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Tuesday, January 31, 2017

Opposition to DeVos

Although the HELP Committee narrowly approved the DeVos nomination, opposition is mounting in the disability and civil rights communities.

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.
From the Leadership Conference on Civil Rights:
Betsy DeVos’ deference to state flexibility, even with regard to compliance with federal civil rights laws such as the Individuals with Disabilities Education Act (IDEA); her claim that demonstrating support for Title IX enforcement guidance would be “premature;” and her lack of support for accountability for all schools receiving federal funds only serve to reinforce our conclusion that her inadequate previous experience and missing record of support for students’ civil rights make her unfit to serve as Secretary of Education.
From the Council of Parent Attorneys and Advocates:
We are extremely concerned about Ms. DeVos's apparent lack of understanding of the IDEA, the federal law that guarantees a "free and appropriate public education" to children with disabilities. During her confirmation hearing Mrs. DeVos appeared to be unfamiliar with IDEA and the protections afforded to students with disabilities through the law, stating that she felt that enforcement of this federal law should be left up to the states. This is unacceptable and clearly indicates that Ms. DeVos is unqualified to serve as Secretary of Education. It is essential that the Secretary of Education be knowledgeable and supportive of the federal laws that guide special education services.
A petition with over 350,000 signatures:
Ms. DeVos does not support the equal rights of students with disabilities to receive a Free and Appropriate Public Education as outlined in IDEA. In fact, she has stated that she believes that the responsibility for the education of students with disabilities should be determined at the state level.

The impact of such an action would be profound and according to the National Center for Education Statistics would impact roughly 13 percent of the student population. The students receiving special education services are among the most vulnerable citizens of this country and are worthy of the same opportunities for receiving an education that every other American citizen has. Without the provisions outlined in IDEA, many of those students would be under-served or lose their opportunity for an education altogether.
We ask that you please act to protect the rights of students with disabilities and vote against the confirmation of Betsy DeVos.

Monday, January 30, 2017

DeVos Nomination

Betsy DeVos stumbled in her confirmation hearing when the discussion focused on IDEA. Valerie Strauss reports at The Washington Post:
Days later, DeVos wrote a letter to [Sen. Johnny] Isakson trying to explain her position on IDEA. The letter raises new questions about her priorities.
DeVos wrote in the letter (see text below) that she understands IDEA is a federal law and that she is “eager to bring a sense of urgency” to enforcing it. She said that she wants schools to strengthen student IEPs, which are Individual Education Programs that spell out special-education learning goals and needed services/accommodations.
She then said she wants to provide students with disabilities more educational opportunities — and praised a voucher program that helps students with disabilities attend private school funded with taxpayer dollars...
She doesn’t talk specifically about helping traditional public schools — which educate the vast majority of America’s schoolchildren — improve their special education programs or how they implement IDEA.
Senator Maggie Hassan (D-NH), a disability parent, is not convinced:
“While I’m glad Mrs. DeVos clarified that she is no longer confused about whether the Individuals with Disabilities Education Act is a federal law and was able to define the basic tenets of this law, her letter does nothing to reassure me that she will enforce the IDEA or honor our commitment to ensuring that all students receive a free and appropriate public education. In addition, Mrs. DeVos failed to address the original question I posed to her in her confirmation hearing, which was about why she is comfortable with voucher programs that force parents and students to sign away their rights under IDEA.

“Between her lack of experience with public education, her support for diverting taxpayer dollars to private schools without accountability requirements, and her lack of understanding of the challenges facing students with disabilities, Mrs. DeVos has shown herself to be completely unqualified for this position – and her recent letter has only reinforced that she is unfit to serve as Secretary of Education. I will vote against Mrs. DeVos’ nomination and I urge my colleagues to do the same.”

At Education Week, Benjamin Herold writes:
President Donald Trump's nominee to head the federal Education Department is a major backer of a company claiming its neurofeedback technology can "fix" problems such as attention-deficit hyperactivity disorder and has "proven and long-lasting" positive effects on children with autism.
Current scientific evidence does not support such claims, according to the clinical guidelines of the American Academy of Pediatrics and three leading researchers consulted by Education Week.
"It's misleading the public to say neurofeedback is effective in treating kids with ADHD and autism," said Nadine Gaab, an associate professor of pediatrics at the Boston Children's Hospital and a faculty member at the Harvard Graduate School of Education.

"It's still an experimental treatment that needs more rigorous research," she said.
Launched in 2006, Neurocore is based in Grand Rapids, Mich. That's also the hometown of billionaire school-choice advocate Betsy DeVos, Trump's pick to become U.S. Secretary of Education.
Laura Turner reports at Politico:
The most vulnerable children also include those with disabilities—a group to whom evangelicals have long paid special attention. Some evangelicals are concerned that DeVos’ strong advocacy for school choice will diminish the resources available to kids who, under IDEA, are guaranteed a “free and appropriate education.” Taking money that would otherwise go to a public school and giving it to a family in the form of a voucher would mean that those public schools, which are frequently already under-resourced, have fewer and fewer options to offer IDEA students.
“My kid is already marginalized in society for not being neurotypical,” Nish Weiseth, an evangelical author and speaker who also has a son with autism, told me. “How much more could he be marginalized and made vulnerable because of education policy?”
[Seattle Pacific University dean Rick] Eigenbrood, who was a special education teacher before he began working at the college level added that if high-performing students are given the choice to leave their local public schools for charter or private schools, they will interact less and less with students with disabilities, who may not be covered by IDEA at non-public schools. “If you’re a child growing up and you don’t get to go to a school where you encounter people with disabilities, I think you’ve lost an important part of what it means to be able to function in a fully-inclusive society that includes people with disabilities,” he says.

Sunday, January 29, 2017

Fournier Talks to Calley

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

At Crain's Detroit Business, autism dad Ron Fournier talks to another autism dad, Brian Calley, the lieutenant governor of Michigan:
You have an opportunity here to talk to the influential folks who read Crain's publications. What would you say to a businessperson to convince them that hiring people with different brain wiring isn't just a nice thing to do, but there's actually a return on investment?
I am very careful to reject the notion that this is … charity, because that is not at all what I'm talking about. This is an effort to treat people who have a neurological difference the same way we would anyone else. You hire people that are well-suited for the job.
Ford's recent experience with … a pilot (program) is now being expanded, because they had difficulty in certain high-tech positions — in finding the right people to fill those jobs and there are people with autism filling those jobs today. There are examples across the different forms of employment, from the type of jobs that are entry-level all the way through to complicated jobs. People are excelling (at their jobs) because they have mostly been given a chance to prove what they were able to do.

Saturday, January 28, 2017

North Dakota Mandate Bill

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Joe Skurzewski reports at KFYR/KMOT-TV:
For Shannon Schmidt and her husband, providing for their kids has been no easy task.
The Schmidts have three children and a fourth on the way. Their five-year-old son Caleb is one of their many blessings. He's also part of the one in every 68 children who find themselves on the autism spectrum.
But North Dakota is one of only five states that does not have full insurance coverage for what's known as 'applied behavior analysis' or ABA, which helps children with autism learn how to perform everyday functions.
Schmidt said without insurance coverage, parents of children of with autism are forced to make tough decisions.
“You're given your diagnosis, and then you're given two options: either you make huge changes in your personal life to try to afford any type of treatment out-of-pocket or you leave the state,” she said.
House Bill 1434 would implement this insurance in the state. Detractors argue it would costs the state far too much, but supporters say projections are based off of numbers from other states years ago, and they don't translate to North Dakota in 2017.
At KFGO-AM, Jack Sunday & Amy Iler interview bill sponsor Thomas Beadle.

Friday, January 27, 2017

IDEA Questions for DeVos

The undersigned members of the Consortium for Citizens with Disabilities (CCD) write in response to the hearing of Betsy DeVos for the U.S. Secretary of Education. Given the lack of clarity that came from her nomination hearing, we request that she provide specific answers to numerous questions regarding her views on policies that impact students with disabilities before her nomination is voted on in committee. 
CCD advocates for federal public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. We see these principles as critical elements in a society that recognizes and respects the dignity and worth of all its members. 
On January 9, 2017, in anticipation of the nomination hearing for Betsy DeVos, the CCD Education Task Force submitted a letter to members of the Health Education Labor and Pensions (HELP) Committee urging members to ask questions that would help to clarify Mrs. DeVos’ vision for the Department’s role in supporting students with disabilities and promoting their access and inclusion in the education system. Unfortunately, at the hearing, Mrs. DeVos’ answers to many questions did not provide the needed clarity, and in fact, raised serious concerns from the undersigned organizations regarding her vision and commitment to upholding and implementing, with fidelity, the laws under which students with disabilities are educated including the Individuals with Disabilities Education Act and the Every Student Succeeds Act. Our concerns arise from, but are not limited to, answers such as the following:

  • When asked on whether all schools that receive federal funding should meet equal accountability standards, Mrs. DeVos answered, “well no”.
  • When questioned about IDEA full funding, Mrs. DeVos responded, “and maybe the money should follow the individual student instead of going to the states”. 
  • When asked whether students would be able to keep their IDEA rights under a private school voucher system, Mrs. DeVos refused to answer the question. 
  • When asked whether all schools that receive taxpayer funding should meet the requirements of IDEA, Mrs. DeVos responded, “I think that is a matter best left up to the states.” 
  • When asked whether all schools should be required to report the same information on instances of discipline, harassment or bullying Mrs. DeVos responded, “I think that federal funding certainly comes with strings attached” rather than committing to this policy position. 

The undersigned organizations respectfully request that Mrs. DeVos provide answers to
the questions listed below prior to a vote on her nomination in committee. We believe
that answers to these questions are critical to assessing Mrs. DeVos’ commitment to
educating all students, including the 6.5 million students served under IDEA. 
  • Do you support that it is the role of the U.S. Department of Education to enforce the Individuals with Disabilities Education Act (IDEA)?
  • Should states and schools that receive federal funds though IDEA be required to meet all of the requirements laid out in the federal statute?
  • Should the federal government incentivize states to provide students with disabilities and their families’ private school vouchers without the protections of the IDEA?
  • Should IDEA funds follow the student?
  • Should all schools that receive tax payer funding be held accountable as required in the Every Student Succeeds Act (ESSA) and its implementing regulations?
  • Should all schools that receive federal funds be held accountable for students with disabilities as required by ESSA and its implementing regulations?
  • Do you support that students with disabilities who attend private schools should retain due process rights as defined by IDEA?
  • Are the McKay Scholarships, which require the signing away of IDEA rights, a model with which you agree?
  • How do you expect that parents will make up the difference between the money that a private school voucher provides and the cost of educating a student with complex disabilities in a private school setting? Are you aware of the average cost for educating a student with a significant disability?
  • Should students with disabilities have the option to attend general education schools and receive necessary special education services? If so, then how would you ensure that funding is available for this arrangement in a private school voucher system?
  • Do you support the presumption under IDEA that students with disabilities should be educated in general education classes. If yes, how would you ensure the LRE provisions of IDEA are properly implemented in a private school voucher system, charter schools and traditional public schools?
A committee vote on Betsy DeVos for U.S. Secretary of Education should be delayed until Mrs. DeVos has fully answered the above questions, and allows Committee members the opportunity to fully understand how she plans to ensure that students with disabilities receive a quality education with their peers as required by federal statute. Thank you for considering our views. If you have any questions, please contact Kim Musheno, CCD Chair, at 301-588-8252/222 or

Thursday, January 26, 2017

An Autism Mom Reflects on Endrew F.

In The Politics of Autism, I write about IEPs and FAPE.

Recently, the US Supreme Court heard oral arguments in Endrew F. v. Douglas County School District.

At The Atlantic, Laura McKenna writes:
Over the years, as a parent of a student with high-functioning autism who has been educated in three different public school districts, I have seen wide disparities in the quality of special-education programs. Sometimes my son has been offered a well-written IEP with rigorous, measurable goals and high expectations, staff with adequate training and support, and a clean classroom with windows; other times he has not. Keeping him in an excellent program has required an enormous amount of time and effort.
The quality of education has a huge impact on kids like my son. For children with more severe disabilities, simply being able to control troubling behaviors and learning a few words of speech improves their quality of life enormously. Clearly, Drew, the subject of this court case, benefitted enormously from his private school. A good education might give a child a chance at a future with, say, an assisted job at a supermarket and residence in a group home, rather than life in a depressing and expensive institution.
It’s clear that not all states are appropriately serving their students with disabilities. As reported by the Houston Chronicle, the Texas Education Agency put a cap on the number of students who would receive special education services in 2004, thus denying help to tens of thousands of children, even those with Down syndrome. Some families relocated to other states to get help for their children.
At the same time, it’s undeniable that special-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids, like my oldest son, a variety of AP and honors classes, summer SAT prep class, and a varsity track coach that gets the team into the state championships. Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger.
If the courts do find that public schools are responsible for providing students with a quality special education, the next step is figuring out a funding model that’s fair. Both sides of this debate maintained that the federal government must increase its funding of special education to at least meet the 40 percent promised to the states by IDEA. Without added dollars, the politics of special education—which is already ugly at the local level—is slated to become even more fraught in the coming years.

Wednesday, January 25, 2017

Price Hearing, Continued

At STAT, Dylan Scott reports on a Senate Finance Committee exchange between Robert Menendez (D-NJ) and HHS nominee Tom Price:
Do vaccines cause autism?” Menendez asked Price during Tuesday’s hearing, the first time the issue had been raised with the HHS nominee during his confirmation.
“I think the science in that instance is that they don’t,” Price said. He went on: “But there are individuals in our country who are very —”
Menendez cut him off.

“I’m not asking about individuals,” he said. “I’m asking about science.”
Was Price trying to add something that would reassure antivaccine activists?

At The Huffington Post, Arthur Delaney reports:
In light of the president’s fringe beliefs, last week Every Child By Two and dozens of other groups, including the American Academy of Pediatrics, asked senators to get Price to commit to vaccines.

Later in the hearing, Sen. Chuck Grassley (R-Iowa) asked whether Price, as a physician, believed parents should get their kids vaccinated according to the schedule set by the Centers for Disease Control and Prevention, which is part of the health department. Price didn’t exactly say that they should.

“I think that the science and healthcare has identified a very important aspect of public health, and that is the role of vaccinations,” he said.

Tuesday, January 24, 2017

Price Hearing

At The Huffington Post, Arthur Delaney writes about HHS nominee Tom Price:
This week’s confirmation hearing for Tom Price will likely focus on the former House Budget Committee chairman’s potential conflicts of interest and on the Trump administration’s plans for repealing Obamacare. But the American Academy of Pediatrics and a host of other groups want senators to get Price on the record about vaccines.

“As you work through the confirmation process, we urge you to ensure that Chairman Price is committed to protecting the citizens of this nation from vaccine preventable diseases,” the groups said last week in a letter to key senators. (You can find a PDF version of the letter here.)

Vaccines have eradicated a number of diseases from the U.S. and are generally regarded as one of the greatest public health achievements in modern times. The president, however, has long espoused the bogus theory that they can cause autism. He met earlier this month with a proponent of that theory, who said Trump asked him to chair a commission on vaccine safety.

And Price, an orthopedic surgeon, has been a member of the Association of American Physicians and Surgeons, a libertarian medical group that thinks it should be easier for people to decline vaccines for their children.

Monday, January 23, 2017

Trump Quackery

In The Politics of Autism, I discuss autism quackery.  During the campaign, Trump raised the discredited notion that vaccines cause autism.

Epistemic uncertainty—the idea that traditional sources of knowledge cannot be trusted—has long been exploited by disingenuous medical gurus to attract patients. ... Epistemic uncertainty undermines rational evaluation. Emotion and tribalism, already significant factors in determining one’s worldview, becomes the dominant source of beliefs. Vaccines might cause autism. Zapping might cure cancer. Climate change might be a Chinese hoax. A man in New Jersey might have been behind the Democratic National Committee hack. After all, who can you trust when the the Food and Drug Administration is run by Big Pharma?
Yet even in a world infected by epistemic uncertainty, not everyone falls for quackery. Not everyone votes for Trump. Those who do are likely also facing existential panic, which in turn can cause a crippling case of tunnel vision. Existential panic occurs in the face of a grave threat to physical well-being, personal identity, or worldview. Take a story I reported for Wired, about two doctors, Jim and Louise Laidler, whose two sons were diagnosed with autism. Despite being steeped in traditional medicine (Jim has an additional Ph.D. in biology), their desire for the “normal” life they had envisioned was so strong that they became advocates of alternative therapies, putting their children on gluten-free, casein-free diets and subjecting them to myriad unproven treatments. They attended conferences, which Jim Laidler described as being more like rallies, collections of enthusiastic people with contradictory theories, united only in their opposition to everyone else.

In health and medicine it’s easy to touch off existential panic, because there are still lethal and debilitating conditions for which science has few answers: cancer, autism, Alzheimer’s, ALS. Trump did the same in the political sphere: Instead of harping on rising rates of disease, he invoked rising inner-city crime. (Both, in fact, are falling.) Throughout the campaign, Trump offered rhetoric that characterized the American lifestyle—and even American life itself—as being on the cusp of complete collapse. Instead of toxins, terrorists.

Sunday, January 22, 2017

A DeVos Company and an Autism "Treatment"

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Betsy DeVos, the nominee for Secretary of Education who seems not to understand the Individuals with Disabilities Education Act, has a connection to an unproven "treatment" for autism.
Matthew Goldstein, Steve Eder, and Sheri Fink report at The New York Times:
Betsy DeVos, the billionaire school choice advocate selected by President Donald J. Trump to serve as education secretary, is a strong supporter of using biofeedback technology to help children and teenagers enhance their performance in school.
Ms. DeVos and her husband, Richard DeVos Jr., are major financial backers of Neurocore, a Michigan company that operates drug-free “brain performance centers” that claim to have worked with 10,000 children and adults to overcome problems with attention deficit disorder, autism, sleeplessness and stress.
The company’s website claims impressive outcomes: for example, that 90 percent of people with attention deficit hyperactivity disorder report improvement and 76 percent “achieve a nonclinical status.” But Neurocore has not published results in the peer-reviewed literature.
From Neurocore's website:
Research shows that biofeedback can be an effective treatment. One study demonstrated a 26% reduction in reported symptoms on the Autism Treatment Evaluation Checklists (ATEC). Another study noted improvements in executive functioning, thought to be a central concern in autism. Parents in another study reported significantly improved communication and social skills following biofeedback.
It does not link to these purported "studies" nor does it provide further detail. Also note that the company did not use the "gold standard" Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS).  Instead it used ATEC, developed by Bernard Rimland and Stephen M. Edelson of the Autism Research Institute.

Saturday, January 21, 2017

Trump v. Science

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

 My position is firm: there is no link and I also believe there is no plausibility to such a link. My position is mostly based on the scientific literature, together with my perspective as an autism father witnessing first-hand the impact of this condition on Rachel and our family.
From his loose relationship with facts, to his denial of climate change, his low-opinion of the National Institutes of Health, and his meeting with an anti-vaccine leader, Trump has signaled that his administration will not just challenge proven scientific principles, but also undo the significant science policy progress of President Obama.
Enter the #USofScience hashtag. Researchers are using Inauguration Day to stand up for science, filling social media with celebratory comments about discoveries, debunking some of Trump’s anti-science claims, and reminding the public that many of our favorite inventions came from basic research. It’s the nerdiest hashtag to watch today.
At Respectful Insolence, Orac writes:
One of the retorts I heard when I wrote about Robert F. Kennedy Jr. meeting with Donald Trump a week and a half ago was that the commission on vaccine safety and/or autism that he might or might not have been asked to chair, was that this wouldn’t matter. That federal vaccine policy is based in law and regulations, and that unless Trump spends political capital changing those we don’t have any reason to be worried. Of course, that’s only partially true. Yes, Trump can’t just replace members of the Advisory Committee on Immunization Practices (ACIP) with Andrew Wakefield, Robert F. Kennedy, Jr., Barbara Loe Fisher, and a gaggle of other prominent antivaccine activists because there is a rigorous nominating process for membership, and vacancies are staggered, so that it takes several years to turn the membership over. It’s also true that school vaccine mandates are a matter of state, not federal, law; Trump can’t change 50 state laws. On the other hand, as was noted on STAT News, Trump can appoint a CDC director and agency staffers who have antivaccine proclivities, and such a director could change CDC priorities and policies. If he’s willing to spend political capital, he could conceivably work with Congress to change or eliminate the Vaccine Court. He could cut back funding for the Vaccines For Children program or Section 317, a CDC-administered federal program that pays for vaccines, epidemiology, science, surveillance, the management of outbreaks, and more and has been called the “backbone of the US Immunization Program.”
So, what Trump can do to vaccine policy is limited, at least initially. However, that doesn’t mean he can’t still do enormous damage. There’s a reason why public health officials were appalled at his having met with RFK Jr. and would have been appalled had they known about his meeting with Andrew Wakefield before the election, and it’s Presidential bully pulpit that Trump will have beginning this afternoon. As Olga Khazan wrote the other day in The Atlantic, there is a shadow network of doctors who encourage vaccine hesitancy who could be empowered by a President who openly questions vaccine safety based on no evidence.

Friday, January 20, 2017

Trump v. the Disability Community

In The Politics of Autism, I discuss the issue's role in presidential politics.   A number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

According to organizers of the Women’s March on Washington, people with disabilities will be participating in droves, with a number expected to shatter any previous records of past rallies for people with disabilities.
“This is going to be massive,” Ted Jackson, the logistics team accessibility lead at the Women’s March, told Vox on Thursday. “Estimates are that [there] are at least 45,000 people with disabilities showing up, which should be the largest assembly of people with disabilities in US history.” He said this would exceed some of the most significant demonstrations on record, like the one organized by disability advocates after the Senate passed the Americans With Disabilities Act (ADA), which garnered around 8,500 protestors.
 Valerie Strauss reports at The Washington Post:
During the Obama administration, there was a page on the White House website that had information about federal policy regarding people with disabilities. Its URL was Not under the Trump administration. The Trump-run White House website — which went live moments after Friday’s inauguration of President Trump — says: “You are not authorized to access this page.”

The Obama White House website page labeled “Contact the Disability Issues Outreach Team | The White House” isn’t there any longer either. Click on it and it now says: “The requested page/disability-issues-contact could not be found.” And the Obama White House website’s fact sheet about expanding opportunities for people with disabilities is gone too. (You can see the former disabilities page here.)
Archiving website pages from past administrations is common practice, and restructuring websites from administration to administration is, too. What is interesting here is that the website team didn’t find the time to make sure there were replacements for the disabilities information they were taking down before Inauguration Day.

The Person Taking the Oath Today

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

John McQuaid writes at Scientific American:
A presidential panel could amplify fears. Such bodies are often appointed not only to develop policies or investigate problems but to mold public opinion, says Jordan Tama, an assistant professor with American University’s School of International Service, who has studied the history of presidential panels. They typically hold public hearings and issue official findings that command respect and get media attention. But this one’s different. “I can’t think of a past example of a president creating a commission on an issue where the agenda seemed to be so far out of the mainstream,” Tama says.
A vaccine–autism panel could put the authority of the White House behind false assertions, Tama adds. And there is evidence such an effort would find a receptive, already growing audience in some communities. A 2011 study by CDC scientists showed that whereas the overwhelming majority of parents reported vaccinating their children, 30 percent worried that such inoculations might cause learning disabilities including autism. Surveys of pediatricians, analyzed in Pediatrics, found the proportion of doctors reporting that parents had refused vaccines for their children increased from 74.5 percent in 2006 to 87 percent in 2013.
Antony Michels reports at Yahoo Finance:
Cleveland Clinic CEO Toby Cosgrove says he didn’t discuss vaccines with Donald Trump when the president-elect asked him to become secretary of the US Department of Veteran Affairs. Cosgrove turned down the job, as he did when President Barack Obama offered it to him following the resignation of Eric Shinseki in 2014.
When asked specifically about Trump’s tweets about vaccines and autism, Cosgrove said, “Everybody is entitled to their own opinion. But we are evidence-based, and we’re looking at the scientific evidence that’s out there. The scientific evidence is pretty clear that vaccinations are safe and they have been an enormous part of reducing the morbidity and the mortality [rates] across the United States.”
Cosgrove had to reiterate Cleveland Clinic’s support of vaccines this month after the publication of an article by the medical director of the Cleveland Clinic Wellness Institute that questioned the safety of vaccines and mentioned autism. The director retracted the article, the Clinic said disciplinary action was taken and Cosgrove issued a statement rejecting the doctor’s views.
“There’s nothing to suggest that vaccinations are related to autism,” Cosgrove told Yahoo Finance. “Vaccines are one of the really great things that have happened in medicine. And now, [as] people stop vaccinating their children, we’re starting to see a resurgence of things like whopping cough. And I cannot say too strongly the importance of getting vaccines and vaccinating your children and the importance in terms of the public health.”

Thursday, January 19, 2017

Opinion on Autism and Vaccines

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  Trump has supported that theory.  As an earlier post indicated, his voters were more likely than Clinton voters to believe the myth. Another post looked at partisan data.  There are also signs of ideological distrust of science.

President-elect Donald Trump’s skepticism about the safety of childhood vaccines contrasts not only with the scientific consensus, but also with the opinions of Americans ― fewer than one-quarter of whom think immunization should be a matter of personal choice.

By a more than 2-1 margin, 54 percent to 26 percent, Americans say that the science supporting the safety of childhood vaccination is “indisputable,” rather than something that requires future debate, a new HuffPost/YouGov survey finds, although partisan divides on the issue are widening.
But although a majority of Democrats and Republicans still support vaccination, the minor partisan divides present in the 2015 survey appear to have modestly widened.

Democrats have become even more staunch advocates for vaccines in the past two years. Two-thirds say that vaccine science is indisputable, up 6 points from 2015. Seventy-seven percent still consider childhood vaccines a matter of public health.

In contrast, while 64 percent of Republicans think vaccination is a public health issue, that’s down 7 points since the previous survey. Fifty-three percent consider childhood vaccines indisputably safe, down 9 points from 2015.

Equity for All

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

At US News, Jessica Berthold criticizes the vaccine-autism myth and says that our focus should go elsewhere:
Better yet, let's take a preventive approach that not only acknowledges the many people already living with autism in this country, but provides resources that enable people with autism to thrive in their families and communities. The need is great, for all with autism but particularly those in lower-income communities: for better diagnosis and screening, for early intervention and ongoing treatment, for better insurance/Medicaid coverage, for school supports, for respite care for caregivers, for housing and employment options once autistic people age out of the school system, and for embracing autistic people as full members of our society. I know firsthand that fighting for your child to get adequate treatment and appropriate education is a full-time job. I know – from speaking with many parents in my community – that it becomes much harder once your autistic child is out of secondary school and in the real world, where the employment rate for autistic people is abysmal and the quirks seen as "cute" in a young child are viewed in an adult as off-putting or even dangerous. And I know that I'm a privileged, well-educated woman with a decent salary – how much more overwhelming this fight for your child must be when you face additional discrimination or lack the resources to fully mobilize the limited systems and supports that currently exist? Instead of throwing money and time at a conspiracy theory that's long been stripped of credibility, let's devote our resources to equity for all with autism.

Wednesday, January 18, 2017

DeVos on IDEA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act:

During her confirmation hearing for Secretary of Education, Betsy DeVos faced questions from Senator Tim Kaine (D-VA):
Kaine: Should all K-12 school receiving governmental funding be required to meet the requirements of the Individuals with Disabilities Education Act?
DeVos: I think they already are.
Kaine: I’m asking you a “should” question. Whether they are or not, we’ll get into that later. Should all schools that receive taxpayer funding be required to meet the requirements of the Individuals with Disabilities Education Act?
DeVos: I think that’s a matter that’s best left to the states.
Kaine: So some states might be good to kids with disabilities and other states might not be so good, and then what? People can just move around the country if they don’t like how their kids are being treated?
DeVos: I think that’s an issue best left to the states.
Kaine: What about the federal requirement. It’s a federal law, the Individuals with Disabilities Education Act. Let’s limit it to federal funding. If schools receive federal funding should they be required to follow a federal law whether they are public, public charter or private?
DeVos: As the Senator referred to –
Kaine: Just yes or no, I’ve only got one more question
DeVos: There’s a Florida program. There are many parents that are very happy with the program there.
Kaine: Let me state this: I think all schools that receive federal funding, public, public charter or private should be required to meet the conditions of the Individuals with Disabilities Education Act. Do you agree with me or not?
DeVos: I think that is certainly worth discussion and I would look forward to.
Kaine: So you cannot agree with me.
Politico follows up:
The exchange prompted gasps from some watching the confirmation. Sen. Maggie Hassan then followed up, noting that IDEA is federal law and “federal law must be followed where federal dollars are in play.”
“Were you unaware that it is federal law?” Hassan asked.

“I may have confused it,” DeVos said.

“I'm concerned that you seem so unfamiliar with it,” Hassan said, adding that some private school voucher programs supported by DeVos aren’t honoring students’ rights under IDEA.

DeVos said that if confirmed, she’ll be sensitive to the needs of students under the law.

“It is not about sensitivity,” Hassan said. “It is ensuring that every child has equal access to a high-quality education. The reality is the vouchers that you support do not always come out that way. That is why it is something we need to continue to explore.”

Tuesday, January 17, 2017

Further Pushback Against Trump & RFK Jr. on the Autism-Vaccine Myth

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

So basically, antivaccine activists, led by Polly Tommey, who also co-produced VAXXED, are collecting stories of “vaccine injury.” One could say that the movie VAXXED consists, to a large degree, of stories of “vaccine-induced” autism, and the VAXXED team has been busy collecting such stories and posting videos to its website, grouped by state. For instance, here is Michigan, which as of last night included six videos. Not surprisingly, California has many more. So far, the VAXXED team claims it’s received over 650 e-mails from people who have submitted their stories.
This could be a very effective technique with this particular President for the simple reason that he does not understand science, shows little interest in science, and clearly values anecdotes over data. He is very easily influenced by flattery. He has a long and sordid history of antivaccine views. He’s been very consistent in this, dating back to at least 2007. He became antivaccine because of stories told to him by parents just like this, according to RFK Jr.
At STAT, Sheila Kaplan proposes question for HHS nominee Tom Price.
Do you share the president-elect’s concerns about the safety of US vaccines?
Trump has made a number of remarks indicating that he is concerned about vaccine safety, seemingly lending credence to debunked theories suggesting vaccines can cause autism. He also met recently with Robert F. Kennedy Jr., an outspoken anti-vaccine figure, who later said he had been asked to lead a committee on vaccine safety. (Trump’s transition team did not confirm he had been asked to do so.)
As the head of the nation’s top health agency, Price would be in a position to, at the very least, set the administration’s tone on vaccines.
At The Sacramento Bee, Karin Klein writes that RFK's California campaign against vaccination mandates focused on thimerosal, which has been out of vaccines for more than a decade.
Kennedy says that his mission would be to look at the science, but how could he be trusted to do that when he thinks any science that doesn’t fit with his preconceived notions is a plot? This is how he voiced his fringe vaccine belief: “They get the shot, that night they have a fever of 103, they go to sleep, and three months later their brain is gone. This is a holocaust, what this is doing to our country.”

He later apologized for that insulting and wildly inaccurate description of autism, but it proves the point: This man is not a scientist or anything remotely resembling a medical expert. He doesn’t belong anywhere near a scientific inquiry.

Want an example of a holocaust? In 1990, measles killed 872,000 people worldwide. A global vaccination effort reduced that to 158,000 people by the year 2011. A recent study found that the measles vaccination campaign had saved the lives of 20 million children from 2000 to 2015 – and even so, missed measles inoculations mean that 400 children a day continue to die from the disease.

The danger isn’t vaccines. Measles and many other diseases are highly contagious, potentially fatal, but preventable. The danger is from people who throw around scare words, paving the way for its comeback.