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Friday, October 23, 2020

Antivaxxers Hijack the Language of Civil Liberties

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  TwitterFacebook, and other social media platforms have helped spread this dangerous myth.

The abstract:

Objectives. To understand changes in how Facebook pages frame vaccine opposition.

Methods. We categorized 204 Facebook pages expressing vaccine opposition, extracting public posts through November 20, 2019. We analyzed posts from October 2009 through October 2019 to examine if pages’ content was coalescing.

Results. Activity in pages promoting vaccine choice as a civil liberty increased in January 2015, April 2016, and January 2019 (t[76] = 11.33 [P < .001]; t[46] = 7.88 [P < .001]; and t[41] = 17.27 [P < .001], respectively). The 2019 increase was strongest in pages mentioning US states (t[41] = 19.06; P < .001). Discussion about vaccine safety decreased (rs[119] = −0.61; P < .001) while discussion about civil liberties increased (rs[119] = 0.33; Py < .001]). Page categories increasingly resembled one another (civil liberties: rs[119] = −0.50 [P < .001]; alternative medicine: rs[84] = −0.77 [P < .001]; conspiracy theories: rs[119] = −0.46 [P < .001]; morality: rs[106] = −0.65 [P < .001]; safety and efficacy: rs[119] = −0.46 [P < .001]).

Conclusions. The “Disneyland” measles outbreak drew vaccine opposition into the political mainstream, followed by promotional campaigns conducted in pages framing vaccine refusal as a civil right. Political mobilization in state-focused pages followed in 2019.

Public Health Implications. Policymakers should expect increasing attempts to alter state legislation associated with vaccine exemptions, potentially accompanied by fiercer lobbying from specific celebrities.

From the article:

To the extent that public health communications emphasize verbatim facts over the gist, or bottom-line meaning, of vaccination, vaccine opponents and proponents may be talking past one another, with proponents unable to convince opponents about the value of vaccination and conflating vaccine opposition with ignorance—a linkage that strengthens the claim that public health and medical officials are elitist. Thus, this framing presents health communicators with a danger and an opportunity. The danger is that public health practitioners, often with limited human and fiscal resources, cannot devote the sheer attention necessary to maintain a constant social media presence. Furthermore, they may wish to avoid the appearance of communications that could be judged to be partisan or political. By contrast, by empowering members of the public to make their own choices about vaccination, public health communicators must be equally empowered—but only if provided with adequate resources—to communicate the appropriate and compelling social context for vaccination decisions.

Our results suggest that vaccine opponents are becoming increasingly organized with considerable political clout. Public health agencies and advocates must therefore build strong relationships with state policymakers so that they may take an active stance when proposed laws or exemptions would further threaten the public’s health. Finally, legislation is shaped by public opinion. Thus, continued protection of the public health will require sustained research into effective messages for communicating fact-based rationales for vaccination that are nevertheless targeted and tailored. These messages must be responsive to the contextual factors, specific values, and gists motivating vaccine refusal.

Thursday, October 22, 2020

Education Department 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 2017–18 Civil Rights Data Collection (CRDC) is a survey of nearly all public schools and school districts in the United States:

  • Of the 101,990 students who were restrained at school to immobilize them or reduce their ability to move freely or were placed in seclusion — 79,676, or 78%, were students with disabilities (IDEA),
  • Of the 70,833 students who were subjected to physical restraint, 56,905 (80 percent) are students served under IDEA.
  • Of the  3,619 subjected to mechanical restraint. 1,494 (41 percent) are served under IDEA.
  • Of the 27,538 subjected to seclusion, 21,277 (77 percent) are served under IDEA. 

Wednesday, October 21, 2020

Autism in a Virginia Congressional Race

In The Politics of Autism, I discuss the issue's role in campaigns.

Republican Nick Freitas is running against incumbent House Democrat Abigail Spanberger


House Majority PAC released a new ad in Virginia’s 7th District connecting the dots between Nick Freitas’ pattern of taking thousands of dollars in campaign contributions from special interests, then voting for their benefit–even if it meant being the lone vote against expanding insurance for kids with autism. Twice. Fretias also stood with the special interests against a bill requiring background checks for daycare workers, showing even the safety of Virginia’s kids is up for sale.

“Expanding insurance for kids with autism and making sure our children are safe at daycare centers are really not controversial ideas, but Nick Freitas found reasons to vote against both of them,” said Abby Curran Horrell, executive director of House Majority PAC. “After taking thousands of dollars from special interests, Nick Freitas voted against bipartisan bills more than a hundred times, showing he’s not interested in protecting even the most vulnerable children if it comes at the expense of his special interest donors.”

The ad is available here and the script is below. The ad will run in Richmond and is supported by a budget of $360,000. House Majority PAC will also be running the ad, “Just One,” in the Washington, DC market with a budget of $840,000.


TV :30

It’s a troubling pattern.

Nick Freitas took thousands from corporate special interests … and voted with them. Against bipartisan bills … a hundred times.

Nick Freitas was the only legislator — in either party — to vote ‘no’ on health insurance coverage for children with autism. Twice.

He even voted ‘no’ on background checks for daycare employees.

Nick Freitas. A pattern of defending special interests … to the extreme.

House Majority PAC is responsible for the content of this advertising.

Tuesday, October 20, 2020

Texas, Social Workers, Discrimination

In The Politics of Autism, I discuss  the civil rights of people with autism and other disabilities

Edgar Walters at The Texas Tribune:
Texas social workers are criticizing a state regulatory board’s decision this week to remove protections for LGBTQ clients and clients with disabilities who seek social work services.

The Texas State Board of Social Work Examiners voted unanimously Monday to change a section of its code of conduct that establishes when a social worker may refuse to serve someone. The code will no longer prohibit social workers from turning away clients on the basis of disability, sexual orientation or gender identity.

Gov. Greg Abbott’s office recommended the change, board members said, because the code’s nondiscrimination protections went beyond protections laid out in the state law that governs how and when the state may discipline social workers.

From NASW:

And while removing this language does not allow a social worker to discriminate based on other state and federal statutes, especially in the area of disability, it could send the erroneous message that this is allowed. This might deter a client from coming in for services, or cause a social worker to withhold a service they are ethically obligated to provide.  

From AP:

The National Association of Social Workers criticized the board’s decision to follow the governor’s recommendation rather than seek public comment.

Will Francis, director of the association’s Texas chapter, told the board during public comments that their decision was “incredibly disheartening.”


Francis said the board's decision creates the impression that people with disabilities can be discriminated against despite federal rules that are in place to protect them.

“It’s disturbing, even if it’s unintentional,” Francis said. “They created space for people to get the impression that this is allowed now. What the governor has done is put people with disabilities at risk for discrimination for no reason.”


Overall, Texas is a bad place for people with autism and other disabilities.  In 2017, the latest year for which comprehensive data are available, ANCOR and United Cerebral Palsy found that Texas had the largest HCBS waiting list and also saw the most growth; 21,538 more Texans with disabilities in 2017 were awaiting support than in 2016.

Monday, October 19, 2020

NCD Urges Replacement of AbilityOne

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:
NCD conducted a comprehensive analysis of the AbilityOne Program to determine whether it promotes Congress’ goal of improving employment opportunities for people who are blind or have significant disabilities. Today, the program is made of a government-appointed Commission and staff, three central nonprofit agencies (CNAs) that facilitate the program, and over 500 participating nonprofit agencies that hire people who are blind or have significant disabilities to sell goods and services to federal agencies.

NCD’s report raises the following concerns about the AbilityOne Program:
  • Despite increased program revenue earned through sales to the Federal Government, employment for people who are blind or have significant disabilities has steadily declined since 2011 – While overall program sales have increased, the number of employees and total direct labor hours from the employment of people who are blind or have significant disabilities have declined since FY 2011. The percentage of overall program revenue paying wages to people are blind or have with significant disabilities has also declined each year since FY 2011.
  • The program undermines current national disability policy goals to create competitive integrated employment opportunities for people with disabilities – The program is a federally sanctioned segregated jobs system from 1938 that reinforces distinct employment paths for people who are blind or have significant disabilities that may result in subminimum wages. The program relies on an outdated societal landscape that existed prior to a public right to education and other core civil rights for people with disabilities. For this reason, only approximately four percent of employees hired under the program exit the program to enter competitive, integrated employment each year.
  • Repeated concerns about transparency and conflicts of interest remain unaddressed and undermine confidence in the program – While the CNAs continue to seek opportunities to increase program revenue, past scrutiny and criticism from Congress, the Government Accountability Office, its own Inspector General, and the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities remain unresolved. The CNA program fee remains exempt from federal restrictions on its use allowing it to fund executive salaries and lobbying expenses. In addition, NPAs have the discretion to decide which employees have significant disabilities, however NCD’s interviews and site visits with NPAs raised concern that they lack the capacity, skill, and knowledge to objectively evaluate the skills of their workers with disabilities.
NCD concludes the report by advising Congress to transition the outdated AbilityOne Program into a new requirement under Section 503 of the Rehabilitation Act that will incentivize federal contractors to hire a percentage of people who are blind or have significant disabilities at competitive wages and provides recommendations to successfully transition the current 45,000 AbilityOne employees into competitive, integrated employment.
From the report:
The increased  prevalence and availability of the customized employment approach allow  people who were previously considered “unemployable”to successfully maintain employment in a competitive, integrated environment. The key to this approach is the use of flexible strategies. Rather than relying on open job postings, a job developer will work to determine the specific skills, assets, and interests of a person with a significant disability and how these skills can address an unmet need of an employer. For example, Sean, who is autistic, enjoyed organizing books and dusting. He was hired by Barnes & Noble bookstore to clean and organize the shelves prior to the opening of the store each morning. He loved his job, and the store was equally pleased because their other employees did not have the time to focus on such meticulous tasks. he advent  of customized employment negates the need for people with significant disabilities to rely on AbilityOne for employment.

Sunday, October 18, 2020

How to Overcome Antivax Sentiment

Foremost among the strategies researchers have devised to break through misgivings about vaccination is, essentially, scaring people into doing it. In 2015, Zachary Horne, a psychology professor at Arizona State University, divided 315 participants into three groups. The first group read a story about a child who contracted measles; looked at a picture of a child with measles, mumps, or rubella; and read warnings about the importance of vaccination. The second simply read statistics showing there is no link between vaccination and autism. The third read about an unrelated topic. The group exposed to the vivid anecdotes were more likely to change their attitude toward vaccines than the other two. Vaccine skeptics often tell frightening personal stories of injury; Horne did the same thing, but for diseases.

But other experts say adjusting attitudes is a fruitless exercise. Some evidence shows that giving people —including the vaccine-hesitant—correct information actually causes them to double down on their resistance, in a psychological concept known as the “backfire effect.” In a study similar to Horne’s, another group of researchers found that images of sick children only worsened parents’ misperceptions about the vaccine-autism link, and did not boost their intent to vaccinate their children.

Instead, this camp endorses a strategy called “direct behavior change.” Pediatricians might, for example, simply tell parents which vaccinations they’ll be performing during their child’s appointment, rather than ask them whether they’d like to vaccinate. According to research, parents are much more likely to avoid vaccinating if the pediatrician says something like, “What do you want to do about shots?” as opposed to, “Well, we have to do some shots.”

Saturday, October 17, 2020

NIH Research Funding

In The Politics of Autism, I discuss the incentive structure facing academic researchers:
This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”

 Paige E. Cervantes and colleagues have an article at the Journal of Autism and Developmental Disorders titled "Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research."  The abstract:

Investments in autism spectrum disorder (ASD) research, guided by the Interagency Autism Coordinating Committee (IACC), have focused disproportionately on etiology over a well-established stakeholder priority area: research to improve accessibility and quality of community-based services. This study analyzed National Institutes of Health ASD services research funding from 2008 to 2018 to examine funding patterns, evaluate the impact of IACC objectives, and identify future directions. Approximately 9% of total funds were allocated to services research. This investment remained relatively stable across time and lacked diversity across domains (e.g., area of focus, ages sampled, implementation strategies used). While advancements were observed, including increased prevalence of projects focused on adult samples and on dissemination/implementation and prevention areas, greater investment in service research is critically needed.

Friday, October 16, 2020

Increasing Number of Autistic Adults on Medicaid

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilitiesHome and Community-Based Services (HCBS) are particularly important.

In my 2020 APSA paper, I note that "studies that mention autistic adults typically contain phrases such as “little is known.” 

A release from Drexel University:

While much attention has been paid to the increasing prevalence of autism spectrum disorder (ASD) among U.S. children and adolescents, less is known about the population of adults with ASD. Medicaid is an important health care coverage provider for individuals with autism, including adults. Using administrative data from the Medicaid Analytic eXtract (MAX), researchers from Drexel University’s A.J. Drexel Autism Institute found a substantial increase in the percent of adults receiving services for autism in the Medicaid population from 2008-2012.

“An increasing number of adults will be relying on Medicaid, often through home and community-based services waiver programs, for key services, such as support for community integration and for maintaining employment, into the future,” said Whitney Schott, PhD, an assistant researcher professor in the Autism Institute and lead author on the study.

There was higher prevalence of ASD among younger adults (ages 18-24) over the 2008-2012 time period than other adults. Prevalence was lowest among older adults (ages 41-64).

“These results underline the importance of identifying effective and efficient service delivery models within Medicaid to serve the growing number of adults with ASD,” said Schott.

Researchers examined Medicaid administrative claims data from 2008-2012, including the population of adults with autism as well as a random sample of adults without autism, in order to identify the administrative prevalence of autism by age category. They looked at individuals that were enrolled in Medicaid for at least nine out of 12 months per year, in order to get a better sense of true administrative prevalence.

“Little is known about the age composition of the adult population with autism,” said Schott. “Our research provides key information about the distribution of autism across adult ages over the period 2008-2012, showing that prevalence is higher and growing more quickly among younger adults (ages 18-24) compared to older adults.”

She added as more and more youth with autism age into adulthood, many will rely on Medicaid for continued services to integrate into the community, workplace and economy. State Medicaid programs and other insurance providers would be interested in learning more about the age distribution of the adult population with autism enrolled in Medicaid to better serve them.

The study, “Autism Grows Up: Medicaid’s Role in Serving Adults on the Spectrum,” was published in Psychiatric Services and was supported by a grant from National Institutes of Health – National Institute of Aging. Co-authors include Kate Verstreate, Sha Tao and Lindsay Shea, PhD, of Drexel University.

Thursday, October 15, 2020

The NC Handcuff Story Is Going National

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

One such case, in North Carolina, is starting to get national attention.

 Teo Armus at WP:

The school resource officer was not in the room when a 7-year-old boy with autism, whose mother said he was overwhelmed by the comings and goings in his classroom, began spitting inside his special-needs school in Statesville, N.C.

But when the officer, Michael Fattaleh, arrived on the scene, he put the boy in handcuffs, taunted him and pinned him to the ground, according to body-cam footage of the September 2018 incident that was recently published by WSOC.

“You ever been charged with a crime before?” Fattaleh asked, pressing the boy’s head against a pillow on the floor. “Well, you’re fixing to be.”

So began an interaction that lasted nearly 40 minutes, as the child began crying and yelling that he was in pain and two special-needs teachers looked on without intervening.

More than two years later, after the body-cam footage was released, his mother is suing the school board, the Statesville city government and Fattaleh, who resigned days after the incident from his job as a police officer. The woman, identified only as “A.G.” in the suit, alleges the parties in question violated the constitution, participated in negligence and inflicted emotional distress on her and her son.

Rebecca Riess at CNN:

During other moments of the incident, while the 7-year-old is lying face down on the floor, with his hands cuffed behind him, Fattaleh appears to check on the boy's well-being, asking "Can you breathe?" and "Are you hot? Are you warm?"
When the boy's mother arrives, the officer tells her that her son "is going to be charged with one count of assault, maybe two," the video shows.
Among other things, the lawsuit seeks to hold Fattaleh liable for inflicting "unnecessary and wanton pain and suffering" on the boy, saying he suffered "severe and permanent psychological injuries and was forced to endure extreme pain, suffering, and emotional distress and mental anguish together with a total deprivation of his rights guaranteed him by the Constitution."
Interim Statesville Police Chief David Onley initiated an internal affairs investigation of the incident, the Statesville Police Department said in a statement.

Wednesday, October 14, 2020

Poll Finds Few Believe in Discredited Vaccine-Autism Link

The good news is that this survey find only 10 percent believe in the bogus idea.

Daniel A. Cox and John Halpin report at the Survey Center on American Life:
In 1998, a study published in Lancet, a reputable medical journal, found an association between autism and the MMR vaccine, administered to prevent measles, mumps, and rubella. Since then, several peer-reviewed studies, including a 2013 Centers for Disease Control and Prevention study, found vaccines do not cause autism. However, rising rates of autism diagnoses fueled concerns about whether childhood vaccines cause autism. Prominent public figures, such as the actress Jenny McCarthy, have become passionate spokespersons in opposition of vaccinations.

Despite the widespread coverage of the anti-vaxxer movement, few Americans believe that vaccines are responsible for autism. Ten percent of Americans say the statement “childhood vaccines have been shown to cause autism” is mostly or completely accurate. Two-thirds (67 percent) of Americans say the claim is inaccurate, including nearly half (45 percent) who say it is completely inaccurate.

Across the demographic divide—gender, education, age, and political affiliation—few Americans embrace the link between childhood vaccinations and autism. However, white Americans are more likely to reject the claim. More than seven in 10 (72 percent) white Americans say the assertion that autism is caused by vaccines is mostly or completely inaccurate, while fewer Hispanic (58 percent) and black Americans (46 percent) say the same. Notably, although black Americans are not more likely to say the claim is accurate, they are more likely than Hispanic and white Americans are to express uncertainty about it (41 percent vs. 31 percent and 19 percent, respectively).

Tuesday, October 13, 2020

Program for Disabled Students at UC Davis

In The Politics of Autism, I discuss the growing number of college students on the spectrum.

A release from the University of California at Davis:
The UC Davis MIND Institute and Office of Diversity, Equity and Inclusion have received a $2.1 million grant from the U.S. Department of Education to create an inclusive, four-year college program for students with intellectual disabilities.

The Supported Education to Elevate Diversity, or SEED, Scholar program will be the first of its kind in California, and the goal is to create a model that could be used by other universities in the state.

“It’s a game-changer. It’s the only thing like it in the west,” said Beth Foraker, supervisor/lecturer in the School of Education’s Multiple Subject Credential Program, who will be the co-director of the SEED Scholar program.

The first group of 12 students is expected to begin classes in the fall 2021 and is likely to include people with autism, Down syndrome, fragile X syndrome and other neurodevelopmental disabilities. Foraker, whose 21-year-old son Patrick has Down syndrome, has been working toward this goal for years.

“Ninety-seven percent of adults with intellectual disabilities are living in poverty,” Foraker said, noting that postsecondary options are severely limited, with only a handful of four-year inclusive programs in the country. “This is a chance for them to go on to make a living wage, to live an authentic life of true freedom.”

The students will live in campus housing, attend classes and take part in extracurricular activities. An internship component is also planned, with options for placement within UC Davis Health, on campus and in legislative offices at the state Capitol.

“This really is about diversity, equity and inclusion,” said Leonard Abbeduto, director of the MIND Institute. “People with intellectual disabilities should have the same rights to post-secondary education options as everyone else.”

The MIND Institute and the Office of Diversity, Equity and Inclusion will jointly run the program, which will be fully integrated into the campus community.

“I am excited about partnering with the MIND Institute to expand inclusive education and excellence,” said Renetta Garrison Tull, vice chancellor for Diversity, Equity and Inclusion. “Having support from the Department of Education for this new initiative to welcome students with intellectual disabilities into the UC Davis Aggie family is a reason to celebrate.”

SEED Scholars will have a support system, including undergraduate students who will serve as peer mentors, helping with academics as well as social activities, health and wellness and oversight of internships. A curriculum that includes regular UC Davis courses, as well as some special courses focused on relevant issues such as independent living, will also be designed. The goal is to create a program that will culminate in a meaningful credential for the graduates.

The five-year grant from the U.S. Department of Education falls under the Transition and Postsecondary Programs for Students with Intellectual Disabilities, or TPSID, which was created in 2010. UC Davis is the first university in California to receive a TPSID for a four-year inclusive, residential program. The grant will cover about 80 percent of the cost of creating the program, with the remainder being covered largely by philanthropy.

“This is a very exciting opportunity for UC Davis to be on the forefront of offering college experiences for young people with disabilities,” said Lauren E. Lindstrom, dean of the School of Education and a member of the MIND Institute faculty. “The partnership between the MIND Institute and the Office of Diversity, Equity and Inclusion is very innovative.”

The goal is to expand that partnership far beyond UC Davis, with the program serving as a model for other UC campuses as well as the California State University System.

“We should be able to replicate our program across every UC and every CSU, which is unreal and amazing,” Foraker said.

The MIND Institute and the Office of Diversity, Equity and Inclusion will be hiring new staff members in the coming months to design the curriculum, housing options and peer mentor program, as well as a system for outreach to local schools to attract applicants.

“Even though we were motivated originally by the benefit to the students with intellectual disabilities, I think there’s going to be a great benefit to UC Davis undergraduate students in general,” Abbeduto said. “This is why we encourage diversity in all of its forms. We want people to understand the world from everyone else’s perspective because there’s great value in that.”

Monday, October 12, 2020

Disability and Journalism

In The Politics of Autism, I discuss coverage of autism in the mass media.

John Loeppky and Julia Métraux at Poynter:
The common message from disabled journalists in the industry is for nondisabled reporters to acknowledge that disability, like other identities, is interwoven into their subjects’ lives and that this is especially true during a time of such medical uncertainty, with anxiety over unknown long-term health effects looming. One of those journalists is s.e smith, a writer and a deputy editor for publications like Talk Poverty, Bitch, The Nation and Rolling Stone.

“Disability has such a bearing on every aspect of our everyday lives that it is ludicrous to act like it won’t touch pretty much every story,” smith said. “You see this, even with reporting on COVID, which you would think it’s like a disability issue. I’ll do a Ctrl F and search for disab(ility) and like nothing comes up, and that tells me that that reporter is not doing the work. Probably because they don’t know that they should be doing the work because their newsroom isn’t training and supporting them properly.”
But COVID-19 has opened up opportunities to report on disabled aspects of the ongoing health crisis in a way that the community has been speaking about for decades. Sara Luterman is a freelance journalist for publications such as NBC, Vox, and The Nation. She said a piece that she wrote in August is an example of how disability issues can reach a broader audience and not be limited to a one-off feature or beat reporting.
This lack of stories where disability is a regular aspect of reporting reflects a distinct lack of care when it comes to nondisabled journalists writing about the community. Alice Wong, founder and director of the Disability Visibility Project, said that one way nondisabled reporters go awry is in their choice of words that devalue the subjects of stories.

“Nondisabled reporters continue to use euphemisms such as ‘special needs’ or ‘preexisting conditions’ when what they’re actually referring to is disability,” Wong said. “What are people so afraid of? Nondisabled people may also have implicit bias that disabled people have lives that are tragic or are of lower quality that aren’t worthy of treatment or care.”
The National Center on Disability and Journalism, at Arizona State University, is one place that journalists can look to for tools to improve their disability reporting. Kristin Gilger, director of NCDJ and interim dean of the Walter Cronkite School of Journalism and Mass Communication told Poynter that some NCDJ’s resources include its Disability Language Style Guide, lists of disability organizations and experts and a “Reporting on Disability” checklist.

Sunday, October 11, 2020

Disability Groups Oppose Trump's SCOTUS Nominee

In The Politics of Autism, I discuss court cases involving the  civil rights of people with autism and other disabilities

The Autistic Self Advocacy Network opposes the confirmation of Amy Coney Barrett to the Supreme Court. In light of the critical role that the Supreme Court plays in interpreting and enforcing laws that affect people with disabilities, all nominees to our nation’s highest court must be evaluated carefully based on their known record. Judge Barrett’s record on the Seventh Court of Appeals and her writings and presentations as faculty at Notre Dame Law School expose her hostility to the laws that protect people with disabilities and our ability to live fulfilling lives in the community, including the Affordable Care Act and the Americans with Disabilities Act. Our community is likely to experience serious harm if Barrett is confirmed for a lifetime appointment to the Supreme Court. We further oppose efforts to rush confirmation on an impossibly short timeline in the midst of the COVID-19 pandemic.

ASAN urges the Senate to reject Barrett’s nomination. The next Supreme Court Justice should be someone who honors the work, life, and legacy of Justice Ginsburg by protecting our access to health care and protecting civil rights. For more information on ASAN’s positions on any of the issues discussed in this statement, please contact Sam Crane, our Legal Director, at
Today, CPR joined more than 50 other national, state, and local disability advocacy organizations in a letter sent to Senate leadership and Senate Judiciary committee leadership in opposition to the nomination of Judge Amy Coney Barrett to the Supreme Court to fill the seat left open by the passing of Justice Ruth Bader Ginsburg.

Justice Ginsburg was a strong advocate for people with disabilities and author of the majority opinion in Olmstead v. L.C., which affirmed that people with disabilities have a civil right to live, work and participate in their communities and found that unjustified segregation of people with disabilities is a type of discrimination prohibited by the Americans with Disabilities Act (ADA). Her replacement should be one that furthers, rather than damages, her legacy.

Judge Barrett’s record raises significant concerns for the disability community. Of particular note, she has written that she views the Affordable Care Act (ACA), which provides critical protections for people with preexisting conditions and has drastically improved access to and quality of care for millions of people with disabilities, as unconstitutional. The Supreme Court is scheduled to hear arguments in a case challenging the law, California v. Texas, on November 10, and the Senate’s currently extremely expedited schedule to confirm Judge Barrett means she would participate in that argument. CPR, along with 18 other national disability rights organizations, filed an amicus brief in the Supreme Court in that case, defending the ACA and explaining its importance to disabled people.

In her current role as a judge on the Seventh Circuit Court of Appeals, she also recently dissented from an opinion that determined that the Department of Homeland Security’s (DHS) public charge rule “inescapab[ly] . . . penalizes disabled persons in contravention of the Rehabilitation Act.” The public charge rule puts in place a new test for people who are applying for visas or green cards. It looks at people’s health, including whether they have a disability, and whether they have used or might one day use public benefits, including Medicaid-funded home and community-based services on which many people with disabilities rely. CPR and other disability organizations filed an amicus brief in the case, detailing the discrimination disabled immigrants may face as a result of the rule. Litigation is likely to make its way to the Supreme Court shortly.

Despite her concerning record, Judge Barrett’s nomination process has been extraordinarily rushed. A nomination that, if confirmed, would result in a lifetime appointment, should be considered carefully and given appropriate scrutiny. The speed with which this process has moved is a disservice to the institution of the Supreme Court and is particularly concerning given the Senate’s inability to pass desperately need coronavirus relief during a pandemic that has killed over 200,000 people in the US.

Read the letter in full here. More detail on Judge Barrett’s disability record is available here.

Saturday, October 10, 2020

Cop Cuffs Seven-Year Old, Holds Him Down for 38 Minutes

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Michael Gordon at The Charlotte Observer:
The video from former Statesville Police Officer Michael Fattaleh’s body camera shows him rushing across a classroom toward two women who are sitting with a small boy.

“OK, I’ve got him. He’s mine now,” Fattaleh says. He takes the 7-year-old, autistic child from the women, handcuffs the boy’s arms behind his back and presses him to the floor.

According to the video of the Sept. 11, 2018, incident, the student remains in that position for the next 38 minutes. Sometimes he sits quietly. Other times he sobs in apparent pain or pleads for Fattaleh to let him go.

“I’ve got all day, dude,” the officer says early in the encounter. “... If you are not acquainted with the juvenile justice system, you will be shortly.”

The boy’s crime? According to a new lawsuit filed by the child’s mother, identified as A.G., Fattaleh says he saw the special needs student spitting in a “quiet room” at the Pressly Alternative School in Statesville.

The officer repeatedly pledged to charge the boy with assault later that day, telling the boy’s mother the child had become combative, punching and kicking, behavior that is not apparent during the video. It remains unclear whether the charges were ever filed.


Thursday, October 8, 2020

Disinformation Superspreader

 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.

Emily Rauhala at WP:
For years now, well-organized and funded U.S. activists have been central to the global spread of dis- and mis- information about vaccine safety, particularly the false claim that vaccines cause autism.

When it comes to false information about vaccines, the United States “is sort of a superspreader,” said Heidi Larson, director of the Vaccine Confidence Project at the London School of Hygiene and Tropical Medicine and the author of “Stuck,” a book investigating why vaccine rumors don’t go away.

As the novel coronavirus made its way around the world in the spring, so did questions about an eventual vaccine.

Before the pandemic, the average adult did not think about vaccines until they had children, said Kolina Koltai, a postdoctoral fellow at the Center for an Informed Public at the University of Washington.

Now, information about vaccine development and testing is everywhere from Facebook groups to the nightly news. “At a global level, you have people talking about vaccines: Who is producing them? What are their political ties?” she said. “The anti-vaccine movement was already asking those questions.”

Anti-vaccine campaigners stepped in with answers, flooding existing networks with false and misleading content.

A major turning point was the May 4 release of a conspiracy video, “Plandemic,” featuring a discredited American scientist with ties to the anti-vaccine movement.

The video cast the coronavirus crisis as a shadowy plot orchestrated by the “scientific and political elite.” (There is no evidence to support this.) It falsely claimed that a coronavirus vaccine would “kill millions.” (Immunization prevents between 2 million and 3 million deaths per year, according to the WHO.)

“Plandemic” ricocheted across the Internet, bouncing from anti-vaccine groups to anti-lockdown groups, spreading among “Make America Great Again” enthusiasts and conspiracy theorists, as well as seemingly apolitical neighborhood bulletin boards.

Wednesday, October 7, 2020

Fragmentation, Confusion, and Disability

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."

 Steven M. Teles, “Kludgeocracy: The American Way of Policy,” New America Foundation, December 2012. Online:

Is disability policy health policy? Is it education policy? Is it labor-force policy? Or is it social welfare? From the perspective of a family, these distinctions make little sense. I have subsequently found they are similarly confusing to congressional staffers. For children with disabilities, disability policy is education policy, and we were clueless. I was like Alice in Wonderland, lost in a place where I understood the words people spoke, but they made no sense to me.

Services for disabled children are more fragmented and confusing than anything I had ever run into in health care. Your health insurance covers some things, typically those things that prevent and treat the disease that causes your disability. The things you need to work, go to school, or function in your daily life as a consequence of your disability are generally not covered by health insurance. Instead, you are in a whole new world. If you are birth to age 21 (in some states older) and need services and technology to go to school, they might be covered as part of special education, under IDEA. If you are age 18–65 and need them to be able to work, they might be covered by your state vocational rehabilitation agency. If you are over 65, your state or local agency for the aging might pay for something that is needed to maintain your independence and stay out of a nursing home. If medical insurance, educational programs, vocational rehabilitation, social services, or aging agencies won’t pay for what you need, maybe you can pay for it yourself, get a grant, or try crowdfunding.

The core problem goes back to that decision by Congress in the 1970s to place much of the responsibility for providing disability services to school-age children on schools. It makes a certain amount of sense. Not all kids have health insurance. Children spend the majority of their waking hours in school. Public schools can provide universal access. They might not have all of the expertise one would need to assess and manage all children with all kinds of disabilities, but they can receive federal and state funding to support specialized instruction, related services, and assistive technology.

But not all schools are created equal. According to the US census, in fiscal year 2016 New York spent $22,366 per pupil and Utah spent $6,953. Where we live, at the border of Kansas and Missouri, the states spent $9,960 and $10,313, respectively. Schools face funding shortfalls along with challenges finding experts for less common disabilities. And Congress has never met its promise to fund the educational mandate of special education at 40 percent of the “excess” costs of educating special education children. In March 2019 Rep. Jared Huffman (D-CA) introduced the IDEA Full Funding Act in the House, but there has been no further action since then.

In my role as a special-needs mom, everyone told me that my job was to advocate for my child. Of course I would advocate for my child. Who wouldn’t? The better question is, who cannot?

Navigating the fragmentation of services, the complexity of eligibility rules, and the sometimes adversarial processes of determining appropriateness of services is more manageable for those with time, money, education, and expertise. This means that the likelihood that a child will receive the medical, educational, and rehabilitative services and equipment they need to improve their functioning and start their education on a level playing field can depend on their parents’ situation and supports. This is, of course, true of our medical and educational systems as a whole, but for disabled kids and their parents, the stakes are even higher.