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Sunday, August 9, 2020

RespectAbility Guide to Virtual Education

 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.

From RespectAbility:
Whether you are a student with a disability or an adult (parent, guardian, teacher or otherwise) who is championing success for a student with a disability, this guide is for you. Our goal is to be a timesaver for students with disabilities, as well as for the adults in their lives who care about them. This guide includes resources that can help pave the best educational and social-emotional path possible during this pandemic.
Download the PDF or accessible Word document or view each section of the toolkit by following the links below:
To ask a question or add a resource, contact Debbie Fink at DebbieF@RespectAbility.org.
This guide is one of several such guides that the team from RespectAbility has produced during spring/summer 2020. Other resources include our Finding a Job as a Person With a Disability in Los Angeles career pathways guide, our COVID-19 Economic Benefits How-To guide, and our COVID-19 Pandemic and People with Disabilities guide. Best of luck!
We hope this resource has been of use to you – feel free to share this resource guide with others whom you think it will help!

Saturday, August 8, 2020

Russian Antivax Efforts, 2020

A false report claiming five Ukrainians had died after taking an American-made coronavirus vaccine spread in just a matter of days from a small Kremlin-friendly website to an audience of thousands in U.S.-based Facebook groups.
Russian media outlets picked up the claim, and soon social media users in the U.S. were sharing screenshots and links to those articles — all as 30,000 Americans were preparing to roll up their sleeves for shots of an experimental COVID-19 vaccine late last month.

The fast dissemination of a single report from an obscure Ukrainian website to crowds of Facebook users highlights the ease with which pro-Russian websites can feed misinformation into American internet circles. In fact, one of the websites that picked up the report was identified by the U.S. State Department this week as being part of a network of proxy misinformation websites being used by the Russian government.
As various countries race to produce a successful coronavirus vaccine, disinformation experts are bracing for a steady drum of misleading claims and propaganda aimed at undermining competing countries’ efforts to develop an antidote. Misinformation could raise distrust and fear around a vaccine, threatening government leaders’ hopes of ending the pandemic. And the U.S., which is readying plans to deliver 300 million doses to Americans starting next year, if a successful vaccine is identified, could be a prime target.

Friday, August 7, 2020

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.


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.

Thursday, August 6, 2020

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
Individualized Education Plan (IEP) Resources
Public Policy and Advocacy
Affiliate Highlights

Wednesday, August 5, 2020

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.
  • 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.
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.

Tuesday, August 4, 2020

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.

Monday, August 3, 2020

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.

Sunday, August 2, 2020

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.

Saturday, August 1, 2020

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.