Disability Policy in the Contemporary Congress

 In The Politics of Autism, I discuss the congressional role in the issue.

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

From the article:

Despite bipartisan support on Capitol Hill, the [Combating Autism Act of 2006] did arouse some controversy within the autism community. Self-advocates said that it focused too little on services and gave practically no attention to the needs of autistic adults.[55] They considered autism part of their identity and took offense at the notion that it was an enemy that “kidnapped” children. The Autism Self-Advocacy Network (ASAN) criticized the law’s title as “hurtful and stigmatizing,” and it launched a hashtag campaign, #StopCombatingMe. The self-advocates’ efforts had an effect: the 2014 reauthorization addressed some of their substantive concerns and gave the law a different name: the Autism Collaboration, Accountability, Research, Education, and Support Act, or the Autism CARES Act. Congressional Republicans did not complain that the title change was “politically correct.” They supported the reauthorization, which passed by voice vote in the House and unanimous consent in the Senate.[56]

The story was similar with the next reauthorization. A press release put it this way: “U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime.”[57] Donald Trump tweeted out a photo showing his Sharpie signature on the bill, saying: “Today, I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”[58] Just as he was acknowledging this achievement of the “shadow Congress,” the House was taking the first steps that would lead to his impeachment.

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Despite notable exceptions, disability politics has mainly remained in the “shadow Congress,” where calm deliberation and bipartisanship are the norm. But “bipartisan” does not always mean “good.” Even when bills go through the normal legislative process without shouting and name-calling, the results may disappoint many stakeholders.

Such disappointment spans the range of programs affecting people with disabilities – especially IDEA. At least through 2023, as noted earlier, Congress has never approved “full funding” of the law: 40 percent of the average per pupil expenditure for special education. In many places, parents complain of inadequate support for their children. For decades, lawmakers have proposed legislation to meet the funding level that the 1975 bill had promised. One obvious problem is cost. In 2021, the National Education Association estimated that the funding gap stood at about $36 billion.[84] And even meeting that mark might not be enough. Recent research suggests that the distribution of federal special education funds has become more inequitable across states.[85] Accordingly, Congress would need to consider funding formulas, not just aggregate spending.

 

Sentencing of Antivaxxer Insurrectionist

 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.

The anti-vax movement has a great deal of overlap with MAGA, QAnon, and old-school conspiracy theory.  

So it should not be a surprise that antivaxxers took part in the January 6 insurrection at the Capitol.

Jeremy Roebuck at The Philadelphia Inquirer:

A prominent right-wing and anti-vaccine activist from South Jersey will serve 10 days behind bars for her role in some of the most brutal fighting during the Jan. 6, 2021, attack on the U.S. Capitol.

Federal prosecutors likened Stephanie Hazelton, 51, of Medford — who also goes by the moniker Ayla Wolf — to “a commander on the battlefield” as she marshaled rioters toward the tunnel entrance to the Capitol’s west side.

“This is the battle,” she shouted in videos of the melee later posted online. “Let’s go! Move forward! They cannot stop us all!”

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Hazelton — the founder of New Jersey for Medical Freedom, the state chapter of an anti-vaccine network — rose to local prominence organizing demonstrations against proposed legislation in the Garden State, including a bill that would have required school children to get the flu shot.

In 2020, she led members of the group who draped signs over New Jersey highway overpasses that read: “COVID-19 vaccine manufacturers are exempt from liability.” And as the public face for “Reopen New Jersey,” she led rallies that spring that made national headlines.

Autistic People Decry Speculation about DeSantis

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

Michael Schaefer at Politico:

[Democratic Pennsylvania State Rep. Jessica Benham] recently found herself in the somewhat surprising position of pushing back against an emerging line of attack against DeSantis, something that’s been trotted out by supporters of Donald Trump: The attempt to draw attention to DeSantis’ awkward public presence by claiming that the GOP presidential hopeful is “a little bit on the spectrum,” as Trump hatchet man Steve Bannon first put it last week.

It’s not that Benham thinks such a diagnosis would be disqualifying. Rather, she’s troubled by the act of armchair diagnosis as a way of knocking someone. The implication is that the status of being on the spectrum is problematic or shameful or bad — and, at any rate, something intentionally kept secret.

“It’s frankly none of our business until he tells us one way or the other,” she tells me. “But if you want to delegitimize someone as a politician, certainly leaning into those stereotypes that people have about autistic folks is one way to do it. And that’s what’s happening here.”

No kidding. In short order, Bannon’s comment, which used the pseudo-diagnosis to explain DeSantis’ disastrous Twitter campaign rollout alongside Elon Musk, was echoed across the MAGA ecosystem. “Ron DeSantis is 100% on the spectrum,” tweeted the pro-Trump activist Laura Loomer. “Can we finally talk about this?” Grace Chong, the CFO of Bannon’s War Room podcast, called him “DeSpectrum” in one tweet, and in another one contrasted him unfavorably with the former president: “Trump does it BIGGER, BETTER, and with HEART. Unlike that guy on the spectrum.”

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 “God give me strength,” says Eric Garcia, Washington correspondent for the Independent and author of the 2021 book We’re Not Broken: Changing the Autism Conversation. “It’s really fucking disgusting what Steve Bannon is doing.” Garcia says his group chat with fellow autistic writers lit up on the Bannon news. The refrain: “Are we really going to have to spend 18 months on this?”

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 “I’m pretty good at working a room,” says Benham, the Pennsylvania legislator. “Because working a room follows a set of rules and social norms that you can learn. But there are plenty of my colleagues who are not good at that and who are not autistic. … Maybe they’re just introverted.”

Outcome Standards

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Jamie Pagliaro at Health Affairs:

For children with autism, there are several competing forces at play that could potentially impact their futures. In an effort to help these children lead the most productive and successful lives, legislation mandating coverage of applied behavior analysis (ABA)—the current gold standard of treatment for autism—is making this valuable treatment accessible to all.

ABA is a systematic approach to teaching new skills such as communication, social interaction, and pre-academic and daily life skills, and reducing behaviors that may interfere with learning or present danger, using behavioral principles such as positive reinforcement. But the rapid explosion in demand for ABA and infusion of private equity into the industry raises concerns about the limited number of providers and the quality of services they deliver. In 2021, more than 50 private-equity firms held or previously held a majority stake in an autism service platform. And there are questions about how to transition from today's fee-for-service model to one focusing on patient-centered care, which is key to making quality a top priority, even in the face of economic pressures.

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Getting lost in the fray is how providers can ensure patients achieve the best clinical outcomes. By changing the focus, the industry has the opportunity to set the stage for value-based care arrangements. This approach is one in which funding is based on outcome rather than the traditional fee-for-service model, which is the current payment structure for ABA with most health plans. However, even if the industry can agree on changing the focus, a critical component is still missing.

 The current void relates to generally accepted methods of measuring or predicting outcomes for individuals with autism receiving ABA treatment and standards for determining treatment dosages.

Transition in Norway

  In The Politics of Autism, I discuss international perspectives.

From Eric Benninghoff:

For the past year I have traveled throughout Norway, exploring the transition to adulthood for a variety of often-marginalized groups, including people with intellectual disabilities or learning challenges. Along the way, I have met several organizations aiming to improve the situation for this population, including a largely government-funded but privately run group called Helt Med.

Helt Med has developed a work inclusion model across Norway to help employ individuals with intellectual disabilities in the mainstream workforce. More recently, they have also been trying to expand a smaller pilot program called Ung Jobb, which aims to create a smooth school-to-career pipeline for some of these students.

As of spring 2023, only about 40 high school students have gone through the Ung Jobb program, which is primarily in Agder County in southern Norway. But Agder government announced it will be tripling its current investment in the program starting in the 2023-2024 school year. This comes as Helt Med aims to expand the Ung Jobb project to other parts of the country.

This video report takes an in-depth look at Helt Med’s school-to-career program in Agder County, exploring its potential as one solution to better support students with intellectual disabilities in their transition from school to working life in Norway.

 

AI Chatbots and Autistic People

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

Amanda Hoover and Samantha Spengler at Wired:

Autism affects people in many different ways and individuals can have varying needs. ChatGPT may not work for some or even most, but a common feature of autism is that social interactions can be difficult or confusing.

Using a chatbot to help with communication may seem unconventional, but it’s in line with some established ideas used in social work to help people become more independent. “We talk about empowering people and helping people to be fully autonomous and experience success on their own terms,” says Lauri Goldkind, a professor in Fordham University’s Graduate School of Social Service who focuses on the marriage of social work and technology. An accessible tool like a generative AI bot can often help bridge the gap left by intermittent access to mental health services like therapy, Goldkind says.

But the true impact of ChatGPT for therapeutic reasons is largely unknown. It’s too new—WIRED reached out to four clinical therapists and counselors for input. Each of them declined to comment, saying that they have yet to explore the use of ChatGPT as a therapeutic tool or encounter it in their sessions.

But ChatGPT still does not reason very well.  I asked it why Senator Rick Santorum sponsored the Combating Autism Act of 2006.  Among the reasons that it cited: " Santorum has a child with a developmental disability. His daughter, Bella, was born with Trisomy 18, a rare genetic condition that causes severe developmental delays. This personal experience likely influenced his interest in issues related to disabilities and special needs, including autism."  But Bella Santorum was born in 2008, two years after the bill passed.

Abusing VAERS

 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 measles and COVID-19.

A release from the Annenberg Public Policy Center:

The federal health system for reporting “adverse events” after vaccination, known as VAERS, is designed to assist in the early detection of complications and responsive action. But when the pandemic and advent of new vaccines for Covid-19 turned a spotlight on this formerly little-known system, the flood of web and social media references to it was accompanied by confusion about what the system is and what the reports in it signify.

A new report from the Annenberg Public Policy Center examines misconceptions about the government’s Vaccine Adverse Event Reporting System, or VAERS. The report urges the government agencies that manage the system to change its name to a clearer alternative such as “Vaccination Safety Monitor” or “Vaccination Safety Watch,” and make additional changes to reduce the likelihood its information will be misinterpreted or misused.

From the report:

Since the inception of VAERS in 1990 (CDC, n.d., About VAERS), its data have been mistakenly cited to suggest that the recording of an event in VAERS confirms that it was vaccine-caused. Long before COVID-19 was added to our working vocabularies, people falsely alleging that the MMR vaccine causes autism were backing that bogus claim with mischaracterized VAERS event report data.

Such problematic uses persist. So, for example, on June 18, 2021, lawyer, author, and anti-vaccine activist Robert F. Kennedy, Jr., tweeted, “Latest numbers from CDC VAERS is in… Data for 12- to 17-year-olds include 7 deaths + 271 serious adverse events following COVID vaccine” (Kennedy, 2021). The mental representation invited by that text: COVID-19 vaccination is endangering teens. 

Survey: Employers Underestimate Disability Among Employees

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

From Boston Consulting Group:

Most organizations report that their workforce includes relatively few employees with disabilities: just 4% to 7% on average.1 But in our survey of nearly 28,000 employees in 16 countries, some 25% of people said they have a disability or health condition that limits a major life activity.

We are not the only ones finding a higher prevalence of disabilities among the workforce. Our survey’s self-identification rate falls within the range of prevalence rates for workers with disabilities or health conditions across several countries: approximately 13% to 30%.

The disparity between the prevalence rates that employers report and the self-identification rates that employees shared with us reveals three troubling workplace realities:

• Employees with disabilities significantly underdisclose to their employers, perhaps fearing stigma or a negative impact on their job security or promotion prospects.
• Employers are missing a large-scale opportunity to enable a quarter of their workforce to bring their full selves to work.
• And employers making decisions and investments regarding their workforce are relying on inaccurate information. If management doesn’t understand the true number of people with disabilities (PwD), it’s hard to make a case for developing tailored support systems that could have significant benefits.

GHOST

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Parents of aging autistic people often say "I can't die."  But they do.

What happens when autistic people have needs that outlive their parents? Susann Senator at Psychology Today:

Clearly, there are problems with the Mom-as-ghost approach; I understand that this is not actually an option. And yet, by paying attention to that terrible longing I have to float over Nat and guard him forever, I came up with an idea that actually has legs. I called my new idea G.H.O.S.T., "Group Home Oversight and Support Team," with the idea that members of the disability community would help out with oversight of each others' disabled loved ones by spending a little time with them.

The GHOST concept soon evolved into "General Help, Outreach, and Support Team" because that name can encompass far more people than those in group homes. Rather than just being about those living in group homes, GHOST could focus on caregivers and family members helping each other out in general but especially when it comes to spending a little time with the disabled loved one.

What is GHOST and how would it work?

It didn't take long for my idea to gain support. In particular, Cheryl Ryan Chan, a good friend and a huge community advocate proposed that GHOST become a subgroup within the Community Builders of Massachusetts TimeBank, which she is still in the process of organizing and launching. In Community Builders Time Bank groups, which exist nationwide, members “bank” time by performing tasks for other members, who would then “repay” this by contributing time and tasks of their own to the bank. For example, Jane visits Andrew in his group home and shares a snack with him. Or Jane goes to the group home to help Andrew with a clothing inventory. This means that now Andrew's family member would now have to donate the same amount of time or more to a member of the GHOST Community. GHOST members donate only what they are comfortable with, but the time they give determines the time they get. Some GHOST members might donate time in other ways in order to get another pair of eyes on their loved one, like looking after a sibling or cutting the grass of a time bank member. In other words, members commit time to gain time. If “it takes a village,” then GHOST would provide that village for families.

GOP Keeps Going Antivax

 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 measles and COVID-19.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

Virginia Kruta at the Daily Wire:

Florida Governor Ron DeSantis responded Thursday to Robert F. Kennedy Jr.’s claim that he had advocated burning the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) “to the ground,” and he didn’t back down an inch.

DeSantis, who officially announced his candidacy for the 2024 Republican presidential nomination on Wednesday, made it clear that complete destruction of those particular institutions might be going too easy on them.

“There was a report that — I had spoken with Bobby Kennedy Jr., and he had said that ‘the governor said that you know, that we need to burn to the ground the CDC’ and all these things,” DeSantis began.

“And I just want to be very clear, full disclosure,” DeSantis continued. “I was not that kind to CDC and NIH and any of those [agencies]. Just for the record, just so your viewers don’t think I’m going soft, but I can’t think of a more catastrophic response than how this country responded to COVID, particularly at the federal level.”

Tim Dickinson at Rolling Stone:

Arizona Republicans are hosting a two-day, QAnon-inflected, anti-vaccine circus at the statehouse — focused on supposed “atrocities” committed by public health officials in response to the Covid-19 pandemic.

The hearings, which began this morning, are organized by a new state Senate body, the Novel Coronavirus South Western Intergovernmental Committee. The committee’s chosen acronym — NCSWIC, which has been plastered on posters promoting the hearings — offers unusual cross-branding. It shares the abbreviation of an infamous QAnon catchphrase, “Nothing Can Stop What Is Coming.”

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Other “sponsors” of the proceedings include Robert F. Kennedy’s anti-vax nonprofit Children’s Health Defense, and a little-known group calling itself 1,000 Widows, which seeks testimonies from families of Covid victims. “Whistleblowers who know the truth about what really happened to our loved ones at the hands of the hospitals carry the greatest responsibility than anyone on earth,” says a statement on its website.

 

Pop Culture and Stereotypes

In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is stereotyping of autistic people.

 Claire Kenny at Ms.:

How do people without knowledge of autism normally picture an autistic person? Perhaps, as Dr. Devon Price said, “a white man with a monotone voice, rude demeanor and a penchant for science.” Price, a social psychologist, professor and trans author on the autism spectrum, lists in his book Unmasking Autism (2022) more stereotypical examples of autism in pop culture: Shaun Murphy from The Good Doctor, Sheldon from The Big Bang Theory and Rick from Rick and Morty. In other words, he writes, some variation of “white boys who love trains.”

But autism can take many forms, and often presents differently in girls and boys.

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Women and girls on the spectrum have continuously been more under- or misdiagnosed with autism than boys, and on average receive diagnoses later in life than boys and men do. The National Library of Medicine (NLM) notes that the ratio of autistic boys and men to autistic girls and women is generally considered 4:1, yet NLM researcher Robert McCrossin suggests this statistic might be inaccurate due to sexist bias.

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Studies on autistic adults have found that women mask their autism more than men do, which could explain why they often fly under the radar. The cause may relate to sexist social expectations for women and discrimination from patriarchal medical systems.

Cultural Adaptation

In The Politics of Autism, I note that siagnosis depends on observation of behavior.  There are multiple problems with this approach, including cultural differences.

At the University of Virginia, Michaela DuBay, an assistant professor and speech-language pathologist, explains the difference between translation and cultural adaptation:

A standard translation is just a linguistic adaptation. You’re just trying to take the words and put them into a new code, if you will. But when you’re talking about switching languages, the vast majority of the time, you’re talking about switching cultures as well. And the way that you understand concepts from one culture to another can be completely different.

I was translating an autism assessment questionnaire that included the question, “When you clap your hands, shake your head, or stick out your tongue, does your child imitate you?”

We would ask families this question, and they would get really uncomfortable. And they would say, “No, my child would never stick out their tongue. I would never teach them that.” Because that particular gesture is viewed as completely inappropriate in some cultures. So if you translate that directly, parents interpret it as asking about polite behaviors rather than imitation skills.

White Evangelicals and Vaccines

 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.

Anna Beahm at Reckon:

White evangelicals are the demographic group least likely to support vaccine requirements for children to attend public schools, according to new data from Pew Research Center.

The share of white evangelicals who are in favor of vaccines for public school attendance has dropped to 58%, down from 77% who said the same in 2019, Pew’s data shows.

The COVID-19 vaccine prompted an increase in parents claiming religious exemptions for vaccines, as both state vaccine data and opinions expressed in the Pew surveys show. The data didn’t surprise the Rev. Rob Schenck, a pastor who has written about the dangers of mixing politics and religion and has also written multiple articles about what Christian theology says about vaccines and vaccine mandates. He said he believes there is no theological basis for refusing vaccines.

“There’s an assumption among many evangelicals that science and medicine have discounted the reality of the supernatural, so why trust it? If we serve only one master, one Lord, then whenever the government starts getting into your personal business, they’re trying to be God.”

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There are also legal implications on the topic. An article written by Mark E. Wojcik Professor of Law, University of Illinois Chicago School of Law published by the American Bar Association reflects many of Schenck’s views on the issue.

One prominent pastor has even said that autism is demonic possession.