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Monday, March 18, 2019

The Cheating Scandal and Students on the Spectrum

In The Politics of Autism, I discuss the growing number of college students on the spectrum. The recent college admissions scandal is a blow to them.

Ryan W. Miller at USA Today:
When Veronica Soliz's son took the SAT, he was granted an hour and a half of extra time for the entire test through a disability accommodation.

Soliz, mother of an autistic child, said she was thankful he got that, not realizing then that they could have asked for more time.
When she read the news Tuesday that children of TV celebrities and wealthy elites had been granted twice the amount of time her son got for disabilities they allegedly fabricated, she was in disbelief.
"To see that somebody just paid for what we've been dealing with his whole life, it was just a gut punch," Soliz said. "It's way too hard for us to get what we need and way too easy for people like Felicity Huffman."
Nadine Finigan-Carr and her son, who has autism, started the process in February of his junior year.

He didn't have an updated plan on record because he attended a private school. The family had to find specialists, sit for the necessary tests and complete the various forms needed to send to the College Board and ACT.
It wasn't until summer that Finigan-Carr's son was approved for the accommodations he needed. By then, he could take the tests only once in the fall, unlike many of his peers who took the tests multiple times to try to improve their scores.
"This was not something that we just got somebody to sign a piece of paper to do," Finigan-Carr said.

Sunday, March 17, 2019

Services Shortage in Nevada

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

At The Nevada Independent, Michelle Rindels and Jacob Solis explain why Nevada autism families face long waits and a shortage autism services.
The number of providers is one limiting factor, and something that lawmakers tried to address through bills last session. The number of Medicaid-accepting registered behavioral technicians (RBTs) — the people who work directly with children with autism — has grown from 145 in early 2017 to 535 by late 2018.
But the number of board certified behavioral analysts (BCBAs), who supervise RBTs, has grown at a slower rate, from 26 to 53 statewide. Part of that is because it takes several years to earn a BCBA certification but only 40 hours to earn the RBT certification.
“There’s a need for more providers to participate in Medicaid. And … the economics of the situation suggest that … there is an overall shortage,” said Cody Phinney, pointing to long wait times to find a provider. “And there are providers that have made it clear that they don’t have to participate in Medicaid because there’s so much demand outside of Medicaid.”

Many people blame the shortage on the rate that Medicaid reimburses providers for the services of RBTs. The rate is $31.30 per hour — significantly lower than the $52 per hour that TriCare (military insurance) pays and lower than many neighboring states.
By the time a provider pays for a supervisor, insurance, workman’s compensation, employment taxes and other overhead, many of the actual RBTs are making a starting wage of $12 an hour.
“Not only does the job require training, but it is a demanding and intense job that may include working with individuals who are physically aggressive,” said Gwynne Partos, vice chair of the Nevada Commission on Autism Spectrum Disorders.
One RBT who testified to lawmakers said he wanted to keep serving his clients, but found that with all the driving he had to do to three far-flung clients’ homes in a given day, he could make more driving for Uber and Lyft. Another autism service provider lamented the high turnover in the job, saying she was frustrated to see a sign on a recent visit to In-N-Out saying the burger chain offered starting wages of $12 with earning potential for $15.75.
The article also discusses the state's autism court.

Saturday, March 16, 2019

Cites Are Susceptible to Measles and Antivax Misinformation

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

Dr. Peter Hotez at Axios:
Between Jan. 1 and March 7, the CDC confirmed 228 cases of measles across 12 states.
Why it matters: These outbreaks — which have been especially large in Washington, Oregon and Texas — were predictable. A 2018 study of vaccination rates identified a dozen likely hotspots, two of which have now seen eruptions of this preventable illness.
Show less

Background: The current anti-vaccine movement began more than 20 years ago after a paper published in The Lancet(but later retracted) claimed that the measles-mumps-rubella vaccine could be linked to autism.
Where it stands: Since then it's spawned a media empire that includes almost 500 anti-vaccine websites, each amplified on social media. Almost all of Amazon's best-selling vaccine books are by anti-vaxxers, though the company has removed some anti-vaccine documentaries from its Prime streaming service.
Lydia Smith at The Guardian reports that antivaxxers target cities, which are especially susceptible to the spread of measles and misinformation.
Living in a city means being in close proximity with millions of people every day, as you pass in apartment buildings, offices or on public transport. And while most of us have caught a cold at some point, we tend not to worry about catching something more serious like measles, especially if we were inoculated in childhood. After all, vaccines have helped to consign once-deadly outbreaks to history. Yet over the last decade diseases like measles, mumps and whooping cough, once disappearing, have made a resurgence.
 “Viruses spread easily in urban environments,” says Arthur Caplan, a professor of bioethics at New York University. “Plus cities are transportation hubs providing truck, car, train and plane routes for infected people to spread disease worldwide.
Cities are also constantly on the move, providing more opportunity for diseases to spread. “Cities often have more transient populations – with people coming and going and sometimes bringing infectious diseases with them which can spread among unvaccinated people,” says Heidi Larson, director of the Vaccine Confidence Project at the London School of Hygiene and Tropical Medicine. “Unvaccinated travellers can also contract infectious diseases from local populations and carry them to other places.”
Around half of all parents with small children have been exposed to misinformation about vaccines on social media, a recent report by the Royal Society for Public Health found. “Cities more typically have higher media saturation and more opportunities for the spread of misinformation,” Larson says.

Friday, March 15, 2019

High School Students on the Spectrum

In The Politics of Autism, I write about the experiences of different economicethnic and racial groups

A release from Drexel University:
Youth with autism are growing up in a world where awareness of autism and expectations for full inclusion in society are increasing. Today, one in 59 children have an autism spectrum disorder (ASD) according to the Centers for Disease Control and Prevention. Because autism spectrum disorder is a lifelong neurodevelopmental disorder and no two youth with ASD are alike, their service and support needs vary and continually change as they age.
However, there are few current national statistics about the characteristics and needs of this growing and changing population. Such statistics are needed to ensure policies and programs are appropriately matched to the evolving needs of youth on the autism spectrum. This is where the National Autism Indicators Reports by Drexel University's A.J. Drexel Autism Institute come into play, a series that has been produced since 2015.
The recently released fourth edition, "The 2018 National Autism Indicators Report: High School Students on the Autism Spectrum," highlights the challenges facing minority youth and those from low-income households. Autism occurs in children from all backgrounds. But the impacts of autism are not felt equally across all groups. Youth from poorer households have fewer choices for services, fewer opportunities for work experiences and generally worse outcomes across a wide range of indicators. Minority youth often face obstacles accessing needed care and experience worse outcomes in many realms.
For the 2018 report, researchers looked at national data on youth ages 12-23 during their secondary school years.
Most notably, nearly half of teens on the autism spectrum live in households with incomes at or below 185 percent of the federal poverty level (about $45,000 for a household of four). One in four lived in a home that received at least one form of public assistance.
"We must understand that many families parenting teens on the autism spectrum are also struggling to make ends meet while trying to navigate complex systems of care and get the help their children need," said Paul Shattuck, PhD, program director of the Autism Institute's Life Outcomes Program and lead author of the report. "Moving the needle to improve young adult outcomes will require us all to acknowledge that we cannot disentangle helping youth from helping families - and that families have unique needs depending on their financial status. We cannot assume that programs developed to help relatively affluent families will work for financially disadvantaged families."
African American teens with ASD were more likely to have difficulty than their peers in several areas, including communication, self-care and adaptive behaviors and independently getting places outside of the home. Twenty to 26 percent of teens on the autism spectrum were non-white and 11-15 percent were Hispanic. By comparison, U.S. Census statistics indicate that 26 percent of all 18-year-olds were non-white in 2016 and 22 percent were Hispanic.
 Shattuck's team found that service receipt and functional abilities varied widely across individual and household demographics. However, more help is needed in the transition to young adulthood for all youth and young adults with ASD. Being prepared for a healthy transition can set the stage for years of positive development.
"Inadequate preparation during the last few years of high school can hinder success on many fronts: physical health and mental health, employment, continued education, friendships and integration into community life," said Shattuck "Students do not always receive transition planning, or sometimes it begins too late in high school to allow for adequate preparation. Community-based help is not always available after high school and this leaves many families struggling to navigate on their own and results in too many who are failing to launch successfully into adulthood."
The report includes information from the National Longitudinal Transition Study 2012 (NLTS-2012) - a national survey that provides a window into the lives of high school students on the autism spectrum, youth with other disabilities, and those without disabilities. It also includes the latest data on health and health care access among youth with autism from the National Survey of Children's Health (NSCH 2016).
"This report, like the others in the series, can inform the improvement of policies and community services that support the goal of an inclusive and just society where all persons have the ability to participate in meaningful life activities," said Jessica Rast, co-author of the report.

Thursday, March 14, 2019

The College Admissions Scam Hurts Students with Disabilities

From the Learning Disabilities Association of America:
Today the FBI announced an investigation, code-named Operation Varsity Blues, that uncovered a network of wealthy parents who paid thousands of dollars to a college-admissions private counselor to boost their children’s chances of gaining entrance into elite colleges. The U.S. Attorney for Massachusetts Andrew Lelling stating, “There can be no separate college admission for wealthy, and I will add there will not be a separate criminal justice system either.”
The investigation also revealed that the counselor facilitated the cheating by instructing parents “to seek extended time for their children on college entrance exams, which included having the children purport to have learning disabilities in order to obtain the required medical documentation.” (emphasis added)
These actions hurt all individuals with disabilities, including those with learning disabilities, by perpetuating the misperceptions that many students who obtain accommodations on college admissions do not have disabilities and that this abuse is widespread.
Every year thousands of individuals with learning disabilities apply for and are appropriately granted accommodations, including extended time, for the college admissions exams such as the SAT and ACT. The testing entities’ well-established and rigorous process to apply for and obtain accommodations for individuals with disabilities protects the rights of those with disabilities. The small number of students implicated in the FBI investigation demonstrates that it is very rare for a student without a disability to obtain testing accommodations.
Individuals with learning disabilities have average to above-average intelligence and have a neurobiological disorder that impairs their ability to learn yet are capable of average or above-average achievement. The courts have succinctly stated the reason that individuals with disabilities obtain accommodations is so the “exam results accurately reflect the test takers aptitude rather than the disabilities.” Enyart v. National Conference of Bar Examiners, 630 F. 3rd 1153 (9th Circ. 2011) Accommodations are about leveling the playing field and not about bestowing an unfair advantage.
Beth McGaw, President of LDA, is clear where LDA stands on fraud: “When individuals commit fraud and claim they have a learning disability in order to obtain testing accommodations this hurts every individual with a learning disability. LDA will continue to follow this story and work to assure that all individuals with a learning disability who are eligible are granted appropriate accommodations for college admissions tests.”

Wednesday, March 13, 2019

Amazon Pulls a Couple of "Autism Cure" Books

Autism parents are highly vulnerable to pitches for quack "cures."

The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
 Brandy Zadrozny at NBC News:
Amazon is removing from its online marketplace “autism cure” books that unscientifically claim children can be cured of autism with pseudoscientific methods such as ingesting and bathing in a potentially toxic form of bleach and taking medication meant to treat arsenic and lead poisoning.
Amazon confirmed Tuesday that the books “Healing the Symptoms Known as Autism” and “Fight Autism and Win” are no longer available, but declined to answer specific questions about why it had removed them or whether they were part of a larger cleanup effort, citing a policy of not commenting on individual accounts.

The move by Amazon comes on the heels of a report in Wired published Monday that criticized the retail giant for offering medically dubious books and dangerous methods for reversing autism spectrum disorder. For years, news organizations have pointed out Amazon’s practice of hosting books that promote vaccine and other health-related misinformation, but the pressure has intensified in recent weeks.

Tuesday, March 12, 2019

Trump's Budget

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

From the Arc:
Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.
Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.
Joel Achenbach et al. at WP:
President Trump’s third budget request, released Monday, again seeks cuts to a number of scientific and medical research enterprises, including a 13 percent cut to the National Science Foundation, a 12 percent cut at the National Institutes of Health and the termination of an Energy Department program that funds speculative technologies deemed too risky for private investors.
NIH would face a roughly $4.5 billion budget cut, according to an HHS document.

Facebook Moves Against Vaccine Misinformation

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

Monika Bickert, VP, Global Policy Management at Facebook:
We are working to tackle vaccine misinformation on Facebook by reducing its distribution and providing people with authoritative information on the topic. We are starting by taking a series of steps:
  • We will reduce the ranking of groups and Pages that spread misinformation about vaccinations in News Feed and Search. These groups and Pages will not be included in recommendations or in predictions when you type into Search.
  • When we find ads that include misinformation about vaccinations, we will reject them. We also removed related targeting options, like “vaccine controversies.” For ad accounts that continue to violate our policies, we may take further action, such as disabling the ad account.
  • We won’t show or recommend content that contains misinformation about vaccinations on Instagram Explore or hashtag pages.
  • We are exploring ways to share educational information about vaccines when people come across misinformation on this topic.
How This Will Work
Leading global health organizations, such as the World Health Organization and the US Centers for Disease Control and Prevention, have publicly identified verifiable vaccine hoaxes. If these vaccine hoaxes appear on Facebook, we will take action against them.
For example, if a group or Page admin posts this vaccine misinformation, we will exclude the entire group or Page from recommendations, reduce these groups and Pages’ distribution in News Feed and Search, and reject ads with this misinformation.
We also believe in providing people with additional context so they can decide whether to read, share, or engage in conversations about information they see on Facebook. We are exploring ways to give people more accurate information from expert organizations about vaccines at the top of results for related searches, on Pages discussing the topic, and on invitations to join groups about the topic. We will have an update on this soon.
We are fully committed to the safety of our community and will continue to expand on this work.

Monday, March 11, 2019

Motor Symptoms in Autism

In The Politics of Autism, I write:
Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings;extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.
What causes there to be a physical disability component to autism? To learn more, I spoke with Dr. St├ęphane Baudouin of Cardiff University's School of Biosciences. Baudouin has been involved in scientific research that has established a link between a genetic mutation and developmental movement impairments in autism, in the hope that unlocking the genetic mechanisms that cause motor issues in autism can eventually help provide treatment.
"People are very surprised by the fact that autism is associated with motor symptoms," Baudouin told Salon. "It's largely known in the literature ... in our papers, I think it's 70% of people with autism have motor symptoms. And so the thing that I've learned by doing it is, or the thing we decided to do, is to focus on those symptoms that are equally important for people with autism. To try to provide some biological rationale for them, and also possibilities for treatment. So that's pretty much the idea."

Sunday, March 10, 2019

Vaccine Update

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

Tetanus is an acute neuromuscular disease caused by the bacterium Clostridium tetani. Bacterial spores found in soil can enter the body through skin disruption, with subsequent onset of clinical illness ranging from 3 to 21 days (usually within 8 days). In 2017, a boy aged 6 years who had received no immunizations sustained a forehead laceration while playing outdoors on a farm; the wound was cleaned and sutured at home. Six days later, he had episodes of crying, jaw clenching, and involuntary upper extremity muscle spasms, followed by arching of the neck and back (opisthotonus) and generalized spasticity. Later that day, at the onset of breathing difficulty, the parents contacted emergency medical services, who air-transported him directly to a tertiary pediatric medical center. The boy subsequently received a diagnosis of tetanus and required approximately 8 weeks of inpatient care, followed by rehabilitation care, before he was able to resume normal activities.
 The boy required 57 days of inpatient acute care, including 47 days in the intensive care unit. The inpatient charges totaled $811,929 (excluding air transportation, inpatient rehabilitation, and ambulatory follow-up costs). One month after inpatient rehabilitation, he returned to all normal activities, including running and bicycling. Despite extensive review of the risks and benefits of tetanus vaccination by physicians, the family declined the second dose of DTaP and any other recommended immunizations.
This is the first pediatric tetanus case in >30 years in Oregon (unpublished data, Oregon Health Authority, 2018). 
Frank Bruni at NYT:
Again and again, until blue in the face, medical authorities have debunked the renegade assertion that there’s a link between the M.M.R. vaccine, so named because it inoculates against measles, mumps and rubella, and autism. On Tuesday, a group of Danish researchers who looked at more than 650,000 children over 10 years announced that they had found no such association.
Nonetheless, enough parents plug their ears that the World Health Organization lists “vaccine hesitancy” — a euphemism if ever I heard one — among 10 global health threats in 2019.
They choose their own alternative facts. Take Darla Shine, the wife of Bill Shine, who just announced his resignation as the White House communications director. Last month, amid alarms about new cases of measles, she took to Twitter with the cockamamie claim that not being vaccinated and coming down with measles or mumps was a big-picture plus, a hardiness builder that could help a person fight cancer down the line.
There’s also a man in the White House, at the Resolute Desk, who makes grand pronouncements based on random conversations; implores Americans to distrust traditional institutions and conventional sources of information; and promotes conspiracy theories (millions of illegal votes, a celebration among Muslims in Jersey City on 9/11, and on and on). He has specifically echoed and validated the apprehensions of anti-vaxxers. Whether he’s symptom or cause doesn’t matter. He’s dangerous either way.

Saturday, March 9, 2019

ABLE Age Adjustment Act 2019

The Politics of Autism includes a discussion of the ABLE Act.

A release from the US Senate Special Committee on Aging:
Today, U.S. Senators Bob Casey (D-PA), Ranking Member of the U.S. Senate Special Committee on Aging, Jerry Moran (R-KS), Chris Van Hollen (D-MD) and Pat Roberts (R-KS) introduced a bipartisan bill that would expand access to savings accounts that allow people with disabilities to save money. The Achieving a Better Life Experience (ABLE) Age Adjustment Act would increase program eligibility and allow people who have acquired a disability before age 46 to open ABLE accounts.

“People with disabilities are less likely to be employed, more likely to be underemployed and are twice as likely to live in poverty as compared to their working-age peers. With fewer opportunities to earn income and significant penalties that prevent saving, people with disabilities and their families are often in difficult financial situations,” said Senator Casey. “The ABLE Age Adjustment Act would help more than 1 million veterans with disabilities become eligible to open ABLE accounts and help all people who acquire disabilities between 26 and 46 years of age to achieve financial independence and economic stability.”

“The savings plans created through the Achieving a Better Life Experience Act have provided Americans with disabilities better options to plan for their future without burdensome barriers that often exist within federal entitlement programs,” said Senator Moran. “However, there is still more to be done. While this program has already seen great success, ABLE savings accounts are currently available only to those who acquire their disability prior to their 26th birthday, leaving out millions – including veterans – who would otherwise qualify. I am pleased to continue our bipartisan work by introducing the ABLE Age Adjustment Act, which will expand the age of eligibility and help sustain this program on a long-term basis.”

“Since the passage of the ABLE Act, families across the country have benefitted from the opportunity to better plan for the future of their disabled loved ones. This legislation will build on the foundation of the ABLE Act and expand access to these accounts to more families,” said Senator Van Hollen. “I'm proud to work with advocates from the disability community to make this important improvement to the ABLE Act and strengthen the ability of thousands of Maryland residents to live independent and meaningful lives.”

“Families with disabled individuals carry an uphill financial burden,” said Senator Roberts. “Our bill will help these families facing long-term concerns about the well-being of their disabled loved-ones by making tax-free savings accounts covering qualified expenses such as education, housing and transportation available to more individuals in need.”

Sen. Casey’s ABLE Act, which was supported by Sens. Moran, Van Hollen and Roberts, and was signed into law in 2014. The ABLE Act made it possible for states to pass legislation that allows people with disabilities, under age 26, to open tax-free savings accounts. The ABLE Act helps people with disabilities and their families save money that can be used to cover qualifying expenses, such as health care or education, without the risk of losing federal disability benefits such as Supplemental Security Income or Medicaid.

Last Congress, Sen. Casey held an Aging Committee hearing entitled, Supporting Economic Stability and Self-Sufficiency as Americans with Disabilities and their Families Age, during which he highlighted how the ABLE program has benefitted Pennsylvanians. According to the National Association of Treasurers, 34,707 ABLE accounts have been opened nationwide and more than $171 million has been invested in these accounts.

Friday, March 8, 2019

Measles Update

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

Trends in Measles Cases, 2010-2019

Tyler Pager at NYT
Public officials and health experts had given several warnings: Do not allow a student in school if they had not been vaccinated against measles.

Still, during New York City’s largest measles outbreak in a decade, a school in Brooklyn ignored that advice, resulting in one student infecting at least 21 other people with the virus.
The outbreak, at Yeshiva Kehilath Yakov in Williamsburg, is reigniting concerns that too many people in New York’s ultra-Orthodox Jewish communities are unvaccinated, as well as worries that measles would continue to spread after travelers arrived last fall from parts of Israel and Europe, where the virus was spreading.
City officials said they have struggled to increase vaccination rates in certain communities because of popularity of the widely debunked anti-vaccination movement, with parents declining vaccines for their children in fear that they increase the risk of autism.
Michael Gerson at WP:
Politics does make a huge difference to public health in one way. When politicians give legitimacy to dangerous and disproven scientific theories — as both Paul and President Trump have done on vaccinations — they are encouraging a lower level of coverage, which makes a higher level of compulsion necessary. So it is the vaccination skeptics who are making intrusive public health methods more likely. That just makes sense, when you just think about it for a second.

Court :Education Dept Illegally Delayed Equity in IDEA Regulations

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

Denise Marshall at the Council of Parent Attorneys and Advocates (COPAA):
Today, the U.S. District Court for the District of Columbia found that the U.S. Department of Education (the Department) had engaged in an ‘illegal delay’ of the 2016 Equity in IDEA regulations. Those regulations, which were supposed to go into effect on July 1, 2018, implement the Individuals with Disabilities Education Act (IDEA) requirements relating to significant racial disproportionality. The federal court’s ruling requires those 2016 final regulations to immediately go into effect.
The decision comes as a result of a lawsuit filed against the Department by the Council of Parent Attorneys and Advocates (COPAA), who were represented by the National Center for Youth Law.

The suit, filed on July 12, 2018, alleged that the Department’s delay violated the Administrative Procedure Act (APA).
“Today is a victory for children, especially children of color and others who are at-risk for being inappropriately identified for special education,” said COPAA’s executive director, Denise Marshall.

“COPAA, with the support of parents whose children who have been harmed by unlawful suspensions, assignments to segregated and restrictive classrooms, and improper decisions of both under and over identification for special education, took legal steps to fight the Department. The court has sided with the children whom the Department had deemed unimportant through its actions to delay implementation of the Equity in IDEA regulations.”

“While identification of children for special education is deeply complex, the court has made clear that the Department’s position – that the regulations would have caused [state-determined] quotas for special education – is unfounded. Today’s decision assures States will be required to help their districts who have historically discriminated against children and provide those children with early intervening services rather than ordering their suspension and expulsion from school.”

Of particular note is the court’s decision that the Department violated the Administrative Procedures Act (APA) by writing, “First, [the Department[ failed to provide a reasoned explanation for delaying the 2016 Regulations. Second, [the Department] failed to consider the costs of delay, rendering the Delay Regulation arbitrary and capricious” as COPAA had alleged. Furthermore, COPAA’s ‘associational’ standing was upheld by court which means among other legalities that they have the credibility and legal right to protect the interest of children with disabilities in this matter.
“Students and families will benefit from this ruling because their states and school districts will have clear rules about significant racial disproportionality in special education," said the National Center for Youth Law’s Executive Director Jesse Hahnel.

Marshall concluded, “As an organization that for 21 years has held up its Mission to advocate for the civil rights of students with disabilities, we especially thank the families that stood with us in this fight to protect the rights and opportunities of children. The federal government must prioritize children and ensure they have access and equity to achieve their full potential in our schools.”

Read the Court’s decision in COPAA vs Elizabeth (Betsy) DeVos, Secretary of Education; Johnny Collett, Assistant Secretary for Special Education and Rehabilitative Services; U.S. Department of EducationOpens a New Window..

COPAA was also represented in the lawsuit by Sidley Austin LLP.

Thursday, March 7, 2019

IDEA Full Funding 2019

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

The National School Boards Association backs reauthorization and full funding of the Individuals with Disabilities Education Act (IDEA).

From an NSBA release:
IDEA (Public Law 94-142), passed by the United States Congress and signed by President Gerald Ford in 1975, has not been updated since 2004. The law needs to be modernized to ensure that the rights of children with disabilities are protected and to assist states and school districts so they can build upon their current efforts to provide students who need extra help the support and tools they need to receive an equitable educational opportunity.

Effectively serving students with disabilities and their families is a shared responsibility and school board members have been diligently working to do their part. Public schools have made numerous enhancements – employing new instructional approaches, intervening with students and their families earlier, retaining more special education specialists, providing a range of programs and services, and more – to help students with additional educational needs. The current law, however, fails to meet the needs of students and their families.
The federal government’s contribution to serve IDEA students covers approximately 16 percent of the funding, which is well below the promised level of 40 percent. The funding gap serves as an unfunded mandate by forcing state and local governments to make up the difference. This discrepancy also impacts the amount of funding that serves students without disabilities, which is an unintended consequence of the federal government’s failure to meet its obligation.
While the law needs to be reauthorized and funded fairly, state government officials and school board members have worked to make IDEA a successful investment in students with special needs. A 2018 U.S. Department of Education report documents that the percentage of students with disabilities graduating with a regular high school diploma increased by 10 percent between 2006 and 2016. This is a notable accomplishment among the more than six million students with disabilities (13.5 percent of all students) in public schools.
“Students, parents and public schools face challenges to implement effective strategies to help students with differing needs succeed in school as a result of the federal government’s broken promise to meet its obligation,” said NSBA Executive Director and CEO, Thomas J. Gentzel. “Congress will help ensure better outcomes for all students when it reauthorizes and fully funds IDEA.
“It is imperative students with disabilities and their families are supported in their educational pursuits. Unfortunately, the federal government is not meeting its promise to these individuals as they strive to reach their goals,” said Representative John Katko (NY-24). “The federal government is leaving state and local governments to pick up too much of the tab when it comes to special education funding. In a time when students with special needs are graduating from high school at an increasing rate and experiencing educational achievement, the federal government should want to be a part of that success. I am pleased to once again advocate for full funding for the Individuals with Disabilities Education Act.”

Wednesday, March 6, 2019

Senate Hearing on Vaccines

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

Yesterday, the Senate Committee on Health, Education, Labor, and Pensions held a hearing titled  "Vaccines Save Lives: What Is Driving Preventable Disease Outbreaks?"

Ethan Lindenberger, senior Norwalk High School, Norwalk, Ohio:
My mother is an anti-vaccine advocate that believes vaccines cause autism, brain
damage, and do not benefit the health and safety of society despite the fact such opinions have been debunked numerous times by the scientific community. I went my entire life without vaccinations against diseases such as measles, chicken pox, or even polio. However, in December of 2018, I began catching up on my missed immunizations despite my mother's disapproval, eventually leading to an international story centered around my decisions and public disagreement with my mother’s views
I remember speaking with my mother about vaccines, and at one point in our discussion she claimed a link exist between vaccines and autism. In response, I presented evidence from the CDC which claimed directly in large bold letters, “There is no link between vaccines and autism.” Within the same article from the CDC on their official website, extensive evidence and studies from the institute of medicine (IOM) were cited. Most would assume when confronted with such strong proof, there would be serious consideration that your views are incorrect. This was not the case for my mother, as her only response was, “that’s what they want you to think.” 
The Atlantic examined vaccine related posts on the social media platform Facebook from 2016-2019. In their article, they found that “Just seven anti-vax pages generated nearly 20 percent of the top 10,000 vaccination posts in this time period.This echo-chamber that a handful of sources generate create the majority of anti-vaccine information on these platforms, and with my mother it continues to influence her views along with countless Americans.
My mother would turn to some of the cited sources in this article by The Atlantic, using their information as a basis for her views. This was problematic, as with a quick inspection of the claims and evidence of these sites their intentions are revealed. Information is not properly cited, and data is skewed to create false claims. In one video published by the website “” (which was listed as one of the top contributors of anti-vaccine information by the Atlantic), the measles outbreak was made out to be a unfounded panic created by big pharmaceutical companies and meant to push legislative agendas. Del Bigtree, a celebrity in the anti-vaccine movement, spoke with “Dr. Bob Sears.” My mom and I sat down, watching this video so she could prove her beliefs were not unfounded.
Opposition to vaccines began in England in the early 19th century after introduction of Jenner’s cowpox vaccine for the dangerous disease smallpox. People objected on religious grounds and due to the irrational fear of becoming a cow. Opposition in the United States became common in the 1850s, resulting in lawsuits against states that mandated vaccination, culminating in a Supreme Court opinion in 1905 that found in favor of states’ right to enforce mandatory vaccination as a public health tool. Although the concept of vaccination opposition is not new, the rise in frequency and ease of rapid international travel has made it much more dangerous today than it was a century ago when vaccine refusers may have been isolated from others. The reasons for refusing vaccination have historically been very heterogenous. In 1998 the Wakefield Hoax  unified many vaccine refusers by providing a single platform for them using a false narrative – that childhood vaccines caused unsuspected, long term medical problems that had been missed by scientists. In response, a great deal of scientific work was done to prove that there is no link between vaccines and conditions such as autism. The Institute of Medicine has now declared that the evidence is thorough and convincing on this point. The antivaccination movement at this time, therefore, no longer has a platform or any credibility and has returned to a more heterogeneous group of objections.
 John Wiseman:, DrPH, MPH Secretary Of Health Washington State Department of Health:
As secretary of health for Washington state, my mission is to protect and promote the  lives of all the people in our state and when making public policy to ensure that it is based on the best science available to us. To that point, I want to speak directly to the parents who have children with autism and other serious health issues and who have been attending our hearings in Washington state and who are watching this hearing
today. I see you and your children. I see your pain, your desire for answers to your children’s health issues, your skepticism of government and the pharmaceutical industry, your mission to give your children the best life they can have and your desire to prevent other parents from the pain and suffering you and your children experience. Your  mission to protect and promote the health of your children is a mission I share. And I know on this point, some of you will strongly disagree with me: the science demonstrates that autism is not caused by vaccines.
Due to the success of vaccines, fewer people have witnessed the complications and  severity of vaccine preventable diseases. Unfortunately, this means that some parents may believe that vaccination is no longer necessary or that the minor or rarely severe  complications from vaccines are somehow worse than getting the disease, resulting in some parents not vaccinating their children. Discredited and fraudulent research has been used as a basis to claim a link between MMR and autism.24 Moreover, public health officials throughout the country are gravely concerned about the latest  misinformation originating from a well-organized and orchestrated anti-vaccination

Gottlieb to Step Down

Food and Drug Commissioner Scott Gottlieb, who used his post to tackle difficult public health issues from youth vaping to opioid addiction – surprising early skeptics worried about his drug industry ties – resigned Tuesday, effective in about a month.
Gottlieb, who has been commuting weekly to Washington from his home in Connecticut, said he wants to spend more time with his family. The 46-year-old physician, millionaire and cancer survivor known for a self-assured, sometimes brash, manner lives in Westport, with his wife and three daughters – 9-year-old twins and a 5-year-old.
The federal government may try to take action if states don't tighten their vaccine exemption laws and measles continues to spread in sections of the U.S., FDA Commissioner Scott Gottlieb tells Axios.
Driving the news: Overall case numbers of measles remain low in the U.S. but the disease is growing in areas of high non-vaccination rates. Some states like Washington are considering tightening their exemptions even as they continue to face a more organized anti-vaccination movement.

"It's an avoidable tragedy," Gottlieb, who says he's usually a proponent of state rights, tells Axios. "Too many states have lax laws."

Tuesday, March 5, 2019

Antivax and Amazon

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

Caitlin Owens at Axios Vitals:
Amazon is the latest tech company to crack down on content spreading false information about vaccines from its platform.
  • Buzzfeed News reported on Friday that anti-vax documentaries were available on Amazon Prime Video on Friday morning, but appeared to have been removed by the afternoon.
  • Around noon, Rep. Adam Schiff (D-Calif.) — chairman of the House Intelligence Committee — sent a letter to Amazon CEO Jeff Bezos expressing concern that the company was "surfacing and recommending products and content that discourage parents from vaccinating their children, a direct threat to public health."

The big picture: Amazon's actions follow similar ones taken by other tech companies like Google and Facebook, which have also taken steps to reduce the availability of anti-vaccine content on their platforms in response to increased public pressure.
  • Recent measles outbreaks have been attributed, in part, to reduced vaccination levels in some areas.
  • While tech companies have tried to avoid becoming content arbiters, "the issue is harder to duck when the spread of false information can lead to real-world harm," my colleagues Sara Fischer and Kia Kokalitcheva wrote last month.