment about this explanation set of an irony meter:

A lot of people I have spoken with were also surprised by the statement, given the general hostility toward vaccine research they have encountered at the IACC.

Hostility? When it comes to the IACC there is a lot of hostility, I will grant that. But it flows from certain autism groups and the Age of Autism blog in particular towards the IACC. Mr. Kirby has joined his fellow Age of Autism bloggers in the intense hostility shown towards the IACC and its chair, Dr. Thomas Insel. Watch the recent interview that Mr. Kirby did with Sharyl Attkisson if you would like to confirm this.

I realize that many people are upset that the IACC is not funding vaccine research (even though I am not one of them). But, “hostility”? No. The IACC and Dr. Insel have remained respectful on the subject.

Let’s recap many of the mistakes made in this story

1) Dr. Landis should have been more careful with her private questions and not left the notes behind

2) Whoever did the “dumpster dive” embarrassed the autism community. I’m sure it would have been considered justified if they hadn’t screwed up and forced the resignation of someone sympathetic to their cause. But that leads us to:

3) The Age of Autism decided that a surprise attack was more important that gathering all the facts and published the blog piece without comment from Dr. Landis.

4) Bloggers, including myself, didn’t step forward to defend Dr. Landis’ right to pose reasonable questions.

5) Dr. Landis didn’t defend her own right to pose reasonable questions.

6) Dr. Landis resigned. Yes, I consider that a mistake.

7) Apparently Dr. Insel accepted her resignation. I consider that a mistake as well.

Let’s take a look again at the question Dr. Landis posed that caused such a stir: “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?”

Why is this such an outlandish question? Ms. Redwood represents SafeMinds, an organization which promotes the idea that vaccines caused an epidemic of autism. In their web page on Ms. Redwood’s activities on the IACC, SafeMinds made it extremely clear that autism as vaccine injury was the number one priority for the meeting where Dr. Landis wrote her note. It was perfectly reasonable for Dr. Landis to wonder how the idea of multi-system disorder ties into the idea of autism as vaccine injury. It could have been phrased better. Better yet, it could have been phrased better and posed as a question directly to Lyn Redwood. Unfortunately, the very same hostility that the bloggers Lyn Redwood’s organization sponsors make that nearly impossible. The same politicization of any statement about vaccines and autism that her organziation and Mr. Kirby, their publicist, make it nearly impossible to have that discussion.

Yes, there were people who thought the Age of Autism blog post was a good idea. Many probably still do. The same people are likely writing this post off as gloating at their mistake. This isn’t gloating. This is disgust. This is anger that a bunch of people have ratcheted up the hostility towards the IACC to a level that impedes discussion and progress, and then have the gall to blame the IACC for the hostility.

The fact that you guys shot yourselves in the foot in the process only serves to prove my point.

Facilitated Communication – where does a neurodiverse skeptic stand?

6 Oct

An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.

This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:

Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *

So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?

Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.

Listen in to IACC conference calls

12 Sep

The Interagency Autism Coordinating Committee is preparing for a two day session to discuss their Strategic Plan for autism research.

That workshop will be held on September 30 and October 1.

Before that meeting the workshop panels will hold conference calls. You can listen in. See the note below.

The Interagency Autism Coordinating Committee (IACC) will be holding a Scientific Workshop to discuss the updating of the 2009 IACC Strategic Plan for Autism Spectrum Disorder Research on September 30, 2009 and Thursday October 1, 2009 at the Bethesda North Marriott Hotel and Conference Center in Bethesda, MD. Information about the 2009 IACC Scientific Workshop, including the workshop agenda and logistical information can be found at the Scientific Workshop Announcement Page on the IACC Website.

In preparation for the workshop, each of the five workshop panels will be holding pre-workshop planning conference calls from September 14, 2009 to September 25, 2009. These phone calls will be open to the public via conference call lines. Members of the public who call-in will be able to listen, but will not be heard.

The pre-workshop planning conference call schedule and call-in numbers for the public are posted on the following web page: http://iacc.hhs.gov/events/2009/iacc-scientific-workshop-conference-call-sept30-oct1.shtml. If there are any changes to the call schedule, they will be listed on that page as soon as they are available.

The IACC can now be found on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this meeting is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8200
Rockville, MD 20852
Phone: 301-443-6040
IACCPublicInquiries@mail.nih.gov

U.S. Senator Ted Kennedy passes

27 Aug

Senator Ted Kennedy has passed away.

The Kennedy family is well known worldwide. He was well known in his own right as a powerful senator for over 40 years (third longest tenure in the U.S. senate in history). His family has included many prominent politicians and citizens.

The Kennedy family has a history of supporting disability rights issues. Ted Kennedy is responsible for much of that.

Here is the family’s statement. They have my condolences.

“Edward M. Kennedy—the husband, father, grandfather, brother and uncle we loved so deeply—died late Tuesday night at home in Hyannis Port. We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever. We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all. He loved this country and devoted his life to serving it. He always believed that our best days were still ahead, but it’s hard to imagine any of them without him.”

Here is the section on disability from Senator Kennedy’s website. It is quite extensive.

Disability Rights

In 1978, Senator Kennedy cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability. Two years later, Kennedy cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution. This law grew out of increased awareness of the unhealthy and inhumane living conditions and treatment of many people within government institutions, such as the case of the Willowbrook State School for the Mentally Retarded, which came to the forefront in 1972. Beyond assuring humane living conditions and basic rights to such individuals, the law details its protection of the religious practice of the institutionalized.

Senator Kennedy cosponsored legislation in 1984 requiring polling stations to provide physical accessibility for disabled and elderly people on federal election days. If this is not possible, polling places are required to provide alternative voting methods so that individuals in such a situation are able to cast a ballot. The law also holds that polling places must make registration and voting aids available for the elderly and people with disabilities. In 1986, Kennedy was an original cosponsor of the Air Carrier Access Act. This law required that facilities and services be provided to people with disabilities traveling by air. Accessibility requirements applied not only to the aircrafts but also to airports and terminals.

In 1988, Kennedy introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children. By expanding the law, the FHAA prohibited discrimination towards people with disabilities in the sale or rental of housing and in the terms, facilities and services provided. It also sets certain guidelines for remodeling and necessary modifications to a residence for both the landlord and the tenant.

On July 26, 1990, the Americans with Disabilities Act was enacted into law. Introduced by Senators Kennedy and Harkin, the ADA prohibited discrimination by a covered entity (employer, employment agency, labor organization, etc) against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement, training, etc. The law declared that no qualified individual with a disability shall be excluded from the participation in, denied the benefits of, or subjected to discrimination by a public entity, and also required accessible rail transportation and telephone services for persons with speech or hearing impairments.

In response the alarming level and increase in the victimization and violence against people with disabilities, Congress passed the Crime Victims and Disabilities Awareness Act of 1998. Kennedy cosponsored the bill, which directed the Attorney General to conduct a study on the issue and to include specific details regarding the crimes against people with disabilities and to include them in the National Crime Victimization Survey, an annual publication. In 2004, Kennedy was an original cosponsor of the Assistive Technology Act, which supported states in an effort to sustain and strengthen the capacity to meet the assistive technology needs of individuals. In addition, it would focus funding on investments in technology that could benefit those living with disabilities. Millions of Americans experience severe disabilities that affect their ability to see, hear, communicate, walk, or perform other basic life functions. This should not preclude any individual from enjoying full integration in the economic, political, social, and educational activities embedded in American life.

Vocational Rehabilitation and Employment

Senator Kennedy was a strong supporter of the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. These amendments included a number of very important steps in disabilities legislation. It established a functional definition of developmental disability, created the National Council on the Handicapped and the National Institute of Handicapped Research, set a funding minimum for protection and advocacy services and authorized a grant for independent living services and opportunities for people with disabilities.

In 1982, Kennedy was one of the main cosponsors of the Job Training Partnership Act, which was designed to break down some of the barriers facing “economically disadvantaged” individuals and among them people with disabilities. Kennedy made sure to include provisions stating that people could not be excluded from the training program and the advantages it provides based on a disability or other classification. Four years later, Kennedy and Senator Quayle introduced amendments to the Act that afforded people with disabilities special consideration in the awarding of discretionary grants within this training program through the provisions of these amendments.

In 1986, Kennedy cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act. People working despite severe disabilities became eligible for special status to receive SSI benefits and Medicaid coverage. This special status was valid unless the impairment went away or their earnings exceeded an amount that zeroed out their cash benefits.

In 1999, Kennedy was the primary sponsor with Senator Jeffords of the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

Assistive Technology

Senator Kennedy was an original cosponsor of legislation that provided funding to all 50 states in order to raise awareness about the potential of assistive technology to significantly improve the lives of people of all ages with disabilities. It also aimed to facilitate a coordinated effort amongst state agencies to provide and encourage the use of assistive technology for individuals with disabilities. Senator Kennedy cosponsored reauthorizations of the Act in 1994, 1998, and 2004.

Education

Senator Kennedy was an original cosponsor of the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities, regardless of their severity, in all states.

Kennedy was an original cosponsor of the Handicapped Children’s Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act. That same year, Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.

In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology. In 1997, Kennedy was an original cosponsor of amendments that consolidated the original 9 subchapters of IDEA into 4 subchapters. Among the other changes were the inclusion of special education in state and district-wide assessments, the promotion of mediation as an option to disputes between teachers and parents of children with disabilities, a provision that special education students be disciplined in the same way as other students, the continuation of services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and the requirement of charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

In 2004, Kennedy was the sponsor and lead negotiator of the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

Health Care

In 1982, Kennedy was an original cosponsor of legislation that allowed for states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

In 1990, Kennedy, along with Senator Hatch, introduced the groundbreaking Ryan White CARE Act, which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care. Other services included in the bill were drug treatment, dental care, substance abuse treatment, and outpatient mental health care.

In 1991, Kennedy sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration. Specifically, it separated the previously combined treatment and research branches of the department, which improved the capacity to effectively address both the prevention and treatment of substance abuse and mental health.

The Ryan White CARE Act reauthorization of 2000 reaffirmed Senator Kennedy’s commitment to providing access for persons with HIV disease to life-sustaining medications, medical care and other essential services. The Act authorized nearly $9 billion in HIV/AIDS services over the next five years.

In 2006, Kennedy won a 5-year-long battle to pass the bipartisan Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

In 2007, Senator Kennedy reauthorized the Ryan White Care Act of 1990. The reauthorization focused on quality of life issues, new and emerging therapies, and ensuring that funding for programs followed the people affected by the disease. Having over 15 years worth of information and recognizing that the disease had changed significantly, the focus was placed on prevention and issues of chronic care. It also acknowledged that the demographics had changed and the disease was now evident beyond the cities and in rural areas as well. Drug treatments had also advanced and people living with HIV were staying alive 20 to 30 years beyond their day of diagnosis.

In 2008, after more than 10 years of effort, Senator Kennedy championed historic legislation to reform the inequities in the way mental health and substance use disorders are treated by the insurance industry. This legislation, co-sponsored by Senator Domenici, assured individuals living with mental health and substance abuse issues that there mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements. This means that co-pays, out of pocket expenses, and deductibles cannot be treated differently than they way medical-surgical is treated. This legislation assured equity for 113 million Americans.

In July of 2009, Senator Kennedy succeeded in having the CLASS Act be included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide the elderly and disabled with a daily cash benefit that allows them to purchase the services and supports they need to remain in and be productive member of one’s community.

Developmental Disabilities

In 1975, Senator Kennedy cosponsored legislation to create a “bill of rights” for people with developmental disabilities. The bill also provided funding for services for people with this type of disability, supplemented funding for affiliated university facilities and created state-based systems of protection and advocacy groups in all 50 states. Kennedy was an original cosponsor of the reauthorization in 1987, which updated the language of the 1975 law. It also gave greater independence to the State Planning Councils, fortified the authority of the state-based protection and advocacy systems in investigations into abuse and neglect, and established separate line items for funding and training in university affiliated programs.

IACC comment time: No more procrastinating!

21 Aug

If you are like me you have put off submitting comments to the IACC.

If you are like me you need a reminder.

If you are like me you are in danger of missing the deadline.

Any thoughts about autism research? Let them know. Let them know if you think they are doing a good job or a bad job. Let them know if you think they should put more or less effort into any area.

Let them know here.

You don’t have to answer all the questions. You don’t even really have to stick to their format (if you hit “continue a few times, you get to an they even have an “other information” question).

I was going to try to write this without referencing groups that have opinions I disagree with. However, here is a comment from the Age of Autism blog on the IACC:

Answering their questions made me ill. The idea that their research intiatives include “where do I turn for help” and “what does the future hold”. What a ridiculous drain and distraction from important things such as treatment and prevention.

“What the future holds” is the category for adults with autism. Only 5% of research funding goes towards such research.

Even if the research funding wasn’t that small:

If you feel, like I do, that research into areas such as services for autistic adolescents and adults are important. If you feel that there is room for anything beyond just “treatment and prevention”. If you don’t want your opinion dismissed as “..a ridiculous drain and distraction from important things…”, the time to be heard is now.


It only takes a minute.

Autism and Vaccines: IACC and NVAC met on July 15

8 Aug

Do vaccines cause autism? That is a question which dominates much time (some would say too much time) on the Interagency Autism Coordinating Committee (IACC). The last full meeting (July 15) was partially devoted to the question, with a presentation by the National Vaccine Advisory Committee (NVAC).

I try to listen to as much of the IACC as I can. I figured this meeting would be a big one, with time devoted to the vaccine causation question and all.

But this time I just didn’t have the time. When I called in the vaccine presentation was already over. After the meeting I cringed waiting to hear the vaccine spin from certain groups. Oddly, the vaccines-cause-autism groups were silent on the issue. The only discussion I have read so far about the meeting involves the fact that the meeting ended early and some people weren’t able to make public comments (observations about this at the bottom of this post)

One reason I was interested in what NVAC had to say is that people like David Kirby have been cherry picking the NVAC statements and, through artful omissions, helping to keep the epidemic alive.

For anyone who doesn’t know: David Kirby wrote a book: Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. As time has gone on, the phrases “mercury in vaccines” and “epidemic” are just conveniently left out of Mr. Kirby’s blog posts. That doesn’t mean he has stopped supporting the epidemic notion. He has always had a sort of passive-aggressive approach to the epidemic. He’s just trying to “spark a national debate.” Well, that dodge doesn’t work with me.

Recently Mr. Kirby hasrelied on statements by the NVAC to make his case. In a recent blog post, he opened with:

It is not accurate for members of the media to report that the link between vaccines and autism has been “disproven.” This is especially true in light of recent news from the National Vaccine Advisory Committee – and a series of other news items from the Federal Court of Claims, Federal health agencies, leading universities and top autism researchers around the country.

Given this background, I was expecting the IACC/NVAC meeting to be full of talk about epidemics and mercury…at least from the post-meeting commentary.

Luckily, someone sent me the slides from the meeting.

So, with that long introduction, let’s look at the quotes NVAC used for their own discussion of vaccines and autism in the IACC meeting. Shall we?

“The NVAC also notes the public engagement process identified public concern (Appendix 2) related to thimerosal, particularly with respect to autism/ASD. The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.”

…a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to vaccination.

In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

(note, there are four more quotes on page 30, in the “additional slides” section)

I guess I shouldn’t be surprised no one from the vaccines-cause-autism groups was blogging this. It’s pretty clear that NVAC doesn’t support the idea of a vaccine caused epidemic of autism–either through thimerosal or some other means. Not something the vaccines-cause-autism crowd wants to advertise.

As long as we are here, it is worth noting that there was a lot more discussed in that meeting aside from vaccines.

There was a presentation about the Autism Centers of Excellence (ACE). These centers were created as large investments to build a long term autism research infrastructure.

There was discussion of the National Database for Autism Research (NDAR). This database is collecting all sorts of information (genetic, behavioral, diagnostic, etc.) for researchers to share. There was discussion about the cost to enter data into the database (about $5k per research project) and whether this would be an impediment to collecting information. Should NIH make separate small grants to cover the cost of data entry into NDAR? There was discussion comparing NDAR to IAN and whether these two databases could be linked. There was a suggestion that perhaps parents could add data to NDAR, not just researchers. (I’m skeptical that can be done well.) There was a very critical comment that NDAR has been “almost ready” to go for many years.

One very interesting part of the IACC meeting was the discussion of how autism research funding is spent. This was the basis for a blog post I made showing how research on autistic adults is getting a very small fraction of the total.

Most (if not all) of the blogging on this IACC meeting has focused on the end: the was time for public comments. I wish I had known this was going to become a subject of contention; I would have made some notes. As it is, my recollection is that 4 people wanted to give public comments: Jim Moody (attorney and member of SafeMinds), Ari Ne’eman (president of ASAN), and two families with autistic children.

The meeting ended early, and the only person present to make his public comment was Mr. Moody. They called for the other people to comment, but, as I said, they weren’t present.

This is now being played up as excluding families by rushing through the agenda. I was surprised that they ended so early, but I didn’t get the impression they were rushing though it. I also note that it wasn’t just families who didn’t get to speak, Mr. Ne’eman didn’t get his opportunity either.

What I haven’t read is anyone giving an actual solution to the problem of what happens if they finish the agenda early.

Here’s my suggestion: perhaps Dr. Della Hann*as Executive Secretary of the IACC could see that cell phone numbers are taken from the commenters. When it looks like the meeting is ending, someone could send those scheduled to comment a text message via email.

Who knows, there is probably some government rule that bars doing that. But this strikes me as an accommodation issue. Autistics, especially kids, may not be able to sit through the hours of the meeting waiting for their 5 minutes to make public comment.

*There is a misunderstanding being propagated on the blogs lately. For anyone interested, her surname is Hann, not Hamm.

IACC seeking input on the Strategic Plan

29 Jul

If you are interested in how the U.S. government pays for autism research, you should be following the Interagency Autism Coordinating Committee (IACC).  They are, well, coordinating the research efforts of the various U.S. government funding agencies.

A big piece of this effort is their “Strategic Plan”.  That is a document that outlines what research should be done, and gives a budget for the research projects.

The first version of the Plan is out, but it has to be updated every year.  So, here’s your chance to be heard: do you want more money spent on issues concerning adults with autism?  Do you want vaccine/autism research to be incorporated into the Plan?  Let them know.

We discussed research funding for autism recently.  Only about 5% of the total research expenditures in autism are going to understand issues specific to adults.  This is under the category “What does the future hold?”  Yes, that question does speak to parents of children with autism.  For the majority of autistics, the future is now.

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

It is time to call for more research into issues concerning adults.  It’s just wrong to have so little of the funding going into this very important area.

Whatever feedback you may want to give, you can do this through a web based form.

Here is the email I received:

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the Nation Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act.  The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members.  The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders.  The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?

II. How can I understand what is happening?

III. What caused this to happen and can this be prevented?

IV. Which treatments and interventions will help?

V. Where can I turn for services?

VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record.  You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

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