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Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

Obama’s disappointing education budget

21 Feb

One of the key features of the Obama commitment during the campaign was a commitment to fully fund the IDEA (Individuals with Disabilities in Education Act). The IDEA made a commitment that the U.S. Federal Government would pay 40% of the costs of special education. In reality, the government typically pays about 17%.

Here is the wording from his plan. It was inspiring to hear a presidential candidate make such a bold commitment. One that could make a huge difference for disabled children.

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and
consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress
promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has
never lived up to this obligation. Currently, the federal government provides less than half of the promised
funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped
school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA
will provide students with disabilities the public education they have a right to, and school districts will be able
to provide services without cutting into their general education budgets. In addition to fully funding IDEA,
Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

Here is what the 2011 budget proposes:

The $12.8 billion request for Special Education programs focuses on improving educational and early intervention outcomes for children with disabilities. For the Grants to States program, the Administration is requesting $11.8 billion, an increase of $250 million over the 2010 appropriation, to maintain the Federal contribution toward meeting the excess cost of special education at about 17 percent of the national average per pupil expenditure (APPE), and provide an estimated average of $1,750 per student for about 6.7 million children ages 3 through 21. Funding for the Grants for Infants and Families and Preschool Grants programs would be maintained at their 2010 levels

17%. Status quo. Disappointing.

Proposed HHS budget has $16M more funding for autism research

21 Feb

The United States Department of Health and Human Services is proposing an increase in autism research funding of $16 million, or about 8% over the 2010 budget:

Addressing Autism Spectrum Disorders: The Budget includes $222 million, an increase of $16 million, for Autism Spectrum Disorders (ASD). NIH research will pursue comprehensive and innovative approaches to defining the genetic and environmental factors that contribute to ASD, investigate epigenomic changes in the brain, and accelerate clinical trials of novel pharmacological and behavioral interventions. CDC will expand autism monitoring and surveillance and support an autism awareness campaign. HRSA will increase resources to support children and families affected by ASD through screening programs and evidence-based interventions.

The Obama administration had originally projected $210M by 2011, so if this gets approved they will be ahead of the original plan.

Last year the Obama administration proposed $211 million:

Supports Americans with Autism Spectrum disorders (ASd). The President is committed to expanding support for individuals, families, and communities affected by ASD. The Budget includes $211 million in HHS for research into the causes of and treatments for ASD, screenings, public awareness, and support services.

If I do my sums correctly, congress actually funded $206 million. Don’t be surprised if the amount funded for 2011 is less than the $222 million proposed. Then again, according to Jocelyn Kaiser at Science:

And in any case, the president’s budget proposal doesn’t mean much because Congress usually ends up giving NIH more than the president requests.

The budget mentions autism in other places:

INVESTING IN SCIENTIFIC RESEARCH AND DEVELOPMENT
Exploring Scientific Opportunities in Biomedical Research:

The Budget includes $32.2 billion for NIH, an increase of $1 billion, to support innovative projects from basic to clinical research. This effort will be guided by NIH’s five areas of exceptional research opportunities: supporting genomics and other high-throughput technologies; translating basic science into new and better treatments; reinvigorating the biomedical research community; using science to enable health care reform; and focusing on global health. The Administration interest for the high-priority areas of cancer and autism fits well into these five NIH theme areas. In FY 2011, NIH estimates it will support a total of 37,001 research project grants, including 9,052 new and competing awards.

Emphasis added.

also,

Autism and Other Developmental Disorders: The Budget requests $55 million, an increase of $7 million, as part of the President’s Initiative to support children with autism spectrum disorders and their families. This funding will continue to expand Federal and State programs authorized in the Combating Autism Act to research, and support screening and vidence-based interventions when a diagnosis is confirmed.

also,

National Vaccine Injury Compensation Program: The Budget requests $7 million for the Vaccine Injury Compensation Program to prepare for projected increases in claims and continue reviews of over 5,100 claims from autism proceedings.

also, under ADDRESSING RESEARCH PRIORITIES IN FY 2011:

In FY 2011, for autism spectrum disorders, again building on significant Recovery Act investments, NIH will undertake complete genome sequencing and comprehensive DNA analyses of 300 autism spectrum disorder cases, and will launch the first epigenomic studies of brain samples from individuals with and without autism. NIH will also use a network of health maintenance organizations to identify patterns of environmental exposure during pregnancy and perinatal life that may contribute to autism.

and,

In FY 2011, NIH will also accelerate Phase 3 clinical trials of a promising mGluR5 antagonist, begin a clinical trial of the drug rapamycin, and create a translational pipeline for advancing additional small molecule drugs for autism.

Would I like to see more funding applied to autism? Heck yeah. But, this is twice the commitment that the previous administration made in autism research.

The proposed budget continues the NIH commitment to research on environmental and gene-environment causation of autism.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: “I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try.

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Dear Mr Obama

9 Nov

As a Brit, it really matters not one jot what I write to you, think of you or think of your policies. However, as we both know, it _does_ matter. Your soon-to-be-predecessor (and my goodness I am happy to write those words of Dubya) never understood why the opinion of the outside world mattered but you clearly do. And we in the outside world are rather keen on you.

I am very happy to note that your appointments indicated so far include Michael Strautmanis – father to an autistic child. As I understand it Mr Strautmanis very much favours an evidence based research approach to science. Good to know.

I was also amused to note that some think a certain Mr Kennedy may get an influential post. I suspect not. You don’t strike me a stupid man Mr Obama. Maybe some other portfolio needs filling? May I suggest Mr Kennedy becomes your drugs Cszar? I understand he has a good history in sniffing out drug issues.

Anyway, I was reading your Obama Statement in Support of World Autism Awareness Day and Awareness Month and I was both tut-tutting and nodding approvingly.

Tu-tutting as I read occasional talk of ‘epidemic’ and nodding approvingly as I read things like:

This effort will include diverse but credible research, treatment, personal care/assistance and family support…

and

Our nation and our world deserve an immediate and focused four-prong approach: research, intervention, life-long support, and an end to discrimination. As a result of the crisis, there is much debate as to the cause of autism and how to address it. What we need to do is devote ourselves to a solution built from a comprehensive plan that is research-based, inclusive, and effective.

Credible research….a plan that is research-based….very good to hear. I fear your recent competitor had no such plan but it is very good to hear of your commitment to a research-based plan.

Its also good to hear that you accept autism as a lifelong issue that requires intervention and an end to discrimination. Although this puts you at odds with the flat earthers who insist there is an autism epidemic which can be cured through non research based interventions (which obviously, they cannot back up) I think you have taken the right path and concentrated on the right issues – research based science that will offer a lifetime of evidence based interventions and care and result in an end to discrimination.

Glad you got in soon-to-be Mr President. I think you’ll do the real autism and autistic communities some real good.

President Obama

5 Nov

CNN called the election the moment the last polls closed: Obama. Senator McCain just conceded.

I’ve linked to it before, but here it is again: The Obama/Biden position on disabilities.

They state on that page:

In addition to reclaiming America’s global leadership on this issue by becoming a signatory to — and having the Senate ratify — the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong supports and resources to Americans with disabilities. They are as follows:

First, provide Americans with disabilities with the educational opportunities they need to succeed.

Second, end discrimination and promote equal opportunity.

Third, increase the employment rate of workers with disabilities.

And fourth, support independent, community-based living for Americans with disabilities.

Here’s their statement on Autism.

This includes:

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts:
Fully Fund the Combating Autism Act and Federal Autism Research Initiatives
Support Special Needs Education for Children with ASD
Support Universal Screening

Those are commitments. Thank you for those commitments, President Elect Obama. (We will be here to remind you of them, should the need arise).

They have committed to fully fund IDEA. It is hard to think that decades of unfulfilled commitments might just come to an end.

I like this one:

Barack Obama and Joe Biden will also work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.

That gets rid of the ambiguity as to whether someone with PDD or Aspergers can qualify for services and supports.

President elect Obama obviously has put some thought into his disability and autism platforms, if he chose these key issues to support.

Work, independent living, education, equal opportunity…

It will be tough, even with the President on our side. President Obama will need our support and input.

Why the Supreme Court matters to the autism community

4 Nov

Tuesday (which is today in some places already, tomorrow for others) is Election Day in the United States. One of the key powers of the U.S. President is the ability to nominate judges–including Supreme Court Justices.

Take a look at the biographies of the justices. In particular, take a look at their ages. and who nominated them:

John G. Roberts, Jr.. Born 1955. Nominated by President George W. Bush.

John Paul Stevens. Born 1920. Nominated by President Ford.

Antonin Scalia. Born 1936. Nominated by President Reagan.

Anthony M. Kennedy. Born 1936. Nominated by President Reagan.

David Hackett Souter. Born 1939. Nominated by President George H.W. Bush.

Clarence Thomas. Born 1948. Nominated by President Bush.

Ruth Bader Ginsburg. Born 1933. Nominated by President Clinton.

Stephen G. Breyer. Born 1938. Nominated by President Clinton.

Samuel Anthony Alito, Jr.. Born 1950. Nominated by President G.W. Bush.

The next President will be in office for 4 years, possibly 8. It is quite reasonable that he will be in a position to nominate a number of Supreme Court Justices.

Note that most of the current Justices were nominated by Republican Presidents. The only two nominated by a Democrat were Justices Ginsburg and Breyer.

If John McCain wins tomorrow, there is a non-zero chance that in 4 or 8 years, no Democrat nominated Justices will sit at the Bench. If Barack Obama wins, there is a reasonable chance that the balance of the Court might shift towards being more Democrat-nominated.

How does this impact the Autism community? Well, if you are like me, you see the struggles of the Autism community (and the disability community in general) as being focused largely on civil rights. Children have the civil right to an appropriate education. Children and adults have the civil right to a lifestyle with dignity, even though they may need more supports to achieve these goals.

I’ll let you search what the candidates have been saying, and doing, on civil rights issues during their careers and this campaign. But, take a look and consider how their views might impact a court you or a family member may be depending on.

That said, we can take a look at the issue of choice. Choice is often a codeword of abortion rights, as the landmark U.S. Supreme Court decision on abortion, Roe v. Wade, made use of the “right to choice”. It is one of the toughest questions facing America, and one I bring up with great trepidation as I really want to concentrate on the “right to choice” aspect.

The right to choice is not explicit in the U.S. Constitution. Because of this, it is not on the firmest of foundations.

How does this impact the Autism community? Here’s an example: much of the impact of California’s Mental Health Parity Act (AB88, which mandates coverage for certain conditions, including autism) has been reduced by the nature of the right to choice. Christopher Angelo, the attorney who pushed AB88 through the California legislature, noted in a lecture that he fought for greater implementation of AB88, even appealing to the California Supreme Court. The next step was the U.S. Supreme Court, but Mr. Angelo didn’t take his case there. Why? Because his case depended on the “right to choice” and he knew that the court was looking for a test case to define this right more clearly. Given the nature of the court, the likelihood of winning in the Supreme Court was far from assured.

In other words, the changes in the Supreme Court over the next administration could impact insurance coverage for people with autism.

In considering writing this post, it struck me that certain segments of the Autism community might also be impacted if the “right to choice” were to be diminished. Anyone who has looked at how the Supreme Court treated selective vaccination in the past would realize that people in the U.S. have far greater freedom of choice today than in the past.

But, that is a sidetrack. The main question is and will remain: how will future Supreme Courts decide on issues of civil rights for people with disabilities. It is worth considering closely.

Americans: make yourself heard

3 Nov

If the constant news barrage hasn’t driven it home to everyone yet, tomorrow is Election Day in the United States.

We’ve discussed the upcoming elections recently on this blog, especially since Senator McCain brought up autism in the final debate. This has been called historic. It likely is historic that disability issues have been so prominent in the debate and the discussion. I would venture to guess that Senator Obama’s policies on autism and disabilities in general are more thorough than has been seen before by a major candidate.

So, yes, get out and vote. That’s the obvious next step.

Then, take the less obvious step: email both candidates. Let them know what you like and don’t like about their platforms. Remind the winner of his team’s promises. But remember, there are three senators running. At least one will still be a Senator next year. Remind him/them of promises made. (should you be from Alaska and should Governor Palin remain Governor, let her know your thoughts as well.)

IDEA needs to be fully funded. That can’t be tied to earmarks, that can’t be tied to spending freezes. It is the right thing for the U.S. to do, regardless of circumstances. We as a country made a commitment, and we’ve never fulfilled it. Now is the time to change that.

Beyond IDEA, we have a commitment to all people with disabilities, of all ages. People have a right to a life with dignity.

Again, go out and vote. But, consider sending an extra message. Yes, it will be buried in the vast number of messages the winner (and his opponent) will get on election day.

The campaign websites have information on how to contact McCain/Palin and Obama/Biden. If can always reach Obama, McCain and Biden at their Senate offices as well.