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).