Search This Blog

Thursday, April 30, 2020

Civil Rights and Education During COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education is proving to be very difficult.

The NAACP Legal Defense Fund has posted a joint statement from civil rights organizations, including the National Center for Learning Disabilities and the National Disability Rights Network:
Federal law, including the Individuals with Disabilities Education Act (IDEA), requires students with disabilities to receive a free appropriate public education and related services, such as speech or occupational therapies. Additionally, Section 504 of the Rehabilitation Act of 1973 prohibits federally funded programs from discriminating against individuals with disabilities, including students. These legal requirements and educational imperatives continue, even in the face of the current public health crisis. While school closures may present many challenges for students, families, and educators who are used to working together in-person, there are many examples of schools and districts working creatively to ensure that the needs of students with disabilities are met and they are not denied an education. Special attention is needed to ensure the rights of children with disabilities who are also English learners, low-income, or students of color are met.
  • Florida UCP Charter Schools will be providing a customized Distance Learning program for its PreK – 12th grade students. This will include daily live lessons and virtual field trips/performances using Google Meet by teachers, “specials” and guests (i.e. legislators, local celebrities), classroom and individualized lessons using Google Classroom, and remote occupational, physical, and speech therapies. Clinical Counselors will provide virtual therapy and behavior technicians will host virtual social skills groups and individualized virtual meetings with parents/students. Family Service Case Managers will conduct a weekly “check in” with families to provide any needed support/resources and school nurses will check in with students with health care needs.
  • The Ohio Department of Education is working to ensure students with disabilities receive educational services consistent with their Individualized Education Programs. Recognizing the challenges this may present, the Department has advised school districts to consider three questions in the delivery of special education services: “1. Is the activity essential? 2. Can the activity be done virtually? 3. If there is no other choice, then can the activity be done safely?” Consulting local health departments is advisable and encouraged.
  • The Manchester, NH School District set up a link to access information regarding home instruction. There is a letter to parents (available in audio in multiple languages), and information about food delivery, lessons, and materials for elementary school. It appears Manchester is rolling out lesson plans by grade level, starting with elementary school. The letter to parents indicates that the district intends to provide services in students’ IEPs and 504 plans, including possibly bringing small cohorts of students into the schools. Teachers will call parents. Meals and hard-copy materials are being delivered daily.
  • According to a parent of the Argyle Independent School District in Texas: “We are receiving online instruction through Google Classroom. The teachers are making videos or using WebEx to connect with students and have had great communication and availability. They are currently sending out information for “parent-focused speech therapy.” Special Education teachers have modified assignments and hand delivered them to each student’s home and are available remotely to help and answer questions.
  • LEAs, schools, parents, and advocates may also consider emerging best practices for complying with federal disability law during COVID-19 school closures by visiting the National Center for Learning Disabilities website here and here. Practitioners and families can also find curated, searchable resources, access to experts, and examples from the field, provided by national organizations, here.
Recommendations to Effectively Serve Students with Disabilities
  • LEAs and schools should develop a process for reaching out to families to assess each student’s circumstance or new challenges that may need to be addressed in the home learning environment. Schools should develop a plan for regular, ongoing communication with families, in a language they understand, to monitor student progress.
  • LEAs and schools should develop a process for involving families in all Individualized Education Program team meetings and decisions about the student’s education needs, goals, and services that will be provided.
  • LEAs and schools should ensure that specialized instruction and related services continue for students with disabilities to the greatest extent possible in whatever manner is most appropriate for the child, while maintaining health and safety standards.
  • LEAs and schools should provide educators the tools and professional development to scaffold their teaching and ensure that their lessons are designed in accordance with the principles of Universal Design for Learning (UDL), offering multiple ways for students to engage. School districts should also provide opportunities to increase collaboration and communication among educators and service providers to evaluate students’ needs and work together to make appropriate adjustments for students with disabilities.
  • LEAs and schools should determine which needed services cannot be adequately or appropriately provided at this time and begin to plan for the provision of compensatory services as soon as possible.

Wednesday, April 29, 2020

Anti-Vaxxers, Russia, and National Security



David Klepper and Beatrice Dupuy at Associated Press:
A coronavirus vaccine is still months or years away, but groups that peddle misinformation about immunizations are already taking aim, potentially eroding confidence in what could be humanity’s best chance to defeat the virus.

In recent weeks, vaccine opponents have made several unsubstantiated claims, including allegations that vaccine trials will be dangerously rushed or that Dr. Anthony Fauci, the nation’s top infectious diseases expert, is blocking cures to enrich vaccine makers. They’ve also falsely claimed that Microsoft founder Bill Gates wants to use a vaccine to inject microchips into people — or to cull 15% of the world’s population.
...
“The coronavirus has created this perfect storm of misinformation,” remarked David A. Broniatowski, an associate professor at George Washington University’s school of engineering and applied science who has published several studies on vaccine misinformation.
...
Robert F. Kennedy Jr., a vaccine critic who helped popularize unsubstantiated claims that vaccines can cause autism, said Gates’ work gives him “dictatorial control of global health policy.” Roger Stone, a former adviser to President Donald Trump, went further on a New York City radio show, saying Gates “and other globalists” are using the coronavirus “for mandatory vaccinations and microchipping people.”
...
The vaccine debate is fertile ground for groups looking to sow discord in the United States. Russia seized on it to create divisions before the 2016 U.S. election, and appears to be at it again.
A report from a European Union disinformation task force found numerous conspiracy theories in English-language Russian media, including state-run RT, claiming an eventual vaccine will be used to inject nanoparticles into people.
“When pro-Kremlin disinformation outlets spread anti-vaccine tropes, they become responsible for those who will hesitate to seek professional medical care,” the EU report said.
Jason Wilson at The Guardian:
America’s “anti-vaxxer movement” would pose a threat to national security in the event of a “pandemic with a novel organism”, an FBI-connected non-profit research group warned last year, just months before the global coronavirus pandemic began.

In a research paper put out by the little-known in-house journal of InfraGard – a national security group affiliated with the FBI – experts warned the US anti-vaccine movement would also be connected with “social media misinformation and propaganda campaigns” orchestrated by the Russian government.
Since the virus hit America, anti-vaccination activists and some sympathetic legislators around the country have led or participated in protests against stay-at-home orders designed to slow the spread of the deadly virus. More than 50,000 people have died in the US.
From "The Anti-Vaxxers Movement and National Security," by Mark Jarrett and Christine Sublett.
The modern anti-vaxxer movement, composed of people who falsely believe that vaccines are dangerous, started with the publication 20 years ago of a now-retracted study by David [sic, Andrew] Wakefield that erroneously linked the measles, mumps and rubella vaccine (MMR) to autism (McCoy 2015). And while the Centers for Disease Control (CDC) has released studies that show no link between autism and vaccines or that an aggressive vaccination schedule for children causes autism, many people still believe that there is a connection and refuse to vaccinate their children. There has also been a rejection of scientific evidence in many communities that vaccines protect against disease, predating widespread use of the Internet and social media. Worldwide, there are many cases of leaders lying to their citizens about vaccine efficacy in populist movements, including by Italy’s Five Star Movement, which is now a part of that country’s government, and among the Taliban in Afghanistan. Healthcare workers involved in intelligence operations in locales including Pakistan has led to distrust of the services offered, including vaccines against deadly diseases like polio and measles (McNeil, Jr. 2012).

Quacks Clap for Trump

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

Anna Merlan at Vice:
As you likely know by now, MMS and other fringe cures are experiencing a fairly stunning moment in the spotlight after President Trump pontificated on April 23 about the possibility that injecting disinfectants could cure COVID-19. After his comments, The Guardian reported that Genesis II's current leader, "Bishop" Mark Grenon, had previously written a letter to Trump promoting MMS as a potential coronavirus cure; Grenon claimed that 30 of his supporters had done the same, and that MMS had also been sent to the White House. A few days later, Trump made his comments promoting disinfectants as a potential cure.
...
Meanwhile, the promoters of those fake cures are, in a word, delighted. On the day Trump made his comments, Jordan Sather, a prominent QAnon fan and frequent promoter of chlorine dioxide, tweeted, "The day after YouTube cans two of my videos for talking about using a disinfectant to kill coronavirus (chlorine dioxide).... President Trump says they are looking at using disinfectants inside the body to kill coronavirus. That timing though. Can't make it up." Larry Cook, a major promoter of vaccine misinformation on Facebook and the operator of the biggest anti-vaccine group there, also promoted chlorine dioxide the day after Trump's comments, along with a laundry list of other specious cures...
Robin Abcarian at The Los Angeles Times:
About five years ago, Melissa Eaton, 40, a mom in Salisbury, N.C., whose 10-year-old son has autism, banded together with other mothers of autistic children to infiltrate pseudoscience groups on social media that were promoting questionable autism treatments, including chlorine dioxide, the industrial bleach sold by Genesis and others. In 2013, she said, a disciple of Grenon’s, Kerri Rivera, began promoting the bleach as a cure for autism. Rivera moved to Mexico after Illinois shut down her business. She is now believed to be living in Germany with the father of an autistic child who sought her services in Mexico.
“When I saw the abuse and harm, it wasn’t something I could let go of,” Eaton told me, adding that she sees her son as someone whose brain works differently, not someone who needs curing. “I saw photos of children’s bloody intestinal lining on their diapers. They had given their children this product and this is what came out. And the fact was they thought it was a parasite and autism was leaving.”

John J. Pitney, Jr. at  USA Today:
President Donald Trump is un-American in many ways. He disregards our Constitution and laws. He denies the central truth of our Declaration of Independence, that all men are created equal. He defends Vladimir Putin’s attack on American exceptionalism. And he undercuts science.
For Trump, “science” is whatever makes him feel good or serves his short-term interests. Whereas real scientists devote their lives to rigorous testing, Trump thinks that it’s all in his gut: “I have a natural instinct for science.”

We have recently seen what his gut produces. In late February, he ignored scientific projections and said the number of COVID-19 cases “within a couple of days is going to be down to close to zero.” This false hope encouraged his supporters to delay taking protective action. Trump has mused aloud about the curative properties of disinfectant and an anti-malaria drug. The results were predictable and predicted. Supplies of the medication ran short, and disinfectant manufacturers had to warn customers not to drink their wares.
...
Trump claims to be pro-vaccine but he has pushed the thoroughly debunked notion that the measles-mumps-rubella (MMR) vaccine causes autism. “If I were President,” he tweeted in 2014, “I would push for proper vaccinations but would not allow one time massive shots that a small child cannot take - AUTISM.” Even worse, he added: “I am being proven right about massive vaccinations—the doctors lied. Save our children & their future.” So besides hawking misinformation, he was actively undermining confidence in medicine.

Tuesday, April 28, 2020

DeVos Won't Seek IDEA Waiver Authority

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education is proving to be very difficult.

A release from the Department of Education:
U.S. Secretary of Education Betsy DeVos today reaffirmed her long-held position that individualized education must take place for all students, including students with disabilities. As a result, the Secretary is not recommending Congress pass any additional waiver authority concerning the Free Appropriate Public Education (FAPE) and Least Restrictive Environment (LRE) requirements of the Individuals with Disabilities Education Act (IDEA), reiterating that learning must continue for all students during the COVID-19 national emergency.
As requested by Congress in the Coronavirus Aid, Relief, and Economic Security (CARES) Act, Secretary DeVos examined certain federal education laws to determine what, if any, additional waiver authority the Secretary believes is necessary to provide limited flexibility to state and local education agencies during this unprecedented time. The Secretary determined there is no reason that a student's access to FAPE cannot continue online, through distance education or other alternative strategies.
...
While not advising any waivers to the core tenets of IDEA, the Department is requesting that Congress consider additional flexibilities on administrative requirements under the Perkins Act, the Rehabilitation Act of 1973, and the IDEA.
The Secretary requested that Congress defer the work or repayment requirements or allow credit to be given for the service obligation for recipients of IDEA personnel preparation grants (personnel development scholarships) if employment was interrupted by COVID-19.
Regarding the Perkins Act, the Secretary is also recommending a waiver that would allow local education agencies (LEAs) to keep any funds allotted to them for the 2019-2020 academic year that they have not spent during the COVID-19 national emergency. Without this waiver, LEAs would otherwise lose this money and have to return it to the state.
The Secretary also requested Congress to permit Vocational Rehabilitation funds to be used to replace expired or spoiled food products at Randolph-Sheppard vending sites required to close due to COVID-19, thus providing support to vendors and allowing facilities to reopen more efficiently following the COVID-19 pandemic.
The Secretary recommended several additional waiver authorities relating to the Perkins Act, the Adult Education and Family Literacy Act, the IDEA, and the Rehabilitation Act of 1973. For a complete list of waiver recommendations and to access the full Recommendation of Waiver Authority report to Congress, click here.

Monday, April 27, 2020

The Next COVID Bill

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  Congress has attempted to respond.

The undersigned members of the Consortium for Citizens with Disabilities (CCD) Task Force on Developmental Disabilities, Autism, and Family Support urge you to include the following programs in the next COVID-19 bill. The mission of the task force is to advocate for federal public policies that directly relate to individuals with developmental disabilities, autism spectrum disorders, family supports, and the prevention of child abuse and neglect. These programs were not included in previous COVID legislation and demand for the services they provide have increased dramatically in the last several weeks, leaving them unable to meet the needs of people with developmental disabilities and their family caregivers.
Among the programs:
We urge Congress to allocate emergency funding to the Administration for Community Living to fund a National Autism and Other Developmental Disabilities Resource Network and Navigator Program. This resource network would help ensure access to specially trained navigators who can provide person-centered case management across the lifespan and referrals to local providers, and resources and information during this time and throughout the recovery. This program is needed to fill the gap in existing programs – namely, the Family-to-Family program (described below) which assists families of children with special health care needs with health care related issues, and the Parent Training and Information Centers under the Individuals with Disabilities Education Act (IDEA), which serves families of children and young adults needing assistance with issues related to early intervention, pre-school, elementary, and secondary education. A new navigator program would help meet the range of needs of adults with developmental disabilities who are not served by these other family support programs.
...
LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (LEND) As affirmed by the Congressional Autism Caucus on March 21, 2020, the rapid shift to telehealth for assessment and treatment has a disproportionate impact on people with disabilities and their families. Critical support is needed to continue access to evaluation and treatment. The 52 programs funded under Autism CARES Act (P.L. 116-60) provide an existing infrastructure that is pivoting to meet this need and has capacity, with emergency funds, to provide access to assessment and treatment for people with neurodevelopmental disabilities and their families. We request $20 million to HRSA’s Autism and other Developmental Disabilities program for the LENDS.

Signers include  the Autism Society of America and the Autistic Self Advocacy Network.

Sunday, April 26, 2020

Autism, COVID-19, and Misinformation


In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

Some autism parents are fighting back.
Melissa Eaton, Anne Borden King, Emma Dalmayne and Amanda Seigler write at The New York Times:
For the past five years, as concerned parents of autistic kids, we’ve been documenting, following and reporting the “bleach cures” movement. The Genesis II Church and Kerri Rivera, among others, have been selling products like chlorine dioxide, marketed as “Miracle Mineral Solution,” or M.M.S., stating that the substances will cure autism, acne, cancer, diabetes, Covid-19 and so much more. This is a crucial red flag for pseudoscience: When a product claims it can cure anything, it’s a fake.
...
From monitoring these groups, we’ve watched as the marketing of the “biomedical cure” industry has become increasingly linked with a distrust of social institutions in general. Much of it is based around the autism-vaccine myth, first made popular by Andrew Wakefield and later perpetuated by Jenny McCarthy, Robert Kennedy Jr. and others.
President Trump himself has lent support to the autism-vaccine myth, tweeting in March 2014:
The belief that there is a link between vaccines and autism has been disproved by many studies, but some parents still decline to vaccinate their children. As a result of lower vaccination rates, communities around the world have experienced outbreaks of measles, mumps, rubella and other serious illnesses.
...Thousands of parents have been swayed into the dark world of autism “biomedicine” and their children have become 24-hour test subjects for dangerous protocols such as M.M.S., chelation and other products that have no evidence of benefit and clear evidence of harm. We think of the case of Abubakar Tariq Nadama, who died following a “chelation for autism” treatment.

...
Think about the message this sends to children with autism. To know your parents want to “cure” your neurological differences to the extent that they would feed you bleach multiple times a day is devastating.
... 

Saturday, April 25, 2020

MMS Redux

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

Ed Pilkington at The Guardian:
The leader of the most prominent group in the US peddling potentially lethal industrial bleach as a “miracle cure” for coronavirus wrote to Donald Trump at the White House this week.
In his letter, Mark Grenon told Trump that chlorine dioxide – a powerful bleach used in industrial processes such as textile manufacturing that can have fatal side-effects when drunk – is “a wonderful detox that can kill 99% of the pathogens in the body”. He added that it “can rid the body of Covid-19”.
A few days after Grenon dispatched his letter, Trump went on national TV at his daily coronavirus briefing at the White House on Thursday and promoted the idea that disinfectant could be used as a treatment for the virus. To the astonishment of medical experts, the US president said that disinfectant “knocks it out in a minute. One minute!”
He went on to say: “Is there a way we can do something, by an injection inside or almost a cleaning? Because you see it gets in the lungs and it does a tremendous number on the lungs, so it’d be interesting to check that.”

Trump did not specify where the idea of using disinfectant as a possible remedy for Covid-19 came from, and the source for his notion remains obscure. But the Guardian has learned that peddlers of chlorine dioxide – industrial bleach – have been making direct approaches to the White House in recent days.
Grenon styles himself as “archbishop” of Genesis II – a Florida-based outfit that claims to be a church but which in fact is the largest producer and distributor of chlorine dioxide bleach as a “miracle cure” in the US. He brands the chemical as MMS, “miracle mineral solution”, and claims fraudulently that it can cure 99% of all illnesses including cancer, malaria, HIV/Aids as well as autism.
Since the start of the pandemic, Genesis II has been marketing MMS as a cure to coronavirus. It advises users, including children, to mix three to six drops of bleach in water and drink it.
In his weekly televised radio show, posted online on Sunday, Grenon read out the letter he wrote to Trump. He said it began: “Dear Mr President, I am praying you read this letter and intervene.”
Presidential words have consequences.  Philip Obaji, Jr. at The Daily Beast:
Just hours after U.S. President Donald Trump suggested research into whether coronavirus might be treated by injecting disinfectant into the body, viral messaging about drinking such liquids or taking them intravenously began to spread across Nigeria on WhatsApp.

One typical message seen by The Daily Beast claims falsely that the U.S. government has “approved the use of disinfectants with high alcohol content and anti-microbial properties to treat patients with coronavirus.” Another WhatsApp message broadcast far and wide in this most populous African nation says disinfectants “work instantly” and Trump "has given the go ahead" for them to be used in COVID-19 treatment.

Friday, April 24, 2020

Antivaxxers Joint Anti-Lockdown Protests

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread

There are signs of considerable overlap between the antivax movement and the anti-shutdown movement.

The anti-vaccine movement has never been limited to one political party. Left-leaning vaccine critics — such as Children’s Health Defense, led by Robert F. Kennedy Jr. — include environmentalists who are suspicious of chemical pollutants, corporations and “Big Pharma.” The Kennedy group’s website attacks Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, for rushing “risky and uncertain coronavirus vaccines” into development as part of a “sweetheart deal” for drug companies.
On the other side of the political spectrum, many anti-vaccine conservatives oppose state immunization requirements because they distrust “big government.”
  • A group called Texans for Vaccine Choice has called on the governor to promise that no one will be forced to get a coronavirus vaccine in order to go to work or school.
  • Posts on the Facebook page of Californians for Health Choice, which also opposed California’s vaccine laws, question stay-at-home orders and accuse government officials of refusing to admit the orders are a mistake.
  • In a video on the Freedom Angels’ Facebook page, its founders describe stay-at-home orders as an abuse of government authority, and the closure of California gun shops as an assault on the Second Amendment. The group notes that guns could be essential for protection from rioters and looters looking to steal food during the pandemic.
In many ways, the conservative arm of the anti-vaccine movement is a natural ally for those leading “reopen America” rallies, said Dr. David Gorski, an oncologist and managing editor of the Science-Based Medicine site. Both harbor suspicions about government authority.
Vaccine critics, for example, have long championed the false claim that vaccines cause autism, and that the Centers for Disease Control and Prevention has tried to cover up that information, Gorski said. Trump has at times linked vaccines with autism, although he came out strongly in favor of vaccinations during the 2019 measles epidemic.

Thursday, April 23, 2020

Federal Legislation and COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.    The Autism Society sums up federal policy related to COVID-19:
The Autism Society has been advocating for the inclusion of the needs of people with autism in federal legislation related to COVID-19. As of April 15, three bills have been signed into law to help states respond to the crisis. The Autism Society along with its partners were successful in getting some provisions included in the three laws. These include:
  • Coronavirus Preparedness and Response Supplemental Appropriations Act – $8.3 billion in new funding for a robust response to the coronavirus, including support for state and local health agencies, vaccine and treatment development, and loans for affected small businesses to lessen the economic blow of this public health emergency.
  • Families First Coronavirus Response Act – $3.4 billion to provide for coronavirus testing (free for those uninsured), increased paid leave, enhanced Unemployment Insurance to those unable to work, and increased funding for food security programs (SNAP).
  • Coronavirus Aid, Relief, and Economic Security Act (CARES Act) – a $2 trillion emergency relief bill to address the economic and public health emergency. This law includes provisions specific to the autism community such as home and community-based services supports, family supports, educational supports. During consideration of the bill, the Autism Society signed onto a community letter opposing the exclusion of non-profits from receiving emergency loans. This exclusion was ultimately struck and non-profits are eligible for the Paycheck Protection Program (PPP) to help them get through the pandemic. The Autism Society provided a detailed Summary of the bill with a disability focus.
  • A bill (HR266) to replenish the Paycheck Protection Program and to provide additional funds to states to assist hospitals and ramp up national testing for the Coronavirus was passed in the Senate on April 21 by unanimous consent. The bill is expected to pass in the House on April 23. The House members will vote in groups to observe physical distancing.

Wednesday, April 22, 2020

GAO: Department of Education Does a Poor Job of Collecting Data on Restraint and Seclusion

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

The Government Accountability Office has a new report titled "Education Needs to
Address Significant Quality Issues with its Restraint and Seclusion Data." 
The Department of Education’s (Education) quality control processes for data it collects from public school districts on incidents of restraint and seclusion are largely ineffective or do not exist, according to GAO’s analysis of school year 2015-16 federal restraint and seclusion data—the most recent available. Specifically, Education’s data quality control processes were insufficient to detect problematic data in its Civil Rights Data Collection (CRDC)—data Education uses in its efforts to enforce federal civil rights laws (see figure). For example, one rule Education used to check the quality of data submitted only applied to very large school districts, although GAO and Education’s own analyses found erroneous reporting in districts of all sizes. Education also had no rules that flagged outliers that might warrant further exploration, such as districts reporting relatively low or high rates of restraint or seclusion. GAO tested for these outliers and found patterns in some school districts of relatively low and high rates of restraint or seclusion. Absent more effective rules to improve data quality, determining the frequency and prevalence of restraint and seclusion will remain difficult. Further, Education will continue to lack information that could help it enforce various federal civil rights laws prohibiting discrimination.
Officials in the nine school districts GAO visited lacked a common understanding of the CRDC’s restraint and seclusion definitions. Similarly, officials GAO interviewed in all three state educational agencies (Kentucky, Washington, and Wisconsin) and all seven stakeholder groups expressed similar concerns about the clarity of these definitions. For example, officials inconsistently interpreted the word alone in the definition of seclusion and, therefore, on whether to count an incident if a teacher was in the room. Absent clearer definitions, Education will continue to lack quality information on restraint and seclusion in public schools. Officials in school districts GAO visited identified several benefits to collecting these data, including identifying patterns in student behavior and developing interventions that can reduce the need for restraint and seclusion. Officials also said that analyzing their data helped them identify needs for additional staff training and student support services.
In its letter to Congress, GAO says:
Although Department of Education (Education) data show that the number of incidents of restraint and seclusion of students in K-12 public schools is small, data analyzed for our June 2019 report showed that the\true nationwide extent of these practices cannot be determined because the data do not reflect all incidents of restraint and seclusion. This is particularly concerning because, as we reported earlier, some of the most vulnerable public school students—students with disabilities—are disproportionately affected.

Antivaxxers and Anti-Shutdown Protests

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread

There are signs of considerable overlap between the antivax movement and the anti-shutdown movement.

Carl Marinucci and Jeremy White at Politico:
They didn’t have masks, they weren’t into social distancing and they brought lots of signs, and some anger — some of it fueled, critics say, by the president of the United States.
But the arrival of a crowd of a couple of hundred protesters at the state Capitol underscored the growing efforts by conservative groups to push back at ordered shutdowns aimed at controlling the Covid-19 epidemic.
The organizers of Monday’s Sacramento event called themselves “Freedom Angels“ — but as CALMatters’ Laurel Rosenhall tweeted, many were regulars in the recent CA anti-vaxx movement. Already, they’re promising weekly rallies on Facebook with more “Operation Gridlock” efforts planned for April 24 and May 1.
Will Sommer and Jackie Kucinich at The Daily Beast:
Del Bigtree, a notorious anti-vaccination activist before the emergence of COVID-19, attended a reopening rally in Austin last weekend to find out why the protesters were showing up. Bigtree told The Daily Beast that he saw a lot of overlap between anti-vaccine activists who distrust vaccines and the rally-goers, who were complaining that the public health policies put in place by state governments are unconstitutional and draconian relative to the health crisis at hand.

“I think the science is falling apart,” Bigtree said, citing models he called “a disaster.”

On April 17, Bigtree featured Wendy Darling, founder of anti-stay-at-home-order group “Michigan United for Liberty” and an attendee of one of the Michigan protests, on his online show The High Wire, which usually dedicates programming to questioning health professionals and settled science. Asked by Bigtree whether the demonstrations showed that at least some Michiganders “are not afraid of dying from the coronavirus,” Darling said: “In our group, in particular, we've got thousands of people in Michigan United for Liberty and the consensus there is, you know, we are not. We're more afraid of the government than we are of the virus at this point.”

Bigtree isn’t the only drawing connections between the anti-vaccine movement—which advocates for the fallacious notion that vaccines cause autism or other ailments—and the movements against the stay-at-home orders. Anti-vaccine activists have pushed a hashtag calling for President Donald Trump to fire the government’s top infectious disease expert, Dr. Anthony Fauci—a message that evolved into a “Fire Fauci” chant at the Texas rally Bigtree attended. Some participants in the reopening rallies have also adopted “I Do Not Consent” as their go-to sign formulation, which is the same language that’s become a popular phrase for anti-vaccination activists.

Brandy Zadrozny and Ben Collins at NBC:
Protests against state stay-at-home orders have attracted a wide range of fringe activists and ardent Trump supporters. They have also attracted a family of political activists whom some Republican lawmakers have called "scam artists."
A family-run network of pro-gun groups is behind five of the largest Facebook groups dedicated to protesting the shelter-in-place restrictions, according to an NBC News analysis of Facebook groups and website registration information.

The groups were set up by four brothers — Chris, Ben, Aaron and Matthew Dorr — and have amassed more than 200,000 members collectively, including in states where they don't reside, according to an NBC News analysis based on public records searches and Facebook group registrations.
...
The Facebook groups started by the Dorrs each promote state-specific websites, which were registered with the same private registrar, and use similar language in their descriptions.
...
The websites, such as ReOpenPA.com and ReOpenMN.com, were initially shared by the same network of pro-gun and anti-vaccination sites, regardless of region, according to an analysis using the Facebook analytics tool CrowdTangle, which lets people track the spread of content on the platform.
For example, ReOpenPA.com and ReOpenMN.com were initially shared by the Dorr-affiliated Facebook groups Ohio Gun Owners, Pennsylvania Firearms Association, New York Firearms Association, a pro-Trump group called Ohio First and an anti-vaccine group called VaXism.

Tuesday, April 21, 2020

NYT Article on Causation

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies -- including one about grandparental age.

Nicholette Zeliadt at NYT:
In the past 50 years, scientists have compiled a short list of factors, including certain genes, premature birth, and some medications, that might contribute to autism. They have begun to understand which people have the greatest chances of having a child with autism, and they have identified a few things you can do to minimize those chances.
...
Until the 1970s, many experts subscribed to now-discredited notions about autism being caused by “cold” parenting styles or growing up in extreme isolation (as in the famous case of the Wild Boy of Aveyron in France in the late 1700s). Since then, studies have shown autism runs in families and have put its heritability at around 80 percent, or about as heritable as height or eye color.
...
So, autism is highly genetic, but that doesn’t mean environmental factors are unimportant, said Dr. Brian Lee, Ph.D., associate professor of epidemiology and biostatistics at the A.J. Drexel Autism Institute in Philadelphia. Height, for example, is influenced by environmental factors like malnutrition. “You can have a genetic underlying factor that puts you at risk, but there may need to be some sort of an environmental condition or trigger,” Lee said.
S.S.R.I.s are strong candidates for factors that could trigger autism. They act on the brain chemical serotonin, which is important for social function and is found at high levels in some autistic people, and many of them cross from a woman’s blood into the womb.
But Dr. Alan Brown, M.D., professor of psychiatry and epidemiology at Columbia University, said that it’s difficult to separate the effects of a medication from a pregnant woman’s reason for taking them — her underlying mental health condition. Several recent studies suggest that the autism risk associated with S.S.R.I. use is very small, perhaps nonexistent. “The literature is confusing on S.S.R.I.s and autism,” Brown said. “Some studies show the association, others don’t.”
Researchers also have looked into prenatal exposure to toxins, such as pesticides or air pollution, and have come up with similarly inconclusive results. They have found no increased autism risk related to prenatal smoking, cesarean section, fertility treatments or vaccines.

Monday, April 20, 2020

American Academy of Pediatrics on Disability Discrimination in Organ Transplants


AAP: Scarcity of transplant organs does not justify excluding children with disabilities
Mindy B. Statter, M.D., M.B.E., FACS, FAAP and Garey H. Noritz, M.D., FACP, FAAP
April 20, 2020 AAP Policy
The demand for transplantable solid organs far exceeds the supply of deceased donor organs. Like the debate as to which patients will receive lifesaving interventions during the coronavirus disease 19 (COVID-19) pandemic, individual transplant programs must make eligibility determinations based on the principle of utilitarianism — doing the greatest amount of good for the greatest number of people.
Given the scarcity of solid organs for transplantation, allocation to those most likely to gain the most benefit takes into consideration both medical and psychosocial factors. Children with intellectual and developmental disabilities (IDDs) historically have been excluded as potential recipients of organ transplants.
A new AAP policy states that denying transplantation to people with disabilities on the basis of their disability and supposed lower quality of life may constitute illegal and unjustified discrimination.
The policy, Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients from the AAP Committee on Bioethics and Council on Children with Disabilities, is available at https://pediatrics.aappublications.org/content/early/2020/04/16/peds.2020-0625 and will be published in the May issue of Pediatrics.
Facts, ethical issues
The decision to initiate transplant must include consideration of both the individual’s quality of life with the diseased organ and the potentially improved quality with the transplanted organ.
The notion that children with disabilities have a lower quality of life than children with typical development is both incorrect and ethically problematic in decisions regarding organ transplantation (Albrecht GL, Devlieger PJ. Soc Sci Med. 1999;48:977-988).
Transplant success rates in patients with disabilities are as good as in the general population, so care must be taken to ensure that medical and psychosocial factors that may affect the transplant outcome are not confused with judgments of an individual’s social worth (Galante NZ, et al. Nephrol Dial Transplant. 2010;25:2753-2757).
The presence of an IDD is relevant but should not be the determinative factor.
Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities. In adhering to the ethical principles of respect for persons, utility and justice, children with IDDs should not be excluded from the potential pool of recipients and should be referred for evaluation as recipients of organ transplants, according to the policy statement. Deceased children with disabilities can be organ donors and contribute to the supply of solid organs, so it would be unfair to categorically exclude them as organ transplant recipients.
Recommendations
Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability.
Transplantation programs should standardize the definition and assessment of intellectual disability so that transplant decisions can be individualized, equitable and transparent. The transplant team should consider the individual’s cognitive and adaptive skills. There should be concordance among the respective solid organ transplant programs within an institution in defining IDD to avoid biases.
The transplant evaluation is a collaborative process that should occur in person rather than by medical record review. It should include caregivers such as therapists and developmental specialists who can demonstrate the patient’s degree of function, as well as professionals with expertise in the evaluation and management of individuals with intellectual disability.
Drs. Statter and Noritz are lead authors of the policy statement. Dr. Statter is a member of the AAP Committee on Bioethics. Dr. Noritz is a member of the Council on Children with Disabilities Executive Committee.

Sunday, April 19, 2020

The Neurodiversity Movement


At Psychology Today, Jason Tougaw writes about the movement:
Ari Ne’Eman is the founder of the Autistic Self-Advocacy Network, appointed by Barack Obama to the U.S. National Council on Disability. John Elder Robison is an autobiographer, policy consultant for the national Interagency Autism Coordinating Committee, and visiting faculty member in The College of William and Mary’s Neurodiversity Initiative, the first university program of its kind. Carly Fleishmann is the nonverbal host of Speechless, a comedic YouTube talk show, and co-author (with her father, Arthur Fleischmann) of Carly’s Voice: Breaking through Autism. Neurodiversity blog's include Dani Alexis Rykamp's Neuroqueer, a collective blog for multiple authors “queering our neurodivergence” and “neurodiversifying our queer; Debra Muzikar's The Art of Autism, another collective blog focused on visual art; an Erin Human's illustrated blog, which includes infographics, writing, and graphic design. Cartoonist Ellen Forney has published Marbles, a graphic memoir about her bipolar experience and Rock Steady: Brilliant Advice From My Bipolar Life, perhaps the funniest self-help book of all time. DJ Savarese, the first nonspeaking graduate of Oberlin College, is a prolific poet who co-directed, DEEJ, an intimate, political film about his experience. In his words, "Inclusion shouldn't be a lottery."

Neurodiversity--the concept and the movement--is not without controversy, particularly surrounding autism. In a recent Scientific American article Simon Baron-Cohen observes that proponents of a more strictly medical model of autism "argue that the severe challenges faced by many autistic people fit better within a more classical medical model. Many of these are parents of autistic children or autistic individuals who struggle substantially in any environment." Fierce debates rage between those who advocate for a medical cure for autism and neurodiversity activists who argue that a world built on neurotypical norms prevents neurodivergent people from thriving--and, in fact, extends a historical legacy of severe medical mistreatment of people whose minds and brains diverge from those norms.
...

One thing is clear: The neurodiversity movement has demonstrated--and made public--the talents an cultural contributions of people once dismissed wholesale. In many cases, these talents and contributions emerge directly from the eccentric neurologies of people like Amethyst Schaber and Eleanor Longden. The evolution of culture, art, science, and politics depends on a diversity of minds and people.