Closures and Waiting Lists

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

 Dan Goldberg at Politico:

Private agencies that provide services for the intellectually and developmentally disabled have long warned that, without fresh state and federal funding, they would be unable to provide housing and staff support to the growing number of Americans who need care.

Over the last 12 months, the Covid-19 pandemic’s lingering effects and once-in-a-generation inflation have turned dire predictions into sobering truths, and agency directors, who for years hobbled along on shoestring budgets, have done in 2022 what not long ago would have been unthinkable: closed their doors.

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Across the country, more than three-quarters of providers said they’ve turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

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Most agencies rely on state and federal Medicaid money to pay employees and can’t increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that’s always been a challenge, it’s exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

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Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

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Most states were helped by last year’s American Rescue Plan, which temporarily boosted federal matching funds for home- and community-based services. Many providers used the bump to supplement wages or offer pandemic signing bonuses, but that money was never intended to be a permanent fix.

“We’ve offered bonuses, but [employees] know that’s not permanent,” Wilush said. “When Target goes to $24 an hour, it’s really hard to compete with that.”

The Biden administration sought to shore up those programs, proposing $400 billion in new money for home- and community-based services in the Democrats’ social spending package. House Democrats put about $150 billion in their version that passed last year — but it was not included in the reconciliation package that the Senate passed this week, meaning it is unlikely providers will see new money any time soon.

Rep. Maloney Regrets Antivax Past

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

In the past, Rep. Carolyn Maloney embraced that notion, though she later changed her position.

Daniel Marans at Huff Post:

Rep. Carolyn Maloney (D-N.Y.), who is locked in a contentious primary in Manhattan, expressed “regret” for voicing concerns in the past about the potential health effects of childhood vaccines.

In a heated interview on Gotham Gazette reporter Ben Max’s podcast that came out on Monday, Maloney initially defended her record by pointing to her work helping fund COVID-19 vaccine distribution.

“I am vaccinated. My children are vaccinated,” Maloney said. “I have brought millions of vaccines ― over $5 billion ― to the city of New York to support the establishment of vaccines. And I would say that my record is a good one in supporting vaccines.”

But when pressed on her statements about a supposed link between vaccines and autism, as well as legislation she introduced years ago to study the health effects of vaccines, Maloney said she wished she had never said anything to question vaccine safety.

“I regret any statement I ever made asking a question about vaccines,” she said. “There were two bills that I co-sponsored that studied them. I regret asking to study vaccines.”

When asked if Maloney’s campaign wanted to offer any clarification, a campaign spokesperson said her remarks were consistent with what she has said in the past.

The comments nonetheless appear to mark the first time that Maloney has expressed regret of any kind about her past dabbling in vaccine skepticism, and her associations with prominent vaccine skeptics.

Improved College Access in Massachuetts

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

A July 28 release from Massachusetts Advocates for Children:

Thank you for your advocacy, your voices were heard! After almost a decade of advocacy, Governor Baker signed the higher education bill which provides inclusive educational opportunities for individuals with Intellectual Disabilities and Autism at state colleges and universities. Young adults with disabilities can now be lifelong learners with their peers!

Many thanks to Gov. Baker, Senate Ways and Means Chair Rodrigues, House Ways and Means Chair Michlewitz, Senate President Spilka, Speaker Mariano, lead sponsors Representative Garballey and Senator Lovely, Joint Committee on Higher Education Co-Chairs Senator Gobi and Representative Rogers, and many other important lawmakers.

This law includes provisions that remove barriers precluding persons with Intellectual Disabilities (ID) and Autism from participating in state colleges and universities. Individuals with ID and autism who cannot pass MCAS [Massachusetts Comprehensive Assessment System] and who do not obtain a regular high school diploma can participate as non-matriculating students in courses with their nondisabled peers and participate in extracurricular activities and other aspects of campus life, with supports and services necessary to facilitate inclusion.

The law also ensures state colleges and universities establish guidelines governing selection of individuals with ID and Autism as well as course selection. Supports and services to facilitate inclusion can be provided by the local school district, the Massachusetts Rehabilitation Commission, Department of Developmental Services, or private funding. The law also codifies the MAICEI grant program and allows the special education IEP Team to consider higher education as an option for students with disabilities.

Download the entire document here

View the new law here

Psychiatry Training

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.  Sometimes medical professionals lack sufficient training in ASD.

 Natasha Marrus and colleagues have an article at Autism titled "Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities."  The abstract:

Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/ intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/ intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.

From the article:

Notably, literature from other countries demonstrates that insufficient training of psychiatrists in the care of patients with ASD/ID is a global concern, particularly given a pervasive shortage of psychiatrists, with many low-income and middle-income countries having one psychiatrist for every 200,000 people (World Health Organization [WHO], 2013). Recent reviews of training standards in ID for psychiatrists in the European Union (Dias et al., 2020) and overall psychiatry training in Asia (Isaac et al., 2018) have identified multiple training deficits, including wide variance in the rigor and availability of training, with no required ID training in some countries, a lack of unified minimum training standards, a mismatch between the prevalence of a condition and the amount of training, and limited trainee supervision. These disparities were noted to compromise the quality of psychiatric care by contributing to inconsistent and fragmentary treatment across the lifespan. In countries throughout North America, Europe, and Asia, as well as Australia, training deficits have been corroborated by psychiatrists themselves (Edwards et al., 2007; Kaushal et al., 2018; Lunsky et al., 2007; Sajith et al., 2019; Werner et al., 2013), and systemlevel challenges entailing early identification of these patients and the availability of educational resources have also been reported in Brazil and South Africa (Adnams, 2010; Bordini et al., 2015).

 

Underserved Communities and Autism

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. 

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:

“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

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In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.

DOD Extends Tricare Autism Program

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Patricia Kime at Military.com:

The Defense Department will extend its program meant to help provide care for military dependents diagnosed with an autism spectrum disorder through 2028 to evaluate its effectiveness, the agency announced Thursday.

In a Federal Register notice, DoD officials said research at the University of Rochester, as well as a newly required review by the National Academies of Sciences, Engineering, and Medicine, need additional time, and they have decided to extend the program past its current Dec. 31, 2023, sunset date to support the studies.

The program, formally known as Tricare Comprehensive Autism Care Demonstration, was started in 2014.

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In March 2021, the program underwent significant changes, with the DoD combining several benefits under one umbrella and broadening services beyond ABA. Under the revised program, Tricare began covering group treatment for autism, if deemed appropriate, and families were assigned a care coordinator to develop care plans and coordinate therapy and treatment.

From its inception, the demonstration project has drawn both support and criticism, with proponents pressing for broad access to early, intense intervention they say contributes significantly to improved quality of life for patients and their families, and the DoD raising concerns about the effectiveness of ABA therapy.

A 2020 DoD report to Congress noted that the current demonstration project "and the delivery of ABA services, is not working for most Tricare beneficiaries."

But a year later, the 2021 report found that 57% of participants in the program made "statistically significant improvements," while 43% showed no improvement or worsening symptoms.

Alex Jones Is An Antivaxxer

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.  

 AJ McDougall at The Daily Beast:

Jones went so far as to take potshots at the families from afar, calling them “pawns” in an episode of his Infowars show that aired Tuesday, according to Media Matters for America. He claimed that Heslin was autistic, saying he thought the father was acting “like somebody on the spectrum.”

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 Someone in the courtroom—it was unclear from the video feed—then brought up Jones’ claim that Heslin was autistic. “Hey, I think I’m autistic too, buddy,” Jones called at the plaintiffs as they filed out of the courtroom.

Five years ago, Julia Belluz wrote at Vox:

Jones has said Oprah Winfrey is trying to reduce the African population by half, that Sesame Street’s new autistic Muppet was designed to normalize an increasingly common disease that’s caused by vaccines, and that the Atlantic and other lefty periodicals are hinting at an imminent decapitation of President Trump.

In this world, Andrew Wakefield, the discredited doctor who falsified data to suggest vaccines are linked to autism, is a “pioneer” and “trailblazer” who just wants to help keep people healthy

. 

Maloney Takes Hits for Her Antivax Past

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

In the past, Rep. Carolyn Maloney embraced that notion, though she later changed her position.

Alex Maroño Porto at West Side Rag:

The generational strife at the heart of the Democratic primary race for New York’s 12th district congressional seat (which includes the Upper West Side) resonated throughout Tuesday night’s candidate debate.

On the one hand, Democratic Reps. Carolyn Maloney and Jerry Nadler, both elected to Congress in 1992 and reelected every two years since, tried to defend their records and praise the benefits of congressional seniority. On the other hand, challenger Suraj Patel, a 38-year-old with no previous legislative experience, called for a renewal of leadership.

“It’s 2022. It’s time to turn the page on 1992,” Patel said in his opening statement, echoing the issue he’s made the heart of his campaign.

During the 90-minute debate, each of the three Democratic candidates tried to convince voters in the newly-created district, the first in more than fifty years to combine Manhattan’s Upper West and the Upper East sides, to support their platform in the August 23 primary. Issues ranged from how to deal with rising inflation, to bail reform, to the efficacy of vaccines.

As he has throughout the campaign, Patel depicted Maloney as “committedly anti-vaxxer,” citing her co-sponsorship of a 2015 Republican-led bill to study the risk of autism between the vaccinated and the unvaccinated population.

“I support vaccines,” Maloney shot back when challenged again by Patel. “I support the science behind vaccines,” Maloney said, citing a variety of actions she said she had taken to promote vaccines.

Worldwide Antivax Movement

 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.

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.

Dr. Peter Hotez in Nature:

Many countries now face declining immunization rates as a result of anti-vaccine activism1. In the case of the USA, an anti-vaccine movement that began with false assertions linking vaccines to autism accelerated roughly a decade ago in Texas (where I live and work) around a libertarian framework known as health freedom2. At present, many conservative elected leaders in the US House of Representatives actively promote this health freedom anti-vaccine agenda, as do several US senators, sitting governors and federal judges3. Far-right extremist groups such as the Proud Boys march at anti-vaccine rallies.

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US anti-vaccine activism under the banner of health freedom (also referred to as medical freedom) has produced tragic and even deadly consequences. The loss of life has been massive. Since 1 May 2021, when President Biden’s administration announced that COVID-19 vaccines would become widely and freely available, at least 200,000 unvaccinated Americans have lost their lives potentially needlessly because they refused to have a COVID immunization. Analyses from Charles Gaba and organizations such as the Kaiser Family Foundation and the New York Times have shown that those COVID-19 deaths or low vaccination rates occurred overwhelmingly along a partisan divide and in Republican-majority states, with the highest death rates among US counties that voted heavily for the 2020 re-election of President Trump. A new phrase known as ‘red COVID’ has been invoked to report on this strong partisan divide in vaccine acceptance.

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Antivax Movement Morphs

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.  

 Sheera Frenkel at NYT:

Nearly half of Americans oppose masking and a similar share is against vaccine mandates for schoolchildren, polls show. But what is obscured in those numbers is the intensity with which some parents have embraced these views. While they once described themselves as Republicans or Democrats, they now identify as independents who plan to vote based solely on vaccine policies.

Their transformation injects an unpredictable element into November’s midterm elections. Fueled by a sense of righteousness after Covid vaccine and mask mandates ended, many of these parents have become increasingly dogmatic, convinced that unless they act, new mandates will be passed after the midterms.

To back up their beliefs, some have organized rallies and disrupted local school board meetings. Others are raising money for anti-mask and anti-vaccine candidates like J.D. Vance, the Republican nominee for Senate in Ohio; Reinette Senum, an independent running for governor in California; and Rob Astorino, a Republican gubernatorial candidate in New York.

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Renée DiResta, a research manager at the Stanford Internet Observatory who has studied anti-vaccine activism, said the movement had indoctrinated parents into feeling “like they are part of their community, and that community supports specific candidates or policies.”

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Activists posted statistics about Covid vaccines in those Facebook groups. Often that information came from the Vaccine Adverse Event Reporting System, a database maintained by the C.D.C. and the Food and Drug Administration, which allows anyone to submit data. The C.D.C. has warned that the database “cannot prove that a vaccine caused a problem.”

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Another post titled “If you want to really know what is going on, read this” linked to an article that falsely claimed vaccines could leave children sterile. The article was originally posted to a Facebook group named Children’s Health Defense, which supports an organization founded and chaired by the anti-vaccine activist Robert F. Kennedy Jr.

That tipped some parents into repudiating every vaccine, from chickenpox to hepatitis, and against vaccine mandates of any kind. A right to self-determination so that parents could decide what vaccines their children took was paramount.

Unanticipated Consequences: Insurance, Private Equity, and ABA

The Politics of Autism includes an extensive discussion of autism service providers.  Since the book's publication, a big change has consisted of a massive increase in private equity investments.

The law of unanticipated consequences is at work.

Erica Fry at Fortune:.

[State-mandated nsurance coverage] has revolutionized access to autism services in America, making early intervention affordable for families. The shift, reflected in a recent CDC-led analysis, is striking: Per-child spending by employer-sponsored health insurance plans on young children with ASD increased 51% between 2011 and 2017 (over the same period, spending increased just 8% for kids with no ASD diagnosis). Annual per-child spending on intensive behavioral therapy, i.e. ABA, increased 376% in that period, from $1,746 per child to $8,317 per child; for 14.4% of kids with ASD, spending on that therapy in 2017 exceeded $20,000.bers suggest, insurance reform turned ABA into a big business. The mandates unleashed a gold rush, with large investors working to consolidate the fragmented provider landscape and build up regional platform companies specializing in the expensive, time-consuming therapy. “It’s like vultures now,” says Michi Medley, an Oklahoma-based family advocate and autism professional. “All these companies are coming in, and there’s so many of them, families don’t know who’s who.”

Between 2012 and 2021, the Braff Group, a health care M&A Advisory firm, identified 223 deals done in this sector. Nearly 90% of transactions over the past five years have involved private equity, according to the firm’s proprietary analysis; what Braff calls the most “frenzied” period, from 2017 to 2019, was characterized by PE firms buying up ABA providers at 10 to 15 times their annual profits: Big names like Blackstone, KKR, TPG, and Cerberus have all made investments in the space. One of the Braff Group publications compared investor enthusiasm for autism services to that of “fan boys to the latest Star Wars release.”

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Lorri Unumb, the parent advocate who now serves as CEO of the Council of Autism Service Providers (CASP), remembers being dumbfounded when an industry investor boasted that his company hired a supervising therapist for every 40-50 patients (10-15 is the industry standard). Having been so involved in the advocacy that created the industry’s funding stream, Unumb now feels responsible to ensure quality in the industry. “These kids don’t get a do over,” she says. “You can’t just put a shoddy program out there and waste these children’s most important window to change the trajectory of their lives.”

Another urgent question is whether the autism-therapy workforce is trained and equipped to deliver effective care. The ABA industry heavily relies on two categories of workers: Board Certified Behavior Analysts (BCBAs)—the graduate level professionals who design and oversee a child’s ABA program—and Registered Behavior Technicians (RBTs), the industry workhorses who implement the therapy and work with autistic children many hours a day. RBTs, who are sometimes called ABA therapists, get 40 hours of training for the job, and are supposed to be supervised for 5% of their hours.

In general, the workforce is very young and inexperienced. As of July 2022, there were 57,000 BCBAs in the country, up from 20,000 in 2015, along with 120,000 RBTs, all of whom have been certified since 2014 when a professional certification program was created.

The varied readiness and competence of this workforce worries Erick Dubuque, director of the Autism Commission on Quality, a non-profit accreditation body for organizations offering ABA services. “We have a real serious issue with our training programs,” he told me, explaining that many programs get away with offering the “bare minimum,” despite the vulnerability of the population workers will be serving, because of high demand in the field. In a 2020 study, Dubuque and colleagues identified more than 20,000 additional providers that claim a BCBA credential but don’t actually have one. Individuals who work in the field and spoke with Fortune shared concerns about feeling ill-equipped for the job, which sometimes involves managing difficult situations where they might be kicked, hit, or bitten by a combative child. Others commented on a lack of professionalism among their colleagues, sharing stories in which therapists made fun of their clients’ autistic behaviors.

 

Dingell and Fitzpatrick Co-Chair Bipartisan Disabilities Caucus

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

A July 26 release from Rep. Debbie Dingell (D-MI):

Today, founder and co-chair of the Bipartisan Disabilities Caucus (BDC), Rep. Jim Langevin (D-RI-02), named Rep. Debbie Dingell (D-MI-12) a new co-chair of the BDC, alongside Brian Fitzpatrick (R-PA-01). The announcement comes on the 32nd anniversary of the Americans with Disabilities Act.

Rep. Langevin, the first quadriplegic ever elected to Congress, founded the Caucus in 2001 shortly after being elected to the House of Representatives. For over 20 years, the Bipartisan Disabilities Caucus has served as a space to inform, educate, and raise awareness in Congress on the many issues that affect people with disabilities. Boasting more than 50 members, the Caucus has helped Congressmen and women on both sides of the aisle find common ground in pursuit of moving the needle on disability issues.

“It is an honor to be named a co-chair of the Bipartisan Disabilities Caucus, and I thank my friend and colleague Rep. Langevin for the opportunity to continue to build on his efforts to promote equality and remove barriers for Americans with disabilities. Rep. Langevin has made monumental progress advancing disability rights and bringing attention to these issues with graciousness and candor, and his leadership in Congress will be missed,” said Rep. Dingell. “Living with my husband who experienced mobility problems later in his life gave me a better understanding of just how far we still must go to ensure Americans with disabilities have access to the same experiences and opportunities as everyone else. I look forward to working with the Caucus to advance policies that promote equity and address barriers to inclusion in years ahead.”

“22 years ago, I founded the Bipartisan Disabilities Caucus to raise awareness among members of Congress in both parties about the challenges facing Americans with disabilities. Since then, our caucus has brought Republicans and Democrats together to deliver countless wins for the disability community,” said Rep. Jim Langevin, founder of the Bipartisan Disabilities Caucus. “As my tenure in Congress begins to wind down, I am so proud to welcome Representatives Debbie Dingell and Brian Fitzpatrick as my two, new co-chairs of the Bipartisan Disabilities Caucus. I know that they share my fierce commitment to creating a society that is fully inclusive and accessible for all Americans, and I am confident that the Caucus will be in strong, capable hands after I am no longer in Congress.”

“I am honored to be the new co-chair of the Bipartisan Disabilities Caucus and I look forward to working across the aisle to help the 61 million Americans living with a disability,” said Rep. Fitzpatrick. “During my time in Congress, I have been committed and will remain committed to ensuring those living with a disability have the access and coverage they not only need but deserve. As we celebrate the 32nd Anniversary of the ADA, we must recognize that there is more we can do to address the challenges that our disabled community is facing.”

“A sincere thanks to all the advocates and the members of Congress, including Speaker Pelosi and Leader Hoyer, and members of the Disability Caucus, led by Congressman Langevin. Jim, thank you for your 22 years of service in Congress. And I know Reps. Debbie Dingell and Brian Fitzpatrick will follow your tremendous leadership in the Caucus,” President Joseph R. Biden Jr. said in his pre-recorded remarks. “We know there’s more that needs to be done, and I’m committed getting more done with you… Together, let’s keep fulfilling ADA’s promise: building a nation that truly is for all of us.”

“It was my privilege to join the Bipartisan Disabilities Caucus to celebrate the 32nd anniversary of the Americans with Disabilities Act – a transformative legislative achievement and a pillar of civil rights,” Speaker Nancy Pelosi said. “Guided by Rep. Jim Langevin, the Congress’s support for the disability community has remained bipartisan and steadfast. Twelve years ago today, Rep. Langevin made history presiding over the House, making clear that every American deserves an equal voice in our society. Now, as he prepares for his next chapter, the Congress will proudly carry on his fight for justice – drawing strength from the leadership of Rep. Debbie Dingell and Rep. Brian Fitzpatrick, two devoted advocates for America’s disability community.”

“Without the ADA, I would not be in Congress. Today is a day to celebrate the tremendous progress that we’ve made for Americans with disabilities, while also recognizing how much further we have to go until all people with disabilities can enjoy fulfilling, independent lives,” Langevin continued. “Although this will be my last ADA anniversary celebration as a member of Congress, you can count on me to continue fighting for the disability community until my last day in office, and beyond. I want to thank President Biden, Speaker Pelosi, Leader Hoyer, Senator Casey, Representatives Dingell and Fitzpatrick, Undersecretary of Transportation Monje, and Jim Brett and for joining me tonight in commemoration of such a special day.”

Reps. Langevin, Dingell, and Fitzpatrick were joined for a celebration of the 32nd anniversary of the Americans with Disabilities Act by Majority Leader Steny Hoyer, Senator Bob Casey, White House Domestic Policy Council Disability Policy Director, Day Al-Mohamed, former Senator Tom Harkin, and Vice-Chair of the National Council on Disability, Jim Brett.

Autism and Inequality: International Perspectives

In The Politics of Autism, I discuss international perspectives.

Rosa A. Hoekstra has an editorial at Autism titled "Serving the underserved: How can we reach autism families who systemically miss out on support?"

Key factors that may make a family vulnerable and at risk of missing out on support include poverty, limited access to education, poor literacy, being subject to structural racism and other forms of discrimination and stigma. Families caring for a child with autism are more likely to be affected by poverty because the child’s needs may prevent the caregiver from generating an income (Minhas et al., 2015; Tilahun et al., 2016). In countries where (mental) healthcare is paid for out-of-pocket, seeking help may result in catastrophic payments, meaning that the costs comprise a very high portion of household income (de Leeuw et al., 2020; Gona et al., 2016). Families from lower-income households report poorer access to care (Bishop-Fitzpatrick & Kind, 2017) and poorer quality (Magaña et al., 2015) of care for their child with autism. Even when children are diagnosed and families are offered intervention, barriers linked to poverty (e.g. transportation costs) may prevent them from attending the intervention (Koerting et al., 2013) or having the time and capacity to actively engage with the intervention (Szlamka et al., 2021; Tekola, Girma, et al., 2020).

Low literacy is common in low-income countries but also affects vulnerable groups in high-income countries. Caregiver-reported screening instruments developed and tested in primarily highly educated families may not work as well in groups with limited literacy (Khowaja et al., 2015). Similarly, interventions developed and tested with highly educated caregivers may require adaptation when applied to families with low literacy and limited prior education.

Families with a cultural minority status in the country of residence may be less likely to access services and report lower satisfaction when accessing such services (Magaña et al., 2015). This is likely due to systemic factors. For example, clinicians may be less likely to recognise autism in ethnic minority children than in children from the cultural majority (Begeer et al., 2009) and in some contexts autism identification rates in ethnic or racial minority children (Begeer et al., 2009; Maenner et al., 2021) or children from Indigenous backgrounds (Bailey & Arciuli, 2020) lag behind identification in White children. Access barriers linked to racism may also be intertwined with language diversity. Latino parents living in the United States with low English language proficiency reported receiving poorer primary healthcare services than those with good English language proficiency (Pippins et al., 2007).

Stigma towards autistic people and their families occurs globally and across different cultures (de Leeuw et al., 2020; Han et al., 2022). In low-resource contexts where awareness of autism is low, stigma may be particularly strong (Tekola, Kinfe, et al., 2020). Stigma may affect how families interpret the signs and symptoms of their child, when and where they seek help (de Leeuw et al., 2020) and how they engage with intervention services (Guler et al., 2018; Koerting et al., 2013).