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ARC/UCP Action Alert: Act Now to Save Medi-Cal

23 Feb

Changes planned and proposed by the new government could significantly reduce the support for people with disabilities.

The time to act is now. Below is an email sent out by The Arc & United Cerebral Palsy California Collaboration. It is California focused but–you can do this from whatever state you are in. Call your Senators. Call your member of Congress. Let them know: they should vote NO on ALL medicaid cuts.

Act Now to Save Medi-Cal

Dear Developmental Disability Community Friends,

Adults with intellectual and other developmental disabilities overwhelmingly rely on Medicaid (called Medi-Cal in California) for their health coverage.

But that coverage is under serious, major attack in Congress. There are those who want to roll back the 2010 expansion of Medicaid coverage, which was part of the Affordable Care Act, and even cut back coverage that our community had before that.

One plan would give states fixed amounts of money (called ”block grants”) for Medicaid, meaning the state would have to try to find other money to cover the shortfall when the needs exceed the block grants. I think you know what a tough fight it is to get California’s legislature and governor to fund our community’s needs. If the federal block grant falls short and the state doesn’t fill the gap, it would mean people would go without health care.

Another plan would give states a fixed amount per patient, no matter how much care the patient needs. This is called “per-capita allocation.” Again, if the fixed amount falls short and the state doesn’t come up with the money to cover it, it would mean people would go without health care.

There are also plans to impose co-pays and deductibles and Medicaid patients, some of the poorest people in the country. And you can be sure that more bad ideas will surface before we’re done with this fight.

There are lots of people complaining about a lot of things to their U.S. senators and congressional representatives right now. We need to make sure our community’s voice isn’t drowned out.

Here are two things you can do right now:

1. Call Senator Dianne Feinstein, Senator Kamala Harris, and your own congressional representative. Click here to find their numbers and get some suggestions on what to say to them.

2. If your representative is having any public events, get some friends and go to them — and be prepared to talk. Again, identify yourself as part of the developmental disability community. If they are planning to vote NO on ALL Medicaid cuts, thank them. Sometimes we don’t thank our supporters enough. If not, ask them pointedly why not. Sometimes we don’t criticize our non-supporters enough, either.

As someone who worked for state legislators for a long time and got those calls and attended those public events, I can tell you that they sure do get a politician’s attention, alright.

I hesitate to direct you to this link because it’s highly partisan, and our community spans the whole political spectrum. But the tactics it suggests can work no matter where on that spectrum you are. In fact, it’s written by a bunch of Democrats who are copying the Tea Party. Please don’t think we support or oppose this group’s political agenda, because we don’t. But if you are moved to do more than the two steps I’m asking you take now, reading this is a good place to start.

Thank you for your advocacy.

Greg

P.S. One more thing. Please forward this Action Alert to everyone you know in our community. Now’s the time for all of us to get riled up.

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
916-52-6619

Robert Kennedy and Robert DeNiro hold a press conference. No one cares.

16 Feb

Robert Kennedy Jr. has been for many years pushing the failed idea that vaccines cause autism. He’s particularly interested in mercury–you know, that preservative thimerosal that was removed from infant vaccines but didn’t cause autism rates to drop. A while back he actually got the ear of President Trump, coming away with the claim that he would be appointed to run a vaccine safety commission. The Trump team pushed back a bit on that claim, but, seriously, what was Trump doing wasting his time with Kennedy? I can say one thing, as the parent of an autistic child: Trump is doing the autism communities no favors. None at all.

Kennedy held a press conference today, apparently renting some space at the prestigious National Press Club. In order to pull some attention, he had Robert DeNiro along (although DeNiro’s contribution amounted to “I agree with what Kennedy said”). Kennedy has long been short of facts. So he didn’t present any new facts, or even alternative facts today. Instead he pulled out another attention grabbing gimmick: he says he will pay a journalist $100,000 if said journalist can present a study that shows mercury in vaccines is safe.

Lacking in the offer is a definition of safe.

Say, for example, we define safe as per how Kennedy usually defines unsafe: is the rise in autism diagnoses due to mercury in vaccines? Well, there are many studies which show that mercury in vaccines did not cause the rise in autism (and, since this is the backbone of the “mercury causes autism” argument, that argument fails as well).

But Kennedy knows the studies. He’s already denied their results.

What he also knows is that California pulled thimerosal from vaccines a long time ago (2006 to be exact). Infants and pregnant women in California get thimerosal free vaccines. And the number of people diagnosed with autism has continued to rise ever since. Heck, that’s got to be worth at least $10,000.

He got more press than I expected. Not much but some. Here’s some examples:

Cause Celeb: Robert De Niro continues to question vaccines

Cause: Vaccine safety. Specifically the debunked link between mercury found in early childhood vaccines and autism, a claim the Centers for Disease Control and Prevention has unequivocally refuted

Robert De Niro and RFK Jr. have joined forces to push vaccine nonsense

De Niro, Bobby Kennedy son offer $100K for anti-vaccine journalism

This picture (from Buzzfeed if memory serves), pretty much sums it up.

bored-bobby

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By Matt Carey

A look back at the so called “CDC Whistleblower” story and how Vaxxed is misleading

10 Feb

A short while ago I was asked to speak on a conference call for Voices for Vaccines. The topic was the events that are behind (and misrepresented in) the movie Vaxxed. With Wakefield trying to bring his movie to Europe, and the fact that President Trump spoke with Robert Kennedy on vaccines and autism, I though an analysis might be worthwhile now. So, here’s an edited version of that talk.

I have written a great deal about these topics. Specifically the topics of Vaxxed and William Thompson. I will try to embed those links where relevant below. Until then, they are at the bottom of this article (in no particular order).

Let me introduce myself: My name is Matt Carey. I hold a Ph.D. in physics and have been an active researcher for 30 years. More importantly–I am the parent of autistic child. I take the question of whether vaccines cause autism very seriously.

When my kid was diagnosed I did what many do: I went online to find information. I found claim after claim that autism is caused by vaccines. As a researcher, I pulled papers and dove into the question. I also dove into online discussions, reviewing published studies and news. I’m still doing this. Even though the answer has come back time and again, there isn’t evidence that vaccines cause autism, I keep checking on many of the claims that come up.

So when the story that became the movie “vaxxed” first came out, I took it seriously and I started investigating the claims. It’s too important not too. I’ve followed the story since.

Having done this, let me start by avoiding the trap that the “vaxxed” team has set out. They have worked hard by limiting access to information to not only get their conclusion out, but to control how we discuss the topic.

Here’s how they describe their film:

An investigation into fraud on the MMR autism study at the CDC as revealed by Senior Scientist & Whistleblower Dr. William Thompson.

No. Just no.

Sure, fraud may be what they made a film about—but that isn’t the topic that is important. The important question, the one real advocates would focus upon, is whether they unearthed proof that vaccines cause autism.

The answer is simple and clear: NO.

Before I discuss my reasoning and the results that the Vaxxed team are misrepresenting, here is one of the few public statements made by William Thompson (the so-called “CDC-whistleblower” himself):

I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.

These are not the words of someone who thinks that vaccines have been shown to cause autism. They just aren’t. So, don’t take my word for it, or my analysis below. There isn’t proof of vaccine causation in this story.

If you want a very direct quote from Dr. Thompson on this point, here is another statement you won’t find quoted by the Vaxxed team:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

Put in simple language–no matter how you look at the data, it doesn’t show that vaccines cause autism.

What he’s saying there isn’t even that surprising. The type of study he’s talking about can’t—it just can’t—show causality. But that fact, and the fact that Thompson has made this statement, doesn’t stop the Vaxxed team from claiming the opposite.

These statements aren’t in Vaxxed. They aren’t discussed in the public appearances I’ve seen by those promoting the movie Vaxxed. They are in a statement that Thompson provided to Representative Posey. Mr. Posey read part of that statement into the public record–but not the very important parts quoted above.

Vaxxed is often billed as “the movie they don’t want you to see”. It’s pure hypocrisy given that there are important facts the Vaxxed team apparently doesn’t want you to know.

The vaxxed team apparently doesn’t want us talking about the fact that they haven’t unearthed evidence that vaccines cause autism. They seem to want us to just assume that they have evidence of causation and keep us talking about supposed fraud.

The fraud discussion is a diversion. As is much of the film. Again, the question that should be discussed is whether vaccines cause autism. And even their source, their so-called “whistleblower” isn’t saying there is a causal link shown.

The film Vaxxed and the activities by Andrew Wakefield’s team before and since has been from what I have seen largely about controlling the information so they can try to control the conversation. Rather than talking about the important questions, they want us to skip over that, skip over whether vaccines cause autism, and instead talk about parents’ stories, and claims of fraud.

I think it is important in discussions about these events to try to focus on the important topics and not let them get buried. And that’s why I bring the above points up first. That’s why I bring up those statements by Dr. Thompson. Statements which, as I noted, are not in Vaxxed. They do not get brought up by Wakefield’s team. And people should be questioning why such important statements are left out. From the beginning, they haven’t released documents and only given us partial information.

At this point, it’s worth posing the question–Why are we even asking again whether vaccines cause autism? To answer that, we need to now get into the narrative of the so-called “CDC-Whistleblower”.

This story revolves around a CDC researcher named William Thompson. Dr. Thompson was involved with a number of vaccine studies, but the story here centers on an MMR/autism study that was started in 2001. For this study, the CDC team chose to analyze data from an existing CDC autism study on Atlanta school kids—basically the prototype for the CDC prevalence estimates we see today. For that study the researchers added information on vaccines and other factors. The study was published in 2004 with Frank DeStefano as the lead author.

Dr. Thompson felt there were problems with the way the CDC handled this study and, years later, he reached out to Brian Hooker. Mr. Hooker is an autism parent, and a very vocal proponent of the failed idea that autism is a vaccine-induced epidemic. Thompson exchanged phone calls, emails and a number of CDC documents from the time of the study was being performed with Mr. Hooker.

Thompson raised two main concerns about the MMR study, and these are an important part of Vaxxed. The first concern was that there was an association found between the MMR vaccine and autism for African American boys. The second was that in a group the CDC termed “isolated autism”, that is to say autism with no other disabilities, there was an association with MMR and this was not correctly reported.

These points are important to Vaxxed, but not in the way a responsible advocate or documentary film maker would. Wakefield apparently wants us to believe that these are direct evidence that vaccines cause autism and they were hidden. The facts tell a different story.

Let’s talk about “isolated autism” first. In his written statement to Congressman Posey, Thompson stated:

In addition to significant effects for black males, we also found significant effects for “isolated autism cases” and for the threshold of 24 months of age. If we had reported the 24 month effects, our justification for ignoring the 36 month significant effects would not have been supported.In the discussion section of the final published manuscript, we took the position that service seeking was the reason we found a statistically significant effect at 36 months.

That’s sort of a long quote for this sort of talk, but I wanted to use his exact words before giving my own summary: Thompson basically said that the CDC team saw an association between autism and MMR for kids vaccinated by 36 months—and he acknowledges that they did report this. I’ll repeat that–they did report this. It wasn’t hidden. The CDC team attributed this to families who vaccinated their disabled children late. They needed vaccinations to be up to date for early start or special ed programs at age 3.

Thompson also claims that they saw an association between MMR and the isolated autism group vaccinated before 24 months, and that this means that the interpretation is wrong: the association can’t be driven by services seeking behavior near age 3.

The problem with that claim is that the CDC team did NOT find an association at 24 months. This is directly counter to what Thompson said and what Vaxxed The authors presented the 24 month data in the paper and there is no association there and—more importantly—there is no association at 24 months in the preliminary results Thompson provided in the documents recorded at the time of the study. Documents I made public and the Vaxxed team did not, even though they had them for over a year longer than I have.

I know that can be hard to follow in this sort of talk, but to put it simply: Thompson’s claim in this written statement and in what he apparently told Brian Hooker doesn’t match the facts. The facts in his own documents.

There is no substance to the “isolated autism” complaint.

Given that, what about the second argument, the one about the finding of an association between the MMR and autism found for African American boys? This is the finding that Brian Hooker presented in his now-retracted study. Based on the contemporaneous notes, yes, the CDC did find an apparent association between the MMR vaccine and autism in African American boys. As I mentioned earlier, Thompson himself has said this doesn’t mean that there’s a causal relationship. Now we can say even more: it was a spurious result. How can we say that? Because if that result were due to a true causal link between the MMR vaccine and autism, the autism prevalence in African Americans would be double that of Caucasians. And in study after study, that isn’t seen.

Let’s take an example. Here’s a recent CDC autism prevalence study. They state:

Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000),

African Americans are being diagnosed less often than non-Hispanic white kids. Less often. If the claim that Vaxxed is making were true, African Americans would be diagnosed twice as often.

It was a spurious result.

So in the end, both of the pieces of evidence that Vaxxed claims supposedly show vaccines being linked to autism aren’t really links.

Having addressed that, what about the claims of “fraud” that we keep hearing? Wakefield’s fraud claims are convoluted, and don’t hold up to scrutiny. Let me explain.

Before starting the research, the CDC team laid out an analysis plan, which Thompson and Wakefield also refer to as the protocol. This plan went through many revisions over a period of nearly 6 months. From April to September of 2001.

One of the claims Wakefield made in his first videos was that the CDC saw the result for African American boys and needed to bury it. So they supposedly abandoned the protocol and introduced a new part of the study where they used data from birth certificates. According to the story, this birth certificate group was introduced to reduce the number of children in the analysis and reduce the statistical power of the result.

That would have been very problematic if it were true, but it simply isn’t. The plan to use birth certificates was included in the very first analysis plan, months before they actually did any analysis. This is clear from the documents Thompson had. I know this because Thompson turned those documents over to Congressman Bill Posey, and Mr. Posey was gracious enough to give them to me on request. This is also made clear in the timeline that Thompson spelled out in his written statement to Congressman Posey.

Let me make an aside here—if you are starting to think, this is going by really fast, you are correct. It’s very hard to really go into the details here simply. Which is another reason why it’s important to focus on the point that there isn’t really evidence here that vaccines cause autism. That Thompson’s own words are that the results don’t mean that there’s a causal link, and that he recommends people not skip vaccines.

And we can go on with what Thompson actually said, rather than what people claim he said.

In all the material made public to date, there isn’t a statement by Thompson that fraud was committed. In fact, his notes at the time include the statement that “everyone has good intentions”.

He did feel that the African American result should have been made public. Apparently feels this very strongly. And felt that not making that public amounted to lying. But he also states, “Reasonable scientists can and do differ in their interpretation of information.” That’s not, “my coworkers are fraudsters”, that’s stating that there were scientific disagreements.

Scientific disagreement isn’t fraud.

Thompson also discussed an event where he says many of his team got together at the end of the study to decide which paper documents to discard. He makes a very strong statement that he felt this was possibly illegal and he kept copies of the documents.

Let me first point out something: I’ve worked with confidential documents my whole professional career. Back when most communication was paper, one would collect a great deal from each project. It was completely appropriate to order a confidential bin—which looks like a garbage can with a lock—and discard those documents not critical to keep.

Let me point out something else: I have copies of the documents Thompson retained. He gave electronic versions to Congressman Bill Posey, and upon request, the Congressman graciously let me have a copy.

There are about 1000 pages of documents. Many will claim 10,000 or even more, but it’s roughly 1,000 pages. And I can see no reason why at the least most if not all of those could not have been discarded. There are pages and pages of meeting itineraries. There are multiple versions of the protocol—the analysis plan for the study. While these are interesting to look over, they show nothing that indicates anything unethical. The analyses presented can all be recreated with the original data. Which was preserved and offered to any qualified researcher, and this was made clear on the CDC website.

One can also piece together the timeline from these documents, and in so doing show that the claim that the CDC team added the birth certificate study after finding problematic results is, well, just false.

And that’s only one of the claims one can check in the “whistleblower “ story, details that just don’t match with facts.
At this point it is worth noting that Wakefield’s team supposedly had these documents, or many of them, well before they went public with their PR effort. And, they have to my knowledge never made the documents public. They did not allow people to check their claims. I think that is very telling.

You can find the documents online. I put them online. When I got them I worked to digest them and put a discussion online as quickly as I could. And with that discussion I put the documents so people could check my claims. This is something Wakefield and his team did not do.

And with that, let me bring this back to the beginning: Vaxxed, the “cdc whistleblower”, however this effort is labeled, it isn’t about disclosing hidden information to bring the truth to people. It has been about controlling information to get a specific message out. As far as I can see, that message is “vaccines cause autism and don’t trust research that says otherwise”.

And the bottom line here is that this isn’t evidence that vaccines cause autism. It is very easy to get bogged down in all the details, all the fact checking of Vaxxed (believe me, I could go on much longer about the inaccuracies in the film and public statements by their team). But that diverts attention away from this simple message—this doesn’t show vaccines cause autism—and that diversion plays into the apparent strategy of their team.

If you want to read the William Thompson documents, here’s the link

The William Thompson Documents. There’s no whistle to blow.

Another William Thompson quote they won’t tell you: “I will say the Geiers were not right”

Here’s a statement by William Thompson that they won’t be quoting

The Hooker/Thompson conversations: were significant analyses omitted from Hooker’s paper?

The Brian Hooker/William Thompson conversations

“Statement of William W. Thompson, Ph.D., Regarding the 2004 Article Examining the Possibility of a Relationship Between MMR Vaccine and Autism”

Movie review: VAXXED

Todd Drezner: Cinema Libre Studio and “Vaxxed”

Wakefield responds to his film being pulled by the Tribeca Film Festival. And it’s very classic Wakefield

A look at the “Garbage Can Quote” in full context

Emily Willingham takes on the Tempest in a Trashcan

Andrew Wakefield’s CDC Whistleblower documentary trailer. Words can not do this justice.

Andrew Wakefield and Brian Hooker complain. Not honestly, but they complain

A new Autism Media Channel video. A chance to watch some sleight of hand

A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud
Harpocrates Speaks on: MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

Comment on: Expression of Concern: Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data

Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities

The world’s most important autism conference may have to leave the U.S. due to Trump administration travel ban

2 Feb

INSAR, the International Society for Autism Research, holds an annual conference for researchers around the world to gather and present the latest in autism related results. IMFAR (the International Meeting For Autism Research) has since it’s inception also been very inclusive of community members. Autistics, parents, providers of supports and therapies are all welcome at IMFAR.

The president of INSAR has put out message stating that the Society has to reevaluate their plans to hold meetings in the U.S.. That message can be read here, on the INSAR website. Here is part of the message:

As an organization, we must think carefully about whether to host future international meetings for autism research in the United States. As an international society, it would be inappropriate to hold the largest annual meeting on autism research in any country that restricts access to our colleagues worldwide.

As the Board of Directors of INSAR, we are unanimous in our denunciation of restrictive immigration policies that will impact researchers, students, and persons with autism and their families. The INSAR Board of Directors will be bringing these concerns to the attention of policy makers and the public. As members of INSAR, we encourage you to do so as well.

While it is an international meeting, IMFAR is quite often held in the U.S.. The most recent meetings were held in Baltimore (2016), Salt Lake City (2015) and Atlanta (2014), with the next meeting in San Francisco. Next year IMFAR will be in The Netherlands and then in Canada before returning to the U.S.. But you get the picture: the U.S. hosts this meeting quite a lot. Which means it is more accessible to American stakeholders and American researchers and it helps jobs and the economy in American cities.

But as an international conference it attracts people from around the world. When the U.S. suddenly imposes travel restrictions, people attending scientific conferences can be kept out. The next IMFAR is in May, meaning people have already made plans to attend.

Put simply, here is an example of a poorly thought out action that may cost Americans opportunities and money.

Another discussion of this can be read at Forbes, in an article by Emily Willingham: International Autism Research Society Denounces Trump’s Immigration Restrictions.

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By Matt Carey

Betsy DeVos, a potential disaster for the autism community

30 Jan

President Trump’s nominee for Secretary of Education is a woman by the name of Betsy DeVos. Ms. Devos has long been an advocate for alternatives to public education. She’s pushed voucher programs and charter schools. Both programs have generally left students with disabilities behind.

Here is one of the videos from Ms. DeVos’ hearing before the Senate HELP Committee. This one doesn’t even catch some of her more embarrassing statements.

If you watch this video, you will see that Ms. DeVos routinely refuses to answer important and direct questions. Would she enforce Federal law? Well, she didn’t even understand that the IDEA (Individuals with Disabilities Education Act) was Federal law. In many programs where students are offered vouchers, disabled students have to waive their rights under IDEA. Ms. DeVos was asked if she would support students being able to keep their rights–and she refuses repeatedly to answer.

There are a few catch phrases you will hear from her that basically amount to “I don’t know what I’m talking about but I don’t want to admit it.” When asked about IDEA she responded repeatedly that these decisions “should be left to the states”.

People often dodge these sorts of questions when they know their answers will be criticized (think of Trump’s “I can’t release my tax returns because I’m being audited” claim. It wasn’t true and now he’s confirmed that he has no intention of releasing them.).

I don’t have the time to go into more details, but she would be a major disaster for the disability community–obviously especially those still in school. Please look into this. If you decide, like I have, that she is not an education secretary who would benefit our kids, act. Call your representatives. Ask them to not approve her. It can make a difference. Here’s one example:

Keep Calling Your Representatives; It’s Working
Thanks to over 1,000 phone calls from concerned constituents, Sen. Heidi Heitkamp announced she would not vote to confirm Betsy DeVos.

Search news sites for discussions of Betsy DeVos. Find your Senator’s phone number and call. Make your voice heard.

I can’t make a comprehensive list of articles but here are two:

Here is a recent article:
Progressives launch last-minute push against Betsy DeVos, and conservatives counter with online ad campaign

And another:
What’s the worst that could happen with Betsy DeVos as education secretary? Two scenarios.

If you thought Donald Trump might have any priority for disability issues, think again

25 Jan

Right after Donald Trump was sworn in as president the website for the White House was drastically changed. While news stories focused on topics like climate change, much less attention was given to the fact that pages on disability issues also disappeared. Disability Scoop discusses this as Disability References Removed From White House Website.

Where Hillary Clinton had a focus on disability issues (she reached out to the disability community and had an actual disability platform), candidate Trump had no such focus. One of the memorable moments from Mr. Trump’s campaign was where he mocked a disabled reporter, but failed to show the integrity of admitting his disrespect when called on it.

There is a Trump apologist argument that says Mr. Trump wasn’t mocking the reporter. As one such apologist put it, Mr. Trump was just “doing a standard retard” (insulting and disrespectful, but that’s exactly what she said). I would welcome video of Mr. Trump making the same motions while mocking someone else.

Disability issues will likely not be a priority for this administration. Frankly, be prepared to see funding cuts and, at best, indifference from Mr. Trump.

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By Matt Carey

Donald Trump believes that “the education is flush with cash”. How did he get that “alternative fact”?

23 Jan

Donald Trump was inaugurated last Friday. His speech was overall very poor, but one statement stood out to me above all the others. A statement which is not getting much (if any) press:

But for too many of our citizens, a different reality exists: mothers and children trapped in poverty in our inner cities; rusted out factories scattered like tombstones across the landscape of our nation; an education system flush with cash, but which leaves our young and beautiful students deprived of all knowledge; and the crime and the gangs and the drugs that have stolen too many lives and robbed our country of so much unrealized potential.

Emphasis added.

I don’t think anyone who actually deals with the education system in America would consider it “flush with cash”. That said, no one involved in special education would every say such a clearly false statement.

We absolutely are not serving our students, but this is because our education system is woefully underfunded. My own district cut back on many school days a few years ago when California cut the funding sent to districts. Guess what, when funding returned, the district didn’t restore the days we lost. We have about 10 education days fewer than before the budget crunch.

And that’s just in general. Special Education, since the first law in the 1970’s, was supposed to come with 40% of the costs covered by the Federal Government. OK, they said a “maximum” of 40%, but the Federal government has never come close. Estimates are that the contribution is about 17%.

These are the disabled children of our country. Does “America First” mean, “non disabled American’s first”, Mr Trump? Or will you be the one who finally corrects this injustice? That’s going to be hard to do if you think that schools are “flush with cash”.

You’ve come down from your tower to live in a mansion. One walled off from the world. And you surround yourself with people who, like you, don’t understand the experiences of the majority of Americans. And when you make statements like “flush with cash”, it shows.

I’ll be honest, one disappointment with Mr. Obama’s administration was his failure to live up to America’s commitment to people with disabilities, including funding Special Education. How about you prove you can do better than Mr. Obama–don’t tell us that school systems are “flush with cash”, make them flush with cash.

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By Matt Carey

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How Neurotribes made the Holocaust personal for me

14 Nov

I firmly believe that all people are my people. That I have to accept that my people were both the victims and the villains of history. I weep for my people who have suffered, and I feel shame for the actions of those who perpetrated those crimes.

I firmly believe this. Now, it’s one thing to say, “the people who suffered in the Holocaust were my people” and to feel that very real pain. But, as I found out, there is a whole different level when it really becomes personal.

And that’s what happened when I read Steve Silberman’s Neurotribes. Actually, it happened when I Steve was writing the book and shared some of his research with me.

You see, I am not Jewish. I am not Roma. I am not gay. My disability is not major. In short, I am not any of these or the other peoples targeted by the Holocaust.

I am, however, the father of a child who would never have made it through the Holocaust. And it never really struck home until Neurotribes.

Steve lays out in his book how the framework for the Holocaust was built starting with one person. A disable child. A disabled child in a time when the culture (and not just in Germany) made having a disabled child a shame for a family. A burden. Someone to be rid of.

Generally, being “rid of” meant institutionalization, although there appears to have been an unofficial euthenasia program going on in maternity wards. In 1939, one set of parents took the next step: they asked their doctor to “put to sleep” their disabled child. Years before a researcher had surveyed parents of disabled children and found that many would approve of their child’s death, but didn’t want to officially know. This step was something different. His own parents asked for his death. There was no law that would allow that, but in approving this child’s death, the legal framework was created that would grow into the murder of millions of people.

Let me pause for a moment here. I can’t read that, hear that, think about that and not see my kid’s face. Not see the look of absolute trust, of love, that I see in that face every day.

And think of betrayal. And think of the face of kids as they were taken from their families. The faces of kids as they landed in horrible places before their deaths. Faces like my own child’s face.

It’s horrible, absolutely horrible, to think about the atrocities of the Holocaust. Those who died have been and always will be my people. But, yes, this makes it more personal. Much more painful to me. I wish I were a better person and didn’t need that personal connection to feel this pain.

Steve called me at one point when he was writing his book. He read me some of the material he had found, about how children like mine were so disregarded that their own parents gave them over for death.

I went silent for a long time. Not because I was being solemn, but I literally could not speak. My child’s face. That’s all I could think of. Love. Trust. And, yes, betrayal. A look I can, thankfully, only imagine.

We will never let this happen again. Of course I believe in that. Strongly. And I weep for the fact that, yes, genocide has happened in my lifetime and, yes, my America has not acted vigorously. I have not acted vigorously. But with the story of Gerhard Kretschmar, my connection goes beyond belief. It now goes to my heart and soul. Again, I wish I were a better person and it didn’t take his story to drive this home so deeply.

—
by Matt Carey

Bernie Marcus was one of Trump’s biggest supporters. Will that help the autism communities?

11 Nov

Even though Donald Trump reports that he’s very wealthy, he did take in a lot of money to to support his presidential campaign. I checked who the large donors were to the Trump campaign and was surprised to see that one of the top donors was the Marcus Foundation. That appears to be Bernie Marcus, founder of Home Depot. He came out a while back in vocal support of Donald Trump (Why I Stand With Donald Trump).

Bernie Marcus also founded the Marcus Autism Center, and if memory serves, jump-started Autism Speaks with about $25M.

Now I am not a supporter of Donald Trump. In fact, I believe Mr. Trump is quite bad for the autism communities. Given that, I have this hope that as a big donor, Mr. Marcus might get some time with Mr. Trump and might be able to advise him on a few topics.

For instance, Mr. Trump once suggested that radio show host Michael Savage should head the National Institutes of Health. Mr. Savage is on record as saying:

In 2008, he said nearly every autistic kid was “a brat who hasn’t been told to cut the act out” and said “there is no definitive medical diagnosis for autism.”

One guesses that Mr. Trump wasn’t serious but was trolling for publicity. But, just in case, someone should tell Mr. Trump that Mr. Savage is a rather poor choice for NIH head. I mean, really, it’s a $31B concern. Not something you pass off to a guy with no experience, no understanding of medicine and research, and who tells callers to “get AIDS and die”.

If memory serves, the Autism CARES act comes up for renewal towards the end of the Trump presidency. As someone who has supported funding for autism research, perhaps Mr. Marcus could put in a good word with Mr. Trump.

Perhaps we should just step back a bit and ask that perhaps someone could suggest to Mr. Trump that having a policy on disability–any policy–might be a worthwhile thing to consider?

Reading Mr. Marcus’ statements of support for Mr. Trump, it appears that he takes issue with the Affordable Care Act. Perhaps Mr. Marcus could explain to Mr. Trump that many autistics and autism parents rely on this new insurance structure in the U.S., and they can’t afford medical health savings accounts. That any restructuring should take the needs of our most vulnerable into account.

A while back Mr. Trump tweeted that he believes in the failed idea that autism is caused by vaccines. Mr. Marcus, who actually had access to real researchers on the topic, has stated:

“Everything that comes back is the same,” he said. “They cannot find any connection between immunization and autism.”

People are going so far as to claim that Trump took time out of his busy campaign schedule to sit down and talk with none other than Andrew Wakefield. Perhaps Mr. Marcus could talk to Mr. Trump, one billionaire to another, about just how much weight to give to Mr. Wakefield (in case you are wondering–the answer is none. Give him no weight).

Sorry to end on that whole Andrew Wakefield thing. Wakefield is a sideshow act in the autism story. Heck, he’s the understudy to the sideshow. But, he’s also a sideshow that has caused more damage to the autism communities than anyone in recent memory.

Mr. Trump has built his image as someone who shoots from the hip and believes his instincts. Perhaps Mr. Marcus could step in and offer some guidance to Mr. Trump’s instincts. As least as far as autism is concerned.

—
By Matt Carey

Donald Trump in language some autism parents will understand: Train Wreck

8 Nov

I should stop being surprised by my fellow autism parents–those who still cling to the idea that autism is a “vaccine epidemic”. I shouldn’t be surprised that they support Donald Trump. Trump has said he believes the failed vaccine-causation idea. So what if he’d be horrible for the future of our community, Trump says what those parents want to hear.

So, let’s just put this in language those parents will understand:

Donald Trump is a Train Wreck.

“Train Wreck” was a common phrase used to describe autistics 10 years ago. Perhaps the most prominent voice was a guy named Rick Rollens, autism parent and believer in the idea that vaccines cause autism. When people talked about the fact that many autistics are undiagnosed, Rollens responded “Missing child with autism is like missing a train wreck”. Thank you Kathleen Seidel for getting Rollens to stop that.

Now back to Donald Trump: missing the fact that he would be terrible president is like missing a train wreck. Let’s leave out the fact for now that he’s proved himself to be completely unfit for the main duties the president would take on with his childish outbursts and lack of self control, let’s just consider this fact:

He has no disability policy. Further, we can expect nothing from him. He has shown himself to be an arrogant ableist; a man who mocks the disabled.

Trump has no backbone. No guts. It takes guts to admit a mistake and apologize. Trump never will. Sounds a lot (LOT) like the proponents of the idea that vaccines cause autism (looking at you, Andrew Wakefield). When called out for his attack on a disabled reporter, Trump responded that the reporter should apologize (no, seriously, he did!), and further stated:

Mr. Trump stated, “Serge Kovaleski must think a lot of himself if he thinks I remember him from decades ago – if I ever met him at all, which I doubt I did. He should stop using his disability to grandstand and get back to reporting for a paper that is rapidly going down the tubes.”

That press release on Trump demanding an apology was one of the 10–ten!–hits on his website for the search term “disability”. None of those hits are relevant to a better life for my kid.

This is the guy you “vaccines-cause-autism” people want making policies on disability?

Contrast this with Hillary Clinton. 336 hits for “disability” on her website. She’s actively campaigned on disability issues.

But, hey, Trump says you aren’t chasing a failed idea on vaccines. So promote him. Trash your kids’ futures for a chance to hear someone important say, “I, a person who ignores science, facts and anything else I disagree with, think vaccines cause autism. Who needs research when I have twitter?”

I know the “vaccines-cause-autism” groups shy away from the word “acceptance”. We live in a world where acceptance has already dramatically changed the lives of people with disabilities. Want to go back to a world where you can’t send your kid to school? Because Special Education came about due to acceptance: accepting that people with disabilities have rights. Want to go back to a world where you parents can’t take your kid in public? Where stores and restaurants can deny you service because you have a disabled kid with you? Where adult housing means “so you didn’t institutionalize your kid when they were young, so now you can pick one”?

Progress will be made by people who accept people with disabilities. Progress will be lost when people who don’t accept people with disabilities make the choices.

Who is Donald Trump if not a man who has made “othering” a principle part of his campaign? Othering is when you treat another person or group based on how they are different than you, rather than on your common humanity.

Trump’s immigration policy? Othering.

Trump’s policy towards minorities? Othering.

Trump’s plan to roll back marriage equality? Othering.

But, let’s accept that so we can have someone say, “ignore data. Ignore facts. Vaccines cause autism.”

Let’s vote someone in who would gut access to health insurance for many in our community. Everyone has risks of serious medical conditions. Autistics even more so. Heck, that’s one of the “vaccines-cause-autism” community’s favorite talking points. The Affordable Care Act gave access to medical insurance to millions of people who didn’t have it–and that includes many, many autistics.

But let’s take that away. Let’s go with Trump’s plan for medical health savings accounts. A plan that basically says, “do you have enough money to play for medical expenses? Great, here’s a tax break for you.”

Does that sound like an insurance program friendly to people with disabilities? Here, let me answer that for you: NO!

Donald Trump is a train wreck for the disability community. The fact that we have autism parents supporting him is just another example of how the failed vaccine idea has turned many potentially useful advocates down a fruitless and destructive path.

I am so glad this election is almost over. But the serious problems we have as a country will remain, including a vocal contingent of autism parents who will take us to self-destrcution in their one-(failed)-issue voting.
—

Matt Carey

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