HCBS During the Pandemic

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

Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula at KFF:

The COVID-19 pandemic presented a public health emergency that was unprecedented in its scope and duration and brought new focus to the long-standing unmet need for home and community-based services (HCBS) among seniors and people with disabilities and direct care workforce shortages. Recognizing Medicaid’s role as the primary payer for HCBS, this issue brief presents early findings from the most recent KFF 50-state survey of Medicaid HCBS programs. It focuses on state policies adopted in response to challenges posed by the pandemic, the pandemic’s impact on Medicaid HCBS enrollees and providers, and states’ early plans for the new American Rescue Plan Act (ARPA) 10 percentage point temporary increase in federal Medicaid matching funds for HCBS. We survey states about HCBS provided through state plan authorities and waivers. There were 277 HCBS waivers in FY 2018. Overall, 41 states responded to the survey by mid-July 2021, accounting for 87% of total HCBS spending nationally in FY 2018, though response rates for specific questions varied. We highlight some specific state examples where states provided additional information with their responses. Key finding include the following:

• Important data gaps remain, with just under half of responding states tracking COVID-19 vaccination rates among Medicaid HCBS enrollees. At the same time, state HCBS programs are playing a role in facilitating vaccine access for HCBS enrollees, with most responding states adopting multiple policies in this area. Over one-third of responding states have publicly available data on COVID-19 cases and deaths among HCBS enrollees.
• The Medicaid HCBS provider infrastructure declined during the pandemic, with two-thirds of responding states reporting a permanent closure of at least one provider. Most of these states reported permanent closures among more than one HCBS provider type. States most frequently cited workforce shortages as the pandemic’s primary impact on in-home and group home services, while closures due to social distancing measures was the most frequently reported primary impact on adult day health and supported employment programs.

The Russian Connection, Redux

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  They are also aiding our Russian adversaries.

Elizabeth Culliford at Reuters:

Facebook (FB.O) said on Tuesday it had removed a network of accounts from Russia that it linked to a marketing firm which aimed to enlist influencers to push anti-vaccine content about the COVID-19 jabs.

The social media company said it had banned accounts connected to Fazze, a subsidiary of UK-registered marketing firm AdNow, which primarily conducted its operations from Russia, for violating its policy against foreign interference. Facebook said the campaign used its platforms primarily to target audiences in India, Latin America and, to a smaller extent, the United States.

The company's investigators called the campaign a "disinformation laundromat," creating misleading articles and petitions on forums like Reddit, Medium and Change.org, and using fake accounts on platforms like Facebook and Instagram to amplify the content. Facebook said while the majority of the campaign fell flat, the crux of it appeared to be engaging with paid influencers and these posts attracted "some limited attention."

The report is here. 

Google Cloud's Autism Career Program

In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Rob Enslin at Google Cloud:

My passion for neurodiversity began 10 years ago, when I became involved with Els for Autism, an organization that works with children and adults who have autism, as well as their families. At the time, I had a friend who was struggling to find resources for his son with autism. The foundation promotes acceptance and inclusion for people on the spectrum, helping them live independently and find jobs that harness their talents and skills. The organization’s focus on autism in the workplace resonated deeply with me, due to the rich experiences I had working with individuals with autism over the course of my career.

Approximately two percent of the population has autism, but it’s estimated this number is actually quite low as many individuals go undiagnosed. Of those that have been diagnosed, only 29% have had any sort of paid work in their lives. Personally, I find this tragic, because individuals with autism can be highly-functioning and contributing professionals in any organization. Too often, though, the interview process can pose challenges due to unconscious bias from a hiring manager or interviewer, for example, if the candidate doesn’t look an interviewer in the eyes or asks for additional time to complete a test. This bias often unintentionally marginalizes great candidates and means businesses miss out on valuable talent who can contribute and enrich the workplace.

Introducing Google Cloud’s Autism Career Program

It is in that spirit that I am excited to announce the launch of Google Cloud’s Autism Career Program, designed to hire and support more talented people with autism in the rapidly growing cloud industry.

We are working with experts from the Stanford Neurodiversity Project (part of the Stanford University School of Medicine), which provides consultation services to employers to advise on opportunities and success metrics for neurodiverse individuals in the workplace.

One key pillar of our program is to train up to 500 Google Cloud managers and others who are involved in hiring processes. Our goal is to empower these Googlers to work effectively and empathetically with autistic candidates and ensure Google’s onboarding processes are accessible and equitable. Stanford will also provide coaching to applicants, as well as ongoing support for them, their teammates and managers once they join the Google Cloud team.

We’re taking this approach to break down the barriers that candidates with autism most often face. In addition to bias, there may be challenges with how interviews are structured or conducted without the right tools. For these reasons, we will offer candidates in this program reasonable accommodations like extended interview time, providing questions in advance, or conducting the interview in writing in a Google Doc rather than verbally on a call. These accommodations don’t give those candidates an unfair advantage. It’s just the opposite: They remove an unfair disadvantage so candidates have a fair and equitable chance to compete for the job.

This program is just one example of Google Cloud’s commitment to inclusion, and it is an important step forward to building a more representative team and creating value for customers and stakeholders.

Autism, COVID, and the Kindergarten Gap

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. 

Dana Goldstein and Alicia Parlapiano at NYT:

The months of closed classrooms took a toll on nearly all students, and families of all levels of income and education scrambled to help their children make up for the gaps. But the most startling declines were in neighborhoods below and just above the poverty line, where the average household income for a family of four was $35,000 or less. The drop was 28 percent larger in schools in those communities than in the rest of the country.


In the Philadelphia school district, where almost all students are from low-income families, kindergarten enrollment declined by more than a quarter between the fall of 2019 and the fall of 2020. The drop was three times the national rate, accounting for 2,700 students.

While kindergarten is optional in many states, educators say there is no great substitute for quality, in-person kindergarten. For many students, it’s their introduction to school. They are taught to cooperate and to identify numbers and letters. They learn early phonics and number sense — the concept of bigger and smaller quantities.

And kindergarten is often where children are first diagnosed with disabilities like autism spectrum disorder.

Parents: Florida Ban on Mask Mandates Violates ADA & IDEA

 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. 

Cristobal Reyes and Leslie Postal at The Orlando Sentinel:

Parents of 15 children filed a federal lawsuit Friday challenging Gov. Ron DeSantis’ ban on mask mandates in schools, which they said violates federal law and endangers students with disabilities by putting them at greater risk of contracting COVID-19.

The children represented in the lawsuit, including several from Orange and Volusia counties, have been diagnosed with conditions that could compromise their immune systems, such as autism, severe asthma and Down syndrome.

Restricting public school districts from making mask use mandatory while offering “no viable alternatives for students with disabilities” violates federal laws protecting people with disabilities, including the Americans with Disabilities Act, according to the lawsuit, which was filed in the Southern District of Florida.

“The Governor’s most recent executive order preventing school districts from putting protections in place for students ... has tied the hands of school districts from acting and made it impossible for school districts to provide students with disabilities a free appropriate public education in the least restrictive environment,” the complaint said.

As a House member in 2018, DeSantis voted for HR 620, a bill to weaken ADA. 

COVID and Social Isolation

 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. 

At Autism, Elizabeth Pellicano report on a study of Australian autistic people:

In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12–18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people’s mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.

Larry Elder and Andrew Wakefield

  In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. 

Half of COVID vaccine rejectors think that vaccines in general cause autism.  

Radio personality Larry Elder is currently the leading candidate to replace Gavin Newsom if voters recall him next month.

Last year, he used his show to give a forum to the disgraced Dr. Andrew Wakefield, whose bogus article linking vaccines and autism helped fuel the antivax movement.

Reintroducing the RISE Act

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

A release from Sen. Bob Casey (D-PA):

U.S. Senators Bob Casey (D-PA), Bill Cassidy (R-LA), Maggie Hassan (D-NH) and Todd Young (R-IN) introduced the Respond, Innovate, Succeed, and Empower (RISE) Act to help ease the transition from high school to college for students with disabilities. The legislation would amend the Higher Education Act (HEA) and clarify that students with previous documentation of a disability would be able to continue using that documentation as proof when they transition to higher education. This would help ensure students who receive special education or accommodations because of a disability do not need to spend time and money to go through unnecessary new diagnostic testing.

The RISE Act would also make school policies and data more transparent for students and families so they can make informed decisions on the college that best fits their needs. The legislation also provides additional support for technical assistance to colleges and universities to better serve students with disabilities.

“The RISE Act will help eliminate unnecessary barriers for students with disabilities and ease their transition to higher education,” Senator Casey said. “No student with a documented disability should have to jump through extra hoops or incur extra costs to access the services and support that they need to thrive. All students deserve the opportunity to realize their full potential.”

“Learning disabilities like dyslexia are lifelong conditions. It makes no sense to require families re-prove something that is a permanent part of someone’s neurobiology. This bill removes barriers to ensure college students access the resources they need to learn and thrive,” said Dr. Cassidy.

“It makes no sense that students who experience disabilities, when transitioning to higher education, must again go through the process of obtaining documentation for their accommodations,” said Senator Hassan. “This bill would help cut red tape and empower students who experience disabilities to more easily access and transition to higher education. I am glad to work with my colleagues across the aisle on this commonsense bill, and I urge the Senate to pass it.”

“All Hoosiers deserve opportunities to access higher education. Now more than ever, we should be removing barriers and allowing individuals to attain skills necessary to enter the workforce. This bill is a smart step to streamline the college enrollment process for people with disabilities, which will help equip students to advance their careers,” said Senator Young.

“Learning disabilities are real and they are lifelong. But for too long, the process for receiving accommodations has placed the burden on students and families to navigate the complex higher education system,” says Lindsay E. Jones, President & CEO of the National Center for Learning Disabilities. “We applaud these Members of Congress for their leadership on this important civil rights issue and look forward to working with Congress to make the RISE Act a reality.”

“I am about to enter my sophomore year of college and I don’t have any accommodations for my ADHD because my school is forcing me to again prove I have a disability and get an expensive evaluation despite the fact I was already diagnosed 2 years ago,” says ??Malachai Pruett, NCLD Young Adult Leadership Council member. “The RISE Act would mean that students like myself don’t have to jump through hoops to have a level playing field, and don’t have to watch our grades slip simply because we can’t afford to get re-evaluated for conditions we already know we have.”

The RISE Act is endorsed by the following organizations:

National Center for Learning Disabilities, The Advocacy Institute, AHEAD, AIM Institute for Learning and Research, American Association of People with Disabilities, Association of University Centers on Disabilities, Autistic Self Advocacy Network, Center for Learner Equity, Council of Parent Attorneys and Advocates, Council for Exceptional Children, Decoding Dyslexia Network, Education Reform Now, Eye to Eye, Higher Education Consortium for Special Education, InnovateEDU, Learning Disabilities Association of America, National Alliance on Mental Illness, National Association of Councils on Developmental Disabilities, National Association of School Psychologists, National Disability Rights Network, National Down Syndrome Congress, RespectAbility, Teacher Education Division of the Council for Exceptional Children and TeachPlus.

Read the RISE Act here.

Antiscience Aggression

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. 

Half of COVID vaccine rejectors think that vaccines in general cause autism.  

At PLOS Biology, Dr. Peter Hotez writes about the growth of antiscience aggression in the United States. It stems om far-right extremism, including members of Congress and conservative news outlets that target scientists fighting the COVID-19 pandemic.

Vaccines and vaccine scientists are also targeted. Alongside the June Republican COVID-19 origins hearings, Senator Ron Johnson (R-WI) organized a roundtable in Milwaukee to highlight the rare adverse side effects from COVID-19 vaccines [4], as evening Fox News anchors promoted fake claims regarding deaths from COVID-19 vaccinations [5]. In July, Rep. Green declared on Twitter that a COVID-19 vaccine is “a political tool used to control people”, while Rep. Madison Cawthorn (R-NC) said that door-to-door COVID-19 vaccinations were just a step away from US Government confiscations of guns and bibles, and Rep. Lauren Boebert (R-CO) referred to vaccinators as “needle Nazis”. Days later, the medical director for vaccines in the Tennessee Department of Health was abruptly terminated for her efforts to vaccinate minors (14 and up) without parental consent. These actions were concurrent with state efforts to halt vaccine advocacy and outreach to teens and adolescents, and at a time when the delta variant is accelerating [6]. As a vaccine scientist and author of a book explaining why autism, including my adult daughter’s autism, is unrelated to vaccines [7], I am also a target of antivaccine activists, including those writing menacingly about “patriots” who will seek me out. During a June 2021 interview with the staunchly conservative Florida Governor, a Fox News anchor referred to me as “infamous”, and “notorious” [8].

Special Ed During COVID

 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. 

At Autism, Sarah Hurwitz, Blaine Garman-McClaine and Kane Carlock have an article titled "Special education for students with autism during the COVID-19 pandemic: `Each day brings new challenges.'"  The lay abstract:

The novel coronavirus (COVID-19) disrupted how special educators provided supports and services for students with autism spectrum disorder. School closures and the related pivoting between learning modalities (i.e. virtual, hybrid, and face-to-face) were difficult for all students, but especially for students with autism, who rely on routine and require individualized instruction. In this study, we surveyed 106 special education teachers, behavior specialists, and speech pathologists who work with autistic students to learn about how they adapted instruction to comply with the complex social distancing rules and changing expectations of the pandemic. Participants reported “making the best out of a bad situation” and “constantly using ‘trial & error’ to find the best way for our students to eLearn.” They emphasized the importance of collaboration with parents, who helped deliver intervention and monitor progress across settings. They made alterations to Individualized Education Programs, by adding individualized contingency learning plans, adjusting service minutes, and sometimes eliminating social goals. Participants were surprised that while students with more intense needs struggled, others actually preferred virtual instruction. This raises concerns for what will happen in the future, when social expectations resume. Despite the overwhelming challenges posed by COVID-19, participants demonstrated remarkable resiliency and an innovative ability to adapt instruction.

ASD in the USAF

In The Politics of Autism, I discuss military personnel and military families.  

Tre Davis at DVIDS:

A passenger-filled sedan rolled violently against a dirt median, abruptly halted on its roof and blocked oncoming traffic on the interstate. Master Sgt. Shale Norwitz’s duty to protect and serve took precedence.

Due to this application of military training and a unique diagnosis, Norwitz safely safely extracted the occupants of the vehicle, led victims away from the wreckage, and redirected the flow of traffic.

Norwitz, an Airman of the 5th Combat Communications Group, 688th Cyberspace Wing, attributed his heroic acts to his military training and his neurodiversity.

“I’m on the [autism] spectrum and that makes me good at being a strategic thinker and contributes to my innovation,” said Norwitz. “This is the stuff that makes us great but it is something we need reinforcement on.”

Norwitz said that his neurodiversity allows him to objectively react during situations.
He said that because of his ability to remove emotion from a situation, he is able to see a clear series of targets, tasks and creative solutions whenever an issue arises.

This ability led him to learn to accept his diagnosis.

According to USAF Medical Standards Directory, Autism Spectrum Disorder (ASD) is not disqualifying for continued military service unless it is currently--or has a history of--compromising military duty or training. [The Navy is different.]

Norwitz has seen improvements in his professional development and feels empowered to reduce the negative stigmas surrounding autism.

“The final step is to accept [being autistic],” said Norwitz. “That is how we rise [from negative stereotypes]. If we can learn and educate ourselves, we can elevate to a position of acceptance.”

Vaccine Attitudes

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. 

Half of COVID vaccine rejectors think that vaccines in general cause autism.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.

Vaccinated Americans via new Monmouth poll:

92% Democrats
88% over 65 years
80% college grad
71% non-White
70% women
68% all Americans
67% White
65% men
63% under 35 years
62% no degree
59% independents
51% Republicans

— Ryan Struyk (@ryanstruyk) August 2, 2021

Excerpt: The release from Monmouth:

“I think Americans acknowledge that the CDC and other health agencies have to deal with a lot of uncertainty. Still, it is tough for the average person to understand the flip from masks being optional to being necessary again. The messaging has not been clear,” said Patrick Murray, director of the independent Monmouth University Polling Institute.

...

Just under half (48%) of Americans are at least somewhat concerned about catching one of the new coronavirus variants. Interestingly, those who have received at least one vaccine dose (57%) are somewhat more likely to be worried about catching one of the new variants than those who are unvaccinated and either ready to get the shot or are waiting a little longer to see how it goes (47%). On the other hand, extremely few (16%) of those who remain vehemently opposed to getting the vaccine have any concern about catching one of the new variants.

“Many, if not most, anti-vaxxers believe Covid is a hoax or they are unlikely to get infected. Which means there may be very little that can be done at this point to change their minds,” said Murray.

Currently, 68% report receiving at least one dose of Covid vaccine – which is in line with current CDC reports – while 2% will get it as soon as possible and 9% remain hesitant, but persuadable.

However, 17% say they remain opposed to getting the vaccine at all. Among those who admit they will not get the vaccine if they can avoid it, 70% either identify with or lean toward the Republican Party while just 6% align with the Democrats. Among those who are planning to get the vaccine or are persuadable, 45% are Republicans or lean toward that party and 40% are Democrats or Democratic leaners. Among those who have already received the vaccine, 32% fall on the Republican side of the political divide and 59% are on the Democratic side.

The 17% who are opposed to the getting vaccine look slightly lower than past results (which ranged 21% to 24%) but there is an important caveat. Another 4% of those polled did not answer this question (which is up slightly from past polls). As in prior polls, the partisan profile of this “don’t know” group looks extremely similar to the anti-vax group. The anti-vax and non-response groups together form a combined 21% of the public, which is similar to the number recorded in polls in April and June (23%).

“This could be a data blip, but it’s possible that more anti-vaxxers refuse to admit their position publicly now that leaders in their own party are pointing the finger at them for the recent surge. However, it is not clear that calling them out has moved many, if any, of them from their vehement anti-vax stance,” said Murray. He added, “On the other hand, we are starting to here anecdotal reports of some folks who were opposed to the vaccine getting it on the sly. Perhaps they are worried it will undercut their credibility in the partisan tribe if they admit it. The fact that we have to consider these possibilities is a reflection of how much our political discourse has deteriorated.”

...

The Monmouth University Poll was conducted by telephone from July 21 to 26, 2021 with 804 adults in the United States. The question results in this release have a margin of error of +/- 3.5 percentage points. The poll was conducted by the Monmouth University Polling Institute in West Long Branch, NJ.

"We're Not Broken"

In The Politics of Autism, I discuss divisions and factions within the autism community.  The last line of the book: "After decades of talking about autism as a deficit of communication, people who make and study policy should listen as autistic people speak for themselves."

Jen Malia at The Washington Post:

What surprised me most after I was diagnosed with autism spectrum disorder in my late 30s was the divisions I saw among researchers, clinicians, journalists, autistic people and caretakers in the way they talked about autism. Some sought to eradicate it, while others embraced it as an identity. Having spent my whole life unknowingly masking my autistic traits, I had to advocate for a diagnosis for me and my kids once I realized we were autistic. Much more than a diagnosis, though, autism is an integral part of my identity, and I’m raising my kids to be proud of their autistic identity, too.

Eric Garcia’s outstanding book, “We’re Not Broken: Changing the Autism Conversation,” highlights how a lack of input from autistic people “can perpetuate stigmatizing ideas about autism,” which leads to his call to include autistic people in the conversations that concern them. As an autistic mother of autistic children, I couldn’t agree more with the main argument of Garcia’s book: “Society should stop trying to cure autistic people and instead help autistic people live fulfilling lives.” In the same vein of Steve Silberman’s “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” Garcia’s book uses rich storytelling and insightful reporting to uncover not only the long history of how autistic people have been mistreated but also how they continue to be ignored.