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Thank you and farewell, Mel

12 Apr

Mel Baggs has passed on. Many may remember the name Amanda Baggs, same person. There is so much one could write about the impact that Mel had on the autism communities and the disability communities and humanity in general. I will not express the sadness I feel, but I want to write about two areas where Mel made a lasting change in my life.

Mel faced intense attacks over the years. Attacks that were mean, cruel, dishonest and worse. But Mel didn’t become mean in response. It was true leadership by example. Mel stayed advocating.

Mel found a partner in life. If memory serves, being together took a fight. My kid was very young then, but Mel helped me to see the future and to see my kid as a full human, not a perpetual infant. Helped me to plan for a time when I might need to fight for my kid’s rights to be a disabled adult. Adult.

I know these are brief comments. But make no mistake, these were powerful and important influences on my life.

I’ll miss you Mel.

Thank you Mel.


By Matt Carey

Lessons for the Day of Remembrance in the COVID19 era

3 Apr

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

It’s April. For some it’s “autism awareness month”. For others, we remember autistics and other people with disabilities who have been killed by parents or other caregivers.

It’s also April, the second month of “shelter in place” as the COVID19 pandemic brings the world to a halt.

There are two things which scare me more than anything else: losing one of my family and myself dying and not being here to provide for and protect my family. I’ve had to face these fears multiple times in the past. I’ve spent nights wondering if every text I got would be from my wife, who was at the hospital with one kid, telling me that kid had not made it. I spent a day with the misdiagnosis of a huge aneurysm in my brain. Just to name two experiences.

And now I face those fears again. I’m not very old, but old enough to be at risk. I look at my family and wonder about other risk factors. And I live in fear.

Let me focus on my autistic kid for now. It’s one thing in times of relative safety and security to say, “This kid is my whole world” (as are each an every one of my family). But when one faces the very real chance that in a year or two one or both of us may be gone, it gets very real, as they say. And as I face that reality, let me say a few truths:

My kid is not a “burden”. I don’t want that “burden” lifted by one or the other passing.

My kid is a joy. Sure, I want to live as long as I can to be there to support my kid. But I want to live as long as I can to spend time with my kid.

I’ve “walked in the shoes” of the parents who have killed their kids. I spend my life with a kid who is disabled, autistic, and in need of a very high level of support. I can not and I will not forgive or forget those who chose to kill their kids. I will forgive and support people who realize they can not handle the life they have and decide to let someone else take up the responsibility. I’ve traded emails with family members of murdered autistic kids, family members who would have loved to care for those kids. They walked in the very shoes of those who chose to murder. They cared for the same exact kids.

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.


By Matt Carey

What “flattening the curve” means to my family

19 Mar

We hear a lot about “flattening the curve” these days. Here’s what this means to me (click to enlarge):

If hospitals are overwhelmed, my kid will not be high priority. My kid is disabled. If there are a limited number of ICU beds, for example, my kid very likely won’t get one.

So, thank you to everyone who is helping out. Everyone who is taking this seriously. It’s very, very tough, I know. But this is literally life and death for people like my kid.

By Matt Carey

Lessons from COVID-19 for the “vaccine skeptic” community.

13 Mar

Allow me to start with a litmus test, if you will. Many, perhaps most, of you who call yourselves “vaccine skeptics”, or “vaccine risk aware”, or “vaccine safety advocates” are actually anti-vaccine. If my telling you this makes you immediately discount what I’m about to say–you are a coward and you would never face the facts anyway. It takes guts to question your beliefs, and I’ve seen little of that in your community. So feel free to move along.

That said, in the past few years the leaders in your community have been telling you things that are flat out wrong. Lies if you will. (does that make you too uncomfortable to keep reading? Read the above, re: cowardice). Here are a few of those lies:

Diseases can be deadly
The human immune system can not fight off any an all diseases. I’ve heard people like Del Bigtree claim that somehow our immune system is “divinely” endowed or designed, and we should be able withstand diseases. We can debate theology elsewhere. But this is just a lie. People of all faiths have died from diseases throughout history.

People don’t want “natural immunity” at the risk of death
There’s a strange argument that fighting off an actual disease is good for a person. That “natural immunity” (derived from actually being sick) is a good thing, and immunity from vaccines is bad.

Guess what. Most people don’t believe that. Why? Because it’s a lie. But leave out the lie part: the public isn’t with you on this. People want to not risk death in order to get some “natural immunity”.

Better sanitation and alt-med don’t protect
There is a strong alliance between the alternative medical community and the anti-vaccine community. Alt-med practitioners make more money when people are scared of actual medical practitioners.

Let me put it more simply and direct–there is a huge conflict of interest at play here. Alt-med people profit from the fear they produce attacking vaccines. Does that make you too uncomfortable to consider what I’m writing? That’s a sign of cowardice. Sorry to keep hammering this, but all too often I read “Look at so and so calling us anti-vaccine! They are just persecuting us! Don’t consider what they are saying!” Every time I read those comments or blog posts, I just think, “you are such a coward”.

That all said, COVID-19 is killing people across the globe. People in developed countries are dying. People die more often when the medical system is overwhelmed. Which means that actual medicine, not alt-med, is keeping people alive.

Other diseases are deadly too
COVID-19 is causing huge problems in part because it’s new. We are a virgin population without immunity. That’s why the death counts are so high. But other diseases also kill. And they kill in developed countries with good medical care. Example–people die in France from the measles. Yeah, measles kills. We have been lucky here in the US, precisely because vaccines have kept the infection rate down.

While we don’t have the experience of our parents and grandparents, who saw these diseases sweep the country repeatedly in their youth, most of us understand that diseases kill. They maim.

Consider the classic fake risk/reward argument offered by the anti-vaccine community: “vaccines are dangerous! Diseases are not! Natural immunity is good!”.

The public knows you are lying. You may believe this argument, but that just makes it a different kind of lie. That’s what “spreading misinformation” means. It’s a polite way of saying, “they believe this, but they are wrong, and there’s enough evidence to prove them wrong that it’s a lie”.

There isn’t a huge population waiting for you to lead them
In my years watching the anti-vaccine community I’ve often seen the theme that the public secretly accepts their messages.

We don’t.

Look what happens when measles breaks out. The public doesn’t want your message. The public doesn’t want to be led to a world where diseases run free.

The public isn’t ignorant
I often read how the anti-vaccine community thinks that they are educated and the public is ignorant.

The basics of vaccine science are simple. Basic germ theory. Most people get it.

The basics of disease are simple. People suffer and die because of diseases. They die. Just because you may, and your leaders certain do, deny that fact doesn’t make it not true.

And when people forget, there are groups that are willing to give out good, accurate information.

Summary
I could go on and on. But here’s the thing–your community is dangerous. Your logic is flawed. Your conclusions are wrong. These aren’t opinions. These are facts.

I’m encouraging you to take stock of your messages and your logic. I doubt you will. I know few of you will read this, and very few would get past the first paragraph. But, please, take a look at the world around you. Question your beliefs.


By Matt Carey

Judge Rotenberg Center’s shock devices banned by the FDA

5 Mar

One school and one school only uses electric shocks as a main part of their program. This is the Judge Rotenberg Center and the students are largely autistic.

Up until now.

The FDA has banned the devices.

ACLU COMMENT ON FDA’S FINAL RULE TO BAN ELECTRICAL STIMULATION DEVICES

From the ACLU statement:

“People with disabilities deserve the right to be supported with dignity and respect, and there are no circumstances under which they should be subjected to pain as a means of behavior modification.”

Here is a news article:

FDA bans shock device used on mentally disabled patients


By Matt Carey

Lydia X. Z. Brown : Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.

15 Dec

Lydia X. Z. Brown has an opinion piece in the Washington Post which, in my humble opinion, is well worth reading:

Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.Donald Trump’s attempts to discredit Greta Thunberg are the latest attempt to show autistic people can’t speak for themselves.

Here are the first two paragraphs:

When Donald Trump called Greta Thunberg “so ridiculous” and said she needed to “work on her anger management problem” and “chill,” it felt all too familiar. Like Thunberg, I am also an autistic activist used to people with more power dismissing me as angry, unmanageable and unlikable. These attacks come alongside insinuations that I never belong in the room and do not deserve the accolades I have earned.

Even when autistic people are honored, like Thunberg was when she was named Time’s Person of the Year, we are immediately discredited as children, reinforcing the ideas that children and autistic people alike have no agency and our work is illegitimate. For me, this has happened at every stage of my work as an advocate, since I drafted legislation on police training in Massachusetts when I was still in high school up to when I designed lesson plans on disability justice used in thousands of middle and high school classrooms through Amplifier’s We The Future art education project.

Lydia Brown is someone I respect a great deal. I’ve been following them for many years.

My autistic kid is lucky that advocates like Lydia are out there.


by Matt Carey

“I do believe sadly it’s going to take some diseases coming back…” — Jenny McCarthy 2009

5 Dec

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

Jenny McCarthy, 2009.

Jenny, you were as wrong about how people would react to outbreaks as you were wrong about vaccines and as you were wrong about fake autism cures.

Samoans a dying right now from measles. Maybe it’s time to step the f___ up and undo some of the damage you’ve caused? Maybe as in “it’s f__ing time you did this, Jenny”.

I can’t get the video from this story to embed, but it’s worth watching. Skip to 4:30s to see how the Somoan people are responding.

Anti-vax groups swamp Samoan government’s online pages during massive vaccination campaign.

I don’t know how in the hell you could have thought that outbreaks, kids dying, would make people believe you.

You’ve been hiding away for years, not facing the damage you’ve helped cause. Time to grow a spine and do something.

Matt Carey

Washington Post: How listening to autistic adults helped me understand and support my son

11 Nov

Shanon Des Rosa Roche, parent of an awesome young man and one of the people behind The Thinking Person’s Guide to Autism, has a piece in the Washington Post: How listening to autistic adults helped me understand and support my son.

Here’s a small quote from the piece.

Parents need to hear from people who have lives similar to what our children will experience. These adults can warn us about avoidable mistakes, and they can counter our assumptions about what it means to live a good life — even when that life is complicated.

Please go and read the entire piece. It’s not long, but it is very good.

There are a lot of people who could benefit from this article. Parents who recently found out their child is autistic are one group. Even parents who children have been diagnosed for some time, even those who run autism parent organizations, could greatly benefit from the ideals presented so clearly and succinctly in Shannon’s article.

Read the article and see for yourself what you take away from it.

By Matt Carey

Children with Autism Deserve Education, but I don’t support C.A.D.E.

17 Jun

There is a charity called “Children with Autism Deserve Education“. C.A.D.E or CADE for short. I ran across them a few years ago and saw some expenses in their tax forms that I felt were, let’s say, interesting. So they stuck in my mind and I decided recently to check into them again.

The name suggests a strong focus on education. I know many who will take issue with the use of “with” autism. That aside, helping autistic kids get access to education is a good thing. The vast majority of the money I donate to charity goes to exactly that cause–providing education opportunity for autistic kids.

The tax records indicate that C.A.D.E. spends a lot of money on non educational projects. On alternative medicine, for example. It looks like they’ve spent money on vaccines-cause-autism research. And if I were donating money just based on the name of the org, I’d not be happy with that.

To be clear, C.A.D.E. is public about their support for non educational projects. That “medical interventions” and research into causes are part of their agenda.

Before we dive into the details of where money is spent, let’s take a look at how they present themselves to the public. If one goes to the C.A.D.E. website and checks the “about” page, the first thing one sees is this:

About C.A.D.E.
Helping Children With Autism Reach Their Full Potential Through Financial Support For Evidence-Based Education And Therapy.

More and more children in the United States are diagnosed with autism. In fact, 1 in every 59 children was identified with autism spectrum disorder in 2014—up from 1 in 150 in the year 2000.

While opportunities for high-quality therapy and educational resources are increasing to account for this growing prevalence, intensive treatments are often well beyond a family’s financial means and many public schools don’t have the resources to provide them.

According to a 2014 study, the total lifetime cost of supporting an individual with autism is an astonishing $1.4 million in the United States. If an intellectual disability is also present, the total rises even more to $2.4 million. Education alone can cost a family an extra $8,600 per year.

We Believe That Children With Autism Deserve To Obtain The Most Effective Means Of Education.
C.A.D.E. Exists To Help Them Access It.

Through grants, C.A.D.E. helps fund evidence-based education, therapy and medical interventions for children with autism that don’t have the financial resources. Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.

From my perspective, this sounded reasonable right up the the phrase “medical interventions”. Education is a worthy goal. Therapy can include speech and language therapy, for example.

“Medical interventions” tells me that they are probably supporting alternative medicine. Many in the autism community promote alt-med and this is a common way that they phrase it when trying to seem more legitimate. But a casual reader might not realize that this phrase opens the door to donations being spent on “treatments” that are generally considered unproven or ineffective.

But keep reading the about page and towards the bottom of the page you find:

Our founders, board and volunteers have personal family experience with autism, and are deeply committed to ensuring that children are able to access the education and medical treatments they need to live healthy lives—as well as supporting organizations exploring the causes of and interventions for this epidemic.

So, yes, they are making it public that the money donated will not all go towards education. But consider further the phrase “supporting organizations exploring the causes of and interventions for this epidemic” sounds like the usual code in the autism parent community for “supporting research which tries to support the idea (failed idea) that vaccines cause autism”.

Two questions come to my mind when I read this. First, are they actually spending money on vaccines/autism research. Second, would they lose donors if this were made more clear in their public statements? Would, say, “Children with Autism Deserve Education and to be subjected to Alternative Medicine” get the same level of donations?

I am particularly suspicious of C.A.D.E. because I know that one of the board members is Jennifer Larson. Ms. Larson is prominent in the “autism is a vaccine epidemic” and the alternative medicine communities. She owns at least two businesses that provide alternative medical services (the Holland Center and Minnesota Hyperbaric). She donated $40k to former congressional representative and committee chairman Darryl Issa. At that time he was hosting hearings on vaccines and autism. She also founded the tiny Minnesota based “Canary Party“.An early version of the Canary Party’s website states:

American children are over vaccinated and over medicated, over fed, undernourished and have record levels of chronic illness and developmental delay.

Emphasis added.

We can get more information from the public tax records. The most recent tax year for which I can get records (tax forms for charities are public record) is 2017. Here’s their tax form for 2017. More specifically, here’s the schedule O for 2017. Schedule O is where charities list “grants and similar amounts paid”. It’s where you can find a lot about where they are spending their money, aside from operating expenses and salaries and the like.

Let’s take a look at the schedule O entries sorted largest grant to smallest:

First we have “family assistance for medical and therapy paid directly to the provider”. Said provider is the Holland Biomedical Clinic. And they note that the Holland Biomedical Clinic is owned by a board member. Which appears to be Jennifer Larson. The Holland Center provides both ABA (which can be considered educational) and alternative medical (biomedical) treatment. This entry specifically says “Holland Biomedical Clinic”. So my guess is that this wasn’t for ABA. To my knowledge, the Holland Center is a for profit business, not another charity.

This was the largest grant given out this year by C.A.D.E.: $15,282.

Next we have a grant for $10,000 to Ken Stoller, M.D. as “Family assistance for medical and therapy paid directly to provider”. Ken Stoller is well known in the alt-med and anti-vaccine communities. It seems odd to me that the amount is an even $10,000. Odd as in, did the the bills for a family actually come out to an even $10k? Even more odd that a doctor in San Francisco is getting a grant I thought were for local families in Minnesota. The famous name alt-med autism doctors do get patients traveling to see them. We don’t know what medical services were purportedly provided for this grant, but it seems unlikely that he could provide something not available in Minnesota. So, the question in my mind was whether this was a specific grant for specific families, or was this some sort of general support for Dr. Stoller?

The next “family assistance for medical and therapy paid directly to the provider” is to the Lovaas Institute for $5,390. This would be on target for the C.A.D.E mission, as the Lovass Institute is a provider of ABA services.

Another “Family assistance for medical and therapy paid directly to provider” is to “Grantee Name: Minnesota Hyperbaric. Grantee relationship: none.” Amount was $4,000. Minnesota Hyperbaric is, I believe, a business owned by Jennifer Larson (board member of C.A.D.E.) and housed within the same Holland Center noted above. Which if true would make the “grantee relationship: none” statement a bit problematic.

There is a $3,000 entry for “family assistance for medical and therapy paid directly to the provider” where the provider is listed as “Laidas”. I can not find who “Laidas” may be. I wonder if this is somehow a misspelling for Lovaas?

Next is Autism Recovery Foundation. Two entries for $2,000 total. The Autism Recovery Foundation is primarily focused on ABA. Yes, there are those who oppose ABA, but this is, in my opinion, spending funds on education. Note that Jennifer Larson is on the board. These appear to be described elsewhere in the tax form as “DIRECT SUPPORT TO ORGANIZATIONS THAT HELP FUND EDUCATION AND AWARENESS OF TREATMENT OPTIONS FOR AUTISM.”

Another “family assistance for medical and therapy paid directly to the provider” grant was paid to James Neubrander, M.D. for $1,410. Dr. Neubrander is an alt-med practitioner in New Jersey.

By the way, take a moment and check out his website. Watch the images that flash by and read the messages. It’s not pleasant at all.

The New Bridge Clinic received a grant for “family assistance for medical and therapy paid directly to the provider” in the amount of $1,190. I believe that is this clinic, which is another provider of alternative medical treatments. This is not educational.

Lastly we have “family assistance” paying rent for a family in need. Paid directly to Chohan Properties. For $1,180. While not educational, I wouldn’t have a problem with this.

A quick summary of the grants which appear to me to be for alternative medicine providers:
Holland Biomedical: $15,282
Dr. Ken Stoller (California): $10,000
Minnesota Hyperbaric: $4,000
Dr. Neubrander (New Jersey): $1,410
New Bridge Clinic: $1,180.

The total for Schedule O is $43,452
The amount paid for alternative medical providers appears to me to be $31,882. Or about 72% of the total grants.

72%

I would be very unhappy were I donor and found that out. It’s not illegal. It is, in my opinion, misleading. I’d think an org named “Children with Education Deserve Education” would be spending my donations on, well, education.

All the above is just for tax year 2017, the most recent where the information is publicly available. What about the other years? I went through the tax forms I could find going back to 2010. Here’s a summary table:

Who are they giving money to? Here are the top 10 projects, by money committed, from what I can see:

1) $56,000: The Autism Treatment Foundation of Minnesota, which appears to be this organization. Jennifer Larson is currently on the board. This org supports ABA for autism, and would be considered on target for “education”. From what I could find this appears to be something like a lobbying organization.

2) $22,000: Generature Rescue. Widely considered an anti vaccine organization. I’m unaware of any education projects they’ve been involved in. They are mostly involved in promoting the failed idea that vaccines cause autism and also promoting alternative medicine for autism. However, it struck me that in 2010 Generation Rescue made a big ($100k) donation to Andrew Wakefield’s “Strategic Autism Initiative” (Mr.Wakefield was the top in Time Magazine’s list of research frauds). In my opinion the SAI was set up to provide support for Mr. Wakefield after his ouster from Thoughtful House. This raises the question in my mind–did C.A.D.E. send money to Generation Rescue as a way of providing funds to Mr. Wakefield? Jennifer Larson is a known supporter of Mr. Wakefield.

3) $19,678: University of Northern Iowa. researchers DeSoto and Hitlan at the University were prominent in the “vaccines cause autism” scene for a few years. The work was poor in my opinion. Prof. DeSoto lists $80k in grants from C.A.D.E. for “Study of Autism among Somali Immigrants in MPLS, MN Area.” Her vitae does not list any publications. There was great interest from the anti-vaccine community in the Minnesota Somali community. Besides apparently accomplishing nothing, this expense by C.A.D.E. appears to have nothing to do with education.

4) $15,282: Holland Biomedical Clinic. This is reportedly owned by Jennifer Larson. The clinic offers alternative medical approaches. An initial visit can run $995, and alternative medicine is rarely covered by insurance.

5) Autism Recovery Foundation. Same address as the Autism Treatment Foundation of Minnesota. ABA based. Would be on target for donations to “educational” orgs, in my option.

6) $12,102. Unnamed medical therapy. Unclear what this was spent on, although it’s a good guess it was alternative medicine.

7) $10,000. Autism Resource Network. Looks like it was a store (autismshop.com). Which had a leaning towards the failed “vaccines-cause-autism” idea.

8) $10,000: Dr. Ken Stoller. Discussed above. Dr. Stoller is well known in the anti-vaccine community. And is in California, not MN.

9) $9,380: The Holland Center. Discussed above. Business reportedly owned by Jennifer Larson. Largely ABA focused, but also houses the Holland Biomedical Clinic and Minnesota Hyperbaric. One of the entries was for iPads. Why they were distributed through Ms. Larson’s business rather than directly is unclear.

10) $7,661: iPad purchase. iPads are often used as alternative communication devices and otherwise educational devices by people with disabilities.

There are a lot of expenses above which, again, I wouldn’t be expecting on donating to a charity calling itself “Children with Autism Deserve Education”.

One last comment. Above you will find this quote from C.A.D.E.: “Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.” I find that hard to believe. I count about $112k spent on program expenses from 2014-2017. So unless they spent a lot more money in the past 2 years, $500,000 seems like much more money than they’ve spent. Perhaps I’m missing something in the tax documents. I’ll provide them below.

C.A.D.E. fundraises with a run (the Autism5k) and also golf events.

One last topic is interesting here. Here’s a copy of an older form they used to apply for their grants. The CADE Medical & Therapy Grant Application. They specify some interesting requirements:

“These grants are for CADE approved physicians & CADE approved therapy programs.”

“I understand that my child is required to follow the GF/CF diet or SCD diet for the 90-day grant period if the medical grant is awarded and the diet is recommended”.

“I understand that an approved Doctor will be assigned to my child and that I have no choice in this matter and cannot change the assigned doctor. This doctor will be a specially trained for autism. ”

“If you are chosen for the CADE Medical or Therapy grant, you agree to the following:” which includes: “Implement ASD diet such as GF/CF or SCD for the medical grant ” and “Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed.”

First off, keep in mind that Jennifer Larson also helps run an organization called “HealthChoice.org”. Given that, I find the lack of choice in the above quote very ironic. You must follow a diet for 90 days. One must follow the doctor’s recommendation, even if one disagrees. The doctor is ” assigned to my child and that I have no choice in this matter and cannot change the assigned doctor”

Yeah, that’s health choice.

Second, they ask for a lot of information. Including one has to keep a log and take pictures/videos. I would be very worried if I were to see such an application that the org was thinking of some sort of study based on the kids going through the grant program. That would be highly unethical.

Under “Disclaimer” the application states:

If you are chosen for the CADE Medical or Therapy grant, you agree to the following:
• Implement ASD diet such as GF/CF or SCD for the medical grant
• Dropping out of the program once selected will make you liable for the following:
1. All postage costs
2. The fee(s) of 2(two) Medical visits (estimated at $750.00)
• Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed. 

All dollars for therapy grants go directly to the provider.

So, where the application previously stated that a diet is required if “recommended”, here the parent is accepting that it they will implement a diet. And, let’s say you think the medical professional isn’t working out for your kid, and/or the diet isn’t helping (or is even bad) for your kid. You get to pay back $750. Remember, parents are selected based on need. So $750 (which by the language reads as though it could be assessed even if you didn’t actually go to one or both of the visits) is possibly enough to force a parent to keep his/her kid in the program.

And, as we saw above, sometimes the grants are paid to clinics run by one of C.A.D.E.’s leadership.

As I titled the article, I believe strongly in doing more to provide better educational opportunities for autistics. But after going through all the above research, I wouldn’t send any of my money to C.A.D.E.. Sadly, this makes me wary of most charities. Especially small charities where it’s unlikely that there is much oversight.

Below are the tax forms for years 2010 to 2017 if you wish to check for yourself. If you find any mistakes in what I reported above, please let me know.

CADE_2017
CADE_2016
CADE_2015
CADE_2014
CADE_2013
CADE_2012
CADE_2011
CADE_2010

By Matt Carey

It is time to renew the Autism CARES Act

21 May

The Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2019) has been introduced in the House of Representatives and the Senate. The existing Autism CARES Act will expire this year, so a new bill is needed to continue the work.

Autism CARES is good for the autism communities. Autism CARES continues the government’s focus on funding autism research and coordinating research with nongovernmental groups. This work has been ongoing since the Combating Autism Act was enacted in 2006.

The bill has yet to come up for a vote. It has been gaining sponsors (85 in the House and 22 in the Senate). My senators are not yet cosponsors of the bill, so I sent them messages urging them to do so. It’s easy. You can find your House representative here and your Senator here.

The text of the bill can be found in the link: H.R.1058 – Autism CARES Act of 2019. It’s basically a continuation and update of the existing bill–which as I noted above expires this year.

If you are wondering what the bill does, the current law states (among many other things):

The Director of NIH (in this section referred to as the “Director”) shall, subject to the availability of appropriations, expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism spectrum disorder, including basic and clinical research in fields including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology. Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.

The current law also authorizes appropriations. Which means Congress says they are allowed to set aside a lot of money ($190M) for autism research, but doesn’t force Congress to actually put that in the budget. Still, it’s a lot better than most of the disability or disease communities have as a commitment.

Let me put that another way–in legislative language Autism CARES is a single disease specific bill. Leave aside the term “disease”. It’s a bill that supports a single community. Congress has long been pushing to move away from that. Autism has kept this status even while Congress has moved to restrict it. The way to insure that we keep this in place is to act. Let your legislators know it is time to support Autism CARES.


By Matt Carey