Lawmakers Urge End to Dangerous Restraint and Seclusion

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

A release from Rep. Sean Casten (D-Illinois):

U.S. Representative Sean Casten (D-IL-06), along with U.S. Senators Dick Durbin (D-IL) and Tammy Duckworth (D-IL), led a letter to U.S. Secretary of Education Betsy DeVos, asking the Department to issue federal guidance banning public schools’ use of seclusion and restraint practices that restrict student’s breathing and create other life-threatening conditions.

This letter follows a November 2019 joint report by the Chicago Tribune and ProPublica Illinois that revealed that in Illinois alone, there were over 20,000 seclusions from August 2017 to December 2018. The same report also found that hundreds of these seclusions involved children in first grade or younger and disproportionately involved children with disabilities. This prompted the Illinois State Board of Education to issue an emergency rule to ban these practices. However, only four other states have taken similar action, leaving millions of children still at risk.

The letter said in part, “We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country…The use of seclusion and dangerous restraints is putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.”

The letter was also signed by U.S. Representatives Jan Schakowsky (D-IL-09), Mike Quigley (D-IL-05), Danny K. Davis (D-IL-07), Cheri Bustos (D-IL-17), Brad Schneider (D-IL-10), Bill Foster (D-IL-11), Raja Krishnamoorthi (D-IL-08), Jesus “Chuy” Garcia (D-IL-04), and Ayanna Pressley (D-MA-07)

Read the full letter below or click here.

January 15, 2020
The Honorable Betsy DeVos
Secretary
U.S. Department of Education
400 Maryland Avenue SW
Washington, DC 20202

Dear Secretary DeVos:

We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country. We respectfully urge you to update your federal guidance banning seclusion, banning restraints that restrict breathing and are life-threatening, and promoting evidence-based, positive behavior strategies and de-escalation techniques to reduce the use of physical restraint.

According to a November 2019 report by the Chicago Tribune and ProPublica IL, children as young as five, disproportionately children with disabilities, are being locked alone in empty rooms for behavioral concerns or to “calm down” after misbehavior. In reality, the rooms have the opposite effect: children throw themselves at the door and scratch at the windows trying to escape. Some are recorded as urinating on themselves, undressing, attempting to commit suicide, or crying out that they want to die. Tragically, in some states, children have died in seclusion rooms.

In Illinois alone, 20,000 such seclusions were reported from August 2017 to December 2018, hundreds of which involved children in first grade or younger, according to the November Tribune article. Not only does this practice cause students to miss valuable classroom time—some are secluded for hours on end—it can also cause serious physical and psychological trauma. A December Tribune and ProPublica IL follow-up article found that restraints—including restraints that can restrict breathing—were being used even when students and staff were not in physical danger, in violation of Illinois law.

We were relieved that, following the publication of the November report, the Illinois State Board of Education (ISBE) responded swiftly to ban seclusion in schools across the state. However, that makes Illinois only the fifth state to ban seclusion. There are tens of millions of American children still at risk of experiencing this detrimental practice.

The use of seclusion and dangerous restraints are putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.

We appreciate your prompt attention to this matter.

How Antivaxxers Won in New Jersey

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

 Tracey Tully, Sharon Otterman and Jan Hoffman at NYT tell how antivaxxers blocked a bill to end religious exemptions from school immunization requirements.

An influential ultra-Orthodox Jewish organization that had remained largely silent as the New York bill was being debated deliberately pivoted, opting to vocally oppose the New Jersey legislation on grounds of religious freedom.

Grass-root parent groups successfully leveraged social media and conservative talk radio in their effort to convince most Republican leaders to line up against the bill. A Facebook page named Occupy Trenton urged parents to converge at the State House. And, in the final week of debate, appearances by a Kennedy scion and a contrarian filmmaker helped fuel a libertarian argument that parents, not government, should control their children’s health care.

The intense protest left two Democratic senators with cold feet that no degree of political cajoling — or a private question-and-answer session for lawmakers with three pediatricians from the state chapter of the American Academy of Pediatrics — could thaw.

...

The bill passed last month in the Assembly. But lawmakers who supported the legislation also may have made a political miscalculation when they introduced an amendment that excluded private schools to win the vote of a Republican needed to achieve a majority in the Senate. Instead, opponents, including an African-American Democratic assemblyman, argued that this amounted to segregation that would allow only the affluent a choice about vaccination.

...

“Technology is a huge piece of it,” said Sue Collins, a founder of the New Jersey Coalition for Vaccine Choice. “Everybody has access to everybody, and they’re holding it in their hands all day long.”

The omnipresence of social media also gave opponents the ability to reach directly into lawmakers’ private lives.

Senator Richard J. Codey, a Democrat and a former New Jersey governor, said his son got calls at home. Francine Weinberg, a daughter of one of the bill’s sponsors who lives in California, said she had to adjust her Facebook page’s privacy settings to end the string of attacks from commenters.

“I call it the politics of harassment,” said Ms. Weinberg, whose mother, Senator Loretta Weinberg, was a primary sponsor of the legislation.

Antivaxxers Win in NJ, Create Doubt in National Public Opinion

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

Meg Oliver at CBS:

The vaccination debate rages on in New Jersey, after lawmakers there failed to pass a bill that would have eliminated religious exemptions for public school-required vaccinations. Thousands protested the bill at the state capitol on Monday.

Lisa DeRogatis said she never vaccinated her three children. "I feel like this is a fascist overreach of the government and taking away religious and medical freedoms," she said.

A new Gallup poll shows a 20-year drop in vaccine support among all age groups. The steepest ages are 30-49, at 12%. But 86% of Americans still support vaccines, and say they are not more dangerous than the diseases they prevent.

"We're seeing a decline because of a rise in anti-vaccine misinformation coupled with political activities," said Dr. Peter Hotez, an infectious disease specialist.

Five states have banned non-medical exemptions only, including New York, which eliminated its religious exemption last year after outbreaks that started in 2018. To maintain what's called "herd immunity," public health officials say vaccine rates need to stay above 90% to protect those who can't be vaccinated, including babies and those with compromised immune systems.

R.J. Reinhart at Gallup:

Perhaps the most well-publicized and debunked claim of danger posed by vaccines is that they cause autism. Currently, 10% of U.S. adults believe vaccines cause autism in children, marking a modest increase from 6% in 2015. Nearly half, 45% do not think vaccines cause autism, up modestly from the 41% who said the same almost five years ago. And 46%, down from 52%, say they are unsure.

The more advanced an American's formal education, the more likely they are to say vaccines do not cause autism. The figure is 73% among those with postgraduate education, falling to 61% among those with a college degree only, 42% of those with some college and 28% of those with no college experience. Importantly, lesser-educated Americans are much more likely to have no opinion than to say they believe vaccines do cause autism. The percentage making the causal connection tops out at 12% among Americans with no college education, versus 5% of postgraduates.

There are also substantial partisan differences, with 55% of Democrats saying vaccines do not cause autism, compared with 37% of Republicans.

Vaccine Misinformation

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

Stecula, Dominik Andrzej; Kuru, Ozan; Jamieson, Kathleen Hall (2020). How trust in experts and media use affect acceptance of common anti-vaccination claims. The Harvard Kennedy School (HKS) Misinformation Review. https://doi.org/10.37016/mr-2020-007
Summary:

• Drawing on evidence gathered in two periods in 2019 (i.e., February 28-March 25, 2019 and September 13-October 2, 2019) from a nationally representative survey panel of Americans, we studied how anti-vaccination claims are widely held, persist, and relate to an individual’s media consumption and levels of trust in medical experts.
• We found that a relatively high number of individuals are at least somewhat misinformed about vaccines: 18% of our respondents mistakenly state that it is very or somewhat accurate to say that vaccines cause autism, 15% mistakenly agree that it is very or somewhat accurate to say that vaccines are full of toxins, 20% wrongly report that it is very or somewhat accurate to say it makes no difference whether parents choose to delay or spread out vaccines instead of relying on the official CDC vaccine schedule, and 19% incorrectly hold that it is very or somewhat accurate to say that it is better to develop immunity by getting the disease than by vaccination.
• In many cases, those who reported low trust in medical authorities were the same ones who believed vaccine misinformation (i.e., distrust of medical authorities is positively related to vaccine misinformation). Of note, this was true across different demographic groups and political beliefs.
• Not only was the percent of individuals holding misinformed beliefs high, but mistaken beliefs also were remarkably persistent over a five months period.
• Among those whose level of misinformation changed over time, the individuals who said that they were exposed to an increased amount of content about measles or the Measles, Mumps, and Rubella (MMR) vaccine on social media were more likely to have grown more misinformed.
• By contrast, those who reported to have saw, read, or heard information on these topics in traditional media were more likely to respond accurately.
• This result underscores the value of efforts to educate the public through traditional sources and minimize exposure to vaccine misinformation on social media.
• Future work should move beyond establishing correlations to examine whether the relationships among trust in medical experts, media exposure, and vaccine misinformation are causal.

Full Funding of IDEA and 2020 Politics

In The Politics of Autism, I discuss federal spending for people with autism and other disabilities. 

Democratic presidential candidates have called for full funding of IDEA.  Evie Blad reports at Education Week:

Education groups, who call that shortfall an unfulfilled promise, have long campaigned for "fully funding" IDEA, which underpins services for nearly 7 million students with disabilities. More federal funding for IDEA, which gets $13.6 billion in the current budget, would help special education programs, they say, but it would also more broadly affect all students as schools would no longer have to pull as much from their general education budgets to meet the law's mandates.

...
In recent years, it's lagged below 15 percent of the average per-pupil expenditure, less than half of what lawmakers originally envisioned, said a report in August by the Congressional Research Service. 

Full funding is a moving target as numbers of identified students shift over time. A bipartisan bill introduced last year by Sen. Chris Van Holland, D-Md., and Sen. Pat Roberts, R-Kan., aims to gradually ramp up IDEA funding, reaching the maximum threshold in 2029 by ensuring at least $43 billion annually is set aside for the grants.

...
In an August 2019 EdWeek Research Center survey of 700 principals and district administrators, 56 percent of respondents listed special education among the factors that had a "major effect" on increasing per-pupil expenses in their districts. Thirty-two percent of respondents listed special education among the top five areas most in need of funding in their school systems. In addition to IDEA, many districts rely on Medicaid funding to help cover the costs of services for students with disabilities.

About One-Sixth of Caregivers Think Vaccines Cause Autism

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

Eric Fombonne and colleagues have an article at Vaccine titled "Beliefs in Vaccine as Causes of Autism among SPARK Cohort Caregivers."  The abstract:

Background

Fear of autism has led to a decline in childhood-immunization uptake and to a resurgence of preventable infectious diseases. Identifying characteristics of parents who believe in a causal role of vaccines for autism spectrum disorder (ASD) in their child may help targeting educational activities and improve adherence to the immunization schedule.

Objectives

To compare caregivers of children with ASD who agree or disagree that vaccines play an etiological role in autism for 1) socio-demographics characteristics and 2) developmental and clinical profiles of their children.

 Methods

Data from 16,525 participants with ASD under age 18 were obtained from SPARK, a national research cohort started in 2016. Caregivers completed questionnaires at registration that included questions on beliefs about the etiologic role of childhood immunizations and other factors in ASD. Data were available about family socio-demographic characteristics, first symptoms of autism, developmental regression, co-occurring psychiatric disorders, seizures, and current levels of functioning.

Results

Participants with ASD were 80.4% male with a mean age of 8.1 years (SD = 4.1). Overall, 16.5% of caregivers endorsed immunizations as perceived causes of autism. Compared to caregivers who disagreed with vaccines as a cause for ASD, those who believed in vaccine causation came disproportionately from ethnic minority, less educated, and less wealthy backgrounds. More often their children had experienced developmental regression involving language and other skills, were diagnosed earlier, had lost skills during the second year of life, and had worse language, adaptive, and cognitive outcomes.

Conclusion

One in six caregivers who participate in a national research cohort believe that child immunizations could be a cause of autism in their child. Parent social background (non-White, less educated) and child developmental features (regression in second year, poorer language skills, and worse adaptive outcomes) index caregivers who are more likely to harbor these beliefs and could benefit from targeted educational activities.

From the article:

Taken together, our results suggest that preemptive educational activities should preferentially target families from ethnic minority and less educated backgrounds and whose children exhibit loss of skills in the second year of life. Professionals involved in multidisciplinary specialist teams who diagnose ASD may not always have enough time to educate parents about what ASD is not caused by. Additionally, teams led by nonmedical professionals may feel less competent to talk through medical matters and may refer families to later discussions with their community providers, which may or
may not occur. Because of the recent resurgence of measles outbreaks, it is important that professionals tackle this information gap. There is a need to develop evidence-based tools for practitioners and families to facilitate this process.

Autism in California

In The Politics of Autism, I discuss services for people with disabilities

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

From the Department of Developmental Services:

The trend in the DDS consumer gender distribution continued in 2018 with males increasing in numbers relative to females. In January 2008, 61.4% of the people served were male as compared to 38.6% female. In January 2018, the gap widened to 65.0% male compared to 35.0% female. The growing gender imbalance is due, in large part, to the growing Autism population, which is currently over 80% male. 

Special Ed Shortages

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

Diana Lambert at EdSource:

Due to statewide teacher shortages, many of California’s approximately 800,000 special education students are being taught by teachers who haven’t completed teacher preparation programs or have received only partial training. 

There were more special education teachers with substandard credentials than in any other subject area in 2017-18, the most recent year for which data is available. About 60 percent of first-year special education teachers were working without a full special education teaching credential, according to the California Commission on Teacher Credentialing.

That year, the number of first-year special education teachers without full credentials totaled 5,196. That is the highest number in a decade, said Desiree Carver-Thomas, a researcher with the Learning Policy Institute, a research and policy organization based in Palo Alto.

California is not alone. 

At Oregon Public Radio, Elizabeth Miller profiles Oregon Teacher of the Year Mercedes Muñoz, a special ed teacher:

Special education teachers have a predicted turnover rate that’s 46% higher than other teachers, according to an analysis of a National Center for Education Statistics teacher survey. Only foreign language teachers have a higher predicted turnover rate.

And the state cannot afford to lose more special education teachers. Oregon has listed it as a “teacher shortage area” for more than 25 years.

Muñoz has watched some of her friends leave the profession or cut back on hours.
“Many teachers that I know are struggling with depression … with physical ailments,” Muñoz said. “I myself have an autoimmune disorder. I had no medical issues before becoming a teacher. None.”

Race, Ethnicity, and Diagnosis Disparities

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  

A release from Rutgers:

One-fourth of children under age 8 with autism spectrum disorder — most of them black or Hispanic — are not being diagnosed, which is critical for improving quality of life.

The findings, published in the journal Autism Research, show that despite growing awareness about autism, it is still under-diagnosed, particularly in black and Hispanic people, said study co-author Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, which contributed to the research.

Researchers analyzed the education and medical records of 266,000 children who were 8 years old in 2014, seeking to determine how many of those who showed symptoms of the disorder were not clinically diagnosed or receiving services.

Of the nearly 4,500 children identified, 25 percent were not diagnosed. Most were black or Hispanic males with deficits in mental abilities, social skills and activities of daily living who were not considered disabled.

“There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” Zahorodny said, “Also, many parents whose children are diagnosed later often attribute their first concerns to a behavioral or medical issue rather than a developmental problem.”

Screening all toddlers, preschool and school-age children for autism could help reduce the disparities in diagnosis, Zahorodny said. In addition, clinicians can overcome communication barriers by using pictures and/or employing patient navigators to help families understand the diagnosis process, test results and treatment recommendations.
States can help improve access to care by requiring insurance companies to cover early intervention services when a child is first determined to be at risk rather than waiting for a diagnosis, he said.

The research was conducted through the Autism and Developmental Disabilities Monitoring Network, a surveillance program funded by the U.S. Centers for Disease Control and Prevention that tracks the prevalence of the developmental disorder in 11 states: Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin.

From the article -- on insurance and medical diagnosis:

As previously mentioned, one possible benefit of receiving a clinical diagnosis is to facilitate access to appropriate services. Over the past decade, many states have enacted
laws that mandate insurance companies to reimburse evidence-based treatments for ASD; including but not limited to behavioral therapy (e.g., applied behavior analysis),
occupational therapy, physical therapy, speech therapy, social skills training, and a combination of these [Barry et al., 2017; Dawson & Burner, 2011; Douglas,
Benevides, & Carretta, 2017; Kasari, 2015; Zwaigenbaum et al., 2015]. However, justification for the medical necessity of therapies is most often needed before insurers will approve and reimburse service requests. Although comprehensive service use and insurance status are not surveyed in ADDM, a clinical diagnosis of ASD may support such justification and help reduce the financial burden of raising a child with special needs by decreasing out-of-pocket premiums. Recognizing and diagnosing children with ASD symptoms may, therefore, facilitate access to appropriate services and reduce financial strain.

Public Opinion on Vaccines

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

Meg Hefferon and Cary Funk at Pew:

Black and Hispanic Americans hold less positive views about the MMR vaccine than white Americans. While 92% of white adults say the benefits of the vaccine outweigh the risks, 74% of black and 78% of Hispanic adults say the same. In addition, 46% of black and 45% of Hispanic adults rate the risk of side effects from the vaccine as at least medium, compared with 23% of white Americans.

...
Those with higher levels of education and higher family incomes are particularly likely to consider the preventive health benefits of the MMR vaccine as very high and, on the flip side, to see the risk of side effects as low.
...
As the number of measles cases has risen in the U.S., lawmakers in some states have introduced legislation to limit or eliminate exemptions to school-based vaccination requirements based on personal or religious beliefs. However, many of these proposals have been met with strong opposition from a vocal minority who think vaccination should be a parent’s choice.

The Center’s new survey finds that a strong majority of the American public (82%) supports required MMR vaccination for public school attendance, while 16% feel parents should be able to decide whether to vaccinate their children even if that might create health risks for others. Views on this issue are about the same as in 2016.

Majorities across all major religious groups support a school-based requirement for the MMR vaccine. However, white evangelical Protestants (20%) are slightly more likely than white mainline Protestants (11%) to think that parents should be able to decide whether to have their children vaccinated.

Compared with white Americans, smaller majorities of black and Hispanic adults support a school requirement for the MMR vaccine. Roughly a quarter of black (26%) and 19% of Hispanic Americans say vaccination should be a parent’s decision, compared with 13% of whites who say the same thing.

Presidential Candidates and Disability

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

Andrew Pulrang at Forbes:

On January 2, Sen. Elizabeth Warren announced a new policy platform titled: “Protecting the Rights and Equality of People with Disabilities.” It’s scope and level of detail is impressive by any measure, and compared with what disabled voters and activists have been used to over the last 20 years, it would have been genuinely exceptional all by itself.

But Warren’s plan isn’t even her own first foray into disability policy, and in this election cycle, several other major candidates have also offered credible, detailed disability proposals, including: Cory Booker, Pete Buttigieg, Julián Castro, Kamala Harris, and Bernie Sanders. Other candidates, like Joe Biden, Beto O’Rourke, Marianne Williamson, and Andrew Yang have also put out proposals that only look a bit thin and preliminary in comparison to the higher standards of today. Just a few years ago, they would have been considered notable too.

While these are very concrete encouraging signs, most disabled voters are simply not aware of them yet, or are holding their breaths. These policies are just the beginning. There is plenty of time for candidates to stumble over the right words, make policy mistakes, misread rooms, and make disappointing tradeoffs. So now is probably a useful time for everyone, inducing politicians and people with disabilities, to think about what exactly disabled people want from candidates.

Housing Opportunities

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Housing is a big one for autistic adults.

Terry Tang at AP:

Social media and online resources are inspiring parents to look beyond the status quo, said Desiree Kameka, director of the nonprofit Autism Housing Network, which maintains a list of U.S. residential opportunities for people with intellectual and developmental disabilities. It shows nearly 50 communities are being developed or are in the planning phase nationwide, including several that are parent-driven.

"All of a sudden, they start seeing other families and other communities have been successful," Kameka said. "It gives them hope and initiative that maybe they can make it a reality."

In 2018 alone, metro Phoenix saw two housing projects open.

Former NFL quarterback Kurt Warner and his wife launched Treasure House, a residential community for young adults with cognitive and developmental disabilities. Its first resident was their son, Zack. First Place-Phoenix, a 55-unit apartment complex for adults with autism was sparked by the founder looking for a place for her son.

The Luna Azul complex is comprised of 14 two- and three-bedroom homes with another 16 planned. Prices range from around $400,000 to more than $500,000. Anyone can move in, but there is an emphasis on inclusion of people with disabilities.

Autism and the Draft

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

The possibility of war with Iran raises a question:  are young men with autism subject to the military draft?  Shot answer:  they must register but in most cases are not eligible for service. 

From the Selective Service System:

These men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register, and if needed, classifications would be determined later.

But unless the military changes its regulations, autistic young men would probably not have to serve.

Lisa Jo Rudy explains:

According to Department of Defense Instruction 6130.03 (Medical Standards for Appointment, Enlistment, or Induction in the Military Services) persons with the following would not be medically fit for military service: pervasive developmental disorders, including Asperger Syndrome, autistic spectrum disorders, and pervasive developmental disorder-not otherwise specified does not meet the standard by virtue of current diagnosis, or for which the candidate has a verified past medical history.

During the Vietnam War, many  young men sought medical deferments, often with the help of their parents.  Trump's father got a podiatrist to say that he had "bone spurs."

Prediction:  if war does break out, some parents of young men in high school will head to psychologists to see if they can get a formal autism diagnosis.