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Jenny McCarthy needs to learn: autistic is not psychotic or crazy

6 Aug

Last year Amanda Peet had a story in Cookie Magazine. She came out very pro-vaccine. Jenny McCarthy “jumped” on the story (delayed to be coincidental with Jenny McCarthy’s need for publicity).

This year, Cookie Magazine has a story with Jenny McCarthy. There is a lot bad in there. I am saving the worst for last (you can skip to the bottom if you want).

As to be expected in a magazine article about a celebrity, Ms. McCarthy is pushing her own business interests. In this case, her educational DVD collection:

“Through a series of entertaining vignettes featuring a cast of kids (including Evan), puppets, and dolls, the DVDs model correct social behavior and tackle everything from sharing and patience to maintaining conversations with friends to sibling rivalry. “Any parent will tell you that her kid watches a show and imitates it,” McCarthy says of her inspiration for the idea.”

I find that statement really strange for educational videos targeting autistic kids. I can think of a number of parents of autistic kids who would disagree with “Any parent will tell you that her kid watches a show and imitates it” From the book “Educating Children with Autism” by the National Academies Press:

Studies over longer periods of time have documented that joint attention, early language skills, and imitation are core deficits that are the hallmarks of the disorder.

Another quote from the Cookie Magazine story:

McCarthy’s widely publicized journey began in 2004, when her son had a seven-hour seizure and went into cardiac arrest. When he got home from the hospital, Evan was put on a heavy dose of antiseizure medication, which kept him awake for four days and induced hallucinations that made him not recognize his mom and bang his head against the wall until he bled. “I ran out of my house and into my driveway and screamed at the top of my lungs to God to just take him away, because I loved him so much and he was in so much pain,” McCarthy says of the period she describes as her “second rock-bottom” (the first being the moment Evan’s heart stopped momentarily).

A couple of observations.

First, I wish Cookie Magazine had clarified the point as to how long after his vaccination the seizure came. His MMR was at 14 months, his first seizure was after he was 2.

Now for the second. Did Jenny McCarthy really write that she had wished her child would be taken by god?

I didn’t want to blog this story. Why give Jenny McCarthy more publicity? Well, here’s the paragraph that made me want to blog:

McCarthy is leading a more normal life now, too, after having felt very alone in her first marriage, to Evan’s dad, and suffering what she calls a “breakdown” two years after Evan went into cardiac arrest and suffered those terrifying seizures. “When your kid is psychotic or crazy, you go into this place of shock so you can remain calm,” she says. “A problem a lot of moms [of autistic children] have is that they need to get out all [their emotions] later. I kept mine bottled up for two years, and then I finally released all this pent up fear, sadness, and anger. I just cried and cried and cried and cried and cried.”

“When your kid is psychotic or crazy, you go into this place of shock so you can remain calm”

I just don’t know what to say. Autism is not “crazy” or “psychotic”. Why is this woman chosen by the press to represent autism?

Maybe next year Cookie Magazine could interview a mother who is autistic or, at least, has an autistic child.

Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

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.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

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.

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

Obama to sign the International Treaty On The Rights Of Persons With Disabilities

24 Jul

I am one of the many people who feels that America is a place where civil rights are the core of our identity. I also agree with the many people who believe that the key questions facing the autism community are also civil rights oriented.

I am thus of mixed emotions with this announcement: President Obama will announce that he will sign the International Treaty On The Rights Of Persons With Disabilities. This is the subject matter I love to blog. At the same time, I hate to see the U.S. not in a leadership role on such an important subject. We should have signed this treaty long ago.

A press release from the American Civil Liberties Union (ACLU) states:

WASHINGTON – July 24 – At a celebration today of the 19th anniversary of the passage of the Americans with Disabilities Act (ADA), President Obama will announce that he will sign the most comprehensive international treaty on the rights of persons with disabilities. If ratified by the Senate, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) will be the fourth major human rights treaty ever adopted by the U.S. and the first it has adopted in the 21st century. The American Civil Liberties Union welcomes President Obama’s reengagement of the United States in international human rights efforts.

I was forwarded the following email from Ari Ne’eman, of The Autistic Self Advocacy Network:

Hello,

This afternoon, I will be joining President Obama and the leadership of the cross-disability community at a special ceremony at the White House where the President will be announcing the intention of the United States to become a signatory to the UN Convention on Disability Rights. The treaty will enshrine in international law a wide array of rights, some of which are present in the United States already, such as the right to reasonable accommodation, as well as others, such as the right to community living supports as opposed to having only segregated options available, that we still have to fight for in our own country. You can read the treaty yourself by going to http://www.un.org/disabilities/default.asp?id=259. This is an important day for our community and I believe the President should be applauded for taking this important step.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

That felt good to blog.

More non-autism blogs critical of the vaccine-autism story

23 Jul

There is a substantial public relations push to get the vaccines-cause-autism idea in front of the public’s eye. High end, expensive PR firms have been hired, and, let’s face it, they got a big free boost from Jenny McCarthy and Oprah.

The cost to public health is obvious. Declining vaccination rates have already had a big impact in the UK, and the US has also seen a resurgence of measles and other diseases.

But, there is another cost. As noted recently on this blog, Jenny McCarthy has already become the butt of comic strip jokes for her position on vaccines. Many people are likely to not realize that Jenny McCarthy speaks for a minority (loud though they may be) of the autism community. My kid relies on on the public’s perception of “the autism community”. When people like Ms. McCarthy damage that perception, there is a very real cost to my kid, my family.

It isn’t new for bloggers outside of autism to be critical of Jenny McCarthy and others in the vaccines-cause-autism groups. Most notably, Orac has taken Ms. McCarthy to task a number of times in what is one of the most well read medical blogs, “Respectful Insolence“. Likewise, Science Based Medicine has had a number of bloggers take on the pseudoscience and dangerous opinions of the vaccines-cause-autism crowd. But, one could argue that they are medical blogs and, thus, more connected to vaccines, public health and autism than your general blogger.

But, the past week has seen a couple more prominent blogs

Discover Magazine’s Bad Astronomy has come out against the dangerous pseudoscience with Jenny McCarthy: spreading more dangerous misinformation. If the title isn’t clear enough, here’s the first paragraph:

If you haven’t had your quota of shockingly wrong medical advice for the year yet, try watching this video by Dr. Jenny McCarthy, as she manages to squeeze about a metric ton of misinformation into a two-ounce package.

Note: “try watching this video” is a link in the Bad Astronomy blog piece. A link to the video hosted by Generation Rescue. For some reason (bad publicity? Too much bandwidth?) GR has pulled the video from their site.

While I cringe at yet more damage to the public perception of the “autism community”, I applaud Bad Astronomy for taking on Ms. McCarthy. It isn’t Bad Astronomy’s fault if “the community” looks bad. It is squarely at the feet of Jenny McCarthy.

Interestingly, Mr. Kent Heckenlively of the “Age of Autism” blog decided to comment at Bad Astronomy. Even more interesting, Mr. Heckenlively was forced to retreat to his own blog to continue the discussion where his claims wouldn’t be exposed to actual criticism.

But, once again, one could say it is expected that a science blog like Bad Astronomy would take on Jenny McCarthy. The do-vaccines-cause-autism question is a science question after all.

Enter Mother Jones. MJ blogger Sonja Sharp posted, Breaking: Vaccines Still Don’t Cause Autism.

Mother Jones is not a science or medicine based publication. In fact, as Ms. Sharp states:

We love a good conspiracy as much as the next investigative magazine—especially one that involves Big Pharma, the FDA, and the CDC. But as we’ve extensively reported here, the vaccines = autism meme might just be the most damaging medical myth of the decade. Not only is it based on false “science” that’s tearing apart the families of sick children, it’s unintentionally sickening thousands of others.

While the vaccine/autism story isn’t completely new to Mother Jones (for example, see Arthur Allen’s piece, Vaccine Skeptics vs. Your Kids)), Jenny McCarthy et al. should take a big hint when they can’t even get sympathy from MJ.

This blog piece obviously hit a nerve. Take a look at the comments. Second comment: David Kirby. David Kirby is, for better or worse, one of the most read bloggers talking about autism. I can already feel the heat from those who will (with good cause) tell me that David Kirby doesn’t really talk about autism. Point well taken. That said, Mr. Kirby doesn’t even participate in the comments of his own blog. Why suddenly break the tradition with Mother Jones?

I expect Mr. Kirby to actually partake in the discussion beyond his one comment. I may be forced to take a page from Mr. Heckenlively’s book and take the conversation here.

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

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?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

Joint Letter from Self-Advocacy Organizations to Secretary Sebelius

20 Jul

There has been a lot of online discussion about how Health Care reform will affect the autism communities. This has included a number or recent posts on this blog.

Much of the discussion here and elsewhere has focused on children and, especially, on ABA. There is a lot more to autism and a lot more to health care than just these subjects. Case in point, the letter below.

A number of self-advocacy groups have sent a joint letter to the secretary of the U.S. Department of Health and Human Services (Secretary Kathleen Sebelius). One of these groups is ASAN, the Autsitic Self-Advocacy Network.

(Edit) This is an effort to bring in issues from the Community Choice Act, which includes much that the CLASS act has left out. ASAN has an action alert on this. Please, take the time to sign the online petition.

This is something we all should be getting behind.

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius

Secretary

U.S. Department of Health & Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

* eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

* meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;
* address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;
* address the needs of persons who acquire disabilities earlier in life and won’t qualify because they cannot secure employment;

* provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit; or

* meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS. It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling

Organizer, ADAPT

Andrew J. Imparato

President and CEO, American Association of People with Disabilities

Ari Ne’eman

President, The Autistic Self Advocacy Network

Brenda Battat

Executive Director, Hearing Loss Association of America

Nancy J. Bloch

Chief Executive Officer, National Association of the Deaf

Kelly Buckland

Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD

Steering Committee Member, National Coalition of

Mental Health Consumer Survivor Organizations

Chester Finn,

President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Jenny McCarthy: making autism advocates the butt of comics

18 Jul

There are many reasons I have for being vocal about my objections to Jenny McCarthy. Public health, that’s obviously a big one. Making the rest of the world look at the “autism community” as a bit of a joke, well that’s another.

With a hat-tip to Brian Steinberg of Examiner.com, cue the comic strip “Soup to Nutz”.

Soup To Nutz

It isn’t like they don’t know who is most responsible for giving Jenny her platform either:

Soup To Nutz

Mr. Steinberg closes his post so well I just have to quote it as my closing:

Look, it’s one thing to make fun of the president or a prominent politician, or even make reference to a big-name movie star or starlet. But it’s quite another to take on a celebrity with a pet cause or peeve. Mr. Stromoski is on firm ground taking on Ms. McCarthy’s credentials. I just wonder if her fans will treat him courteously.

Congress says no to misleading autism information

16 Jul

Last year Mr. Mark Blaxill and Mr. David Kirby were given the privilege to misinform members of the U.S. government and their aids. Besides the fact that Mr. Blaxill has yet to retract his position (and pseudo-papers) claiming that autism is mercury poisoning, and the mish-mash that Mr. Kirby makes of science, there is the curious incident of the misquoted quote. Mr. Kirby made a serious error in his talk, misquoting a statement by the NIH, and was caught by a congressional staffer (an M.D. who was obviously well prepared).

It isn’t like this sort of inaccuracy was something new. Mr. Kirby was having a lot of difficulty with accuracy about this subject around that time. Epiwonk discussed in great detail how serious Mr. Kirby’s misinterpretations are here and here.

I don’t really understand Mr. Kirby sometimes. Epiwonk’s first blog post caused Mr. Kirby to admit he made a mistake and “pull” his blog post. Mr. Kirby posted a second, with this statement:

NOTE: My original post on this topic mischaracterized the 2003 CDC vaccine investigation as an “Ecological Study,” which it was not. I am reposting this piece to reflect that information accurately, but also to point out that many of the weaknesses identified in the CDC’s data and methods apply to the published 2003 “retrospective cohort” study, as much as they do to any future “ecological” ones. I regret and apologize for the error.

He apologizes for the error. He removed the direct link to the post from his main webpage. But, did he pull the blog post which even he declares was “in error”? Nope. It is still on the Huffington Post for all to see. Hence my quotes in the phrase “pull” his blog post.

What about the misquote in Mr. Kirby’s lecture? Well, last I checked it was still in the power point presentation he has on his website. No comment, no correction.

I’m sure Mr. Kirby is planning on being more careful this year. This year? Yes, he and Mr. Blaxill are being hosted to give another briefing to congress.

Last year, Mr. Kirby and Mr. Blaxill packed a small room. This year, they seem to be struggling to get people to fill even that small space. How do I know? Well, the good people at the Age of Autism blog have supplied us with a list of the people in the Congressional Coalition for Autism Research and Education (C.A.R.E) who will be attending, and who attended last year but not this year.

Want to run some stats? My unofficial and highly unscientific accounting based on the information on the Age of Autism blog:

C.A.R.E. has 11 offices attending who saw the briefing in 2008 returning in 2009.

However, C.A.R.E also has 26 offices declining the opportunity to observe Mr. Kirby and Mr. Blaxill for a second time. (including, oddly enough, Dan Burton)

Yep, you read that right. 70% of the C.A.R.E. offices who heard the briefing last year have decided to give it a pass this year. I actually doubt it is because Mr. Kirby was caught in a fabricated quote last year. My guess is that it’s just because Mr. Kirby and Mr. Blaxill basically had little accurate information of value to say last year, and little different to say this year.

Continuing with the stats:

C.A.R.E. has 8 offices attending for the first time in 2009.

C.A.R.E. also has 110 offices who did not attend in 2008 and are not attending now.

Summarizing these numbers, we see that, by far, most of C.A.R.E is not attending. ( I count 17 offices attending out of 153. Or, 89% are not attending).

Again, I don’t think it is because of Mr. Kirby’s lapse. The lack of a clear, scientifically sound message is much more likely the reason. Congress heard what Mr. Kirby and Mr. Blaxill have to say and there is no point in hearing it again.

Last year’s congressional briefing was the subject of three blog posts here:

Vaccines on the Hill. Vaccines on the Hill II. Vaccines on the Hill III.

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