Autism Organizations and COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  Major national organizations are posting information and advice:

• Autism Society 
• Autism Speaks
• Austistic Self-Advocacy Network
• National Autism Association
• Autism Support Network

Waivers and Accountability

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Elissa Nadworny at NPR:

[The] U.S. Education Department announced it was giving schools flexibility in interpreting IDEA, saying that complying with the law, "should not prevent any school from offering educational programs through distance instruction."

Jeanne Allen, who founded the Center for Education Reform, an advocacy group that promotes school choice, said she was relieved to get the guidance, as there's been, "confusion about what schools, school districts and educators were permitted to do." She acknowledges that there are concerns about equity, but argues that schools should be looking to ed tech innovators and seeking creative solutions, rather than putting a hold on all learning.

"The law does not say if you don't educate every single person today in real time, you're going to get penalized," she maintains, "You don't stop schools and leaders from educating students to find the perfect solution."

A new federal relief package, which President Trump signed into law on Friday, offers Education Secretary Betsy DeVos the opportunity to go one step further: She now has 30 days to seek waivers for additional provisions of IDEA in order to provide schools with "limited flexibility."

This provision makes disability advocates nervous. "We're talking about waiving a civil right for our most vulnerable people in our society, children who don't vote, who have no voice, who are relying on their parents to advocate for them," says Stephanie Langer, a Florida civil rights attorney who focuses on education and disability.

She worries that if the federal government lets states and districts off the hook for providing accommodations for students with disabilities, schools and teachers won't even try. "If they know they won't be held accountable at the back end, they simply will not try," Langer maintains. "Having the requirements in place requires schools to do something rather than nothing, even if it's not perfect.

HHS Guidance on Health Care Discrimination During COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

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

A Saturday release from the HHS Office for Civil Rights:

Today, the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) is issuing a bulletin to ensure that entities covered by civil rights authorities keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs, including in the provision of health care services during COVID-19.

OCR is particularly focused on ensuring that covered entities do not unlawfully discriminate against people with disabilities when making decisions about their treatment during the COVID-19 health care emergency.

OCR enforces the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, the Age Discrimination Act, and Section 1557 of the Affordable Care Act which prohibits discrimination in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances, based on the best available objective medical evidence.

“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” said Roger Severino, OCR Director. “HHS is committed to leaving no one behind during an emergency, and helping health care providers meet that goal.”

“Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.” Severino added.

The Bulletin may be found at: https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20 - PDF

Lifespan Approach to Quality of Life Measurement

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

A release from Children's Hospital of Philadelphia:

A new study led by researchers at Children's Hospital of Philadelphia (CHOP) shows that a set of simple questionnaires can help clinicians and families better evaluate the quality of life of people diagnosed with autism spectrum disorder (ASD). The newly-developed tool is designed for children, adolescents, and adults on the autism spectrum, and early findings show where clinicians can learn more about how to support the needs of autistic individuals by directly asking them these critical questions. The findings were published online this month by the journal Autism Research.

While clinical researchers often focus on measuring diagnostic criteria or behavioral impairments, autistic self-advocates, family members, and community organizations have long called for a greater emphasis on measuring specific and practical areas that, if properly addressed, could then help people on the autism spectrum achieve a better quality of life. Several methods on how to accomplish this have been proposed, but they have not necessarily addressed topics covering a person's entire lifespan or had sufficient data on women and girls.

"Individual studies have examined specific quality of life measurements for people with autism, but we believed there was an opportunity to create an approach that could measure quality of life across multiple areas, in a way that can grow throughout their lifetime as needs change," said Laura Graham Holmes, PhD, a postdoctoral researcher at the A.J. Drexel Autism Institute at Drexel University who led the research while she was a postdoctoral fellow at the CHOP Center for Autism Research. "We wanted to be sure this tool encompassed a variety of domains, including physical and mental health, relationships, and subjective well-being, so we could begin to understand on a more nuanced level the struggles and successes that autistic people experience throughout their lives."

The study team developed and tested an autism-specific lifespan quality of life measurement tool, using the National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS®) as its foundation. The new tool is named the PROMIS Autism Battery - Lifespan (PAB-L). After reviewing each area and receiving feedback from autistic people and their families as well as autism experts, the tool was administered for autistic children ages 5-13 (reported through parent proxy), adolescents ages 14-17 (parent proxy and/or self-reported), and adults ages 18-65 (self reported) and then results were compared with the general population.

A total of 912 participants completed the tool's surveys online. The study measured feasibility, and participants reported that the survey was easy to understand, covered important topics, and may even change the way an individual or parent manages their autism support programs or clinical care based on the results.

While some individuals reported strengths, on average, people of all ages on the autism spectrum reported greater challenges and lower quality of life compared with their peers without an autism diagnosis. In particular, they reported lower life satisfaction, less social support and more social isolation, were more likely to exhibit emotional distress through symptoms like anger and anxiety, and were more likely to have sleep problems. Women and teenaged girls on the autism spectrum reported higher levels of anxiety and sleep problems than their male counterparts. As this is the first study to use this tool, more work is needed. However, these measurements give researchers an important starting point.

"This study demonstrated that assessing quality of life among patients of different ages and genders is possible, and that it's meaningful," said Judith S. Miller, PhD, a psychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences, a senior scientist and training director in the Center for Autism Research at CHOP and senior author of the study. "We believe that these findings provide an important foundation to answer some very important questions about how to support the quality of life for people with autism, including those who have been historically under-represented in clinical research."

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Graham et al, "A lifespan approach to patient-reported outcomes and quality of life for people on the autism spectrum." Autism Res, online 10 March 2020. DOI: 10.1002/aur.2275.

Triage

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

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

Amy Silverman at Pro Publica:

Advocates for people with intellectual disabilities are concerned that those with Down syndrome, cerebral palsy, autism and other such conditions will be denied access to lifesaving medical treatment as the COVID-19 outbreak spreads across the country.

Several disability advocacy organizations filed complaints this week with the civil rights division of the U.S. Department of Health and Human Services, asking the federal government to clarify provisions of the disaster preparedness plans for the states of Washington and Alabama.

The advocates say the plans discriminate against people with intellectual disabilities by deprioritizing this group in the event of rationing of medical care — specifically, access to ventilators, which are in high demand in treating COVID-19 cases. More than 7 million people in the U.S. have some form of cognitive disability.

Some state plans make clear that people with cognitive issues are a lower priority for lifesaving treatment. For instance, Alabama’s plan says that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Another part says that “persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.”

...
“What we’re seeing here is a clash between disability rights law and ruthless utilitarian logic,” said Ari Ne’eman, a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University. “What this is really about at the end of the day is whether our civil rights laws still apply in a pandemic. I think that’s a pretty core question as to who we are as a country.”

One in Fifty-Four

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

Matthew J. Maenner and colleagues have a report at MMWR titled: "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016."  The abstract:

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2016.

Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.

Results: For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months).

Interpretation: The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children.

Public Health Action: These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.

Stimulus and Waivers

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

From the stimulus bill (Title III, Subtitle B, section 3511 of HR 748 as amended and passed by the Senate):

REPORT.—Not later than 30 days after the date of enactment of this Act, the Secretary shall prepare and submit a report to the Committee on Health, Education, Labor, and Pensions and the 18 Committee on Appropriations of the Senate, and the Committee on Education and Labor and the Committee on Appropriations of the House of Representatives, with recommendations on any additional waivers under the Individuals with Disabilities Education Act (20 U.S.C. 1401 et seq.), the Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.), the Elementary and Secondary Education Act of 1965 (20 U.S.C. 6301 et seq.), and the Carl D. Perkins Career and Technical Education Act of 2006 (203 U.S.C. 2301 et seq.) the Secretary believes are necessary to be enacted into law to provide limited flexibility to States and local educational agencies to meet the needs of students during the emergency involving Federal primary responsibility determined to exist by the President under section 501(b) of the Robert T. Stafford Disaster Relief and Emergency Assistance Act (42 U.S.C. 5191(b)) with respect to the Coronavirus Disease 2019 (COVID-19).

FAPE, Coronavirus, and Distance Instruction

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Updated guidance from the US Department of Education:

To be clear: ensuring compliance with the Individuals with Disabilities Education Act (IDEA), † Section 504 of the Rehabilitation Act (Section 504), and Title II of the Americans with Disabilities Act should not prevent anyschool from offering educational programs through distance instruction. 

School districts must provide a free and appropriate public education (FAPE) consistent with the need to protect the health and safety of students with disabilities and those individuals providing education, specialized instruction, and related services to these students. In this unique and ever-changing environment, OCR and OSERS recognize that these exceptional circumstances may affect how all educational and related services and supports are provided, and the Department will offer flexibility where possible. However, school districts must remember that the provision of  FAPE may include, as appropriate, special education and related services provided through distance instructionprovided virtually, online, or telephonically. 

Carolyn Jones at EdSource:

The issue has direct implications for the nearly 800,000 special education students in California, who comprise 12.5 percent of the state’s public school enrollment, and who are now at home, with their often carefully constructed education programs completely upended.

DeVos’ announcement was welcomed by special education advocates, who said it provided clear guidance but enough flexibility for districts to find effective ways to meet the needs of special education students.

However, school administrators feel that the guidance they are receiving from both Washington and Sacramento is inadequate to assure school districts that they won’t face legal action if they are unable to provide all special education students with what is termed an “appropriate education” using online tools.

“(The state and federal guidance) is not nearly enough,” said Wesley Smith, executive director of the Association of California School Administrators, representing over 17,000 superintendents, principals and other administrators. “We need explicit waivers of explicit provisions. … Our districts are asking for relief so they can enact the governor’s orders to continue providing high-quality education.”

Will the Disabled Go to the Back of the Medical Line?

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Ari Ne'eman at NYT:

In Italy, doctors are already rationing access to care on the basis of age and disability. The Washington Post reports that many states are considering how to implement similar rationing measures here. Though almost everyone would agree doctors may deny care that is unlikely to benefit a patient, there may soon be too many patients in urgent need of lifesaving treatment and too few resources to treat them all.

When that happens, some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.

...

When my friends with some of these needs go into the hospital, even under normal circumstances, those of us who love them try to organize lots of calls and visits. These aren’t just to keep the patient’s spirits up. They are designed to send a message to treating professionals: “Someone cares if this person lives or dies. You are being watched.”

...

At its core, these debates are about value — the value we place on disabled life and the value we place on disability nondiscrimination. When Congress passed the Americans With Disabilities Act 30 years ago, did it do so as a form of charity limited to times of plenty? Or was our country serious about disability as a civil rights issue? Charity can end when resources are scarce — civil rights must continue, even if doing so imposes a cost in time, money and even lives. People with disabilities have an equal right to society’s scarce resources, even in a time of crisis.

Social Distancing and Caregiving

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Ella Torres at ABC:

As health experts and government officials stress the importance of social distancing to fight the novel coronavirus pandemic, workers and families who care for those with developmental disabilities are faced with the harsh realization that it's an impossible task for them.

"We have to work very intimately with people," Leann McQueen, a residential coordinator for the Young Adult Institute (YAI) in Brooklyn, which provides a multitude of services for children and adults with disabilities, told ABC News in a telephone interview Thursday.

...
"Anyone with autism likes structure and repetition. Doing the same things every day is very therapeutic," McQueen said. "When things are jolted, it can cause a lot of challenges, a lot of stress on the person."

...
Pradeepan Jeeva, whose 4-year-old son Obi has autism, said he and his wife aren't able to give their son the amount of care he needs while still doing their job.

They worry he'll lose the progress he gained in therapy school.

...
"But we know that [these] may be short-term solutions if Seattle did what San Francisco is doing, and have us placed under a 'shelter-in-place' order. We believe in the public good and public health, but at the same time, we're put in the situation of what do we do?

Do we want to risk our son regressing?" Jeeva said. "Or are we OK with potentially spreading a disease?"

Prevalence and Inequality in California

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

A release from the University of Colorado at Boulder:

Wealthy, white California counties--once considered the nation's hotbeds for autism spectrum disorder (ASD)--have seen prevalence flatten or fall in the last two decades, while rates among poor whites and minorities keep ticking up, new CU Boulder research has found.

The study, published March 19 in the Journal of Autism and Developmental Disorders, raises the possibility that parents in wealthier counties are successfully reducing environmental exposures that may contribute to autism risk, or taking other steps to curb its severity early on.

While that's a hopeful possibility, the authors say, the findings also illuminate a disturbing economic and racial divide.

"While autism was once considered a condition that occurs mainly among whites of high socioeconomic status, these data suggest that the brunt of severe autism is now increasingly being borne by low-income families and ethnic minorities," said lead author Cynthia Nevison, PhD, an atmospheric research scientist with the Institute of Arctic and Alpine Research, who also studies environmental health.

Adds co-author Willam Parker, PhD, an autism researcher at Duke University Medical Center: "There is potentially good news here, but, unfortunately, not everyone is a beneficiary of this good news."

For the study, the researchers analyzed 20 years' worth of autism caseload counts from the California Department of Developmental Services, comparing data from 36 of the state's most populous counties.

Between birth years 1993 and 2000, autism prevalence increased steadily among all racial groups.

But around 2000, the trajectories started to diverge: Prevalence among whites in wealthy counties like Santa Clara (home to Silicon Valley) and from Monterey to the San Francisco coast started to decline.

In middle-income counties like Sacramento, Los Angeles and San Diego, prevalence among whites continued to increase, but at a slower rate.

Meanwhile, in lower income areas like Riverside and the South Central Valley, rates among whites climbed steeply.

By birth year 2013, prevalence among whites in the lowest income counties was at least double that of whites in the highest income counties. Generally speaking, the higher the county income, the lower the rate of autism among white children.

Notably, Santa Clara County had a surge in the rate of autism spectrum disorders between 1993 and 2000, with rates doubling among whites and Asians in just seven years. As Nevison and Parker recall in the new paper, that surge gave rise to controversial theories that men with poor social skills but strong math and engineering skills were increasingly able to find partners in the tech-age and were fathering "genetically autistic" children.

"Our data contradict that argument," said Nevison, noting that today Santa Clara County has one of the lowest prevalence rates of severe autism in the state among whites. Growth in prevalence among Asians has also flattened in the county.

Meanwhile, the study found, incidence among blacks has increased rapidly across California, marking the highest rates among any ethnic or racial group at 1.8%. That finding is in line with previous research finding that autism prevalence is rising rapidly nationwide among African Americans.

Some health experts have attributed such increases among minorities to better screening and diagnosis, but the authors believe environmental factors also play a role.

Just which factors may be at play is unclear, but Parker notes that many of the same things that fuel disease-causing inflammation--toxins, unhealthy food and emotional stress--are also associated with autism. And lower-income and minority families tend to have a harder time accessing or affording healthier lifestyle options.

Established risk factors associated with autism include: advanced parental age, challenges to the immune system during pregnancy, genetic mutations, premature birth and being a twin or multiple.

The authors cannot say if their findings would translate to other counties around the country or to milder forms of autism. They also cannot rule out that wealthy families are opting out of state services in favor of private services. More research is underway.
With autism affecting one in 59 children nationwide in 2018--a rate expected to be revised by the Centers for Disease Control later this spring--they hope the paper will encourage parents and policymakers to look beyond genetics and better outreach and diagnosis.

"There is an urgent need to understand what wealthy California parents are doing or have access to that may be lowering their children's risk," they conclude.

The Coronavirus Crunch for Disability and Education

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Laura Meckler and Valerie Strauss at The Washington Post:

In the age of this new and deadly virus, most American school districts have closed their doors, hoping remote learning can serve as a replacement in the coming weeks or even months. But few districts have figured out how to extend this online learning and other critical services to the 7 million children with disabilities.

Federal law requires school systems to provide students with disabilities an appropriate education. Unable to meet that requirement, some districts are opting not to offer online instruction to anyone because they are unable to offer it to everyone.

Meantime, parents are at home, struggling to care for their children, often while juggling work and care for siblings, with no idea how long the national experiment in mass home schooling will last.

It’s daunting to even think about, said Michael McKenzie of Wilmette, Ill., who has an eighth-grade son who is on the autism spectrum. At school, his son has a huge support team: a vision therapist, speech therapist, occupational therapist, learning behavioral therapist and various teachers in the classroom, adaptive special education and special subjects.

How will McKenzie and his wife replicate all that? “The best we can,” he said.

Corey Mitchell at Education Week:

The Northshore School District in suburban Seattle—a hotspot in the national coronavirus outbreak—managed to roll out its districtwide distance learning plan for 25,000-plus students ahead of a mandatory five-week statewide shutdown.

In the weeks since campuses closed there, staff got thousands of tablets and hundreds of internet hotspots into the hands of students—only to suspend operations because school leaders fear they could be in violation of state and federal mandates for providing equitable services.

In a video message released Tuesday, Kenneth Marcus, the education department's assistant secretary for civil rights, said: "Online learning is a powerful tool for educational institutions as long as it is accessible for everyone. Services, programs, and activities online must be accessible to persons, including people with disabilities, unless equally effective alternate access is provided."

Districts face the potential loss of federal funding if they fail to provide accommodations for students with disabilities. They also face the risk of complaints, and potential legal action, from parents and disability rights advocates for running afoul of federal civil rights laws.

"The first things [schools] are thinking of is 'Are we going to get ourselves in trouble?''' said Phyllis Wolfram, the executive director of the Council of Administrators of Special Education.

But the situation is a Catch-22: Districts could face the same issues if they refuse to do anything at all.

OCR on Online Education and Coronavirus

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

The Office for Civil Rights (OCR)  presents this short webinar on online education.



Fact Sheet from OCR:

Students with Disabilities at Elementary and Secondary Schools School officials have an obligation to avoid discrimination on the basis of disability under Title II and Section 504, while cooperating with public health authorities to ensure that students with disabilities have access to the school’s education program. School officials should acknowledge the expertise and role of public health authorities, as well as parental concerns, to determine whether students should stay home.

If a student who has an individualized education program (IEP) through the Individuals with Disabilities Education Act, or is receiving services under Section 504, is required or advised to stay home by public health authorities or school officials for an extended period of time because of COVID-19, provision should be made to maintain education services. This also applies if the student is absent from school as advised by the student’s treating physician, consistent with school policy and documentation requirements. During such absences, if the school is open and serving other students, the school must ensure that the student continues to receive a free appropriate public education (FAPE), consistent with protecting the health and safety of the student and those providing that education to the student. If feasible, the student’s IEP Team, or the personnel responsible for ensuring FAPE to a student for the purposes of Section 504, can be utilized to assist with the effort to determine if some, or all, of the identified services can be provided through alternate or additional methods. Accessible technology may afford students, including students with disabilities, an opportunity to have access to high-quality educational instruction during an extended school closure, especially when continuing education must be provided through distance learning. 

If a school district closes its schools and does not provide any educational services to the general student population, then a school would not be required to provide services to students with disabilities during that same period of time. Once school resumes, the school must return to providing special education and related services to students with disabilities in accordance with the student’s IEP or, for students entitled to FAPE under Section 504, consistent with any plan developed to meet the requirements of Section 504.

The Department understands that there may be exceptional circumstances that could affect how a particular service is provided. If a student does not receive services after an extended period of time, the student’s IEP Team, or appropriate personnel under Section 504, must make an individualized determination whether and to what extent compensatory services are needed consistent with the respective applicable requirements, including to make up for any skills that may have been lost.

Additionally, IEP Teams are not required to meet in person while schools are closed. If an evaluation of a student with a disability requires a face-to-face assessment or observation, the evaluation would need to be delayed until school reopens. Evaluations and re-evaluations that do not require face-to-face assessments or observations may take place while schools are closed, so long as a student’s parent or legal guardian consents. These same principles apply to similar activities conducted by appropriate personnel for a student with a disability who has a plan developed under Section 504, or who is being evaluated under Section 504. For more information on providing services to students with disabilities during the coronavirus outbreak, see: https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/qa-covid-19-03-12-2020.pdf

Students with Disabilities at Postsecondary Schools Officials at postsecondary schools should consult with public health officials in determining how to respond when there are cases of coronavirus in the community. Whatever decisions are made by the school (such as decisions to temporarily suspend classes), schools must continue to comply with their non-discrimination obligations under federal civil rights laws, including Section 504 and Title II.

Offit on Vaccines and Autism

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. 

The Children's Hospital of Philadelphia has a video featuring Dr. Paul Offit:

Coronavirus and Autistic Students

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.

In the United States, public schools are responsible for a variety of services for youths on the spectrum.  When they suspend classes, problems follow.

From Autism Speaks:

If your local school district closes during the ongoing COVID-19 outbreak, you may be faced with a number of obstacles. For children with autism, the school closure may mean disruption to learning support services your child receives at school.

Some states, such as New Jersey, have published guidance for school districts to being preparing a school health-related closure preparedness plan. This plan would outline how learning would be continued, and what tools they would use to accomplish it, in the event of a school closing.

The World Health Organization also published an action kit for families and schools for COVID-19 related closures.

Other states, including Ohio, have published several checklists to help individuals/families, business, healthcare workers and others prepare.

As always, please call our Autism Response Team at 1-888-AUTISM2 or email help@autismspeaks.org for questions and access to tools, resources and supports. For information specific to the coronavirus and the most up-to-date information on the situation, please visit CDC.gov and the CDC’s coronavirus information site.

Shutdown and Special Education

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.

Coronavirus shutdowns pose unique problems, sometimes dire ones. Many people on the spectrum suffer from anxiety disorders, and a national crisis surely adds to their anxiety.  

From the US Department of Education:

The IDEA, Section 504, and Title II of the ADA do not specifically address a situation in which elementary and secondary schools are closed for an extended period of time (generally more than 10 consecutive days) because of exceptional circumstances, such as an outbreak of a particular disease.

If an LEA [local education agency] closes its schools to slow or stop the spread of COVID-19, and does not provide any educational services to the general student population, then an LEA would not be required to provide services to students with disabilities during that same period of time. Once school resumes, the LEA must make every effort to provide special education and related services to the child in accordance with the child’s individualized education program (IEP) or, for students entitled to FAPE [free appropriate public education]  under Section 504, consistent with a plan developed to meet the requirements of Section 504. The Department understands there may be exceptional circumstances that could affect how a particular service is provided. In addition, an IEP Team and, as appropriate to an individual student with a disability, the personnel responsible for ensuring FAPE to a student for the purposes of Section 504, would be required to make an individualized determination as to whether compensatory services are needed under applicable standards and requirements.

If an LEA continues to provide educational opportunities to the general student population during a school closure, the school must ensure that students with disabilities also have equal access to the same opportunities, including the provision of FAPE. (34 CFR §§ 104.4, 104.33 (Section 504) and 28 CFR § 35.130 (Title II of the ADA)). SEAs, LEAs, and schools must ensure that, to the greatest extent possible, each student with a disability can be provided the special education and related services identified in the student’s IEP developed under IDEA, or a plan developed under Section 504. (34 CFR §§ 300.101 and 300.201 (IDEA), and 34 CFR § 104.33 (Section 504)).

Kalyn Belsha at Chalkbeat:

“I’m very, very concerned because when these school closures become a nationwide issue … this population will just regress,” said Chris Yun, an education policy analyst at Access Living, a Chicago-based disability rights group. Another way to do it, she said, would be for a district to proactively consider extending the school year or offering summer school.
...

Yun, in Chicago, said she was disappointed when Illinois education officials recently told districts to come up with e-learning plans without providing much information about how that would affect students with disabilities.

“Is it helpful to school districts? No, not at all,” Yun said. “It’s good to mention that e-learning services should be accessible to students with disabilities. But how is the question.” (On Thursday, the state issued some additional guidance that said it recognized e-learning wouldn’t work for all students, and that it may be necessary to consider alternatives.)

Autism Data

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

According to data from the Office of Special Education Programs, the share of IDEA students with autism doubled between 2008 and 2018.

PTSD and Autism Parents

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

Michelle Stewart and colleagues have an article in Research in Autism Spectrum Disorders titled Challenging Child Behaviours Positively Predict Symptoms of Posttraumatic Stress Disorder in Parents of children with Autism Spectrum Disorder and Rare Diseases.  The abstract:

Background

This study investigated the validity of conceptualising elevated stress in parents of children who exhibit challenging behaviour within the framework of posttraumatic stress disorder (PTSD). It was hypothesised that parents of children with autism spectrum disorder (ASD), and parents of children with a rare disease would endorse greater PTSD symptomatology than parents of typically developing (TD) children, and that challenging child behaviours would positively predict PTSD symptomatology.

Method

The Life Events Checklist for DSM-5, Developmental Behaviour Checklist (Parent) and PTSD Checklist for DSM-5 were administered to 395 parents.

Results

Significantly more PTSD symptomatology was reported by parents of children with ASD and parents of children with a rare disease than parents of TD children, and challenging child behaviours positively predicted PTSD symptomatology in both groups.

Conclusion
A PTSD framework may validly explain elevated stress among some parents of children with ASD and parents of children with a rare disease, and has important implications for support delivered to parents by healthcare providers.

TX Metro Communities Have More Vaccine Exemptions

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.

Maike Morrison ,Lauren A. Castro and Lauren Ancel Meyers have an article at PLOS Medicine titled "Conscientious Vaccination Exemptions in Kindergarten to Eighth-Grade Children Across Texas Schools From 2012 to 2018: A Regression Analysis."

Author summary

Why was this study done?

Nonmedical vaccination exemptions for childhood preventable diseases have been rising in the US, presumably fueled by declining health literacy and increasing distrust in medical authority.

Studies in “hotspot” states have found that vaccine hesitancy is positively correlated with both the educational level of the population and the proportion of the population that self-reports as ethnically white.

Recent population growth and declining vaccination percentages in Texas put the state at clear risk for outbreaks of vaccine-preventable diseases. However, the risk is highly variable, and its socioeconomic and geographic determinants of risk are largely unknown.

This research aims to provide actionable insight for policy makers into trends in vaccine exemptions across Texas at a granular scale.

What did the research do and find?

We analyzed publicly available reports of the number of conscientious vaccination exemptions (CVEs) for 318 private, 818 public, and 60 charter school systems in Texas from the 2012–2013 to 2017–2018 school years.

We used regression methods to relate CVE percentages at the school and county scales to 115 socioeconomic and demographic variables available from the US Census Bureau and the Texas Education Agency.

Between the 2012–2013 and 2017–2018 school years, median CVE percentages increased from 0.38% to 0.79%, resulting in more than 24,000 additional vaccination-exempt students. Increases were highest in suburban school districts.

The 2017–2018 statewide public school exemption percentages were best explained by school system resources, the percentage of the students that self-report as ethnically white, and whether the school system was in a metropolitan county. In metropolitan areas, vaccine exemptions were positively correlated with wealth and attained educational level.

What do these findings mean?

Metropolitan communities are at higher risk than rural communities for high exemption percentages across Texas.

County-level averaging of CVE percentages obfuscates pockets of low vaccine coverage; the proportion of high-risk schools is a more sensitive indicator of local risk.

The findings of the study—both the improved metric for detecting high risk communities and the robust socioeconomic predictors of declining CVEs—can inform targeted interventions to combat the rising but heterogeneous risks of disease emergence across Texas.

Julia Ries at Vice:

Other health experts believe that privileged people have more time to spend consuming information online, including misinformation about the safety and effectiveness of vaccines—like, that vaccines are linked to autism (false), or that they can overwhelm the immune system (nope), or that natural infection provides better immunity than infection (not true!). After reading up online, many non-medical experts feel they know "what's best" for their child—something experts call “the privilege of choice.” (Low-income, ethnically diverse areas are also often under-vaccinated, but that’s mostly due to access plus financial and religious reasons.)
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Texas isn't an anomaly. Early evidence has discovered that pockets in California are seeing the same vaccine hesitancy amongst college-educated white people. These states represent what’s happening in terms of the anti-vax movement across the country. Recent studies have found that hotspotsin other states (like California, Arizona, Oregon, and Colorado) largely consist of well-off white people who don’t trust vaccines.

All 50 states currently require children to be vaccinated for school attendance unless they qualify for a medical exemption; forty-five of those states also allow religious exemptions. Texas is one of 15 states that permits families to use a “philosophical objection”—a personal, moral, or other belief—to get out of vaccination. It’s also one of the only states that doesn’t require education on the risks of going unvaccinated. The states’ lenient vaccination policies allowed for rich white people's invocation of personal reasons to not vaccinate—as a result, vaccine hesitancy—and, so, vaccine-preventable disease outbreaks—have surged.