RFK Jr. on Celebrity Instagram

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Anna Merlan at Vice:

In a public health development that one can safely characterize as “not great,” actor Alec Baldwin appeared on Instagram Live on Thursday with Robert F. Kennedy Jr., a formerly respected environmentalist who’s been best known in recent years for promoting severe vaccine misinformation. As Baldwin listened obligingly, Kennedy promoted a variety of wildly false claims about vaccine safety, and speculative concerns about the quarantine measures being taken to combat the COVID-19 pandemic in the United States. Baldwin’s Instagram account has 1.8 million followers, and the video, in less than two hours, garnered more than 43,000 views. This is not precisely what we need right now.

Back to Virtual School

 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.

Perry Stein and  Valerie Strauss at WP:

Antwon Gibson’s public high school in Northeast Washington didn’t even attempt to teach his “independent living” class virtually this spring. The gregarious 18-year-old has an intellectual disability and reads and performs math below grade level. He’s been out of the classroom since schools closed in March and now requires more help from his family to break down multi-syllabic words.

Ayo Heinegg’s son, a rising sixth-grader in the District with dyslexia and attention-deficit/hyperactivity disorder, is typically a high-performing student. But he struggled to keep up with his coursework on multiple online platforms and lost his confidence in the classroom.

And in Loudoun County, 8-year-old Theo Duran, who is autistic, struggles more to walk up the stairs or hold a crayon to write — all tasks he was making progress on before the coronavirus pandemic hit and shut down his school.

Parents across the country who have students with special education needs say the stakes are high if schools do not reopen soon. They say their children are not just falling behind academically but are missing developmental milestones and losing key skills necessary for an independent life.

Resources from the Autism Society:

Resources for Back to School Adjustments

• Back to School: Know Your Rights by the Autism Society of America
• Facebook Live Special: “Back to School: A Global Discussion on Supporting Students with Autism”
• Educating All Learners: The Autism Society is part of this alliance dedicated to equity for complex learners.
• Interim Guidance for COVID-19 Prevention and Control in Schools by UNICEF
• COVID-19 Information and Resources for Schools and School Personnel by the U.S. Department of Education

Individualized Education Plan (IEP) Resources

• Autism Society’s Coronavirus Information Series Episode: “Preparing your IEP for Back to School” with Anne Holmes of MyHana
• Autism Society’s IEP Contact Center
• Questions and Answers to Providing Services to Children with Disabilities During the Coronavirus Disease 2019 by the Centers for Disease Control
• How to Handle IEPs During the Coronavirus Crisis – Expert Advice By Education Week
• COVID and IEPs: Education for Children with Special Needs by Boston Children’s Hospital
• Special Education Guidance and Resources for COVID-19 by the Connecticut Department of Education
• Legal FAQ, Remote IEP meetings and Evaluations by Understood

Public Policy and Advocacy

• Ignite Public Policy Newsletter: Information on Schools Reopening and Legislation
• Know Your Rights – a Resource by the Autism Society of America
• National Disability Rights Network’s State by State School Reopening Plan Compilation (updated every 2 weeks)
• State Advocacy Toolkit – Updated for August 2020
• Special Education Advocacy During COVID-19 by Asperger/Autism Network
• Rights of Caregivers in Hospitals during COVID by the Consortium for Citizen with Disabilities
• Civil Rights, HIPPA, and the Coronavirus Disease 2019 by the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services

Affiliate Highlights

• Howard County Autism Society’s “Homeschooling Children with Special Education Needs: Important Considerations“
• Autism Society North Carolina’s “Addressing School Concerns During COVID-19“
• Post Secondary Transition Assistance by Autism of Society of Iowa

Cliffs

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Autistic adults face several cliffs:

• The age cliff, where IDEA services cut off at the 22d birthday;
• The income cliff, where SSI and other benefits cut off if a person makes too much;
• The IQ cliff, where some states decline to provide certain services to autistic people with scores above a certain level.

In Meriden, Connecticut Matthew Zabierek reports at The Record-Journal:

Many middle-income families just outside the Medicaid financial requirements are never eligible to receive services from DSS and must carve out services and a path to independence on their own.

“Sometimes it’s a matter of points that separates who qualifies and who doesn’t qualify. And the person just over the cutoff still needs support, and the housing and the services aren’t necessarily available, so they fall into that vulnerable place,” Exum said.

In addition to financial requirements, Sharon Cable said finding services for her son is also made difficult by an unusual “IQ cutoff” enforced by state statute. Connecticut is one of the last states in the country that still uses the medical diagnosis of mental retardation, measured by having an IQ of 69 or lower, to determine whether people with autism are eligible for certain services.

Decades ago, the majority of people diagnosed on the spectrum were also considered intellectually disabled, however, the federal Department of Human Services reported to Congress in 2017 that 31.6 percent of children with ASD are intellectually disabled.

Under state law, an individual who scores an IQ of 69 or lower receive services from the Department of Developmental Services (DDS), while those with an IQ of 70 or higher receive services through the Department of Social Services (DSS).

This cutoff puts individuals with an IQ of 70 or above at a disadvantage because DDS generally offers more services and has shorter waitlists, advocates say, though they note even DDS still has wait times for services like day and residential programs and behavioral services.

“There are still hundreds of families that are upset about lack of what they would think would be appropriate services from DDS,” Macnab said.

Advocates, families, and medical professionals for years have lobbied the legislature to do away with the “IQ cut off” because they argue it’s not the best indicator of need and precludes many families from services.

Transition and UAP

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.

In The Encyclopedia of Autism Spectrum Disorders, Eric Benninghoff has an excellent article titled "Politics of Autism Transition Services."  This excerpt describes one program in California:

The Uniquely Abled Project (UAP) provides post-high school vocational opportunities to young adults with ASD, matching the unique skills of autistic individuals to high-demand career jobs, in a way that is scalable and free to parents. Founder Ivan Rosenberg, a management consultant and parent of two children on the spectrum, saw himself as a “business person dealing with a social problem” – confronting two major challenges he believed could become solutions for each other: (1) the soaring unemployment rate for millions of Americans with disabilities and (2) the fact that many businesses lack access to a skilled workforce (Rosenberg 2020).

Rosenberg identified several barriers related to the unemployment problem:

• Use of the word “disabled”
• Lack of understanding among employers and job developers regarding the potential of people with autism
• Insufficient affordable, vocational education programs for people with ASD
• Scarce efforts to match unique abilities to the specific needs of jobs (Rosenberg 2020) 

UAP works within existing education and employment systems to create a structure of collaboration between different stakeholders – including autistic employees, educators at community colleges, job developers at state agencies, autism specialists, and private employers – under the banner of a single program. Its 16-week academy comprehensively trains, places, and provides ongoing support to individuals with ASD by (1) matching diagnoses to jobs, (2) offering vocational and soft skills training through community colleges, (3) teaching instructors how to train autistic students, (4) educating job developers to find specific manufacturing jobs students are being trained for, (5) coaching employers on how to work with autistic employees, and (6) providing post-hire support to academy students (Rosenberg 2020).

UAP provides consulting and facilitates collaboration to get programs started in different locales. The academy’s first major job match has been between people with high-functioning autism, who are often good at repetitive work with clear instructions, and entry-level computerized machine operator jobs in the manufacturing industry. To date, it has been quite successful, with an estimated 69 machine operator job placements out of 70 graduates since August 2016 (Rosenberg 2020). Because UAP works within the existing community college and employment agency systems, the cost of the program is low – about $3,000–5,000 per student, which is subsidized by regional centers, state agencies, and banks (Rosenberg 2020). UAP plans to expand its approach and business model to assist more challenged autistic individuals while diversifying to other industries.

Several lessons can be learned from UAP’s:

• Comprehensive, collaborative training model within existing systems
• Identification of high-demand jobs that match with unique abilities of ASD individuals
• Desire to empower abilities of people with ASD within a culture of high expectations
• High placement rate, low cost, and potential for scalability 

Relative success stories can often be attributed to resource access and money; however, innovative ideas, cross-sector collaboration, effective employer outreach, and a culture of high expectations also play a significant role. Although the autistic young adults participating in these two programs are predominantly “high-functioning” on the spectrum, several lessons and themes regarding the broader transition services system can be distilled. It is critical to generalize best practices from successful organizations to the larger autistic population – otherwise, only a select few will benefit.

Autism and Juvenile Justice

In The Politics of Autism, I discuss the neurodiversity movement.    I also note that we ought to have more comparative studies of autism politics and policy.

I read this book in manuscript.  It is a terrific and much-needed contribution to the field.

A release from Washington State:

Amid ongoing discussions of criminal justice reform, a Washington State University professor argues in a new book that now is the time to focus on better serving children and teens on the autism spectrum who become entwined in the juvenile justice system.

Youth on the spectrum need greater access to mental health support staff who can provide counseling and act as advocates, writes Laurie Drapela, an associate professor of criminal justice at WSU Vancouver, and author of “Law and Neurodiversity – Youth with autism and the juvenile justice systems in Canada and the United States.”

Drapela and co-authors Dana Lee Baker from California State University and Whiney Littlefield, a juvenile probation counselor in Washington’s Cowlitz County, think more training is necessary for police and corrections officers to help them better recognize the signs of autism. Significant effort also must be put into transitioning from a punitive response to the behaviors of children and teens with autism to identifying sources of community support for youth that often struggle with communication and social interaction.

By taking these steps, the juvenile justice system could improve at its stated goal: Reducing the likelihood of a child or teen taking part in criminal behavior as an adult.
“There is a real opportunity to start broadening how individuals involved in the juvenile justice system work with people on the autism spectrum who come to the attention of law enforcement,” Drapela said.

Baker, a former WSU faculty member, said she and Drapela saw the topic as understudied when approached by their publisher in 2016. A prior observation of a juvenile court procedure originally sparked her interest in researching how these systems fail youth on the autism spectrum.

“While observing a juvenile court hearing, I saw a child who clearly had autism bowing to the judge and people in the courtroom were laughing,” Baker recalled. “I was so struck by that moment. We can and should do better.”

One of their goals with the new book is to bridge the divide between researchers and juvenile justice practitioners. Demonstrating that punitive-centric systems fail children and teens with autism is central to that effort, Drapela said. It’s also vital that police officers and court officials better recognize signs that a child or teen they come into contact with is autistic and requires mental health support.

Children and teens of color on the autism spectrum face additional hurdles because popular frames of reference for autism, such as Dustin Hoffman’s character in “Rain Man,” are largely portrayed by white actors. It’s possible that police or corrections officers may miss cues that a youth of color is autistic because of this, among other factors, Drapela said.

One in 54 children in the United States is diagnosed with autism spectrum disorder, according to CDC data from 2016. Boys are four times more likely than girls to be diagnosed with autism. In Canada, the most recent prevalence rate is one in 66, per the country’s National Autism Spectrum Disorder Surveillance System.

Drapela and her coauthors focused on the history of juvenile justice systems in the two countries, finding that Canada does a better job of implementing social programs for youth with autism and connecting community stakeholders and social service agencies.

“One thing that really differentiates the United States is its very pointed interest on being harsh and using punitive measures,” Drapela said. “It pervades our culture.”

In tandem with reducing the use of punitive measures, Drapela argues the United States needs to reinvest in social support efforts.

“So much of what police engage with now are people with mental health issues, addiction problems, people who are poor or homeless, who would be better served by specialized social service workers,” Drapela said. “There are people who need jail cells, but in expanding the scope of the criminal justice system and shrinking the scope of our social assistance system, we’ve done a disservice to vulnerable populations.”

Additional resources in schools for students on the spectrum is also critical, as is additional training for school resource officers, Baker said.

“Behaviors exhibited by students on the spectrum may not be as different as behaviors in the environment at-large, yet they can be observed as criminal because of the lens being used,” she said.

Psychology of Misinformation

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Gayathri Vaidyanathan at PNAS:

Social scientists have identified at least three key factors governing how people absorb information, form beliefs, and modify behaviors—none of them having much to do with objective truth.

The first factor is social contagion, a formal name for people’s tendency to think and act like their friends and family
...

Another key factor is how messages are framed to evoke deeper narratives that already exist in the listeners’ minds. These cause-and-effect storylines can be especially powerful when they evoke negative emotions such as fear, anger, or disgust—even when the story is false. Take for example the following specious statement: “A medical expert working for the government found a causal link between vaccines and autism, but federal lawmakers influenced by the powerful pharmaceutical lobby helped bury the info.” Such messages are said to be “structurally coherent”: they are easy to grasp and recall. A coherent story works because our minds don’t just encode facts and events into memory, says Valerie Reyna, a psychologist at Cornell University in Ithaca, NY, and director of the university’s Human Neuroscience Institute. We also store the bottom-line meaning, or “gist”—and it is the stored gist, not the facts, that typically guides our beliefs and behaviors.

To demonstrate the importance of coherence, Reyna and David Broniatowski, director of the Decision Making and Systems Architecture Laboratory at George Washington University in Washington, DC, collected 10,000 tweets about vaccines from 2014 to 2017 (3). Then they looked for commonalities among the 46% that were retweeted. Quite consistently, they found that the retweeted posts had a strong (but false) bottom-line message about vaccines causing autism. Tweets that contained facts and statistics did not spread far.
...
But which gists resonate with us and which do we encode? Some scientists say that depends on the third factor: our “worldview”—what Reyna describes as preexisting internal stories based on our mental tapestry of culture, knowledge, beliefs, and life experiences.

Denial of Treatment

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.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of lifesaving care.

From the National Council on Independent Living:

On the eve of the thirtieth anniversary of the Americans with Disabilities Act (ADA) and in the midst of an unprecedented global pandemic, the National Council on Independent Living (NCIL) mourns the deaths of those who have died as a result of the denial of medical services, braces itself for more casualties to come, and condemns the inhumane practice of rationing healthcare that, although it has always been a concern for the disability community, has become an all-too-grim reality during this era of COVID-19.

The recent demise in Austin, TX, of Michael Hickson, a Black father of five who lived as the result of a cardiac incident with both spinal cord and traumatic brain injuries, has spearheaded a necessary conversation regarding the value placed upon life in the US. Hickson, who was taken to the hospital as a result of contracting COVID-19 in the nursing facility where he resided, was denied medical care, food, and water, ultimately starving to death, alone, on June 11th, 2020. The decision to deny Mr. Hickson treatment was made by his medical team and his court-appointed guardian and against the wishes of his family, who weren’t notified of Mr. Hickson’s death until a day after he passed away.

Michael Hickson’s life mattered – to his wife, to his children, and to his community. It should have mattered to the medical professionals charged to care for him. It didn’t – audio recordings of Mr. Hickson’s medical team clearly reflect that, because of his disabilities, they felt Mr. Hickson would be a waste of treatment. As states throughout the US move forward with initiatives intended to prioritize who during the pandemic will get care and rationalize about who will be denied, people with disabilities – who are disproportionately being impacted by COVID-19 at alarming rates – are left to grapple with the grim reality that healthcare settings, which are intended to provide care, are both a system of inequity and, as is the case with Mr. Hickson, an instrument of death.

The disability community deserves better, Michael Hickson and his family deserved better, and because of this, NCIL intends to file a complaint with the Office of Civil Rights (OCR) that will entail a request that they conduct a thorough investigation into the circumstances – and the myriad ADA violations that occurred – leading up to Mr. Hickson’s death. NCIL also seeks out legislative and organizational partners in the interest of joining forces on behalf of the disability community to ensure that, not only is the unfortunate trend towards medical rationing curtailed during the pandemic, it is seen for what it is by the general public: an unethical and barbaric practice that has no place in the US, moving forward.

NCIL filed the complaint yesterday.

Joseph Shapiro at NPR:

Disability groups have seen the Office for Civil Rights as an agency that will protect access to medical care during the pandemic. Groups in multiple states have filed complaints about state triage policies — often called "crisis standards of care plans" — that they feel allow medical providers to give lesser care to the elderly and people with disabilities.

One of the most recent complaints, filed July 22, comes from national and Texas disability groups, led by Disability Rights Texas. It asks the Office for Civil Rights to tell Texas to modify guidelines that allow hospitals to use a point scale to determine who is most likely to benefit from care when it is scarce. The point system, the complaint says, discriminates against people with disabilities because they lose points for their disabilities and underlying medical conditions.

The Office for Civil Rights has investigated complaints in other states and forced changes. Pennsylvania modified a system similar to the one now challenged in Texas; Alabama and Tennessee rewrote their rules to ensure that people with dementia, intellectual disabilities, traumatic brain injuries, advanced neuromuscular disease and other disabilities would not be denied ventilator and other care simply because of those conditions.

Now, the death of Michael Hickson, at that hospital in Austin, could be the next test of how doctors and hospitals, stressed by the coronavirus pandemic, provide medical care and whether they do it in a way that values the lives of people with disabilities.

"Infodemiology"

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

The Lancet -- which published and later retracted the infamous Wakefield article suggesting a link between vaccines and autism -- has an editorial on vaccine disinformation.

The tidal wave of information on the internet concerning the COVID-19 pandemic has resulted in difficulties in discerning truth from fiction. This so-called infodemic, defined by WHO as an “overabundance of information—some accurate and some not—that makes it harder for people to find trustworthy sources and reliable guidance when needed”, has become a major threat to public health. Infection rates will rise if people are confused about restrictions and patients may be harmed if they use unproven treatments or bogus remedies.

An urgent call for action to gauge, map, and develop a means of combating this problem was explored at a WHO-organised conference held across April, June, and July. The meeting, which focused on so-called infodemiology—the science behind managing infodemics—brought together experts from a range of disciplines, including epidemiology, public health, applied mathematics, and data science.

• View related content for this article

The term infodemiology was first used in 2002, although concern about misinformation in health and the need for fact-checking have long been present. But now, a growing mistrust in science and experts, poor and confusing responses by political and government leaders, and some people's reliance on social media as their sole source of information have made dealing with infodemics as acute as dealing with COVID-19 itself. While the discipline of infodemiology is in its infancy, some insights are emerging.

The groups generating and spreading egregious information are highly organised political or pseudoscientific bodies that are experienced at using nefarious techniques to propagate their narratives. These bodies can rapidly change their names and their key messages, moving from one campaign to another, and consciously seek and target vulnerable populations. Conspiracy theories and misinformation proliferate in times of uncertainty and fear. Such circumstances, exemplified by the COVID-19 pandemic, have occurred throughout history and been manipulated by populist politicians, anti-vaccination movements, climate change deniers, and the tobacco industry. Protagonists and propagators of such fake news have been shown to be motivated often by political and financial gain.

An analysis mapping Facebook interactions between nearly 100 million people with various viewpoints about vaccinations showed that individuals cluster into specific, dynamic, interconnected groups. Although small, the anti-vaccination group (4·2 million people) was highly connected with those who were undecided about the importance of vaccinations (74·1 million people). The pro-vaccination group (6·9 million individuals) was isolated and had little interaction with those who were both undecided and anti-vaccination. These observations show that health campaigners who to wish change people's minds ought to focus attention on those who remain open to both good and bad information.

Dealing with the infodemic relating to COVID-19 will need a combined global effort involving health organisations, governments, media outlets, and individuals. WHO has built myth-busting teams of internet-savvy communicators to stamp out disinformation related to COVID-19. The US Centers for Disease Control and Prevention has employed a global team of behavioural scientists and communicators to tackle infodemics as they relate to vaccine acceptance in low-income and middle-income countries. Social media platforms say they have increased efforts to remove disinformation and lead users to more trustworthy sources. However, Facebook, for example, is “rife with bogus cures and conspiracy theories that remain on the platform long enough to put millions of people at risk”, according to activists.

At The Lancet, the COVID-19 pandemic has given us salutary lessons about dealing with an infodemic. We are mindful that our readership now extends beyond the health and scientific communities. With this comes a responsibility to explain that different content types carry different weights of evidence, and how peer review and editorial input contribute to building scientific knowledge.

The problem of infodemics and the importance of infodemiology are escalating, and not just related to COVID-19. There is collective responsibility to produce clear, simple, honest messages, but individual digital and health literacy must also be strengthened. Behaviour change is needed, appreciating the importance of emotion, trust, credibility, and self-efficacy. The key to infodemics is not to produce even more information, but to address the environmental and social factors that make spreading misinformation easy.

Conflict Over Liability

In The Politics of Autism, I write about IEPs and FAPE. The Supreme Court ruled in Endrew F. v. Douglas County School District that the Individuals with Disabilities Education Act (IDEA) requires public schools to provide heightened educational benefits to students with disabilities.

Parents usually lose in due process hearings.

COVID is a new source of conflict.  Providing education is proving to be very difficult.

Corey Mitchell at Education Week:

In a joint report issued this month by AASA, the School Superintendents Association; the National School Boards Association, and the Association of Educational Service Agencies, the groups document growing concern among school leaders about IDEA-related litigation as schools struggle to fulfill students' individualized education programs during the pandemic.
...
More than four months have passed since schools began to shut down to curb the spread of coronavirus. Thus far, just a handful of federal lawsuits have been filed on behalf of students who receive special education services.

Anticipating the numbers will soon rise, the organizations behind the report wanted Congress to include the liability protections in the latest round of COVID-19 response legislation, but their request did not make the cut.

Lindsay Jones, the executive director of the National Center for Learning Disabilities, said the report and the related push for legislation was just another attempt to push for waivers that would let schools off the hook for their responsibility to educate all students.

"That report is a wolf in sheep's clothing," Jones said during the Education Writers Association's National Seminar earlier this month. "There's not much evidence that these types of lawsuits are coming forward."

Trump and the Anti-Vaxxers

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

The Center for Countering Digital Hate has a report titled "The Anti-Vaxx Industry; How Big Tech powers and profits from vaccine Misinformation."

While most anti-vaxxers are ambivalent about Donald Trump, an influential minority feel he shares their views on vaccines, Covid and online misinformation. As a result, they are voicing support for Trump and in one case are preparing to offer anti-vaxxers financial support in the upcoming US elections, risking increased polarisation of the debate over a future Coronavirus vaccine.

President Trump has previously expressed his sympathy for the antivaxx conspiracy theory that vaccines cause autism, and reporte ly met with anti-vaxxers including Andrew Wakefield ahead of his election in 2016. But this changed one Trump reached office. Last year Trump publicly backed vaccines when it became clear that measles outbreaks in the US were the result of poor vaccination coverage. Now he has backed the rapid development of a Coronavirus vaccine as a way out of the dilemma posed by the pandemic and its effect on the economy.

Despite this ambiguity over Trump’s position on vaccines and Covid, the antivaxx entrepreneur David Wolfe has used his Telegram channel to express support for Donald Trump’s attacks on social media platforms that have labelled his posts as false or dangerous. Wolfe, who has the largest total following of any actor in our sample, has also shared posts featuring the QAnon conspiracy theory that pits Donald Trump against an imagined “deep state”.Wolfe has also shared QAnon conspiracy material with his 12 million Facebook followers, including a meme about“The Great Awakening”, a QAnon term referring to a final confrontation with the Satanist cabal that adherents claim runs the world.

Disinformation at Warp Speed

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Jennifer Reich at Vox:

In order to move the vaccine to market quickly, companies are running multiple stages of clinical trials “in parallel” rather than sequentially. Researchers usually take months between phases to examine data and make sure they understand the information before proceeding, and trials take years, not months. Instead, Azar claims OWS will “compress and wring out every inefficiency in the process and take away every unused day” to expedite the research process. Federal agencies insist they are committed to safety and “will not cut corners” in licensing decisions. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, described his goals: “I really want to make sure that we don’t have a vaccine that’s distributed among the American people unless we know it’s safe and we know it is effective. … Not that we think it might be effective, but that we know it’s effective.”

Despite reassurances, there is signs that this rushed pace and inconsistent messaging from the White House about the severity of the outbreak is harming trust in the potential vaccine. As one Twitter post said, “‘Warp speed’ says it all. Project has been rushed and corners are being [cut]. No point producing a vaccine that could be more dangerous than the desease....but tell that to trump. Desperate to find a vaccine for a desease he thinks doesn’t exist. Bizarre.”

Vaccine critics, like those who work in Robert Kennedy’s Children’s Health Defense, an organization that aims to undermine vaccine usage and promote the widely discredited vaccine-autism link, have been quick to criticize this process, explaining how researchers made “the decision — deemed ‘morally questionable’ by some — to sidestep the standard process for vaccine development.”

... 

As health economist Jay Bhattacharya recently told a House Oversight Subcommittee on Economic and Consumer Policy, “the fallout from disinformation falsely linking the measles, mumps, and rubella vaccine to autism, seeding the anti-vaccine movement, is a cautionary tale.” Public health agencies, scientists, and government leaders would be wise to address misinformation with transparency, honesty, and clarity. Our lives may depend on it.

Report on Disability Employment

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.

From the National Council on Disability:

As the nation celebrates the 30th anniversary of the Americans with Disabilities Act (“ADA”), NCD reflects on the monumental social impact of this landmark civil rights legislation since its enactment on July 26, 1990. As a result of the ADA, people with disabilities enjoy protections that have allowed them to enter the competitive workforce, like protection from discrimination based on disability and the requirement of reasonable accommodations.

In this year’s statutorily required progress report, NCD acknowledges the achievements of the ADA over the past three decades but focuses attention on the persistent barriers that must be addressed in order to ensure the economic inclusion of people with disabilities into mainstream society in the future.

While significant progress has been achieved over 30 years, NCD found labor statistics continue to show extreme disparities between labor force participation rates of people with and without disabilities.

The report focuses heavily on the following areas:

• Services for Transitioning Youth – NCD found disparities between skills training and employment-related services available to transition-age youth with and without disabilities. Students without disabilities were more likely to receive opportunities in job shadowing, internships, part-time jobs, and volunteer work, which prepare them to enter the workforce successfully. To the contrary, students with disabilities were less likely to have these opportunities, putting them further behind their peers.
• Public Benefits – NCD identified employment disincentives tied to federal programs and other benefits which perpetuate a “poverty trap,” in which people with disabilities must choose to enter the workforce and risk losing the healthcare they need to live, or maintain their healthcare but remain impoverished indefinitely, due to the asset limitations imposed by federal means-tested programs.
• Support of Entrepreneurship – Finally, the report identifies opportunities to expand employment for people with disabilities in the future by analyzing programs available under the Small Business Administration (“SBA”). With nearly ninety-seven percent of businesses being classified as “small,” NCD found that this underutilized federal agency has the potential to engage with the broadest number of businesses across the country that could benefit workers with disabilities.

NCD urges policymakers to address these barriers by concluding the report with recommendations to the President, Congress, and the Administration.

From the report:

In this war for talent, employers now routinely recruit job-ready candidates with disabilities for competitive integrated employment to enhance their bottom line, deeply enrich the skills available within companies, and promote diversity. For example, in 2012, the Federal Home Loan Mortgage Corporation (Freddie Mac) partnered with the Autistic Self Advocacy Network to create an Autism Internship Program to match
the needs of its company with the capabilities of autistic people who had college degrees
in the fields of computer science, mathematics, and finance. Likewise, companies like
JP Morgan, SAP, DXC Technology (formerly Hewlett Packard Enterprise), and Microsoft also have autism hiring programs, built on the idea that such employees have unique skills traits that are especially useful in science, technology, engineering, and mathematics (STEM) industries and that removing barriers to entry for them will allow such companies to access an untapped labor pool. In 2019, JP Morgan Chase reported that employees in its Autism at Work program were 48 percent more accurate and as much as 92 percent more productive than peers in comparable positions.

Disability Rights and Civil Rights

In The Politics of Autism, I write:

“Civil rights” usually referred to the fight against racial segregation.  In several ways, this struggle set the template for other civil rights issues, including disability rights. First, cases such as Brown v. Board of Education demonstrated that disadvantaged groups could gain protections in the courts.  Second, movement leaders found that nonviolent protests could gain public sympathy and put pressure on elected officials. Third, civil rights statutes that helped African Americans would also point to means by which the government could protect other excluded groups. 

President George H.W. Bush signed the Americans with Disabilities Act 30 years ago today.

Vilissa Thompson and David J. Johns write at CNN:

In remembering disabled activists who were instrumental in the creation of America's disability rights movement and imagining what a more inclusive movement for social justice and full civil rights for the future could look like, we keep coming back to the partnership during the late 1970s between the Black Panther Party and the 504 activists, disability rights advocates who were pushing for implementation of a long-delayed section (section 504) of the Rehabilitation Act of 1973.

Prior to the 1990 enactment the Americans with Disabilities Act, section 504 was the most important disability rights legislation in the US. Modeled on the Civil Rights Act of 1964, Section 504 prohibited those who received federal aid from discriminating against any "otherwise qualified individuals with a disability." This stellar example of bridging movements resulted in the longest occupation of a federal building in US history in San Francisco -- and it is a historical moment that deserves more recognition, especially as America marks the 30th anniversary of the ADA.

Brad Lomax, a Black Panther who was also a pivotal figure in the movement for disability rights and helped lead the (ultimately successful) sit-in, was one of many activists who worked to make disability rights a presence and priority in the broader civil rights movement. Donald Galloway, who headed blind services and the Black Caucus at Berkeley's Center for Independent Living, recalled: "Brad was our linkage to the Black Panthers." Lomax brought together the growing disability rights movement, which Galloway remembered as "predominantly white," and the Black community in the Bay Area.

This kind of connection, sadly, is too often lost or forgotten when the stories of both movements are told: members within these movements are rarely aware that worlds and identities collided in the name of freedom and justice in ways that reshaped history.

David Shribman at The Pittsburgh Post-Gazette:

“Let the shameful wall of exclusion finally come tumbling down,” President George H.W. Bush said when he signed the law in 1990. It was the disabled version of the Book of Exodus sentiment — Let my people go! — that Harriet Tubman used as a code for enslaved people escaping to the North and that Al Jolson and Paul Robeson made famous.

That phrase is enshrined in the American Songbook, in the hearts of the marginalized and the striving, in the soaring words of a patrician president who claimed the ADA was the achievement of which he was most proud, in the American spirit and, 30 years ago, in the American legal code.

“President Bush truly was passionate about disability rights and felt the ADA was the greatest civil rights act in the country after the civil rights movement of the 1960s,” Andrew H. Card, deputy White House chief of staff at the time and interim chair of the George and Barbara Bush Foundation, said in an interview. “He used to say that disability knew no barrier between ethnic groups and religious affiliation. People with disabilities were pushed aside, and he was proud to make them part of the fabric of America.”