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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

PBS NewsHour: What the candidates offer to Americans with disabilities, a growing voting bloc

4 Nov

The PBS NewsHour has a segment up about the upcoming U.S. election and the disability community.

Unlike in past presidential contests, disability is something both campaigns have addressed this cycle, if sometimes inadvertently. More than 35 million Americans with disabilities will be eligible to vote, making up almost one-sixth of the electorate. Judy Woodruff gets views from both Clinton and Trump supporters on how they’re voting.

Unfortunately, wordpress.com won’t let me embed the video, so here is the link:

http://player.pbs.org/viralplayer/2365881917/

The NewsHour does a good job of actually bringing in the viewpoints of people with disabilities, including an autistic young man who communicates his thoughts on this topic through a letter board.

The NewsHour also does a good job of bringing in both sides of the discussion: people with disabilities who support Clinton and who support Trump.

That said, Donald Trump is clearly a bad choice for the disability communities. Given what a disaster he would be as a president in general, his disability policy (or, lack thereof) and respect for people with disabilities (or, lack thereof) are sometimes lost in the noise of this election. But make no mistake, Donald Trump is just flat out bad for the disability communities.


By Matt Carey

Dr. Joshua Gordon Appointed as New IACC Chair

25 Oct

The Interagency Autism Coordinating Committee (IACC) has just announced a new chair, Joshua Gordon. This follows the pattern of the IACC chair being the same as the director of the National Institute of Mental Health (NIMH).

Here is the announcement just sent out:

Joshua Gordon, M.D, Ph.D., who was appointed as the Director of the National Institute of Mental Health (NIMH ) in September 2016, has been appointed as the new Chair of Interagency Autism Coordinating Committee. Prior to joining the NIH, Dr. Gordon served on the faculty of Columbia University’s Department of Psychiatry from 2014-2016, where he used his training in psychiatry and neuroscience to combine laboratory-based studies examining mouse models of human psychiatric illness with clinical practice and teaching in general psychiatry. His expertise in neurophysiology, or the study of patterns of electrical activity in the brain that underlie behavior, has allowed him to investigate features of the neural circuitry that underlies mental health conditions such as schizophrenia, anxiety, and depression. He earned his B.A. degree in Biology from Washington University in St. Louis, and his M.D./Ph.D. from the University of California at San Francisco. He did his residency and fellowship in Psychiatry at Columbia University/New York State Psychiatry Institute. While teaching and conducting research at Columbia University, he also directed Neuroscience Education for Columbia’s Psychiatric Residency Training Program. Dr. Gordon has received several awards and grants for his research, including an IMHRO Rising Star Award, two NARSAD Young Investigator awards, an APA-GlaxoSmithKline Young Faculty award, and research grants from the National Institute of Mental Health. In his role as NIMH Director, Dr. Gordon oversees the lead federal agency for research on mental health disorders and conditions. With an annual budget of approximately $1.5 billion, NIMH supports more than 2,000 mental health and neuroscience-related research grants and contracts at universities and other institutions across the country and overseas. In addition, the NIMH intramural research program supports approximately 300 scientists who work in laboratories at NIH. The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure.

The time is NOW–please give the IACC input on the Strategic Plan

6 Jul

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.

Why?

Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.

1%.

That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?


By Matt Carey

California budget battle to restore disability services–WE WON!

17 Mar

My apologies for not posting this right away. For those who have been following the battle in the California Legislature to restore some of the lost funding to disability services, WE WON!

OK, we started out trying for a 10% increase and got 7.5%, but this is a heck of lot better than when we got nothing in the new budget.

The ARC and United Cerebral Palsy California Collaboration spent a lot of time getting support for this and deserve a lot of thanks from our community. The letter announcing the final decision is below.

Dear Friends,
The Assembly and Senate just passed the bills to save our community services. The bills now to Governor Brown for his signature, which is certain.
As Assembly Speaker Toni Atkins said, “The passionate advocates for this funding should be proud of their persistence” – two years of persistent, vocal, united community advocacy.
The bipartisan vote on the key bill to provide the funding was 28-11 in the Senate and 60-16 in the Assembly. To find out how your assemblymember voted, clickhere. The Senate vote isn’t up yet, but the 28 “aye” votes were all the Democrats and two Republicans, Senator Huff and Senator Cannella.
If your senator and/or assembly member voted “aye,” please call them now to thank them. Click here to find them. If you talked to someone in their office before, call that person and let them know we don’t just complain, we thank them when they deserve it. And save their name and number; there will be more fights.  
If your senator or assembly member is among those Republicans who for one reason or another felt they couldn’t vote for it, don’t hold it against them! The Republicans’ vocal support for months was a big reason why we got this far. And if they had tried to stop their fellow Republicans from voting “aye” today, they probably could have stopped them, which would have blocked the bill — but they didn’t.
This isn’t the last fight. As Assemblymember Mark Stone said to all his colleagues who voted for the package, “Stay with us next year, the year after that, the year after that, to protect this particularly vulnerable community.”
(Actually, we can’t even wait till next year. Today’s action will, for the most part, stop the deterioration of our community services, but we have some gaps to try to fill in the budget that will get adopted in June. Stay tuned.)
But for now, it’s time to celebrate.
And thank you for your advocacy.
Greg
 
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814


By

Matt Carey

California Legislative Action Alert: The Vote to Save Our Services is Set for Monday!

26 Feb

The California developmental disabilities community has been fighting a long and hard fight to regain lost ground in support for services. Basically, the budgets keep leaving us out and with inflation we keep losing ground.

The budget support is coming up for vote on Monday. I know I’ve asked many times for calls, faxes, emails, etc., but with luck this is the last time. Make it count–make your needs heard. Details are below in a letter from Tony Anderson of the Arc California and the Lanterman Coalition.

The Vote to Save Our Services is Set for Monday!
 
 
Dear Friends,
From everything we hear, we’re going to win in both the Senate and Assembly on Monday! We appear to have the two-thirds, bipartisan majorities we need to pass the compromise agreement to save our community services.
But just be safe, we’re asking everyone to make two more calls before noonMonday – one to your state senator, and one to your assembly member. Click here to find who they are.
As usual, if you already have talked to someone in your senator’s or local office, call him or her. Otherwise, call their Capitol office in Sacramento.
The message is even simpler than usual – just give them your name and address, and ask them to please vote yes on ABx2-1 and SBx2-2 to save ourt developmental services. There’s no need for confrontation at this time, we just need the policymakers to know we are watching close and we want their vote on Monday.
As we acknowledged earlier, the agreement doesn’t achieve everything needed – our community is going to need to stay united to fight for the rest iof what we need in the months and years ahead — but it is a critically important step to provide relief and recovery.
Please make two calls before noon Monday.
And thank you for your advocacy!
Tony
 
Tony Anderson
Executive Director, The Arc California and
Chair, The Lanterman Coalition
1225 Eighth Street, Suite 350, Sacramento, CA 95814