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Tuesday, February 7, 2023

Misleading Headlines

In The Politics of Autism, I write:

If the science were not confusing enough, its coverage in the mass media has added another layer of murk. News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. When the research yields mixed results, the media headlines can be comically inconsistent. Consider how various publications covered a 2013 study on the impact of in vitro fertilization:
  • RARE IN VITRO TECHNIQUE RAISES AUTISM RISK, STUDY SAYS
  • IVF PROCEDURES DO NOT BOOST AUTISM RISK
  • SOME FORMS OF IVF LINKED TO AUTISM, MENTAL DISABILITY
  • IVF, AUTISM NOT LINKED, BUT STUDY FINDS RISK OF INTELLECTUAL DISABILITY[i]
[i] John J. Pitney, Jr., “IVF, Autism, and Headlines,” Autism Policy and Politics, July 2, 2013. Online: http://www.autismpolicyblog.com/2013/07/ivf-autism-and-headlines.html; “Autism and IVF: More Contradictory Headlines,” Autism Policy and Politics, July 3, 2013. Online: http://www.autismpolicyblog.com/2013/07/autism-and-ivf-more-contradictory.html

A recent study found an increase in autism diagnoses in the New York-New Jersey metro area. The study took pains to note that the change largely reflects greater awareness and improved diagnostic techniques.  News reports, however, generalized the results to the entire country.  Although most of the media articles mentioned the likely reasons for the change, the headlines often suggested that true prevalence had increased.  

Autism is not necessarily becoming more common.  Rather, we recognize it more often, which is different.  

 WCNC-TV in Charlotte, NC:


Why is autism becoming more common?


Why is autism becoming more common?


Let's connect the dots.

Autism spectrum disorder is a developmental disability that can cause social, communication, or behavioral challenges. New research from Rutgers found autism rates tripling in 8-year-olds since 2000.

Now, one in 44 kids across America is being diagnosed with ASD and
that's because there's a greater awareness of the disorder, as well as improvements in diagnostic tools and education.

But one thing is for sure, the CDC and National Academy of Medicine found no evidence autism is caused by vaccines. The surge in diagnoses comes during a nationwide shortage of special education teachers and staff.

The pandemic is also making things worse as parents were less able to get their children a diagnosis or assistance. Experts warn that could have more long-term consequences. They add early intervention can be key to helping autistic kids and folks with other special needs reach their full potential.

Sunday, February 5, 2023

RFK Jr.'s Antivax Group Expands Activities in Europe

 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.

This new EDMO BELUX investigation analyzes Robert Kennedy Jr’s anti-vax movement Children’s Health Defense efforts to expand its activities in Europe.  Read the study here.

Executive Summary

  •  The Center for Countering Digital Hate identified Robert Kennedy Jr and his organisation as one of the 12 influencers playing a key role in spreading English-speaking anti-vaxdisinformation on Twitter and Facebook. 
  • In this piece, “anti-vax” will be used to qualify entities and people having a general hostility towards vaccination which goes beyond COVID-19 vaccination and is based on beliefs and claims which are not endorsed/approved by scientific public authorities. This can apply to online publications of unverified or distorted scientific results as well as false or distorted statements from public health institutions. 
  • Since August 2020, the US anti-vaccine group has significantly increased its presence inEurope, creating a legal structure in Belgium and organising events to spread its narratives all over the continent. 
  • These events also helped the Children’s Health Defense Europe build strong relationships with like-minded anti-vax activists, creating a de facto network of organisations and people collaborating, sometimes not transparently, to disseminate anti-vaccine ideas in Europe. 
  • Brussels has been central to the Children’s Health Defense Europe’s new activities. For example, the group has developed its lobbying efforts targeting the European Parliament, building up relationships with specific MEPs without being registered in the EU transparency register at the time of our study. It also organised two press conferences at the Brussels Press Club. 
  • Social media platforms’ efforts to limit the reach of Children’s Health Defense have been limited at best so far, especially in Europe, and the EU remains vulnerable to the influence activities of many questionable actors like US anti-vaxxers. 
  • It raises an important question: What can be done to limit the opportunities to manipulate public discussions around vaccines in the EU?
From the report:
The creation of a legal entity called “Children’s Health Defense Europe” (CHD Europe) constituted an important milestone for the expansion of the Children’s Health Defense’s activities in Europe. It was announced in August 2020 by Robert Kennedy Jr. during a press conference in Berlin, organized one day before one of the first major anti-COVID-19 restrictions demonstrations in the German capital. This entity was registered in Belgium as an ASBL (non-profit organisation) on August 27th , 2020, initially counting five administrators based in Belgium, Germany, Italy, and the USA, and presided by Belgian activist Senta Depuydt. Well connected with the international anti-vax movement, Senta Dupuydt participated in the promotion of the infamous anti-vax documentary “Vaxxed” in France in 2017, together with fellow British anti-vaxxer Andrew Wakefield. The Children’s Health Defense Europe’s board composition changed in April 2022. The new chair of the CHD Europe’s board is Catherine Austin Fitts, an American investment banker and a former member of the George H.W. Bush administration, who participated in many events involving the anti-vax organisation in Europe through her personal organisation called “Solari Inc”. Among the other main visible public figures of the organisation’s board, there is Orsolya Györffy, who was presented as the new acting Executive director of CHD Europe until December 2022. According to CHD Europe’s website, she is “intensely” involved in a second organisation called “Doctors for COVID ethics”.

Saturday, February 4, 2023

Autistic Adults, Unhappiness, and Politics

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

At the  Journal of Autism and Developmental Disorders, China I. Parenteau and colleagues have an article titled "Self-reported Everyday Sources of Happiness and Unhappiness in Autistic Adults." A total of 293 autistic adults between the ages of 18 to 35 provided open-text responses regarding everyday sources of happiness and unhappiness. Conclusion: "Overall, the wide range of sources of happy and unhappy everyday experiences highlights the importance of considering personal preferences in engagement with others and activities in treatment."  The study also mentioned the role of political events:

Though COVID-19 had not yet been declared a worldwide pandemic at the time of the survey (March 2020), it nonetheless was a source of unhappiness for many participants given the news coverage and increasing cases. The state of US politics was also mentioned quite frequently. This was reflected in their survey responses with the assigned codes “COVID-19” and “Politics” (e.g., “I am especially frustrated with the world’s governments response to this novel virus” (34-year-old woman; 28); “I am currently extremely unsatisfied with the two major candidates for president” (24-year-old woman; ID 287)).

... 

Besides the COVID-19 pandemic, adults on the autism spectrum also identified current political events as sources of unhappiness. This highlights the need for clinical providers to consider the broader societal contexts autistic individuals live in and the potential impact current events might have on their mood and mental health.



Friday, February 3, 2023

Triple Threat: Illness, Antiscience, and Anti-Semitism

 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.

UnfortunatelyRepublican 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. 

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

 At the Rambam Maimonides Medical Journal, Peter Hotez has an article titled "Global Vaccinations: New Urgency to Surmount a Triple Threat of Illness, Antiscience, and Anti-Semitism."

I am both a vaccine scientist and parent of four adult children, including Rachel who has autism and intellectual disabilities. My book, Vaccines Did Not Cause Rachel’s Autism, detailed and summarized the evidence showing conclusively that there is no vaccine–autism link, while offering an alternative narrative: through whole-exome genomic sequencing, Rachel’s autism gene was identified and compared with others like it.12 The backlash from antivaccine groups was rapid and severe. They launched a media campaign against me on the internet, encouraging threats through email and social media. Since I make no secret that I am Jewish, I eventually experienced first-hand multiple anti-Semitic statements and threats online (see Figure 1 for examples). Two themes predominated. First there were overt threats or expressions of hatred because I was Jewish. More frequently, however, there were hurtful attempts to accuse me (as well as my colleagues who vaccinate) of perpetrating crimes equivalent to those committed during the Holocaust. Antivaxxerslove their Nazi analogies, and I was ultimately compared to the infamous Dr Mengele because I am a scientist who conducts vaccine research, and because I “experimented” on my daughter by ensuring that she still received her recommended vaccinations despite an autism diagnosis. Later emails appearing in my inbox openly expressed their desire to see me hang after some sort of new-age Nuremberg tribunal (Figure 1, top left). I was not alone—a pattern emerged in which Jewish physicians and scientists who conducted vaccine research or advocated for vaccinations were singled out and targeted with Nazi imagery.13,14

 Nevertheless, our scientific community’s efforts to debunk vaccine and autism assertions may have had some beneficial impact, at times even taking some of the wind out of the sails of the antivaccine movement. But this also meant that, to continue, antivaccine groups needed a new angle, and they found it through extremist or libertarian politics. By invoking health freedom or medical freedom propaganda they found a political home and donor support.15 Although it may have begun in California with the passage of Senate Bill 277,15 which outlawed exemptions to school immunization mandates, health freedom propaganda found its greatest welcome in Texas where an antivaccine political action committee (PAC) formed, and vaccine exemptions escalated.16 In time, health freedom and antivaccine sentiments were embraced by many mainstream conservatives or their elected leaders.


 1 Robbins JB, Schneerson R, Anderson P, Smith DH.The 1996 Albert Lasker Medical Research Awards.Prevention of systemic infections, especially meningitis, caused by Haemophilus influenzae type b. Impact on public health and implications for otherpolysaccharide-based vaccines. JAMA 1996;276:1181–5. CrossRef

2. Hotez PJ. “Vaccine diplomacy”: historical perspectives and future directions. PLoS Negl Trop Dis 2014;8:e2808. CrossRef

3. Hotez PJ. Immunizations and vaccines: a decade ofsuccesses and reversals, and a call for ‘vaccinediplomacy’. Int Health 2019;11:331–3. CrossRef

4. Wiesel E. A Jew Today. New York, NY, USA: VintageBooks; 1978.

5. Madsen KM, Hviid A, Vestergaard M, et al. A population-based study of measles, mumps, and rubella vaccination and autism. N Engl J Med 2002; 347:1477–82. CrossRef

6. Smeeth L, Cook C, Fombonne E, et al. MMR vaccination and pervasive developmental disorders: a casecontrol study. Lancet 2004;364:963–9. CrossRef

7. Jain A, Marshall J, Buikema A, Bancroft T, Kelly JP, Newschaffer CJ. Autism occurrence by MMR vaccine status among US children with older siblings with and without autism. JAMA 2015;313:1534–40. CrossRef

8. Uno Y, Uchiyama T, Kurosawa M, Aleksic B, Ozaki N. Early exposure to the combined measles-mumpsrubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder. Vaccine 2015; 33:2511–16. CrossRef

9. Taylor LE, Swerdfeger AL, Eslick GD. Vaccines are not associated with autism: an evidence-based metaanalysis of case-control and cohort studies. Vaccine 2014;32:3623–9. CrossRef

10. Madsen KM, Lauritsen MB, Pedersen CB, et al. Thimerosal and the occurrence of autism: negative ecological evidence from Danish population-based data. Pediatrics 2003;112:604–6. CrossRef

11. Olive JK, Hotez PJ, Damania A, Nolan MS. The state of the antivaccine movement in the United States: a focused examination of nonmedical exemptions in states and counties. PLoS Med 2018;15:e1002578. CrossRef. Erratum in: PLoS Med 2018;15:e1002616. CrossRef

12. Hotez PJ, Caplan AL. Vaccines Did Not Cause Rachel’s Autism: My Journey as a Vaccine Scientist, Pediatrician, and Autism Dad. Baltimore, MD: Johns Hopkins University Press; 2018. CrossRef

13. Orac. Can antivaccinationists knock it off with the autism Holocaust analogies already? Respectful Insolence. May 30, 2013. Available at: https://www.respectfulinsolence.com/2013/05/30/can-antivaccinationists-knock-it-off-with-the-autismholocaust-analogies/ (accessed October 1, 2022).

14. Orac. Holocaust misappropriation by antivaxxers: a form of Holocaust denial. Respectful Insolence. June 2, 2021. Available at: https://www.respectful insolence.com/2021/06/02/holocaustmisappropriation-by-antivaxxers/ (accessed October 1, 2022).

15. Hotez PJ. America’s deadly flirtation with antiscience and the medical freedom movement. J Clin Invest 2021;131:e149072. CrossRef

16. Hotez PJ. Texas and its measles epidemics. PLoS Med 2016;13:e1002153. CrossRef

Thursday, February 2, 2023

Disciplinary Removals



1,591,473

This is the total number of disciplinary removals students with disabilities experienced over the 2019-20 school year. Each removal represents a child’s time away from their typical learning environment: time away from their teachers, their peers, and their friends. For many children with disabilities, particularly those who find comfort in routines, it can be an uprooting and distressing experience. It is hard for a child to learn when they are removed from their class.

And yet, these data are not an anomaly. In fact, the number of disciplinary removals for children with disabilities has remained fairly consistent over the last decade (see Previous Civil Rights Data Collection Reports). I mentioned in my last blog, Discipline Discussions: The Impact and Harm of Exclusionary Discipline, we can’t suspend our way to better behavior; we must take a more thoughtful, evidence-based approach.

In the Office of Special Education Programs’ (OSEP) recently released discipline guidance package, the U.S. Department of Education called on State and local leaders to double down on their efforts to reduce their reliance on exclusionary discipline practices. Too often, disciplinary removals are seen as a first response to addressing challenging behavior rather than a last resort.

Our school discipline policies reflect our priorities. Let me explain more.

Of course, every school and classroom must clearly convey behavioral expectations to its students. This allows for creating safe, predictable learning environments for students and educators.

The systems we establish to address a child’s behavior reflect how we think about our children, their development and whether we prioritize understanding why a child behaves in a certain way so that we can address the root cause and work to prevent future challenges.

As the data noted above show, a common response to addressing challenging behavior is to remove a child from their typical learning environment. While removal may be warranted in selected situations, particularly those related to safety, removal alone rarely provides us with the true remedy we are seeking: to support students’ behavioral needs and minimize or prevent challenging behaviors before they occur.

I have heard from many educators that they feel underprepared to address the behavioral needs of children. They lack access to evidence-based practices and exposure to school-wide approaches anchored in proactive prevention. As a result, they feel they have few “tools in their toolbox” to call upon when addressing challenging behavior. With a lack of alternatives, it’s no surprise that a punitive and reactionary response of removal is commonplace.

How we support the behavioral needs of our children reflect how we value our children as learners and our educators as professionals. Let me be perfectly clear, if we value our students and school staff, we must support their needs; this in turn creates a more positive school culture and environment. Let us all consider, as a system, how we can connect, collaborate and impact positive change for those whom we serve. Collectively, we have the knowledge and tools necessary to improve outcomes.

Thankfully, we have decades of OSEP-funded research that shows the powerful impact of shifting toward a proactive, preventative mindset and establishing a framework of positive behavioral interventions and supports. Two OSEP-funded technical assistance centers focus on addressing the behavioral needs of children with disabilities: Center on Positive Behavioral Interventions & Supports (Center on PBIS) and National Center on Pyramid Model Interventions (NCPMI). I asked them to share about the power of preventative models of addressing the behavior of young children with disabilities (NCPMI) and school-aged children with disabilities (Center on PBIS).

Wednesday, February 1, 2023

QALYs

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families
People with autism and other disabilities have faced discrimination in organ transplants.  and the availability of ventilators.

 A release from Rep. Cathy McMorris Rodgers:

Eastern Washington Congresswoman Cathy McMorris Rodgers (WA-05) today announced introduction of H.R. 485, the Protecting Health Care for All Patients Act, which would expand access to lifesaving cures and prevent discrimination against Americans with disabilities. The House Energy and Commerce Committee Subcommittee on Health will consider the bill at a legislative hearing on February 1, 2023 titled: “Lives Worth Living: Addressing the Fentanyl Crisis, Protecting Critical Lifelines, and Combating Discrimination Against Those with Disabilities.”

“All lives are worth living. It’s unconscionable that a health care bureaucracy would so callously determine that someone’s life is worth less. They deserve every chance to have hope and reach their full potential,” said Rodgers. “The ‘quality-adjusted life years’ measurement is used to discriminate against people with chronic illnesses and disabilities, like cystic fibrosis, ALS, or Down syndrome, putting them at the back of the line for treatment. Moving this legislation will be a priority for our committee.

Rodgers was joined in leading this legislation by House Ways and Means Committee Chair Jason Smith (R-MO), as well as GOP Doctors Caucus Co-Chairs Rep. Brad Wenstrup, D.P.M. (R-OH) and Rep. Michael Burgess, M.D. (R-TX).

Background:

H.R. 485 would prohibit the use of quality adjusted life years (QALYs) in all federal programs—an expansion from the current prohibition that only applies in a limited fashion to the Medicare program.

The controversial metric intentionally devalues treatments for disabled individuals and those with chronic illnesses for purposes of determining whether the treatment is cost-effective enough to be paid for by the federal government. The use of QALYs is a clear form of discrimination. The bill would also prohibit the importation of price-controls from countries that use QALYs, which are a socialist trademark of government-run health insurance programs.


Tuesday, January 31, 2023

Racial and Ethnic Disparities

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

At JAMA Netw Open,  Bennett M. Liu and colleagues have an article titled "Racial and Ethnic Disparities in Geographic Access to Autism Resources Across the US."

Key Points

Question  Do autistic children belonging to minoritized racial and ethnic groups have access to fewer autism resources than White autistic children in the US and, if so, where are these disparities most significant?

Findings  In this cross-sectional study involving 530 965 autistic children and 51 071 autism services in the US, analyses by core-based statistical area revealed that American Indian or Alaska Native, Black or African American, and Hispanic or Latino autistic children had access to significantly fewer resources than White autistic children.

Meaning  These findings suggest that autistic children from minoritized racial and ethnic groups experience significant disparities in access to autism services, with certain core-based statistical areas having greater inequities than others, necessitating a prioritized response strategy to address these disparities.

Monday, January 30, 2023

Reawaken America

 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.

UnfortunatelyRepublican 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. 

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

Peter Stone at The Guardian:
A far-right project that has helped spread Donald Trump’s false claims about voting fraud in 2020, and misinformation about Covid vaccines, is trying to expand its mission, while facing new criticism from scholars and religious leaders about its incendiary political and Christian nationalist messages.

ReAwaken America, a project of Oklahoma-based entrepreneur Clay Clark, has hosted numerous revival-style political events across the US after receiving tens of thousands of dollars in initial funds in 2021 from millionaire Patrick Byrne, and become a key vehicle for pushing election denialism and falsehoods about Covid vaccines.

ReAwaken America also boasts close ties to retired Lt Gen Michael Flynn, who in December 2020 met with Trump, Byrne and others at the White House to plot ways to reverse Trump’s election loss. The meeting happened shortly after Trump pardoned Flynn, who was convicted for lying to the FBI about his contacts with the Russian ambassador prior to serving briefly as Trump’s national security adviser.

Clark’s project also has links to Dr Simone Gold, who served a 60-day jail sentence for illegally entering the Capitol on 6 January and founded America’s Frontline Doctors, an anti-vaccine group that has also touted bogus cures.

...

Flynn and Gold have made multiple appearances at ReAwaken America events, and spoke this January at a two-day gathering hosted at the Tennessee church of rightwing pastor Greg Locke. It drew other Trump loyalists such as the My Pillow chief Mike Lindell, Eric Trump, Roger Stone and Kash Patel, all of whom have appeared at other ReAwaken meetings.

Locke has attended a few other ReAwaken events too, and earned notoriety for calling vaccines “sugar water”, the pandemic fake, and holding book burnings.
...

Besides hosting Gold at its meetings, the ReAwaken website serves as a resource for vaccine naysayers. It provides information about jobs where proof of vaccinations are not required, and how to “request a Covid vaccine religious exemption”.

Locke has said that autism is a form of demonic possession

Sunday, January 29, 2023

Suicide and Self-Injuiry

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

 At Autism, Theodoros V Giannouchos and colleagues have an article titled "Suicide and non-fatal self-injury-related emergency department visits among individuals with autism spectrum disorder."  The lay abstract:

This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.

From the article:

Combined, our results suggest that while the high and growing suicide, and non-fatal self-injury rate in the United States is a concern for the entire population, it is a particular concern in the ASD community and notably among younger children and adolescents (Healthcare Cost and Utilization Project, 2020). Given existing documented issues for individuals with ASD in accessing needed care in a timely manner, many are forced to seek treatment from EDs that are often overwhelmed and not well equipped to address the specific needs of individuals with ASD (Muskat et al., 2015; Nageswaran et al., 2011; Nicolaidis et al., 2013). Our findings suggest that identifying ways to increase timely access to outpatient care—and mental health care in particular given the observed and increased prevalence of ED visits for mental health conditions among those with ASD which is consistent with previous work—is an urgent priority for individuals with ASD to provide continuous and supportive care and to prevent suicidal and non-fatal self-injurious attempts (Lytle et al., 2018). This is emphasized by previous work that found more than half of individuals who leave the ED after a suicide attempt never attend their first outpatient appointment (Lai et al., 2019). Increasing access to outpatient care will require policy changes to overcome both the shortage of mental health care providers in certain parts of the country as well as the large proportion of mental health care professionals who do not accept health insurance, such as expansion of virtual appointments, higher reimbursement rates, and reduced administrative and contractual complexity (Bishop et al., 2014; Thomas et al., 2009).

Saturday, January 28, 2023

Police and Autistic People

In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse.

Posts have discussed incidents in the following places:

This list is not exhaustive.  Indeed, it does not even scratch the surface.

Police training could be helpful, but we also need programs to evaluate the implementation and effectiveness of the training.

Friday, January 27, 2023

Better Care Better Jobs Act


A release from Senator Bob Casey:
Today, U.S. Senator Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, and Congresswoman Debbie Dingell (D-MI-6) are introducing legislation to expand access to home and community-based services for older adults, people with disabilities, and injured workers, while increasing pay and improving benefits for the caregivers who provide this life-sustaining care. The Better Care Better Jobs Act would enhance Medicaid funding for home care, helping many of the over 650,000 people on waiting lists nationally finally receive care in the setting of their choice, allowing them to stay active in their communities, and live independently. This legislation would also strengthen the caregiving workforce, improve quality of life for families, and boost the economy by creating good-paying jobs to make it possible for families and workers alike to thrive economically.

...
The COVID-19 pandemic highlighted the urgent need to ensure that all Americans have the option to receive quality, long-term care in the setting that meets their needs and preferences, and the vast majority of Americans prefer to receive such care and support at home. While all states provide coverage for some home care services, there are significant variations and gaps in coverage due to varying eligibility and benefits standards. The home care workforce—a majority of whom are women and people of color—earn a median wage of $13 per hour with few or no benefits while providing life-sustaining care. Roughly 18 percent of these workers live in poverty. This results in exceptionally high annual turnover rates, estimated to be above 60 percent.

The Better Care Better Jobs Act would increase payment rates to promote recruitment and retention of direct care workers, increase wages, and develop and update training opportunities. The legislation would provide support to the Centers for Medicare & Medicaid Services to conduct oversight and encourage innovation to benefit direct care workers and care recipients.

The Senate cosponsors of the Better Care Better Jobs Act are U.S. Senators Bob Casey (D-PA), Ron Wyden (D-OR), Chuck Schumer (D-NY), Patty Murray (D-WA), Tammy Duckworth (D-IL), Sherrod Brown (D-OH), Maggie Hassan (D-NH), Bernie Sanders (I-VT), Raphael Warnock (D-GA), Jeff Merkley (D-OR), Chris Van Hollen (D-MD), Kristen Gillibrand (D-NY), Sheldon Whitehouse (D-RI), Richard Blumenthal (D-CT), John Fetterman (D-PA), Alex Padilla (D-CA), Tim Kaine (D-VA), Dick Durbin (D-IL), Tammy Baldwin (D-WI), Tina Smith (D-MN), Ed Markey (D-MA), Amy Klobuchar (D-MN), Jack Reed (D-RI), Elizabeth Warren (D-MA), Debbie Stabenow (D-MI), Maria Cantwell (D-WA), Ben Cardin (D-MD), Cory Booker (D-NJ), Brian Schatz (D-HI), Angus King (I-ME), Martin Heinrich (D-NM), Mazie Hirono (D-HI), Jeanne Shaheen (D-NH), Peter Welch (D-VT), Chris Murphy (D-CT), Bob Menendez (D-NJ), Ben Ray Luján (D-NM), Dianne Feinstein (D-CA), Catherine Cortez Masto (D-NV), and Gary Peters (D-MI).

Read more about the Better Care Better Jobs Act here.

Thursday, January 26, 2023

Prevalence and Inequality

Autism rates tripled among children in the New York and New Jersey metropolitan area from 2000 to 2016, according to a study published Thursday in the journal Pediatrics.

The authors, a team from Rutgers University, calculated the trend by analyzing Centers for Disease Control and Prevention estimates of the number of children who've been identified as having autism spectrum disorder by age 8.

Although there is no medical test for autism, the CDC has established a network of 17 sites across the country that estimate autism rates based on a combination of formal medical diagnoses and records from schools and health care providers.

Nationally, the rise in autism rates has been similar to the trend in New York and New Jersey, according to a 2021 CDC report. One in 54 children had been diagnosed with autism by age 8 in 2016, compared to 1 in 150 in 2000.

Advances in diagnostic capabilities and greater understanding and awareness of autism spectrum disorder seem to be largely driving the increase, the Rutgers researchers said. But there’s probably more to the story: Genetic factors, and perhaps some environmental ones, too, might also be contributing to the trend.

Precisely what those other factors are is still unknown, but researchers are at least clear on one fact: Autism has nothing to do with vaccines.

"We know for sure, for so many years now, that vaccines don’t cause autism," said Santhosh Girirajan, an associate professor at Pennsylvania State University who studies the genetic underpinnings of neurodevelopmental disorders and wasn't involved in the new study.
“One of the assumptions about ASD is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in the journal Pediatrics. “This claim was supported by older studies suggesting that up to 75 percent of children with autism also have intellectual disability.”

“What our paper shows is that this assumption is not true,” Shenouda said. “In fact, in this study, two-in-three children with autism had no intellectual disability whatsoever.”

Using biannual data from the New Jersey Autism Study, researchers identified 4,661 8-year-olds with ASD in four New Jersey counties (Essex, Hudson, Ocean and Union) during the study period. Of these, 1,505 (32.3 percent) had an intellectual disability; 2,764 (59.3 percent) did not.

Subsequent analysis found that rates of ASD co-occurring with intellectual disability increased two-fold between 2000 and 2016 – from 2.9 per 1,000 to 7.3 per 1,000. Rates of ASD with no intellectual disability jumped five-fold, from 3.8 per 1,000 to 18.9 per 1,000.

Shenouda said there may be explanations for the observed increases, though more research is needed to specify the precise causes.

“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”

ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas.


Wednesday, January 25, 2023

Earmarks Are Good: The Case of Staten Island

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

Dr. Gracelyn Santos at The Staten Island Advance:
Congresswoman Nicole Malliotakis has announced she helped secure $500,000 for the Eden II School for Autistic Children as part of the federal government’s appropriations process.

Eden II will use the funds to renovate an existing building to expand day habilitation services for adults with autism.

“For nearly 50 years, Eden II Programs have gone above and beyond to support people with autism by helping them achieve their full potential through a number of educational, residential, and day habilitation programs,” Malliotakis said. “Serving more than 500 individuals across the New York City and Long Island communities, Eden II has become a leader in helping participants and their families overcome many of the challenges associated with Autism Spectrum Disorder