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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

Trump is only the latest charlatan to use the anti-vaccine community

15 May

When Donald Trump was running for president (has he ever stopped running for president and started governing?) the anti-vaccine community threw full support behind him. They were excited because here was a candidate who publicly accepted and promoted the fake and damaging idea that vaccines cause autism.

Before running, Trump supported the idea that vaccines cause autism in twitter. During the campaign he stated his support for this failed idea clearly in a debate. So it’s no wonder that the anti-vaccine community backed him.

Then, a few weeks ago Trump said this, in response to the recent measles outbreak:

“They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots.”

That didn’t sit well with the various anti-vaccine groups. But allow me to take a moment to look at the viewpoint during the campaign. In specific, think about this–while campaigning did Donald Trump appear to be a candidate who would do well by the disability communities? Would someone like my kid benefit from a Trump presidency?

Clearly not. It’s not even a close question. And yet, even autism-parent anti-vaccine activists were pro Trump. Even though life would be harder for their kids after Trump. Even though there would be less support for their kids. Even though Trump would heighten stigma of disability.

One would think that parents of disabled children would run to vote for anyone else. Anyone who even paid lip service to supporting their children.

But the anti-vaccine autism parents didn’t. And I wasn’t surprised.

These are the same parents who:

chelated their kids (even though autism looks nothing like mercury intoxication, could cause harm and in at least one case did cause death)

dumped synthetic chemicals mislabeled as as “supplement” on their kids’ gluten free waffles.

promoted bleach enemas for “treating” autism

injected children with filtered urine

chemical castration of disabled children as a purported “cure”

The list goes on and on. But what do all of the above “therapies” have in common? OK, what do they have in common besides being bogus? They are all promoted by people who say vaccines cause autism.

So I wasn’t the least bit surprised that the anti-vaccine autism-parent community backed Trump. Not for a moment.

Remember back during the campaign when JB Handley (anti-vaccine activist founder of the Age of Autism blog) wrote Trumps Stands with my Son, I Stand with Trump

In it he stated:

But, I will make the point to you anyway: Donald Trump is the best thing that has happened to our kids in a very long time and I hope we can all lay down our issues and stand with him.

Because Handley is a “one issue voter” and that issue is the (failed) idea that vaccines cause autism

Did it matter that Trump had no plan for supporting people with disabilities?

Did it matter that Trump openly mocked people with disabilities?

Did it matter that Trump didn’t have the backbone to actually apologize for such a crude attack, stigmatizing disability?

Did it matter that Trump was pushing to remove the Affordable Care Act, which has allowed many autistics to get medical insurance? As part of that push Trump wanted to remove coverage for people with pre-existing conditions? One would think that pre-existing condition coverage would be a priority for Handley and the anti-vaccine community.

Did it matter that Trump was planning to gut funding for support services for people with disabilities?

Or, to put it simply, did the anti-vaccine community actually put people with disabilities in into their decision to support Trump? No. Not even close.

Trump said vaccines cause autism. And with that Trump got their vote.

Did Trump ever stand with any autistic? Anyone’s child? Anyone’s son? Nope. Trump stood with the anti-vaccine activists themselves.

And now Trump has abandoned them. It may only be for now. But the anti-vaccine community isn’t large enough and the sentiment against them is rising.

Here’s a response to Trump from Kim Rossi at the Age of Autism blog:

From an MSNBC report yesterday: President Donald Trump commented on the recent measles outbreaks, saying that people “have to get their shots” and called vaccinations “important.”

Will the First Lady share her children’s vaccination status, please? We would have like to have seen the Obama girls’ records too. No partisanship here at AofA. Both sides of a rotten apple with a pharma profit core.

Trump is now part of the “rotten apple with a Pharma profit core”.

No partisanship, eh Kim? I guess you finally realized that being a charity (the Age of Autism converted to a charity a few years ago–before the election) actually means having to follow the laws imposed on charities. Like abandoning the clear partisanship you showed in promoting Trump’s candidacy.

So Kim…JB…and the rest of you: Trump fooled you. Did you stop for a moment and think, “wow, I can be fooled. I wonder who else has fooled me in the past and who is still fooling me now?”

I doubt it. And that’s too bad. You all could do a lot to undo the harm you’ve caused.


By Matt Carey

Some of the Possible changes to the Affordable Care Act that will hurt the Autism Communities

24 Feb

One of the major goals of the new American government is the “repeal and replacement” of the Affordable Care Act (also known as ObamaCare). So far we haven’t seen a clear idea of what “replace” will mean. Some features of the ACA have been very helpful to our communities: helping more people obtain healthcare insurance and eliminating the ability of insurance companies to deny coverage based on pre-existing conditions, to name but two.

NPR.org has an article that goes into some other questions about what could change:

GOP Considers Trimming Health Law’s 10 Essential Benefits

Here are a few points that stand out:

Habilitative services

The law requires that plans cover “rehabilitative and habilitative services and devices.” Many employer plans don’t include habilitative services, which help people with developmental disabilities such as cerebral palsy or autism maintain, learn or improve their functional skills, via speech or occupational therapy or other support services. Federal officials issued a regulation that defined habilitative services and directed plans to set separate limits for the number of covered visits for rehabilitative and habilitative services. Those rules could be changed.

“There is real room for weakening the requirements” for habilitative services, says Dania Palanker, an attorney and assistant research professor at Georgetown University’s Center on Health Insurance Reforms, who has reviewed the essential health benefits coverage requirements.

Occupational therapy and speech therapy are very common, especially among very young autistics.

Mental health and substance use disorder services

The health law requires all individual and small group plans to cover mental health services and treatments for substance use disorders. In the regulations, the Obama administration said that means those services have to be provided at “parity” with medical and surgical services, meaning plans can’t be more restrictive with one type of coverage than the other regarding cost sharing, treatment and care management.

“They could back off of parity,” Palanker says.

Mental health parity is how other therapies for autism, including ABA, are funded.

Medicaid expansion is also a big target. Medicaid expansion is how health insurance was delivered to many people who could not afford it before.

Fewer people will be insured going forward. The position of at least one Republican (speaking today at CPAC) is that is a good thing. That means more people have exercised their choice. Unfortunately, that’s not the way things work for those in the disability community, where many are under- and un-employed. We are talking about people whose choice is to have healthcare insurance and who may not after the overhaul of the Affordable Care Act.

As an aside–medicaid also provides a lot of funding for services for people with disabilities. The government currently has committed to pay a set share of the costs of these services. There are plans to “block grant” medicaid, which is a way to limit the amount the government pays. If implemented this will reduce the quality of life for people with disabilities a great deal.

There are major changes possible that could affect people with disabilities. This is the time for parents of those who can not self-advocate to step up and be advocates. This is the time for self-advocates to self advocate.


By Matt Carey

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

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.


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.


By Matt Carey