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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.

More presidential autism politics II

30 Oct

I’ve been watching (happily) the recent emergence of autism as a topic of the U.S. presidential race. Actually, it is the emergence of autism as a topic for the republicans, as Senator Obama has had a clear policy statement on autism and on disabilities in general.

Recently, I noted that the McCain/Palin ticket’s statements were not strong commitments, but more general statements of support. Since that time, Governor Palin has come out with some stronger statements so it is worth revisiting the subject.

The Pittsburgh Tribune Review notes that in a recent speech:

Palin proposed “fully funding” the Individuals with Disabilities Education Act, which the campaign later said would cost $45 billion over the next five years. Palin proposed gradually increasing the $11 billion spent annually on such programs to $26 billion — the amount experts say the programs actually cost.

(as an aside $26B is only the 40% share the Federal government is supposed to be paying.)

But, back to the main theme–this is really good to hear. Whatever happens next Tuesday, Sara Palin, John McCain, Barack Obama and Joe Biden will be people of importance. The more of them that make commitments to support people with disabilities the better.

So, for that I thank Ms. Palin. I am pleased to see commitments firming up–they were very soft in the beginning.

I’d still like to see more. First, I’d like to see Mr. McCain pick up this theme. Yes, I know that they are trying to use this to help define Gov. Palin, but I’d like to hear Senator McCain commit to fully funding IDEA (as a part of a bigger disability platform). I’d love to hear him say that even if he remains a senator in a week, he’ll support fully funding IDEA.

But, let’s look again at the speech: here’s a paragraph from the Washington Post on this same speech:

In her speech, Palin said the federal government could finance the new investment by taking some of $18 billion it spends each year on earmarks, specific projects that are designated by members of Congress.

Let’s take a look at what the above means:

The President and the Vice President don’t have the power to pull earmarks out of bills. If fully funding IDEA is tied to reducing earmarks, it isn’t a commitment that she or Mr. McCain would have the power to enforce.

I don’t want to hear in a couple of years, “Well, we’d fund IDEA if congress would stop putting earmarks into bills.” I want to hear, “We increased the level of funding for IDEA in the budget we sent to congress. Further, we are going to fight them if they cut it.”

As election day nears, the pressure on the candidates gets greater. The McCain-Palin ticket has already responded by making their statements more firm. But, this isn’t the time to accept a weak commitment–we need to push them to do more.

Let Governor Palin and Senator McCain know: thank you very much. Sincerely, we thank you. But, please, take the time in this last week to make a firm commitment to funding IDEA. Also, IDEA is a great first step but, please, expand your disabilities policy to include more (like supports for adults, or whatever issues are big for you).

The McCain-Palin ticket has a contact form right on their website. So does Obama-Biden.

Sometimes the HuffPo gets it almost right

25 Oct

Regular readers will know of my concern regarding the HuffingtonPost and its clear antivax agenda. Kim Stagliano, David Kirby and (I think) Barbara Loe Fischer post there and whilst I don’t believe David has an antivax belief, I do think he is unfortunately promoting unfounded statements that feed antivax talking points (eg the claim HHS conceded vaccines caused Hannah Polings autism).

However, I was really pleased to see a post today in my Google Alerts from HuffPo that got it 95% right. Before I say why I have to clarify once again my position as a UK citizen and therefore my belief that I really shouldn’t take a position on the upcoming US elections. However, thats becoming increasingly difficult to do as I read such monumentally stupid things from McCain as:

[Sarah Palin knows]…more about autism then anyone I know…

Which I take to mean that the only person he knows with a connection to autism is Sarah Palin. Also his confused and pretty desperate looking pandering to the antivax crowd is downright annoying. But anyway.

The HuffPo post I’m referring to is Obama and autism by Elaine Hall. She describes:

Neal is my resident expert on autism. Now 14 years old, Neal was adopted from a Russian Orphanage at 23 months, and diagnosed with severe autism at age 3 . Neal is non verbal (or as we prefer to refer to him “a man of few words”) so when he speaks his truth through typing – WE LISTEN.

Me like.

Last January at one of his sessions with Darlene she asked, “”So, Neal, what have you been thinking about lately?”

“The Elections,” he typed on his Alpha Smart keyboard.

“What about the elections?” asked Darlene.

“I’m for Obama, he typed.”

“Obama? Why?”

“Obama is for Autism, ” he finished.

That evening my husband and I Googled Obama and Autism. And there it was, pages and pages from people with autism. Supporting Obama.

Me like even more.

This tells me a number of things. First it tells me that Elaine Hall and her partner are smart enough to see their autistic son as the resident autism expert. What a refreshing attitude. Second it tells me that when their expert speaks – THEY LISTEN. Also a refreshing attitude. Thirdly it tells me that someone being non-verbal does not mean they cannot communicate. I can think of more than a few people who read this blog who need that lesson drummed into their heads. Fourthly, it tells me that autistic people by and large support Obama. This means (for whatever the opinion of a non-voting Brit is worth) that I’m for Obama too.

Now, I said at the start of this piece that HuffPo only got it 95% right. They would’ve got it 100% right if they’d let Neal do the typing. However, he is only 14 and maybe thats why he’s not contributing publicly just yet. For now, I’m more than happy to read Elaine Hall’s words. This is from the front page of her website The Miracle Project:

The Miracle Project is a theatre and film arts program for children with special needs and their typically developing siblings and peers. Our mission is to provide a loving, accepting nurturing environment which celebrates and honors the unique and often unrecognized talents of these young people by guiding them through creative workshops and artistic programs.

Thank you Elaine Hall and thank you Neal. I’ll be looking out for more from both of you.

Reality bites back II

2 Oct

Its all going wrong for the believers of the vaccine/autism religion. This was supposed to be the time of their Fall offensive, spearheaded of course by Mother Warrior Jenny McCarthy and her appearance on the Oprah Winfrey show.

So far though, the media seem markedly less keen to talk to her about her recovering/no, recovered/ah….recovering/no, recovered/oh whatever autistic child. And the science is beginning to get equal air time. Recently, Dr. Ari Brown, Dr Lou Cooper and our very own Ken participated alongside a couple of minor league celebs on a discussion regarding autism and vaccines on the US show Good Morning America.

Yesterday the Age of Autism exhorted its members to mob a website that had created a Jenny vs Amanda poll (because popularity contests will definitely help autistic people). When the Pharyngula blog got wind of this PZ, the blog owner, asked his readers to vote too. The outcome?

Yikes.

The world view of the autism/vaccine zealots was shaken mightily yesterday. They’ve always imagined themselves as a large group with considerable power. Yesterday, they got squashed like a flea on a windscreen over something as meaningless as a celeb poll. Imagine how they must’ve felt to read some of the comments there. In fact, I’ve been tracking a lot of the gossip websites who’ve mentioned Jenny of late. She’s not popular outside her own crowd. Parents of autistic kids are catching on. Here’s a quote from someone I do not know and have never heard of before today commenting on Hollywood Today:

I am a single father of an autistic child and agree that Jenny Mcarthy is doing more harm than good. Why do we put more credibility in an actress / playboy bunny than doctors and other more credible sources.

And a mother of two autistic kids says on Ecorazzi:

As a mother with TWO autistic children, I find McCarthy’s ignorance appalling. Don’t we have enough difficulty in dealing with and understanding the Autism Spectrum without letting fad pseudo-science sway our families away from proper health care for our children?

These are not isolated examples I am very happy to report.

Yesterday the mercury militia – who think we’re just a few people compared to their ‘tens of thousands’ got a great big wet fish slap of reality.

Mother Warrior McCarthy is now complaining the US Presidential candidates are snubbing her. For goodness sake, why on earth did you ever think they would listen to you? You’re a D-list celeb who can’t even get her story straight on whether her son is recovered or not.

Anyway, she says:

I literally flew to go see MCCain, his team agreed to it (meeting), I was prepped and then all of a sudden his campaign manager said, ‘We’re ahead in the polls and this is a very, very touchy subject. Let’s not give this interview right now.

Wow, McCain employs the worst PR people in the world. They tell someone that they’re not going to interview them as they’re too controversial. How convenient for Jenny!

I’m thinking the conversation went something more like this:

JM: Hi, I’m Jenny McCarthy, can I speak to John McCain?

PR Dude: Sorry? You’re who?

JM: Jenny McCarthy, I’ve appeared in films such as ‘Scary Movie 3’ and…uh…

PR Dude: Whatever…why do you want to speak to the boss?

JM: About vaccines and autism! They’re poisoning our kids! Except mine is now recovered! No, wait – I have a book coming out, make that ‘recoverING’.

PR Dude: The country – no, the world – is in a national financial crisis and you want to talk to the boss about some quacky ideas never supported by science. Go away lady.

JM: But…but…I’m JENNY MCCARTHY…BULLSHIT!….BULLSHIT!!! (Where’s the camera?)

Now Jenny is desperate to get ahold of Obama:

MCCarthy is now desperately hoping Barack Obama, MCCain’s opponent in the race for the White House, agrees to champion her cause and address the autism versus vaccines issue.
She says, “We are trying (to contact him)… We have sent numerous (requests).

This is the same Barrack Obama who has said:

I am not for selective vaccination, I believe that it will bring back deadly diseases, like polio.

He might see you Jenny. Me might even pretend to listen. You might even get your picture taken with him. Better yet, he might pass on the opportunity to see you and then you can tell people how its a big conspiracy. You might even manage to squeeze another book out of it.

None of that will change reality though. The tide isn’t changing just yet but there’s been a few signs that it might be on its way.

John McCain starting to back away from vaccines?

28 Aug

I’m a bit hesitant to blog about political figures from other countries. I don’t know an awful lot about John McCain other than he was a Vietnam (I think) veteran and was a POW for awhile. I know the Bush team sledged him pretty badly in the run up to Bush’s current term and I know he tries hard to cultivate a old-fashioned-take-no-shit-youngster attitude. I neither like him nor dislike him.

However, back in February he did irritate me quite a lot when he said:

[Autism]….is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.

It irritated me because firstly, there’s no evidence its ‘on the rise’ in the sense I think he meant it. There’s no way of scientifically telling from current studies if it is or not. In fact, the best science done so far on the issue (Shattuck, 2006) states:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

In other words, because autism has not been tracked well up until now, there is no way we can say with any degree of confidence that is increasing. It may be, but most scientists think that instead of an _increase in autism_ , we are seeing an increase in _accurate diagnosis_ of autism.

Secondly, McCain’s statement irritated me because, of course, there is _no_ evidence, strong or otherwise, that indicates autism is caused by preservatives in vaccines. And certainly McCain totally failed to provide any kind of evidence for this silly statement.

However, as election time draws nearer, it seems McCain’s statements are growing a bit more (he said with no trace of irony) conservative. Maybe someone explained the facts of life to him: after having someone of less than stellar brain power in office for the last eight years, it might be a good idea to evaluate things properly, rather than just sound off and come across as Dubya Part II.

Here’s what he said recently:

We don’t know what causes [autism]. There’s a huge debate going on now about vaccinations. And I’ve read and studied and gotten briefings, and I don’t know all the answers.

Thats quite a lot more circumspect than ‘there’s strong evidence that indicates that it’s got to do with a preservative in vaccines’. A simple statement of facts. After all, its true – we _don’t_ know what causes autism. And there _is_ a debate going on about vaccinations. And guess what? John McCain _doesn’t_ know all the answers.

I’m guessing McCain’s team have suggested to him that if he doesn’t want to be known as the also-ran who hyped up unfounded fears of vaccinations in the middle of a measles epidemic sweeping through the country he’s attempting to lead then it would be a good idea to engage his brain before opening his mouth.