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I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless.

26 Feb

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

Robert Kennedy (RFK Jr.) is running for president. He failed to gain the Democratic Party nomination and is now running as a third-party candidate. Since the beginning of his campaign, he’s faced criticism for being anti vaccine and anti-science. As someone who has watched Mr. Kennedy for nearly two decades I will agree: he is, indeed, anti-vaccine and anti-science. But that’s not why I am strongly against the idea of him being president. I oppose his bid for one reason:

He’s gutless.

Let me explain.

Long before Mr. Kennedy reached national prominence with his myriad of bad ideas during the COVID-19 pandemic, he was well known in the anti-vaccine autism-parent community. He was probably most famous for pushing the failed idea that mercury in vaccines caused an autism epidemic (an idea he still won’t abandon). And this is where many discussions focus on how his actions are anti-science and anti-vaccine. But to me, I hurt for the harms Mr. Kennedy’s advocacy has caused autistic people and the autism communities. One can say, “his anti-vaccine views have caused harm to public health”. One would be right. But, the anti-vaccine movement has long used autism and autistic people as the hammer with which they attack vaccines. And, to quote Sancho Panza in Man of La Mancha, “Whether the rock hits the pitcher or the pitcher hits the rock, it’s generally bad for the pitcher”. Being the weapon of choice for attacking vaccines has caused increased stigma and allowed charlatans to sell fake “cures” for autism which range from useless to abusive.

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

For decades there have been regular autism-parent conventions focused primarily on two things: promoting the idea that vaccines cause autism and promoting fake “cures” for autism as a vaccine injury. And Mr. Kennedy has been prominent at these conventions, serving as a keynote speaker.

Mr. Kennedy speaks primarily on the idea that vaccines cause autism (they don’t). He’s well respected as someone who has been involved for decades in this arena. His name gives some credence to the others at these conventions, including those who push abusive therapies.

I have never heard of Mr. Kennedy speaking out against the fake, even abusive, “therapies” pushed at these parent conventions. Why? In my opinion:

He’s gutless.

Allow me to focus on one of the most egregious fake therapies pushed as part of the vaccines-cause-autism movement. There are more. Many more. But let’s just discuss chemical castration.

If you are thinking, no way that happened, Matt. You must be exaggerating. I’m not.

Doctors were prescribing Lupron in order to reduce the testosterone in autistic children. That’s chemical castration in my lay opinion. Dr. David Gorski, an oncologist, wrote a series of articles about this “treatment” as “why not just castrate them“.

Surely they had a good reasoning for taking such drastic measures, you must be thinking. No, they didn’t. In fact, the “science” behind the therapy is horrifically bad. It would be funny if it wasn’t actually used on children.

How was the “Lupron protocol” justified? First, let’s start with the idea that autism is caused by mercury. It isn’t, but this is the idea that Mr. Kennedy pushed so hard 20 years ago. Mercury intoxication is commonly treated by chelation, which is a way to remove mercury from the body. For years medical practitioners pushed chelation on autism parents (again, often at these autism parent conventions that Mr. Kennedy is known to speak at). Only chelation didn’t work. It didn’t work because autism isn’t mercury intoxication. But to people like the Geiers, the problem was that chelation wasn’t working, the problem was they needed a better way to chelate. They came up with the idea that testosterone was binding to mercury and keeping chelators from working. So, they postulated, remove the testosterone and one can remove the mercury and the kid will stop being autistic. Which brings us to chemical castration: remove or reduce testosterone in the body. Which brings us back to Lupron.

Seriously, it happened. And a father-son team named Geier led the charge.

In order to prescribe the Lupron, the Geier’s needed a diagnosis. Insurance companies aren’t going to allow people to prescribe Lupron for mercury intoxication (even ignoring the fact that the Geiers didn’t have evidence for mercury intoxication). So the Geier chose precocious puberty as the diagnosis. Diagnose a kid with precocious puberty and you can prescribe Lupron.

The Geiers got into trouble for this. In 2013 they were facing disciplinary action as noted by blogger Todd W. at Harpocrates Speaks (among many others). They were facingmedical license suspension. In multiple states. So, you’d think people might be questioning the Geiers’ “protocol”. Perhaps checking the “science” that supported it? Well, not in Mr. Kennedy’s circles, apparently.

A few days after Todd W. wrote his article, two things happened. The Geier’s spoke at a parent convention called AutismOne. And Robert Kennedy was the keynote speaker for that convention.

Think about it. Mr. Kennedy could have told the parents at that convention that he stands apart from the Geiers. He could have just said perhaps people should be cautious, a relatively weak stance. Mr. Kennedy could have taken a stronger stance said that what the Geiers were doing was chemical castration and it was wrong, a much stronger stance.

To my knowledge Mr. Kennedy did not speak out then against the Geiers or any other practitioner of fake autism cures. I have no knowledge of him ever speaking out against charlatans.

It would have taken courage to speak out. It would have taken courage to admit to himself that he’d missed the obviously bogus science before, and that he, a self-professed science expert, was wrong. And it would have made a difference. I don’t consider it hyperbolic to say that I consider chemical castration of disabled (or any) children to be abusive. And Mr. Kennedy could have slowed or even stopped this practice long before Dr. Geier lost his license. He was respected and a frequent speaker at these conventions.

It takes courage to face allies (the Geiers were long known for pushing the mercury-autism link. Mr. Kennedy cites them multiple times in his books) and say they are doing wrong. Mr. Kennedy didn’t even have to admit that the mercury-causes-autism idea was false (which would have taken another step of courage and would have been the right thing to do). Just that chemically castrating disabled children is wrong.

Seriously, how hard is it to say, “Chemically castrating disabled children is wrong”, Mr. Kennedy?

Mr. Kennedy has spoken regularly at the “vaccines-cause-autism” parent conventions. And the Geiers were not the only ones pushing abusive therapies. It would have taken courage to say, “I will not speak and lend my name to a meeting where fake therapies are promoted.” But Mr. Kennedy lacks that courage.

This is largely due, I believe, to the fact that Mr. Kennedy lacks to courage to analyze his own lack of scientific expertise. My belief is that Mr. Kennedy, to this day, doesn’t understand just how bogus the “Lupron protocol” was. But it would take a courage for someone who has branded himself as a person who understands science (even though he lacks any credentials) to say, “You know what, I didn’t catch on to the idea that the science the Geiers were claiming was unsound.”

One might ask, was the Geier science obviously bogus? I would say yes and I would say that someone with the expertise Mr. Kennedy claims to have should have easily seen there was a problem very early on. Let me explain. The Geiers claimed that mercury and testosterone form “sheets”, large complexes, in the brains of autistic children. Sounds very scientific and all, until we found that the study the Geier’s were basing this idea upon involved boiling mercury and testoterone in benzine.

In my opinion, Mr. Kennedy should have known that a child’s brain is not similar to boiling benzine. Yes, this sounds snarky, but it really is that simple. The science behind the Geier’s “Lupron protocol” was really that bad.

But this discussion risks getting back into the realm of “He’s anti-science”. I bring this up not to point out Mr. Kennedy’s lack of science chops, but to point out that the science was so bad that it didn’t really take much analysis to see it.

That is if one has the courage to question. To question one’s allies. To question one’s own expertise. To question whether one’s own inaction led to the abuse of disabled children. And, again, in my opinion this was abuse. And Mr. Kennedy could have helped stop it sooner.

Again, I only picked one example. And this discussion has gone long, so you can understand why I chose only one example. But there are many examples of fake cures promoted at autism-parent conventions that Mr. Kennedy could have stopped. There’s also a lengthy discussion we could have about the stigma the anti-vaccine movement has brought to autistic people (one of Mr. Kennedy’s allies tried to label autism as “mad child disease“, to give you one example.) Mr. Kennedy could have spoken out agains the stigmatizing language. But the fear of autism and autistic people has long been a mainstay of the anti-vaccine movement.

We need a president with courage. While others discuss his anti-vaccine views, his near self-delusional belief in his scientific acument, let me just say this again: Mr. Kennedy lacks courage.

Robert F. Kennedy Jr. is gutless.

_____

By Matt Carey

More discussions
This blog on Mr. Kennedy.
Articles on this blog about the Geiers.
Articles on this blog about Lupron.
Mark Geier’s Wikipedia Page.


Xavier Becerra please seat a new IACC quickly

7 Dec

Xavier Becerra, the news is reporting that you will be nominated to be the new head of the Department of Health and Human Services. Congratulations. You will have a lot to do when you get started. One of those tasks is to seat a new Interagency Autism Coordinating Committee.

Please do this quickly. Please.

The IACC serves a very important mission, and we really could have used them this year to address the unique challenges of the pandemic. Not having an IACC in place hurts our communities, our people.

The law reinstating the IACC was signed on Sept. 30, 2019. Over a year ago. Nominations for members was held between November 19, 2019 and February 21, 2020. So HHS has had those nominations for over 9 months. I’m sure your staff can put the names of good candidates in front of you on day one. This should be an easy task to get done, do it quickly. Please.


By Matt Carey

So where is that economic miracle, Donald?

30 Sep

There’s a reason why Trump isn’t talking GDP growth these days. It’s because he failed by that measure.

Four years ago Donald Trump was able to sell America that the economy was in bad shape (it wasn’t) and that he, a businessman, could help. Many Trump supporters have told me then and now how we need a president who can run the country like a business. I’ve never gotten any real detail on that argument, they have just repeated Trump’s slogan.

We’ve recently learned from Mr. Trump’s taxes that he’s not very good at business. It wasn’t a big surprise given his failures in so many businesses over the years. We now know that his businesses have been kept afloat by his reality show and endorsements. And big, big loans.

So, we have a showman president, not a businessman president. Which anyone watching the past few years already knew.

But how about that economic miracle? What about the turnaround we were promised (since the economy was doing well under Obama, we didn’t need a turnaround, but let’s keep going). One way we can measure Mr. Trump’s success is with the Gross Domestic Product (GDP). The recovery from the great recession was slow, we were told. Trump can do better. This was also a key to his sales pitch for his tax cut: the economy would grow so much that the tax cut wouldn’t increase the deficit. He’s promised 4%, 5% even 6% quarterly growth in GDP.

We don’t hear him talk GDP much now. We don’t hear him brag how he grew the economy so much that we can pay for the huge deficits he created with his tax plan. Makes me want to know if he succeeded (OK, I know he failed, makes me want to quantify it).

With that in mind I pulled GDP data from here to check. Here it is: a table of the percent change in GDP by quarter going back to part way through the Obama administration:

I’ll be fair: I won’t include those quarters affected by the pandemic. Sure, I could also argue that with Trump’s epic mismanagement the economic hit has been far worse than it should have been. I could argue that convincingly. But let’s just look at the quarters before the pandemic. Trump had 11 quarters as president, back to Q1 2017 when he was inaugurated. For compariso, I then counted 11 quarters back to average for Obama.

Average GDP growth in Trump’s first 11 quarters was 2.5%. For the previous 11 quarters, under Obama, it was 2.4%. Trump did no better than Obama. And–this is important–that is with the short term jolt he got with his tax cuts.

So the only way Trump did as well as Obama was at the huge cost of a big deficit.

There’s a reason why Trump isn’t talking GDP growth these days. It’s because he failed by that measure.

By Matt Carey

We needed the IACC in 2020. It’s past time to re-form it

13 Sep

The U.S. has a committee called the Interagency Autism Coordinating Committee. It’s mandated by law, a law that has been periodically renewed. Most recently as the Autism CARES Act of 2019, public law 116-60. Signed into law on Sept. 30, 2019, nearly a year ago.

I was a member of a previous incarnation of the IACC. The IACC is limited in what it can do, but there are areas where it is uniquely capable of action. Let’s use the pandemic as an example:

The IACC could bring together experts to share what is known about how the pandemic would affect the autism communities. What strategies work for remote learning for autistic students? What strategies might help for group homes where individuals are unable to get out into the community? What are the medical considerations of a disease like COVID-19 on autistic people?

The IACC brings in experts in each meeting to discuss topics of importance to the community. The topics above and more could be covered. Recommendations and information could be gathered and written into reports and web pages for members of the community to use.

The IACC also recommends research funding strategies. I am 100% certain that there is a lack of information on how the autism communities could best react to the pandemic. Right now is the time to focus research funding into how the pandemic is affecting autistic people and what works and what doesn’t. Because there will be another pandemic.

The last IACC term ended with the sunset of the previous Autism CARES Act, at the end of September in 2019.

In the best of times, there is no reason for the IACC to go through such a long hiatus. These are not the best of times. The IACC would have to meet remotely, but that is no reason to not form a new committee. The best work of the IACC is done outside of the meetings, gathering and reporting on research. We need that now.

By Matt Carey

So Anti Vaccine Crowd, how did that campaign for Trump thing work out for you?

12 Sep

In 2016 the anti vaccine community was very excited to have a candidate who lent them credibility. They always crave credibility and will latch on to anyone who does so. Think Robert Kennedy Jr., Del Bigtree, Andrew Wakefield, the whole raft of charlatans that any reasonable movement would cut loose. But in 2016 they had Donald Trump, who evolved from dark horse candidate to Republican nominee to president.

Donald Trump had tweeted the vaccines cause autism lie:

Trump lies about vaccines to get attention

Trump lies about vaccines to get attention

And had made other comments about autism and vaccines.

By this time most people understood Donald Trump. He’s a shameless self promoter who likes to take controversial positions to get attention (birther conspiracy, anyone? He even revisited birtherism with Kamala Harris).

Being a conspiracy theorist wouldn’t alienate Trump from the anti-vaccine community. Far from it. Just as they deny their own conspiracy theory roots, they will look past this in Trump. And being a loud mouth who is often wrong? Well, that sums up JB Handley to a T.

Trump flirted with the anti-vaccine movement and the anti-vaccine movement fell in love. JB Handley (anti-vaccine activist who uses his position as an autism parent in his campaign) wrote an article: Trumps Stands with my Son, I Stand with Trump with comments like “If ending the Autism epidemic is your top priority, how in the world can you vote Democrat? rel=’nofollow'”.

Let’s leave aside that the “autism is an epidemic caused by vaccines” is doubly wrong. Many of us responded at the time: if having respect for people with disabilities (such as your son, Brad) were any sort of priority, how could you vote for Trump? Trump clearly doesn’t respect people with disabilities. For example:

Why would an autism parent support this?

Why would an autism parent support this?

That said, JB Handley and many others in the anti-vaccine movement (including other autism parents) clearly don’t respect people with disabilities. Remember when Del Bigtree compared autistics to dogs and exotic chimpanzees while autism parents Mark Blaxill and Ginger Taylor laughed?

Many of us autism parents prioritize our kids and the autistic community in general. We feel that respect and rights for people with disabilities is a paramount issue. And Trump had no disability plans in his platform. But the anti-vaccine movement, even the autism parents, do not place such a high value on respect for people with disabilities. In fact, they disparage it as trying to “normalize” disability (I got a hint for you all–disability *is* a normal part of being human).

Here we are 4 years later. Donald Trump not only hasn’t taken up the anti vaccine banner, hasn’t taken up the “autism is a vaccine induced epidemic!” campaign, he’s now throwing money into the development of new vaccines and actively trying to get the vaccines to market before they can complete safety and efficacy testing.

Instead of “draining the swamp”, he’s pressuring the CDC and the FDA to become part of his political machine, where independent science isn’t reported but rather science-like support for Trump’s messaging are allowed.

The irony is thick. The anti-vaccine movement got the exact opposite of what they hoped for.

So I wonder what they are thinking now. How much do they know that they were played? And do they care that they were played?

I haven’t done much digging on this, but I did run across this from “you are so charming Del, I’ll laugh at your autistics-as-dogs remark” Ginger Taylor:

Yeah, she’s on to Trump. But she still backs him.

It’s rare for the anti-vaccine movement to admit even this much of a mistake (JB Handley, for example is very much in the Trump mold. Including the ‘never apologize, never admit mistakes’.)

I do wonder if somewhere, hidden from view, there have been discussions of “well, we were played by Trump” among the anti-vaccine community.


By Matt Carey

WTF Republicans?

23 Mar

Both houses of Congress are working furiously on bills to stimulate the economy following the COVID-19 slowdown. Which is a good thing. But, politicians are politicians and they can’t seem to “waste a good crisis” (as the saying goes).

From the Washington Post: The GOP just smuggled another awful provision into the stimulus

According to language in the bill forwarded to me by a senior Senate Democratic aide, this provision excludes “nonprofits receiving Medicaid expenditures,” which would not be eligible for those loans.

This language has been interpreted in some quarters as an effort to deny funding to Planned Parenthood, a longtime GOP target. But Democratic aides think the language means a lot more than this.

Specifically, Democratic aides believe this language would exclude from eligibility for this financial assistance a big range of other nonprofits that get Medicaid funding, such as home and community-based disability providers; community-based nursing homes, mental health providers and health centers; group homes for the disabled; and even rape crisis centers.

Great. Nonprofits serving people with disabilities would be excluded from this part of the stimulus. Why? Why Republicans, why?


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

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